I have had ME/CFS for about 20 years now. It has robbed me of the possibility of having a career, a relationship, family, traveling... all kinds of things. I work a little, exercise a little, but everything wears me out. Thank heaven for my dog-- she loves me anyway!
Sounds like my story. I am so angry that life has passed me by. It has literally robbed me of a life. Doctors just ignore it and move on to something else. It's unbelievable. That they can literally, purposely avoid the topic ,chronic fatigue. I'm 53 now and I just have had enough of this life. If you want to call it that. I struggle day in day out for years. Pure Suffering if you ask me. People always say it will change. Try this try that. What else can they really say. Doctors are the same way. It's always eating right, exercise more, get more sleep. It's all bullshit. That works for people who aren't sick with some unknown disease or something. I have dreams, goals things I wanted to accomplish. All gone and so little time left. If you are young. Fight to find something that works and don't give up. I know it's hard, as I pretty much dealt with it. Having no answers in a way forced me to deal with it. Doctors are dumb. They only know what was already written, discovered. nothing more. basically imposters. We have all that information doctors think that make them valuable. Right here on the net.
At least we have our pets by our side ❤ - CFS is a terrible illness, and we don't get much support, but our animals can still bring us so much joy and comfort. I hope you and your Dog are doing okay years later.
I have M.E. I am a single mum so when I was bedbound, with eyemask and ear plugs etc, all the severe symptoms, my two daughters could not live with me for four years and I had to have full care. It was purgatory. My parents still do not believe I have M.E. The disbelief within the medical profession is unacceptable, and adds to families not believing.
I’ve had ME/CFS almost 4 yrs. Only the last yr or so Some of my family realized that I am sick. I gave up trying to convince them. That took Way To Much Of My PRECIOUS ENERGY! Thank You for ur kindness
suzie wong sorry to hear that :( keep seeking solutions & trying to improve your life. I’ve heard that the carnivore diet and conversely a vegetarian diet has helped different people.
suzie wong I’d try going in the other direction in that case. Or at least I’d try the Ketogenic diet first. Then possibly move towards carnivore after that. Keto is high fat, moderate protein, low carb (20g per day or less). I’ve had chronic fatigue type symptoms for years, and tried it last year & found my energy levels improved. You do have to go through a few days of ‘keto flu’ symptoms first while your body adjusts to fat burning instead of glucose but if you can get through that you might find it makes a difference. Fatigue is v debilitating & depressing. There are lots of people doing keto on youtube you can follow, or books to read. ‘Going Keto with Casey’ is a good you tube channel, there are lists of books www.ketogenicsupplementreviews.com/blog/best-keto-books/. Mikaela Peterson’s story on you tube is also inspiring, although she was faced with chronic arthritis & depression rather than ME.
@@universaltruth2025 thank you very much for your information. I will definitely look into it and I truly hope something works for you too. Living the way we live is barely living at all. I just really hope it works for me as well.❤🙏❤
Its 2020 my neighbor has cfs/me and can no longer work. Her disability has been denied. This is unacceptable and disgusting that people are being treated like this. The world needs to change and fix all these awfull diseases that people suffer from.
Try to get have ur neighbor get a pro-bono lawyer and fight it out in court as many times as u can. SSI is just bad they deny alot of ppl. Even some ppl with MS , or ppl with no legs , wheelchair bound etc. There just really bad o.e.....So , u usually have to fight for it. Just in case u didnt know XD but i know its been over a year but ^-^ Goodluck to u and ur neighbor.
@@jessicapace9689 The cognitive dysfunction is very strong in a SS court hearing! Having a doctor that specializes in ME/CFS/Fibromyalgia that will give a “taped” testimony is also very strong on their behalf! Praying for you! 🙏💗
Same here no disability and the resources needed to fight we do not have because we have no $. The Dr's don't care and frankly most of the world doesn't care. It is sad and disgusting. Thank you for believing her we need more pl like you🥰🥰🥰
I'm severely affected by M.E. Please believe us. I'm 49 and diagnosed 15 years. Had first collapse about 18 years ago. I fight every day of my life. Thanks for this documentary.
20 years. Almost punched my gyno in the face last week. Doctors should be ashamed of themselves the way they treat us, it's insulting and dehumanizing.
@sidgdansk only thing you can do is realize they are idiots and become your own doctor, scientist and guinea pig. I work very hard to let go of the anger. It is a never-ending process. Malpractice indeed, I have stories on stories and not just with CFS. I am ever evolving, learning eveey day to focus on what can be done rather than what can't. I only use doctors for labs, bexiaeoI can't afford out of pocket and that alone is a fight. Do not depend in them for anything. We are many years away from modern medicine being able to help, much less cure. Best of luck my friend.
@Han Louise I’m so sorry. I have all symptoms of ME and feel this same way. I am not diagnosed yet but have several tests coming up this next week. I believe you and support you. You are not alone. Sending love.
Instagram is really good to get support, there’s lots of people that have it and share their lives. It has helped me feel less alone with it all. Everyone is so nice
I'm also an ME sufferer although not as severe as many in this video. Thank you so much for this documentary. The hardest part of my disease has been dealing, not just with medical professionals who don't believe me, but coworkers and friends who think it's all in my head. It's so hard to deal with the illness, and this is only made worse when you feel there is no support around you.
hi! ME sufferer here, i was diagnosed this year (im 14) and ive struggled with jt since i was 12. i know ive only had it for 2-3 years and im not as terribly affected by it as the woman in this video but my heart goes out to everyone who has to live with it, and i cannot imagine how difficult it is for people who've had it for over 5 years. and i wish you the best too. keep fighting! you got this ❤️
@Ina Fi you are so right! i feel like i have gotten a lot stronger the past 3 years- mentally of course. and i no longer get so worried about the smaller things like school and homework, ive slowly realized that i cant cope with school and i have to actually look after myself. which is okay! my health comes before school. but i am slowly trying to teach myself school in a way i can manage. i wish you the best too!
My family are the ones who don't believe me because they don't live in my house and only see me when I'm pushing myself to do things. I've been vomiting almost every day for almost 2 years now... On top of the cfs/me, TMJD, Fibromyalgia and a rare type of bipolar spectrum disorder. I get to see the gastro doctor in a couple of days, with suspected Crohn's disease. An urgent referral meant I waited 4 months since referral to see him in the private system. I had to convince my doctor that something is wrong physically which took years of visits. Since February I have lost more than 5 kilos due to spewing. I'm now at a point of being scared to eat or take medication because almost all the time it comes back up. Because I live alone and do everything in my power to not be spewing or pooping myself in front of anyone my family then refuse to believe me. They have told me I'm exaggerating and doing it to seek attention or it's the bipolar talking. I feel this is such a common experience for people who have suffered the symptoms. Only recently have I found a few people who have said "I believe you" as soon as I have told them my experiences /story. It gives me hope. Blessings from South Eastern Australia, Dot
I was diagnosed last year when I was 14. I’ve had to leave school, I’ve recently lost everyone, all my friends and my boyfriend never bothered to support me, so I’ve had to cut them off, I couldn’t deal with that treatment. I don’t have anyone else except my mum who I live with. I go out about once a week maybe, if I’m lucky. I don’t talk to anyone, I don’t have siblings and my dad hasn’t lived with me since I was seven. I already had depression and was suicidal, but now it’s so much worse. I’m getting help after a long time, but it’s not much. To everyone with this illness, I think about you all everyday and I don’t feel as lonely :)
@@rosiem3984 Hi, things have very much improved since I made this comment. I'm doing my GCSEs and I have a predicted A* on my art course. I still don't have any friends but my mental health is way better. Thanks so much for this comment, it means a lot. :)
hi was diagnosed with ME this year and im 14! only a year younger than you. ive had it since i was 12 and its been the most difficult 2-3 years of my life. ive lost friends too, ive been bullied for it- its just the worst and i know how you feel. i wish you the best and i really hope you recover soon! we'll keep fighting together ❤️
Oh Dearest, sometimes our friends do NOT know how to support us, and that’s especially true in teenagers. I don’t blame you for giving yourself a break from that, but I hope you will be able to forgive them in time. They probably just don’t know how to help. I know that there are online support groups for most “orphan” diseases. So many groups! I hope you will find one that has people your age who you can connect with. Giving and receiving support can be hugely healing, emotionally. Please do reach out for that kind of community. We can (and often must) create our own extended families when we need “back up” for our own. Lots of love to you!
Ive been diagnosed for 21 yrs now. It's worse with each day. Thank you for this documentary. PLEASE, continue for those that can't speak for ourselves.❤🙏❤
21 years!??? im so sorry, ive only had it for 2-3years + im still a kid- and i can barely deal with this, but i cannot even imagine the struggles youve had to deal with! my heart goes out to you. keep fighting ❤️
I am 22 years young. Last year my body started giving up on me... constantly tired, my muscles in my legs where weak and constantly cramping, I could barely remember anything from the day before and my mind has been foggy, had zero appetite, stomach cramps, my eyes started feeling overly sensitive, HORRIBLE chest pains, struggle breathing. The list is LOOONG. Visited MULTIPLE doctors, many tests were done and the doctors did not find anything irregular. When Hannah said no one believes you, i felt emotional because that's exactly how I felt. People could not understand what was going on, and eventually I was put on antidepressants. It's been 3 months now, some of the symptoms have been gravely reduced - they said it was all in my head. Some days are better than others, but I sure hope I'll be able to get my life back. I miss being young.
This is literally the only time anyone has mentioned muscle spasms as a symptom of CFS. I thought it was just me, even my doctors didn't know what the spasms were caused by. This was helpful to see other people's experiences.
I have not been diagnosed with ME but I am in the process of seeing a doctor but from as far as I can remember I have always had weird muscle spasms and I was always told it was just growing pains, hopefully I’ll actually be given a reason for all my bizarre symptoms
The husband of Sophie is so caring. The way he’s so gentle and tries his best to understand her needs and asks her what’s okay. He advocates for his wife and explains to people coming in. Get yourself a husband like Phil!
I TRUly beleive that havn SUPPORTIVE UNDERSTANDN CARING LOVING family is imperative in helpn us with M.E.(CFS) bcoz its a bad enuff health issue by urself it can be an apsolute GODSEND to have support in any which way and know there is at LEAST 1 person u can rely on 100% to help u cope n manage.I am a carer for my close friend n neighbor n I do it to my BEST capabilities just about so tht gives me the incentive to keep going but its a struggle I must say.My friend has severe rheumatoid arthritis so she struggles and relies on me pretty much for EVERYTHING so as long as she NEEDS me I will be there for her despite feeln exhausted and fatigued most days.Personally I think i do tremendously well considering how i feel and i find it really hurtful n insultn wen certain spiteful individuals say i can't do my caring role sufficiently wen I go abuv n beyond wot is expected of me! A bit of understandn n kindness wuddnt go amis from those who slag me off! It's all down to certain nasty negative individuals who hate on me for past reasons going round my local area saying un-nesscery hurtful untrue things makn me out to be something i am Not! Bout time they shut up n showed a bit of COMPASSION n EMPATHY INSTEAD of just being nasty n cruel towards me wen ALL i do is try n help my friend whilst at the same time lookn after MY wellbeing too!
I had no idea what ME/CFS was until I found this video. It’s heartbreaking and interesting. To be heard and not believed is something I understand completely, but to not believe physical symptoms and signs is insane-and then referring people to psychiatrists and them saying what they said?! It’s insane and I pray for anyone who suffers from this and hope there’s some way to manage and cure this. God bless you all. Thank you for educating those of us who have never heard of illnesses like this. ♥️
Thank you Tyller, for being interested, and for caring. ME is probably the most stigmatised and misunderstood serious, common disease in the world today. I wish you well and God Bless too in whatever issues you may be facing.
Great documentary, I was diagnosed in 1989 with ME. I am now 54 and currently experiencing a crash, hence TH-cam surfing. I managed to get 80% most of the time. Had glandular fever for 2 weeks in bed at the age of 10, but me developed in my late teens. Missing out massive chunks of life in dark rooms, I lived to the max when I could. Can't even begin to think about the suffering endured by those that are continually bed bound. I found nutrition and Tai Chi/Reiki really helps me keep a semi normal life after having to adjust my life dramatically to cope. Love to all those suffering right now.
I'm 25 and have very recently finally been diagnosed with M.E after believing I had M.S. I've found it very difficult to cope with a 5 year old hyperactive little boy, and an 8 month old boy too. I sometimes have suicidal thoughts when things are very bad. But hearing you improved after a few years makes me feel hopeful.
I am one of the lucky ones My ME is not severe, but I have it. Sometimes I think maybe I'm making it up, perhaps it's just me vying for attention...... but the pain I feel is so real. If I had a penny for every time people have told me to just 'get some fresh air' or 'do some exercise' then I would be a millionaire. Working a part-time job is a struggle, it's exhaustion in every single way, but I can't just NOT work. I don't suffer with digestion issues, I've never even heard of that being a symptom.
When digestion issues, widespread pain and stiffness, migraine, and anxiety and/or depression are present then diagnosis leans more towards Fibromyalgia . Sometimes both
Mine are off and on and that scares me. I was diagnosed with FMS and I was told that, that is the same as CFS. It's just what acronym that doctor I had was more familiar with. I don't know what is the truth is anymore.
I have been teaching English online but I lost my job after some absences. You could try it too and work from home on your computer. You will need a degree and a TEFL though.
I dream of working again. And of having friends again, perhaps even a partner. For now it's my mom and my dog who sometimes I need help with. Can't imagine having a child. One thing about getting this at a young age was that it stopped me from having children. Some may be upset about something like that, but I'm thankful for it. I'm 49, finally making some progress with a lot of research, detoxing, fasting. I believe in a year I can put these 20 years behind me.
I have ME and fibromyalgia and the last year has been tough. I feel so sorry for anyone with ME with children. It has to be so hard emotionally knowing you can't be the parent you probably hoped to be.
It really really is. And one of my kids is nonverbal and special needs. Sometimes I don’t know how I can go on, but at the same time I love being a mother. I will never give up!
What an incredible documentary! I have been sick with ME since 1988 when I got sick at age 14 from an acute viral infection. I have been disabled from this disease for 35 years. In my sickest years as a teenager and young adult, I was bedridden and had to use a wheelchair to even attend doctor appoint or be taken for a walk around the block for fresh air. Fortunately, in my later twenties I improved somewhat and could participate in life “part-time.” I am now 49 years old and I am amazed that I have been able to still have a fulfilling life despite the ongoing pain and illness I endure daily. But the only reason I am still here and didn’t give up and be lost to poverty and taking my own life is because of the support of my mother and my identical twin sister. They have looked after me, believed me, and supported me - emotionally, physically, and financially. I am just overwhelmed imagine life without them and thinking of all of those who are suffering without supportive family and friends!!! Thank you for continuing to spread the message of ME and the need for research and education! ❤❤❤
I had this in 1984 but gradually got fitter gradually over years never completely recovered but found ways of coping and lived a life where I worked but hid that I'd be ill and managed my life that way. At least I had a life. I got covid in 2020 and I'm right back where I was in 1985. My heart goes out to all those affected by this awful disease. Can't believe that it's still so hard to get help or be believed.
my mom has M.E, she is the most wonderful and strongest woman I have ever known. I grew up with not too good conditions, but mom always made sure to keep them away from me. She used to be able to stand back then, she used to be able to look at a screen without getting dizy, she sued to be able to sit by the table while eating, she used to be able to talk in the phone for more than 30 seconds before getting exausted and fever-y. She already suffered from depression and grew up being mistreated both by family and by state. She fighted away drug addicts away from our family's connection-lines and she did so much to make sure me and my sister wouldn't fall into the same path she did... I don't know how to explain the feeling of fear seeing the woman who once used to walk you to day-care, now when you're in college can't leave her own bed. I am extremely worried for her because especially the past 3 years it's really been going down hill. The heatwaves here in Sweden the past 2 summers had her body get panic attacks. She escaped to norway last summer to her sister because it would be cooler there, and when she came back she was able to walk, she cooked and I constantly came to her like "MOM no you're going to get bed bound!!" because I didn't understand how big of a difference and what a positive effect the weather there had on her body. However now it's winter and she is bed-bound again because it's too cold. When I hear people wo have M.E, and then got better, I just hope for my life my mom also will get better. It's really worrying when you have talked to your own mother about suicide because you've had nightmares of her killing herself because she simply can't cope it anymore; and that while talking to her about it, she is honest and explains that yes, she is suicidal, but she would never do it to herself because she knows me and my sister couldn't cope that... I really am greatful she has her boyfriend (would be husband, but if they got married, that would prevent her from getting daily service help by the state because 'her husband can take care of her' despite him working so hard to earn money for both him and her). And for ANYONE who DARES to say this illness is bullshit.... FUCK YOU I HOPE YOU BURN DEEP DOWN IN HELL BECAUSE YOU ARE DENYING SO MUCH SUFFERING NOT ONLY AFFECTING THE ILL PERSON, BUT THE PEOPLE AROUND THEM!
You are amazing. I am so sorry that your life has been so difficult. I also have spoken to my son about ending my suffering but I would never do it by my own hand because of my son and my mother. They are my only family I have. I certainly don't want my son to have to care for me. I pray that God will take me before I get to that point of needing help. I don't even have the energy to find help like this hospital and doctor. The U.S. medical community simply don't care.
There should be a public inquiry into those unethical psychologists that took decades worth of funding, and the medical insurance industry who also benefited by not having to pay out patients, as they claimed ME/CFS was psychosomatic. Together these charlatans intentionally kept biological/medical research to a minimum via misappropriated funding by producing statistically questionable research results. Those results scared off biomedical researchers into avoiding looking at ME/CFS, leaving patients to suffer years longer than necessary. The whole thing is utterly appalling and ultimately greed driven.
I don't think it's even about money. It's part of a long tradition to assume 'hysteria', especially in women, when doctors are faced with something they can't explain. Most doctors accept what they are told in their textbooks, which as a cause hasn't been found yet, is that it doesn't have a physical cause. It's really common for doctors and scientist to dismiss what they don't understand, because 'if I can't explain it and don't have a test I can diagnose it with, it's not real' is a lot easier on the ego than 'I don't have a clue, I need to think independantly and if I want to help come up with a new theory'. In reality, ME is complex and generally has many contributing causes which can be different for each person. Treatment needs to be holistic. All of this doesn't fit well with the western medical model. Dr Myhill and the Optimum Health Clinic have good treatment information though.
Your comment is incredibly incorrect. They legitimately dont understand what is going on, so with nothing documented, what can they do? That's like blaming psychiatrists who used to use shock therapy, or a WWI surgeons who didnt know about sterilization and cleanliness during operations for not knowing. Lack of knowledge and education doesnt mean we blame providers for trying to find out what's wrong, the literature says it doesnt exist and it may be a mental condition so that's what they try. What information are you basing this greed and theft on? Did we watch the same film? Yes, physicians do not really understand this disorder so they often dismiss it. Never does it say anything about them purposely denying it for financial gain? Your either incredibly oblivious or incredibly delusional.
@@jaynedavis3388 you realize this is in the UK right? That has the NHS, i.e. universal healthcare. This isnt America where healthcare is a business. The NHS is ALWAYS looking to save money. Thus your point on treating is more lucrative than curing literslly makes no sense.
It KILLS ME that most people around you STILL just think that everything is caused by depression and laziness! Or they just think you are bat shit crazy.
My wife had 4 children, also has ME/CFS , I did the child raising, but these events took her to near death relapses which lasted for many months to years, she still has ME/CFS.. the children have grown and left home, I am still her carer. but I see some improvements she has been ill these past 4 decades..(Australia)
It's been a while since I watched this short documentary and I forgot just how good it is. Kudos and thank you to Emma Donohoe. I hope she is still doing well.
I was diagnosed in 2003. I was a single parent. CBT did not help me really. Graded exercise helped when I worked at my own pace. Which was literally a minute on each machine e.g. bike, rowing machine etc. I changed my eating habits omitted sugar, gluten, dairy and I had also developed intolerance for nightshade foods. Fortunately my job allowed me to be flexible. I joined a local support group in the initial stages which helped. It's now 2018. My symptoms are not as bad as they were. Some have more or less gone. The underlying fatigue is still there and I am more in tune with my body now and meditation has helped also. My recovery to this point has been down to a deep strength inside that I never knew I had and my daughter and angels along the way . Even when I felt i had no strength in mind or body. I somehow kept moving forward. It is really sad that 17 years later and after watching this video...there appears to be little or no progress in terms of awareness, funding, treatment or finding a cure
Wondering if you, like many, had been overexercising before you got it? And did you get ill with anything like glandular fever at the onset? There seems to be a pattern here.
Hi Paula, thank you for your comment, I’m one blood test away from being diagnosed even though I think I’ve been suffering for about two years. I’m also a single parent to a 4 year old daughter. Sometimes I feel guilty that I can’t do much with her on the weekends but I still try my best and it’s like you said, even when I just wanna stay in bed, it’s just sheer will that keeps my going. Along with being a parent I was working 8-5 Monday to Friday but I recently had to quit because I just couldn’t cope. I hope to return to work in the future but right now I just need to concentrate on my health. Hope you are well. Xx
I will be shocked if Merryns cause of death is ME/CFS. I often go to the Drs and they say to me....its your ME, so we cant look into these symptoms! I say, yeh i bet when one of these so-called symptoms kills me, you will be quick enough to say....oh it was a heart attack. They won't put it down to my glandular fever ripping apart my body and me being given an ME/CFS diagnoses. Thank you to Emma Donohoe, I'm so proud of you for making this! And to any future studies please point them my way, I have so many war stories of my experience with ME you wouldn't even believe it. Even now, this coming Monday i have to face my dr who has been dropping my medication down forcing me to stop taking them. This is probably my 20th Dr, I have been told everything from them from since i got sick......go sit out in the sun! Another said go to bed with positive thoughts and in the morning you will feel better, my personal fav was a Dr who told me i just needed to take up drinking alcohol. I have so many things to say, the way drs have treated me has been nothing short of abuse and bullying. They have stopped my medications but funny enough, never my antidepressants, why? Because they think im nuts. It makes me so mad that i went through my medical notes and found test after test of negative results, Yet each test or scan always showed something i wasn't told, that to me was exactly what i was complaining of. I came down ill in 2006, yet was never told until i got my notes that i tested positive for the Epstein Barr virus. I didn't know anything was found. So here i am in 2018 a man in his 30s who had no 20s and no 30s at this rate, and im still perceived as nuts! Benefits and the Drs don't believe me, Yet i am a shell of a man. Did the drs care about my muscle twitches and dying of muscles? I have muscle lose everywhere, back, legs, shin, chest, arms and Even my tongue for crying out loud! Imagine how scary that is. i can't catch my breath, ever. Im always breathless. My heart pounds and when i try to stand i fall. My bones hurt deep inside, my joints changed. Bone formed on bone! My knees point out. my hip bone thickened, my fingers changed, my body clicks and crunches all the time! My knees bruise and lock up for no reason and the pain is unreal. I always feel like im aching, my joints on fire. My fingers, toes, and skin are now super stretchy and bendy. I have lived with what also feels like the flu for over ten years! Every single day, I pick up illnesses from people like no other, i can sit in a room with someone with a cold and catch it right there and then. That might sound crazy but i feel it affecting my body that fast. I know i sound nuts! But i know im not. I also have 100 little symptoms that i say are little, but when they flair, it can be the symptom i hate and hurts the most. Im well aware that no one is most likely reading this, but i wanted to write it anyway. I have never truly accepted my ME/CFS diagnoses, I see the way Drs look at me like I'm mental, Hell if that's true, then fine treat me as such and use kid gloves when talking to me! Why are they so nasty? I just hate this. I believe ME/CFS is a group full of unknown illnesses all chucked into one group, years ago i went to an ME group and in no time it became clear to me that people with ME/CFS/EPSTEIN BARR, LYME DISEASE, MASS CELL DISORDERS, autoimmune DISORDERS, and psychosomatic conditions were all given the name ME as their diagnoses. Its the reason why 1 size doesn't fit all with treatment. Lastly i will say, if only Drs could see the money i have spent on importing into the country tablets, supplements and also the long journeys to see people/Drs who said they had my cure, they might then see the truth that i am a very sick man who has done nothing but try to stop this illness killing me All i know is that i was happily working full time in 2006 and enjoy life, to someone who picked up a sore throat that just wouldn't go away, and spread throughout my body like a virus with bad intentions! From that day forward it would never go away. I lost all my friends, my money and most of my family! I couldn't see my sick grandad for years who i loved dearly, he died and i still hate myself so much now for not trying harder to see him! Yet the Drs in sync with the benefits symstem punish me and call me a lier at every opatunity. Only if they took the time to see me, instead i get a 5 minute apointment generally talking about why i dont work..... Noone speaks for the silant, until now. Thanks again.
I can relate to you. A lot of it is linked, but because a lot of people may only have one cluster of symptoms, it is hard to create a holistic treatment. I have had very poor mental health most of my life, and when I had those treated, and I started to stabilise, it was then that doctors took me seriously. It's a shame they didn't see it before, and put the tiredness down to depression, but there isn't enough funding to treat all at once. I hope you find a way to make life easier for yourself x
Thank you Matt, for expressing so eloquently what so many of us with ME/CFS are living through. The nightmare of having the illness compounded tenfold by the nightmare of not being believed, mistreated and even made fun of, through medical ignorance.
I may be way off here, but something you said suddenly made me wonder whether you could possibly have Ehlers-Danlos Syndrome. I don't know much about it, but I know it can often be confused with ME, or the two may possibly occur together. May be worth checking out, if you haven't already done so. I don't know if it's better or worse to have EDS or ME/CFS, but it's always good to know for sure what it is one's dealing with.
I did read this and this is what happens to us it's not right also if we have any other illnesses that comes into play on top they don't listen we all need to support each other I am seeing and listening only us with this know how it affects us we just want to be well we had full lives before this sport love and work and we want it all back your not alone
I am a doctor and I have ME/CFS. I was a senior paediatric trainee when I took an antidepressant (just one pill at the minimum dose!) for severe unrelenting depression with suicidality... and I became unbelievably sick. When my acute illness improved two weeks later I remained absolutely wiped, aching all over, and with intermittent spells of drowsiness and brain fog. There is so little support for this. Most of the healthcare professionals around me either don't believe in it or think it's a bit of tiredness and that I'm being precious. My career has ended; I got told that if I can't stand on my feet for 6-8 hours I shouldn't be a doctor. I've tried to kill myself a few times since. Hearing you read extracts from your journal was like hearing my own words. I really hope there will be a treatment one day, something that makes this hell better. All I can think of is that if I died, perhaps I would be reborn into another body and this wouldn't happen to me....
I'm so sorry you feel bad about your illness, I, too, am sad for all the things I wanted to accomplish, but I didn't and I still can't. I hope one day you'll recover from this and that you won't ever, ever have to go neither through this, nor through anything similar. Do you have anyone who loves and understands you, so you are not alone in this? I, too, hope that you get the help you need. Hold on, suicidal thoughts are hard to overcome, but I believe that you can do it. You probably know it better than me, but it's possible to heal, and it's never too late to continue a normal life. All the best! 🤗💗
@@MP-uo6qd I have a sensitivity to all drug doses; even paracetamol, I take at a quarter of the dose and get good pain relief from it. (At higher doses I get ill - I get headaches, high fevers and hallucinations.) When I took that particular antidepressant, about an hour later I started to feel really drowsy. That didn't alarm me too much, I knew it to be a common side effect. But another hour later I was not only feeling so drowsy I could pass out, I was also having the worst diarrhoea and vomiting I have ever experienced (I lost 3 kg in fluids in that evening alone), I was cold and grey/white to my elbows and knees, and I had chest pain and palpitations. Being a doctor, I didn't call an ambulance, because I knew they would only be needed if I had a cardiac arrest or passed out and aspirated on my vomit - so I called my parents instead and asked them to stay on the line and call an ambulance if I lose consciousness. After 2-3 hours the cardiovascular and gastrointestinal symptoms eased up and I was just extremely drowsy for another 8-12 hours. (I stayed awake because I still felt sick and didn't want to aspirate, but most people would probably have slept that stage off.) After that I experienced 2-3 days of severe dissociation and suicidality. Then I felt a little better for 24 hours, after that I was left with CFS/ME. The dissociation and suicidality persisted intermittently for a couple more weeks.
@@aesaphyr Sorry about your unfortunate experience. I didn't know you could get MECFS from taking drugs. I got ME/CFS after a big viral infection. Actually I recovered from the viral infection and I was ok for about 6 months and then I woke up with severe fatigue and brain fog. I don't understand why it took 6 months to start. But I recovered after 16 years and I was pretty well for 13 years and then last week I got a fatigue again but now it has almost disappeared again after 2 days. In the past I have tried antibiotics for mycoplasmas/intracellular pathogens and I have tried thyroxine and I have tried IV glutathione. I don't know if any of these helped me to recover or not but I did recover mostly like I said. I think it might be some kind of brain inflammation going on and causing the symptoms.
@@aesaphyr I am sorry to hear about your experience, I have a similar problem when it comes to medications. I always get side effects to everything I have ever taken depending on dose, although never severe. I can relate because in January 2018 I took a BP tablet for about 6 weeks and felt bad the whole time until I began to get tingling and sweating in my feet and hands and one day I woke up and my feet felt like they had been crushed, it was so painful I could not stand for longer than a few seconds. long story short the pain eased but then I developed fibromyalgia I had very bad pain especially in my feet and legs and upper back/shoulders. I had an MRI blood tests heart tests x rays nerve conduction studies, ultrasounds and they could not find anything wrong. I have found through research that ME CFS fibro and MCS are all caused by dysfunction of the autonomic nervous system. For me the pain has since improved overall but the anxiety, fatigue and other symptoms especially the weird heart symptoms and breathlessness is seems worse to me now. I am afraid that the doctors will try and put me on another medication which will make my problems worse and I don't want to see any more doctors because they either can't help or won't believe me. I know how it feels when you look back on your life and feel like you have missed out so much, regardless your life has value and your story helped me to see I am not alone. But no matter what don't give up hope, because there are people out there who have improved and or recovered fully. for me it was helpful to see a functional medicine chiropractor and also listening to testimonies of people who have recovered through various means. all the best to you
Thank you so much for this. My son is 24 and I believe that soon not only might there be reliable treatment but enough recognition that ME is an illness that he will feel ok to accept that it is ok to have ME and to ask for help. I am grateful that he is a lot better than he was in his teens. But the psychological damage caused through ignorance and judgment will last long after any physical symptoms are managed or cured.
I just passed the 38 year mark of having ME. I truly understand how you feel. When I moved to England to be with my husband I found the one doctor in all my years that knew what I was talking about. Instead of living either in bed or a wheelchair my husband and Dr Waldon helped me regain most of my dignity. I can walk with a stick and go up and down the stairs in my home...most of the time..)
Thank you for this documentary :) I was just diagnosed with M. E. I live in Ontario, Canada. I am 48 years old. I suffered for 2 years before my neurologist diagnosed me. Thank God for universal healthcare! The endless doctor visits and specialists... Scans, MRI's and blood work! Mine is not as bad as this. I have extremely sore joints so most movement is painful. I cannot walk without a walker because my balance is so off, feels like the ground is tilted. And when I do walk, it's not very far. Any exercise is exhausting. If I overdo it I'm down for days at a time. Having a long conversation is almost impossible. I can't find the words I want to say at times. Concentration is at a bare minimum. My head will hurt and I get dizzy. Only being in a reclined position is when I'm most comfortable- seems when all my limbs are being supported and not stretched out or pressure on them. Just before I got sick, I was in the best shape of my life. I was at the gym 6 days a week. I was doing home renovations as my work and I loved it. I just started taking CBD oil for pain and so far has worked ok. I am on other meds too which seem to help. I am thankful to have a wonderful wife and loving family and friends who are very supportive. I do pray that this goes away and I can have a normal life again. I pray for all you who are suffering from this illness
Have you looked into mold toxicity? Doing home renovation can expose you to dangerous molds that can cause chronic inflammation..Google mold toxicity symptoms
The same thing happened to me in my late thirties , after glandular fever . I'm now 50 and I'm much worse . I pushed through far to much and for far to long . My heart breaks for young people with this horrendous disease xx 💙💙
fibromyalgia and myalgia encephalomyelitis or C.F.S are a form of severe malocclusion that affects the limbic sytem the brainstem the masticatory and back muscle and also the spinal cord. thats I AM 100 % SURE THAT MOST PEOPLE THAT HAVE HAVE FIBRO M. AND C.F.S HAve A SEVERE CLASS 2 MALOCCLUSION i AM SURE OF IT, THAT THIS CONDITION CAN BE EASILY TREATED AND CURE WITH OUT USING any MEDICATION . I have treated a lot of patient suffering from this horrible and debilitating condition. the symptoms are different from each person ranging from severe migraine to spondiolosis , epilepsy , vertigo irritable bowel movement costochondritis, P.O.T.S ( postural orthostatic tachycardic sydrome) to scoliosis these ar some of the common symptoms that i encounter on my patient that i treated. DR. JESSE BAUTISTA
@Lucy in the Sky to Lucy i read your message to me my responsed to you is definitely i can treat your chronic fatigue syndrome and your fibromyalgia but your TBI it will be 1st to me THE TREATMENT THAT I DEVOPED DEFINITLEY INCLUDES PATIENTS WITH EPILEPSY but I havent tried the treatment with traumatic brain injury before all the patients that i treated with epilepsy has no history of TBI they just developed epilepsy during the coursed OF their suffering from chronic fatigue syndrome /M.E or Fibromyalgia . AND I HOPE YOU CAN ANSWER A COUPLE OF MY QUESTION 1) HOW LONG DO YOU HAVE FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME 2) DO YOU SUFFERED MENIERS DISEASED WHICH CAUSED VERTIGO IS THAT WHERE YOU GOT YOUR TBI, 3) ARE YOU SUFFERING FROM SCOLIOSIS, SPONDIOLOSIS OR LORDOSIS 4) CAN YOU ONLY SLEEP IN ONE PARTICULAR POSITION ONLY 5) DO YOU HAVE RINGING IN THE EAR LIKE BUZZING SOUND 6) DO YOU HAVE FROZEN SHOULDER 7)DO YOU HAVE SOMETIMES DIFFICULTY IN BREATHING and last maybe i can redirect you to my you tube up load its a testimony of one of my patient which i succesfully treated and inluded in the video are a short and brief explantion why do you developed fibromyalgia and chronic fatigue syndrome drjessebautistajr i hope you like it
@Lucy in the Sky I have read your response. With regards to your chronic fatigue syndrome and fibromyalgia, I can cure it. But with your TBI that caused your epileptic seizures, maybe I can minimize the frequency of epileptic seizure but not totally remove it. You can add me on my facebook account, it's Jesse Bautista (Beng Gian). Thank You!
I don't have this disease , but I watched afflicted on Netflix I was really interested. This is such a MAJOR DISEASE and I was so amazed I had no idea what it was. Honestly, it reminds me of HIV when it first came out in the 80's. I will continue to learn more and choose to raise awareness. Your such a brave, wonderful soul for going back in time to help others and explain this disease. Much love.
I got diagnosed with M.E. at the age of two years old. The symptoms it causes and the general disturbance to life is horrendous. Thank you for highlighting this in such a well made documentary
I've just been diagnosed by an immunologist at severe stage I've been ill for 10yrs now and this video has had me break down crying. Merins quality of life is very similar to how I experience mine, being bedbound, underweight, never awake, never eating, breathing problems etc. I get suicidal, everything I enjoyed stolen by my own body.... Prisoner. I am 35 and a mum of 4 aged 17, 16, 1e and 11. I don't get to see much of my kids each day at all and miss so much about it I've greived over it and still can't except it. I take 63 tablets a day now and have numerous health problems that e almost took my life several times.
Finding this video due to trying to learn about my friend s life without bombarding her with questions I now feel absolutely heartbroken now having a better understanding on how much day to day life is a struggle
Having Fibromyalgia with M.E. Is a difficult set of illnesses. Although we have a lot in common, you have to look at your own set of symptoms and de-stress as much as possible.
Some people have developed ME type symptoms after contracting Covid. This has sparked an interest into looking again at ME. It’s taken a pandemic to make people think that maybe this isn’t all in the mind. I’ve had it 38 years after getting Epstein Barr virus so if they research Covid ME maybe, just maybe they may begin to accept that it isn’t physiological....we live in hope!
I’m a teen with me/cfs. Thankfully it’s mild, but thinking about how much I struggle now I’m quite frankly terrified it’ll get worse. I’d give anything for a cure or at least better treatments. Much love and support for fellow sufferers💕
Thank you for this. I've lived 35 years with ME/CFS and didn't know there is a much larger gathering community of us. I didn't know what millions missing meant until this documentary.
May our Lord be with all the scientists and Doctors ,to find a cure for ME ,what a heart touching story , a lot of people do not no about this terrible desiese ,God be with all those fighting to over come this !
What a heartbreaking watch. I have ME/CFS myself and live life in a bed most of the time, occasionally a wheelchair or a sofa. I know how serious it can get and I'm thankful I can talk to and hug my loved ones and at least my mind has started to function a little. But it's nearly 2023 and where are we? Still no treatments, but closer than ever I hope. NICE guidelines updated and people starting to believe it's physical, but still many that cause harm and an even greater number that just don't understand at all. Documentaries like this are so needed. It's painful to watch. And for me I can already feel my symptoms flaring, lymph nodes swelling and headache starting. The inevitable result of feeling choked with tears and emotion. Because with this illness it can even be harmful to feel the grief.
I thought I had a type of chronic fatigue syndrome for many years, felt like I was dying. Turns out it was a sub-clinical sinus infection that went undiagnosed. It took 4 years to finally get diagnosed. They tested me for almost everything but nobody thought to look up my nose (the lining was very swollen.) My blood tests just showed an elevated WBC and C-reactive protein levels. All I needed was antibiotics and I never got it when I was at my worst. I suffered unnecessarily and I can never get that time back.
aly k By that time I’d given up and thought I was suffering from an incurable, mystery disease and had stopped going to the doctors for answers because they’d basically given up on me. But then after a long flight I got more specific symptoms of what seemed to be a cold but the cold persisted and caused very bad headaches so I thought that’s not normal for a cold. So I went to the GP and she looked in my nose and saw inflammation. I’ve been treated with antibiotics and steroids and although they helped, they haven’t completely resolved my issue. They said I might need surgery or to see an allergist. I still get fatigue for no reason (although it has improved) and mysterious joint pains at times which started when I got ill.
My symptoms started after a sinus infection. I always feel congested and my joints swell and always tired. Fortunately I made it through nursing school and work. But I have children and I’m always tired I can literally stay in bed all day. It takes all my energy to work and just feed my kids. My son said you’re always in the bed that hurt so much. But if I don’t paste myself I would be drained. I noticed it’s something to do with inflammation my glands are always swelling. It seems to get worse before my cycles. Idk if it’s cfs but Ik it’s not all in my head. Or maybe it is!
I wasn't sure what this documentary was going to be like..A lot of these kind of docus have good intentions when it comes to understanding M.E but don't always get there but this was pretty good.I thought it was a good thing that they followed some of the more severely effected people.I have experienced M.E in its more severe form and know how tough it can be. Hearing Merryn's story did bring me to tears.She seemed to have such a big heart and I feel for her family. I found it interesting that the doctor who specialised in M.E had suffered himself.I think sometimes having firsthand experience of CFS is the only way people can take it seriously. Thought all the girls who took part in the documentary were incredibly brave.I feel so crap about how I look right now that I wouldn't go near a camera. When I feel strong enough I want to write a book about some of my experiences to go some small way to helping people understand the illness better.I have always liked writing so I want to pour everything I have into my book. Thank you Emma for speaking out.To everyone reading this who has M.E or has posted here I hope things get better for all of us soon.Big hugsxxx
@@suesanson8876 I had it for 16 years since I was 25 then it just seemed to go away. I have seen on youtube that research suggests it is brain inflammation which seems to fit with the name and the symptoms. I was always able to work with my symptoms however. I was never bed bound.
I'm 55 and when I was in my early 30s was when my life started slipping away until now. I have no life and most of my friends are gone. There are 3 friends that have stayed with me even though I can't do anything normal. Two of the three friends knew me before I was really bad and they all say that I'm a shadow of the person I once was. God bless those that stay with your sick friend, girfriend or wives. Also for the few males, apx 3% in the U.S., that suffer from this type of nightmare. As I understand the men that get this are usually are hit very hard. I can't imagine how much worse it can be for them. 💔
It’s so sad, and today I found a random link on the NICE website that informs the NHS about ME; that says NOT to test for B12, NOT to test for ferritin, NOT to recommend supplements...to me patients. FROM NICE as body that also specialises I cost cutting advice... how can this possibly be justified, when both ferritin iron stores and B12 NEEDS to be ruled out at the very START of any symptoms.
The U.K. normal levels for b12 are too low, same thing for ferritin stores, which in the U.K. can be as low as 12. Compared to 40 in Canada. When any dr says your tests are normal, ALWAYS ask for copies of the results and look at the actual results.
Just been diagnosed after suffering chronic fatigue and digestion problems for over 6 months. Run my own business but have real trouble keeping up. My main problem is that I used to be driven, now I am energyless and it is getting worse. Did 3 hours light work today and now I have had it. Nothing helps, not even a sugar boost. So so frustarting.
Same. My energy getting worse these days. I get easily tired doing simple work. I am not depressed and still working but man it is like something drain my battery so quickly.
That was pretty good. Thank you! My only criticism is that they’d put a brief explanation of how the majority of government funding has gone to the psychs and that if broken down, that 3.5 million over six years for 250,000 plus patients is disgraceful. But thank you very much.
Excellent video content! Forgive me for chiming in, I would appreciate your thoughts. Have you considered - Dinanlinson Rebooting Health Approach (erm, check it on google should be there)? It is an awesome one of a kind guide for getting rid of chronic fatigue syndrome without the headache. Ive heard some super things about it and my work buddy after a lifetime of fighting got cool success with it.
There should be an inquiry into those psychologists that took all that funding and the medical insurance industry who also benefited, because together they both kept biological/medical research to a minimum. which leaving patients to suffer years longer than necessary. Truely appalling
SERB SIMULATOR - - - PLEASE DO NOT TRY TO SELL YOUR PRODUCTS ON THIS HONEST CHANNEL. GET LOST YOUR DANILINSON CRAP IS..PURE BS, YOU ARE LIKE A BEGGAR TRYING TO MAKE CONVERSATION WITH BS.. IT IS ABSOLUTE MLM BS CRAP, LOOK ME IS SERIOUS NOT SOME GAME YOU MORON, YOU DISGUSTING SLEAZY PROFITEERS HAVE NO SHAME OR MORAL COMPASS. STAY THE HELL OUT. SELL TO RUSSIANS. everyone else, BEWARE this Dinanlinson Rebooting Health Approach is utter BULLSHIT.
I have severe M.E since 10 years and I have been bedridden 8 years cause it. I had 9 months of very severe M.E in 2016. I am invalid cause M.E. Much love from Rome
Lavinia, I know that we get tired of hearing ideas and trying new things but at the risk of troubling you with one more I was able to get much of my life back and at least out of the bedroom that I was in for 4 years by performing at home fecal transplant. I took nearly a year researching how I could safely make capsules in a homemade lab. If you have any interest in talking about it let me know I'm not trying to profit at all I'm sure you've already lost all of your financial security. I just know how you feel and would be glad to help
@@diesel4125 I remember that desperation. I was even ready to end my life a few times, but I had kids I was still trying to raise that kept me alive. So glad I did, I cannot believe how different life is being on this side of that desperation. I don't ever want that to become a distant dream, it was the most significant part of my life. I wish you well on your journey Diesel.
I have chronic fatigue, POTS and EDS. I’ve been hospitalized for fainting in the past and am debilitatingly exhausted. Doctors have dismissed me for years and have done nothing to help my symptoms.
I have had ME/CFS for about ten years now. Self-diagnosed but I have had all of the symptoms and know it's what I have. Thankfully, I am in recovery now and the suffering has eased. But my heart goes out. Anything I can do to help others that continue to suffer I will.
For the past three years I've been treated for OCD, PTSD, agoraphobia, depression and anxiety since my dad died unexpectedly. I'm 41 with 4 kids but I'm really struggling. I'm really starting to wonder... the brand of fatigue I've been experiencing is debilitating. I still work part time as a nurse so we don't lose everything we've worked for but all of my time off is recovering in bed. I barely even eat because I get dizzy spells and muscle pain every time I get up. I'm afraid to mention it to my doctor because I don't want them to think I'm just trying to diagnose myself but I'm so desperate. This is the loneliest life.
Late response but have you found a diagnosis? Ill tell you that it is my impression from reading the research and knowing the disorder and being affected myself and seeing my online friends suffer from it that being able to work while having ME is not common but it is possible. I worked part time when i had minor ME..."minor" ME is not very minor in terms of how sick it makes you. ME is 3x more disabling than MS regading quality of life. I would highly suggest you stop working if you still are, because your body will possibly get sicker. That being said, it is important to keep whatever normalacy you can in your life, so if you want to work just be careful to avoid crashing. There is really a lot of different things that can cause bad fatigue, so i wouldnt be surprised if you had another medical issue. However if "exercising" consistently (always) causes major flares in your sypmtoms, i would continue to look into ME because not many other diseases cause people to collapse in bed for days, weeks at a time after exerting themselves minimally. Look into the other symptoms of ME....pain, malaise, fevers, POTS, MCAD, headaches, cognitive issues, immobility, flu like symptoms, intolerance of extreme temperatures, and of course sensory overload to name a few. Most people with ME have nearly the whole list, even at its "mild" form. ME is never just fatigue by itself and the list of other symptoms are just as disabling. Idk if your work requires you to stand up and be concentrating for long parts of the day but if you can do that, one could argue ME is unlikely, but i think very possible to have a minor version of mild ME...you could be "lucky" and not develop into full blown moderate or severe, or you could be totally bedridden by now as is what happened to me. You could also be pre-clinical in that you dont have the officially diagnosable disease yet but you are on route to that. The first thing you should notice is total inability to exercise anymore. Sorry i hope you dont mind me giving my unsolicited opinion or my two cents. I dont wish this upon my worst enemy but its better to have a diagnosis than to suffer from it with a doctor who isnt even aware or willing to entertain the idea.
Wow I have just come across your post. I was with my mother in law when she took ill and died. Due to a misunderstanding with the hospital we say her an hour after she had passed. The next day I got agroghobica, anxiety I have been treated for all plus ptsd.. I get dizzy spell when I get up and move, even having a shower I can get confused.
@@liamtoone8782 I'm so sorry! I just saw this! Thank you so much for posting back to me, even though I completely missed it!!!! You are so kind. I'm actually at work now 🤣 I'm definitely improved since 3 years ago but do still struggle with fatigue after minimal exertion but the fatigue is no longer being in bed all day to recouperate. Please tell me how you are doing! Again, so sorry I missed this. I only found it because another comment was just added.
@@ianferguson4439 oh my goodness, that is exactly what I went through. I am now doing much better. I still become very fatigued after minimal work but it is no longer debilitating. I used to also get really dizzy in the shower and would have to sit on the shower floor but it only happens occasionally now. I truly hope you feel better quickly.
@@carrielopez1728 I'm relieved to hear there is hope. Between the light and sound sensitivity and crowds. Not being able to watch TV as cannot follow stuff. Getting dizzy when I stand up
It seems obvious to me that M.E. is caused by people not having the support that would afford them the chance to rest properly during and immediately after an infection, so the body's defences against infection end up going wrong as they're placed under more strain, and getting into vicious inflammatory cycles which then become self-fuelling and thus autonomously perpetuated - a process of which we know little. I think the main reason M.E. is overlooked, brushed aside and blamed on the paranoid imaginations of the victims is that it's indicative of an economic infrastructure that knows it's pushing people to near breaking point, and that knows it frequently pressures people to choose between going destitute or being physically superhuman, pushing themselves through all their bodies' warning signals until they break. And then those people either have to find it in them to carry on without a break, or they have to get rehabilitated to go back to work ASAP, or they end up getting effectively tossed aside by the workplace as used goods (followed by government trying all kinds of ways to dodge giving them the benefits to which they are entitled as people forced to retire due to ill health). As soon as that vocational pressure is outright acknowledged as the cause, and as a nation-wide issue, there will be mass pressure to halt said relentless whipping-on of people. Without the productivity that whipping-on past sensible limits drives, the economy won't be able to keep growing out of all proportion, as it is right now with competetive employment/marketplaces, and people who have a psychopathic love of hoarding money won't be able to squeeze as much of the stuff out of the masses' work. They know, but to prevent that from happening, they pretend like it's any cause but that one. That pretence gets harder and harder to do as peoples' bodies suffer more, and the cause of that suffering becomes more and more obvious. But it's a denial that will continue to progressively ridiculous extremes, and, indeed, to the bitter end if allowed.
Oh My Good Girl, how did you get so smart? You're so 'on the MONEY', on this one. Thank you so much for taking the time to share this incite. So dam shamefully accurate.
Very true!! The thing about the economy growing is they are never satisfied! If it stops growing they call it stalled like it's a bad thing. They never say, ah we've reached our goal, that's fine. Also, they flog the dead horses by making them work weekends now too! I vowed to never work weekends but I ended up in two separate weekend jobs over many years. I've had cfs for 11 years years and now can't work at all. I have no people in my life because everyone resents me. I'm trying to get mobility pip back but it's taking a year so far. I give up. I'm 48 and I'm done with life. I'm constantly suicidal.
This documentary is very sad; however this has been very helpful. I was only informed that I had ME 1 year ago after suffering for quite a while. The first time I did notice my unusual fatigue in my teens after having glandular fever and then it progressed to Stomach problems, monumental headaches, Chronic pain and 'brain fog' in my mid 30's. I had no idea of what it was as the GP's kept diagnosing depression and I knew I was not depressed; although I had gone through another very challenging life changing event. It has effected every area of my life and this documentary has made me understand the physical issues now that were clearly present back in 2006. I want to say thank you to this lovely lady doing this documentary. I would love to talk to other people that are going through this, to share survival tips. I have really good days and I feel like in the main I am getting better; however it sneaks up on me and I never know when a relapse is coming. I do seem to have better days than bad, although it is always there.. My lifestyle is not the same though and I have had to learn how to manage with this horrendous illness; but I am learning to manage with it quite well. Love Debbie x
There is a test which proves the post-exertional fatigue in ME/CFS. It’s called a 2-day CPET (cardiopulmonary exercise test), where people with ME/CFS cannot repeat the results the next day, whereas ‘Couch potato’ controls can repeat the results. The 2-day CPET is not advisable for many ME/CFS sufferers, as it may cause a crash, sometimes a long-term one. It’s mainly used for research purposes, and to prove ME/CFS cases for disability insurance. Google ‘Workwell Foundation’ in California for more info. They would know where the closest testing center to you is.
Got it at 21 in 1975. Didn't get a correct diagnosis until 1995, by that time my life and health were a wreck. Nine major surgeries since then. I've had cobalt and chromium heavy metal poisoning from a metal hip implant that spent ten years dissolving into my bloodstream because the maker and surgeon both failed to notify me that there was a problem with that model. I had 600% of the safe level of chromium and the same level of cobalt which has no safe level. Good luck to those fighting it.
I am 62 in june I suffered with ME when I was 28 years old,sportsman into swimming,one day just woke up went and played 5 aside for my local council team played 30 mins and fell to my knees with excaustion,just blamed it onto my day job as I was a builder,never thought anything of it always tired coming home from work and going to bed early because of my tiredness.How I found out there was something wrong went to corfu with my sister ok first week everything normal the 2nd week I could not lay in the sun all my joints hurt ect,I went to doctor had all these blood tests he said im ok but I knew I was not,so I had ms test and it was not that thankfully,I had biopsy done they found out I had ME with roots attached to muscle tissue,they asked me in hospital have I had a illness in the last few years,I remembered and told them I caught measles off my daughter when I was looking after her,any bad illness can trigger ME as it destroys the immune system,after it destroying my marriage I decided to move to spain my symtoms got better still could not sit on beach.could not build or do anything physical so I employed men to work for me and I ran website and sold property,also spent last 3 years in corfu Greece had to come home could not walk on left leg and also could not afford medical treatment,Arrived in UK October 2016 was on plane with everyone either coughing or sneezing,I caught flu and was in bed for 2 weeks and 4 weeks all together before fine,Starting feeling weak again even went to London to pass my doormans licence also passed my CSCS exam,while I was waiting for a paper from Greece I was on jobseekers but was on that for 18 months,but during that time I was getting weaker,had xray on left leg nothing they can do until im older,9 months ago I was diagnosed diabetes type 2 I had no choice but to go on universal credit for my sicknesses ME,Diabetes and left leg,I have just changed doctors because he just laughed at me as if I was putting it all on,had accessment With UC and they said I was able to do some sort of work,I have since appealed and sent them medical proof.I am house bound and only go out when I have to,i cant walk far or stand in a que I need to sit down and rest,I live by myself I cant let another relationship suffer again,I cant get any help because I need to be in the UK for 3 years,So hopefully this October I can qualify for PIP which can help me pay for housework,also my new doctor will find me help for my ME
Last week I got diagnosed with ME/CFS. I was relieved to finally know what is making me like this!!! Im thankful that I am coming out of the worst of it. You mentioned Terminal ME. I hadn’t heard it was terminal until watching this. My Dr told me that there is no definite way ti diagnose it and no cure. Im on a quest to learn as much as I can about it!!! Thank you for sharing!!!
Fantastic documentary, giving the true insight into this very disabling illness, which nobody sees. What other illness would be questioned or not believed by the medical profession. It's so disgraceful how we are treated. I just wish these same people tried living with it for a week, they would soon change their minds!! Some of the strongest people I know are ME sufferers. ❤
Thank you for making this video. Thank you to those who believe and those who try to understand this illness. Heartbreaking for sufferers not to be believed and family gossip and think they want to lie in bed and see life pass them by. 😢
My heart goes out to everyone suffering with ME/CFS and other severe chronic conditions...I was hit by a car when I was 11 yrs old and have dealt with rheumatoid arthritis since age 12 and fibromyalgia since I was 15(though wasn't Officially diagnosed with them by a dr until I was 40yrs old and later was told that my CFS was just a " side effect of my Fibromyalgia").I have had CFS since I was 15 too and have only recently learned that it is a condition by itself( at the same time that I learned that my breast cancer is now stage 4).There has been so many times that Ive wished to die in my sleep.I have been dealing with crippling pain and endless exhaustion that has caused me to have unipolar depression. Been dealing with these pain conditions as well as degenerative disc disease longer than Ive been alive.Thank you for sharing this video and the struggles that ME suffers deal with.God bless you. Love from Maine USA
I was diagnosed when I was 15, now as an adult I still have issues, I was diagnosed as autistic in adulthood, the other issues I have are with fatigue, GI issues that don't fit IBS which health professionals constantly say I have, pain and subluxations in joints and odd pains in muscles, constant 'injuries'. It has been suggested I look into heads and it fits but most doctors know nothing about it. After much research I'm convinced there is a link between, autism, chronic fatigue/ME, fibromyalgia and EDS.
Laura Jaine there is also a link between eds and gastroparesis, I believe. That can explain some of the gi issues associated with not keeping down food
@@Ari_0451 yes I have read about this, I have finally been diagnosed with dysautonomia, I have neurally mediated syncope which is like POTS but it's my blood pressure that drops when triggered, so under the POTs clinic they have said I most probably have hEDS and Mast cell activation disorder, they are all linked.
Ive had severe ME for 9+ years and have found these help most to come back from PEM.. 1) Midday SUNshine on most of body as long as possible short of burning, even if I have to wear sunglasses or even an eye pillow, it is the single best medicine which seem to work as natural chemo, reduces infections more than anything else and I have sworn off antibiotics after years of work building my microbiome. 2) Bone Broth, it must have thick collagen with tons of beef, lamb, chicken, or fish fats; when I cannot hold food down the ones I often can are this and ghee-coffee or sometimes straight heavy cream as it is 100 calories per oz and easy to get down and is nutrient dense. 3) thc and cbd, I need mainly thc and it is the best for pain, sleep, nausea to eat, and general malaise. When I crash and have the vagus nerve gripping pain it helps most to lay on my stomach or second best is the R side, it seems to pool blood into the vagus but helps a lot. Best..
I, too, find relief from SUNbathing...exposing most of my body to noon day SUNshine for as long as possible. It's the only time I feel life in my body. It feels so good! I also find relief from pain and anxiety by floating in water...
yes sun produces little ozone...but ozone therapy will have much better effect. Ozone therapy is repressed from big pharma...it to cheap...they cant make money with it...
Holding on to hope and having people around you who say "I believe you" are two of things that help me deal with a complicated list of physical and mental health challenges (diagnoses and symptoms) that includes me/cfs.
frangitube yes my partner does. Whilst we don’t have a diagnosis yet. All the tests for everything else come back normal. We are 99.9% sure it’s M.E/CFS he also suffers with a stutter now. And the convulsions and body twitches along with the pain. He also stops breathing when he goes to sleep. Any one else suffer with that? It’s like his body forgets how to breath. Food as well at the moment every thing he eats he feels sick. I can’t remember the last time he ate a full meal. It’s sooo heart breaking and my heart goes out to all those who are suffering from this life destroying illness xox
Thank you for documenting ME /CFS. I was diagnosed with CFS and fibromyalgia, and I also have low thyroid. I am heartbroken for these young people. I was in my 40s when diagnosed, and it took many years of the process of elimination. My symptoms range from being bed bound to exhaustion, which is just debilitating. Headaches and pain in all my joints either can not sleep or sleep too much. Swelling, rashes, sensitivity to noise, bright lights, pain if someone touches me . Bruise easily, weird things like blood cell issues, rare conditions like ackenbach syndrome heart palpitations, dizziness, nausea, list goes on. My immune system is compromised. I was always active. Ballet, martial arts, horse riding, gym. Now I can barely walk. This is very real, and it is important we talk about it and educate people. This is not an invisible illness. This is a condition that takes lives.
M.E. is just a awful disease, I cannot imagine having to go through the disease and having people so heartless not believing you are really sick and not faking it. My heart goes to all of the people who suffers from M.E's
I also have M.E/CFS . I used to work full time be A social person A good mother but now i barely leave my house on the worst days i cant even hold A cup or even keep my eyes open. Im lucky as I do have A wonderful partner who does everything for me. Its such A life changing illness
This is the first time that I have been able to watch about Chronic fatigue syndrome and feel like I'm not on my own with this and that one day hopefully their will be more that'll be able to be done to help people who have this horrible condition I'm currently starting with a crash and what they say about getting a wash is so true you feel better for being clean but then you feel awful and by the time your recovery has passed from getting washed your in need of another wash Hopefully programs like this will help get the word out and more will be done to help those of us with this horrible condition
You can say to patients what’s happening in their bodies. Mitochondrial dysfunction Autonomic nervous system dysfunction HPA Axis dysfunction just to name a few. Science has proven these things time and time again.
Seems like Ron Davis and Dr. Fluge found that pyruvate dehydrogenase is impaired. That means the glycolitic pathway is nearly shut down. I honestly don't know how having glycolasis being shut down hasn't killed us. Also I heard one of the O.M.F MDs say in Australia they are just now finding that there is ion channel dysfunction in ME/CFS. In the past year it seems in many cases there is an autoimmune component. Something with neural autoantibodies if I recall. Also tons of inflammation, which can be objectively measured with test looking at hsCRP and PGE2. Very last thing I promise. Downstream from the inflammation a nasty neurotoxin called quinolinic acid builds up. It can give you suicidal depression, serious cog problems and even cause mild neurodegeneration. All three of these test were extremely elevated in my results.
Long time suffer & Finally Diagnosed Correctly by the best, after 8yrs of being not believed & Drs not having a clue. Excellent Emma & for you to say M.E & not cfs is help alone.Cfs is only ONE symptom of M.E.I cried throughout entire video & also reading peoples comments. Sadly today is March 2023 & Worldwide STILL the race for a diagnostic, treatment & cure continues. 5yrs after this Video & really nothing much has changed & funding desperately needed never granted due to the stigma around this SEVERE devastating,debilitating Disease. Wishing us all to be treated with dignity,believed & find & Dr who knows about M.E. Very sadly my Amazing Dr passed away & now I find myself my own Dr.yet again. 🍀❤Have hope ALL there, are Brilliant scientists, Drs. of every type working tirelessly around the World to find the answers❤🍀THANK YOU❤for this honest,yet sad video❤
I believe I am suffering from ME/CFS. Unfortunately I also have other health conditions which means my doctor seems to refuse to acknowledge or investigate.
Keep pushing, I eventually got a diagnosis of fibromyalgia after suffering from coxsakie virus for months. I am diabetic and have arthritis & PCOS so it was difficult to get drs to look beyond those as the cause of my symptoms. I know it gets exhausting to keep going to drs & getting nowhere, persevere if you can. It worked for me. Now I'm on a proper treatment plan; not cured but much better. Good luck x
Thank you for this documentary. Very emotional and true, which is hard to look at (for me as a fellow ME/CFS patient). I see the documentary is from 3 years ago, I hope things will soon change for ME/CFS patients, in treatment possibilities and doctors, governments and people taking it serious.
I had M.E and was bed bound for a year I couldn't even brush my teeth without being exhausted I got the doctor to come in and see me and she called me a lier and I was making it all up. I started getting better by myself and I'm so lucky but doctors need to understand that nobody would want to stay in their bed for a year I was also diagnosed with hypothyroidism also alot of people with M.E should I never want to go back to the part of my life I hate doctors now
I was diagnosed in 1982, thank the Gods my Doctor knew me before it struck. He told me the good news was that it wasn’t fatal, and the bad news was that there would be times I would wish it was. I have had several remissions and crashes over the years, but you can’t avoid or predict when it will strike, or for how long. I have tried everything over the years…some helped, others didn’t. It is a horrible thing to deal with.🖤🇨🇦
After suffering from not only the mumps during my time at university, it was then immediately followed by tonsilitis and after I had recovered I thought nothing of it. I was one of those people in my younger to late teens who could have comfortably entered a televised assault course such as Ninja Warrior and my energy levels were very high all the time. Since my time at university I have been deteriorating physically in terms of my energy levels. I have had success with drinking more water and eating better as I can eat quite a lot my appetite hasn't faltered. Even with exercise in a very strict routine improved my condition for the time I undertook it. I have a family, mortgage and physical job so having time for routine or money for supplements is quite limited. I know of late the gov have stared that they believe there are issues with the gut and immune system, which hopefully will shed more light onto the illness. People not believing you is one thing but I believe this is changing and I'm finding more sympathy from those around me. I do believe that cfs m.e. and fibromyalgia are in fact separate forms of the same area and even depersonalisation as I had been diagnosed with years ago has similar symptoms. University was back in 2006 when I suffered the diseases and I have never fully recovered. My worst issues are my dizziness and heart rythem during small tasks and the fact that for many years I have felt like I'm living in a dream world, which is simply awful. Crowds are too much to bear yet I'm socially confident. Whatever happens in the future I'm certain that we together will overcome this horrible illness. Keep providing your own research to the medical world. Good luck everyone.
Thank you 🙏🏻 I’m not on the young side.......60! And I have suffered CFS/Severe fibromyalgia etc., what help have I personally had? Not a lot.........Over decades of living a life of uncontrollable pain & stuck at home 🏠 or in bed is very debilitating! Fortunately I had done a lot before & with the wonderful family I have can slowly carry on! But, to see these beautiful girls whose life’s are in turmoil is outrageous, they need to be hospitalised & looked after & cared for, not left alone too suffer, I suggest the CFS & Health Authorities get off their backsides & do some work on this horrendous illness that robs you of your dignity & the feeling your lying! When people are dying!
I'm 54 and have been sick for 20+ years. I have no family so I'm on my own. I can barely feed my dogs and now my eating is almost nonexistent...that scares me the most.
suzie wong oh I am so very sorry to read you only have your dogs, I have always rescued my dogs & in return they rescued me! Your dogs are your family, loyal & loving & believe it or not make you push yourself even when there is no strength! I really do send gentle hugs 🤗 your way, please stay strong!
xanthe lennon I have tried for help, unfortunately after 7 years my disabled badge was taken away due to change in law! Can you believe it? I’ve had advice, bureaucrats is diabolical...........no help apart from little changes to home, but we have done it all ourselves. Never had one penny to help. As for help indoors I do it all with the help of my partner who’s amazing. I’m able to stay home & we fund everything ourselves.
I'm only 14 and I was diagnosed with M.E. when I was 12. Most days I'm completely bed bound, I get really bad headaches and muscle pain if I try to stand up out of bed. But the worst thing is that nobody takes it seriously. My mom says that I'm just using my illness as an excuse to lay in bed all day and nobody understands how bad it is. Please trust me it's not just that you're a bit more tired than usual, you literally feel like you're dying everyday. All my marks at school have dropped dramatically since I can't focus or remember things like I used to.
I'm so sorry you get met that way. I hope your mother watches this documentary and the one called Unrest. It might give her a better understanding. Obviously no one wants to stay in bed all the time, isolated from everyone and everything they enjoy. I also hope you get better, even if it's just a little bit ❤️ My own kid is 13 and I've been sick most of their life, but only got diagnosed with ME two years ago.
I'm so thankful I have lived 85 years without anything like this. I had never heard of ME till I was reading a book where one of the characters had it so I did a search and here I am.
I was part of the earlier stages of an Australian study that found a protein marker in the urine in like 80% of patients & they thought that the other 20% was misdiagnosis. Back then ME/CFS/Fibromyalgia (Australia’s new fave) was considered an adult disease. I was in a support group for teenagers with CFS & we were like “ok, so if I turn 18 or 21 & I’m still sick, is it CFS then?” “If it *is* ME/CFS then what did I have before that?!”
I just want to thankyou for this documentary on showing the reasuch on M.E it gives hope to us all that there will be treatment or a cure lets hope all doctors are hungry for info to make us better to listern and believe.
In the last 18 months I’ve laid in bed 90% of the time. I feel broken that I’m unable to function. I have so much fatigue I’m barely able to cope on my own. I have a carer now which makes life easier. I don’t want to out on a sunny day nor do I want to look out the window. My muscles are weak, pain in my joints & unable to stand up more than 3 minutes. A recent visit in hospital after a major anxiety attack noted on a letter that I have ME. The major problem I live with is pain in my lower legs. It’s like my shin bones are throbbing. Am I to say this is how my life will be from now on, a life in bed is a life not worth having
I have had ME/CFS for about 20 years now. It has robbed me of the possibility of having a career, a relationship, family, traveling... all kinds of things. I work a little, exercise a little, but everything wears me out. Thank heaven for my dog-- she loves me anyway!
Do you have much.pain with it
Sounds like my story. I am so angry that life has passed me by. It has literally robbed me of a life. Doctors just ignore it and move on to something else. It's unbelievable. That they can literally, purposely avoid the topic ,chronic fatigue. I'm 53 now and I just have had enough of this life. If you want to call it that. I struggle day in day out for years. Pure Suffering if you ask me. People always say it will change. Try this try that. What else can they really say. Doctors are the same way. It's always eating right, exercise more, get more sleep. It's all bullshit. That works for people who aren't sick with some unknown disease or something. I have dreams, goals things I wanted to accomplish. All gone and so little time left. If you are young. Fight to find something that works and don't give up. I know it's hard, as I pretty much dealt with it. Having no answers in a way forced me to deal with it. Doctors are dumb. They only know what was already written, discovered. nothing more. basically imposters. We have all that information doctors think that make them valuable. Right here on the net.
At least we have our pets by our side ❤ - CFS is a terrible illness, and we don't get much support, but our animals can still bring us so much joy and comfort. I hope you and your Dog are doing okay years later.
I have M.E. I am a single mum so when I was bedbound, with eyemask and ear plugs etc, all the severe symptoms, my two daughters could not live with me for four years and I had to have full care. It was purgatory. My parents still do not believe I have M.E. The disbelief within the medical profession is unacceptable, and adds to families not believing.
I’ve had ME/CFS almost 4 yrs. Only the last yr or so Some of my family realized that I am sick. I gave up trying to convince them. That took Way To Much Of My PRECIOUS ENERGY!
Thank You for ur kindness
how did you get past being bedbound and needing care?
My heart goes out to all ME sufferers, but especially to those who don't have a supporting circle of loved ones and professionals.
I'm alone...no family and after 20+ years just a few friends that live in different states...it's hopeless...
suzie wong sorry to hear that :( keep seeking solutions & trying to improve your life. I’ve heard that the carnivore diet and conversely a vegetarian diet has helped different people.
@@universaltruth2025 thank you. I have done vegetarian but not the other. I think I'm simply exhausted in many ways.
suzie wong I’d try going in the other direction in that case. Or at least I’d try the Ketogenic diet first. Then possibly move towards carnivore after that. Keto is high fat, moderate protein, low carb (20g per day or less). I’ve had chronic fatigue type symptoms for years, and tried it last year & found my energy levels improved. You do have to go through a few days of ‘keto flu’ symptoms first while your body adjusts to fat burning instead of glucose but if you can get through that you might find it makes a difference. Fatigue is v debilitating & depressing. There are lots of people doing keto on youtube you can follow, or books to read. ‘Going Keto with Casey’ is a good you tube channel, there are lists of books www.ketogenicsupplementreviews.com/blog/best-keto-books/. Mikaela Peterson’s story on you tube is also inspiring, although she was faced with chronic arthritis & depression rather than ME.
@@universaltruth2025 thank you very much for your information. I will definitely look into it and I truly hope something works for you too. Living the way we live is barely living at all. I just really hope it works for me as well.❤🙏❤
Its 2020 my neighbor has cfs/me and can no longer work. Her disability has been denied. This is unacceptable and disgusting that people are being treated like this. The world needs to change and fix all these awfull diseases that people suffer from.
Try to get have ur neighbor get a pro-bono lawyer and fight it out in court as many times as u can. SSI is just bad they deny alot of ppl. Even some ppl with MS , or ppl with no legs , wheelchair bound etc. There just really bad o.e.....So , u usually have to fight for it. Just in case u didnt know XD but i know its been over a year but ^-^ Goodluck to u and ur neighbor.
@@jessicapace9689 The cognitive dysfunction is very strong in a SS court hearing! Having a doctor that specializes in ME/CFS/Fibromyalgia that will give a “taped” testimony is also very strong on their behalf!
Praying for you! 🙏💗
She can get a disability attorney. They don't take any money unless you win. Get one who is familiar with ME.
Same here no disability and the resources needed to fight we do not have because we have no $. The Dr's don't care and frankly most of the world doesn't care. It is sad and disgusting. Thank you for believing her we need more pl like you🥰🥰🥰
..and now Sunak is making it impossible for the long term sick and disabled. So sorry for the way yoire being treated..it haopend to me.
I'm severely affected by M.E. Please believe us. I'm 49 and diagnosed 15 years. Had first collapse about 18 years ago. I fight every day of my life. Thanks for this documentary.
18 years here too. It's horrible. I used to have more energy than anyone. Now I struggle to take one shower a week.
@@RyanSmith-uw2ni I was diagnosed 2004 so mine is 15 years I hate it I wish there was a cure
Om so sorry everyone!!! You have held in there for so ming. Among the TOUGHEST people in the world EVER!
Prayers, blessings and love to you all! 🙏
20 years. Almost punched my gyno in the face last week. Doctors should be ashamed of themselves the way they treat us, it's insulting and dehumanizing.
@sidgdansk only thing you can do is realize they are idiots and become your own doctor, scientist and guinea pig. I work very hard to let go of the anger. It is a never-ending process. Malpractice indeed, I have stories on stories and not just with CFS. I am ever evolving, learning eveey day to focus on what can be done rather than what can't. I only use doctors for labs, bexiaeoI can't afford out of pocket and that alone is a fight. Do not depend in them for anything. We are many years away from modern medicine being able to help, much less cure. Best of luck my friend.
I have ME and have found absolutely NO support from any doctor, family members or friends. It's horrible.
Han Louise how r u now
@Han Louise I’m so sorry. I have all symptoms of ME and feel this same way. I am not diagnosed yet but have several tests coming up this next week. I believe you and support you. You are not alone. Sending love.
Instagram is really good to get support, there’s lots of people that have it and share their lives. It has helped me feel less alone with it all. Everyone is so nice
Same. It's been that way since 2007. I got it young as well, people assume you are depressed.
Sorry 😢
I'm also an ME sufferer although not as severe as many in this video. Thank you so much for this documentary. The hardest part of my disease has been dealing, not just with medical professionals who don't believe me, but coworkers and friends who think it's all in my head. It's so hard to deal with the illness, and this is only made worse when you feel there is no support around you.
hi! ME sufferer here, i was diagnosed this year (im 14) and ive struggled with jt since i was 12. i know ive only had it for 2-3 years and im not as terribly affected by it as the woman in this video but my heart goes out to everyone who has to live with it, and i cannot imagine how difficult it is for people who've had it for over 5 years. and i wish you the best too. keep fighting! you got this ❤️
Exactly. Being sick and having to convince others is like crazy gaslighting.
@Ina Fi you are so right! i feel like i have gotten a lot stronger the past 3 years- mentally of course. and i no longer get so worried about the smaller things like school and homework, ive slowly realized that i cant cope with school and i have to actually look after myself. which is okay! my health comes before school. but i am slowly trying to teach myself school in a way i can manage. i wish you the best too!
My family are the ones who don't believe me because they don't live in my house and only see me when I'm pushing myself to do things. I've been vomiting almost every day for almost 2 years now... On top of the cfs/me, TMJD, Fibromyalgia and a rare type of bipolar spectrum disorder.
I get to see the gastro doctor in a couple of days, with suspected Crohn's disease. An urgent referral meant I waited 4 months since referral to see him in the private system. I had to convince my doctor that something is wrong physically which took years of visits. Since February I have lost more than 5 kilos due to spewing. I'm now at a point of being scared to eat or take medication because almost all the time it comes back up.
Because I live alone and do everything in my power to not be spewing or pooping myself in front of anyone my family then refuse to believe me. They have told me I'm exaggerating and doing it to seek attention or it's the bipolar talking.
I feel this is such a common experience for people who have suffered the symptoms.
Only recently have I found a few people who have said "I believe you" as soon as I have told them my experiences /story.
It gives me hope. Blessings from South Eastern Australia, Dot
I was diagnosed last year when I was 14. I’ve had to leave school, I’ve recently lost everyone, all my friends and my boyfriend never bothered to support me, so I’ve had to cut them off, I couldn’t deal with that treatment. I don’t have anyone else except my mum who I live with. I go out about once a week maybe, if I’m lucky. I don’t talk to anyone, I don’t have siblings and my dad hasn’t lived with me since I was seven. I already had depression and was suicidal, but now it’s so much worse. I’m getting help after a long time, but it’s not much. To everyone with this illness, I think about you all everyday and I don’t feel as lonely :)
Sending you love. Hope things are improving a little now. Hang on in there xx
@@rosiem3984 Hi, things have very much improved since I made this comment. I'm doing my GCSEs and I have a predicted A* on my art course. I still don't have any friends but my mental health is way better. Thanks so much for this comment, it means a lot. :)
hi was diagnosed with ME this year and im 14! only a year younger than you. ive had it since i was 12 and its been the most difficult 2-3 years of my life. ive lost friends too, ive been bullied for it- its just the worst and i know how you feel. i wish you the best and i really hope you recover soon! we'll keep fighting together ❤️
I hope u get btr
Oh Dearest, sometimes our friends do NOT know how to support us, and that’s especially true in teenagers. I don’t blame you for giving yourself a break from that, but I hope you will be able to forgive them in time. They probably just don’t know how to help. I know that there are online support groups for most “orphan” diseases. So many groups! I hope you will find one that has people your age who you can connect with. Giving and receiving support can be hugely healing, emotionally. Please do reach out for that kind of community. We can (and often must) create our own extended families when we need “back up” for our own. Lots of love to you!
Ive been diagnosed for 21 yrs now. It's worse with each day.
Thank you for this documentary. PLEASE, continue for those that can't speak for ourselves.❤🙏❤
Ozone therapy will help
Chaga, reishi and Psilocybe mushrooms help A LOT.
Ashwaganda too
21 years!??? im so sorry, ive only had it for 2-3years + im still a kid- and i can barely deal with this, but i cannot even imagine the struggles youve had to deal with! my heart goes out to you. keep fighting ❤️
@@thxa_37027 years for me fybromyalgia my worst symptom now
I am 22 years young. Last year my body started giving up on me... constantly tired, my muscles in my legs where weak and constantly cramping, I could barely remember anything from the day before and my mind has been foggy, had zero appetite, stomach cramps, my eyes started feeling overly sensitive, HORRIBLE chest pains, struggle breathing. The list is LOOONG.
Visited MULTIPLE doctors, many tests were done and the doctors did not find anything irregular. When Hannah said no one believes you, i felt emotional because that's exactly how I felt. People could not understand what was going on, and eventually I was put on antidepressants. It's been 3 months now, some of the symptoms have been gravely reduced - they said it was all in my head. Some days are better than others, but I sure hope I'll be able to get my life back. I miss being young.
Look into scrambler therapy or Medipain device in Korea for muscle cramps and scenar device in Russia for stomach pains. Helps and I’ve seen miracles
This is literally the only time anyone has mentioned muscle spasms as a symptom of CFS. I thought it was just me, even my doctors didn't know what the spasms were caused by. This was helpful to see other people's experiences.
Same!
I have ME as well. I’ve found magnesium supplements can help with muscle cramps.
I get muscle spasms to
I have not been diagnosed with ME but I am in the process of seeing a doctor but from as far as I can remember I have always had weird muscle spasms and I was always told it was just growing pains, hopefully I’ll actually be given a reason for all my bizarre symptoms
Connor Coulson Over three decades have I suffered CFS & Fibromyalgia & my muscle spasms drive me crazy! I’m sorry you suffer too x
The husband of Sophie is so caring. The way he’s so gentle and tries his best to understand her needs and asks her what’s okay. He advocates for his wife and explains to people coming in. Get yourself a husband like Phil!
I TRUly beleive that havn SUPPORTIVE UNDERSTANDN CARING LOVING family is imperative in helpn us with M.E.(CFS) bcoz its a bad enuff health issue by urself it can be an apsolute GODSEND to have support in any which way and know there is at LEAST 1 person u can rely on 100% to help u cope n manage.I am a carer for my close friend n neighbor n I do it to my BEST capabilities just about so tht gives me the incentive to keep going but its a struggle I must say.My friend has severe rheumatoid arthritis so she struggles and relies on me pretty much for EVERYTHING so as long as she NEEDS me I will be there for her despite feeln exhausted and fatigued most days.Personally I think i do tremendously well considering how i feel and i find it really hurtful n insultn wen certain spiteful individuals say i can't do my caring role sufficiently wen I go abuv n beyond wot is expected of me! A bit of understandn n kindness wuddnt go amis from those who slag me off! It's all down to certain nasty negative individuals who hate on me for past reasons going round my local area saying un-nesscery hurtful untrue things makn me out to be something i am Not! Bout time they shut up n showed a bit of COMPASSION n EMPATHY INSTEAD of just being nasty n cruel towards me wen ALL i do is try n help my friend whilst at the same time lookn after MY wellbeing too!
I did. 22 years with the love of my life. He is a literal angel. I’ve been 90% bed bound for the past 14 years and my husband is my rock.
I had no idea what ME/CFS was until I found this video. It’s heartbreaking and interesting. To be heard and not believed is something I understand completely, but to not believe physical symptoms and signs is insane-and then referring people to psychiatrists and them saying what they said?! It’s insane and I pray for anyone who suffers from this and hope there’s some way to manage and cure this. God bless you all. Thank you for educating those of us who have never heard of illnesses like this. ♥️
Take D3 - K2 - B12 - OPC - Magnesium... there is hooope!
Thank you Tyller, for being interested, and for caring. ME is probably the most stigmatised and misunderstood serious, common disease in the world today. I wish you well and God Bless too in whatever issues you may be facing.
@@sarapintomoreira8222 what is OPC?
ozone therapy helps : )
Great documentary, I was diagnosed in 1989 with ME. I am now 54 and currently experiencing a crash, hence TH-cam surfing. I managed to get 80% most of the time. Had glandular fever for 2 weeks in bed at the age of 10, but me developed in my late teens. Missing out massive chunks of life in dark rooms, I lived to the max when I could. Can't even begin to think about the suffering endured by those that are continually bed bound. I found nutrition and Tai Chi/Reiki really helps me keep a semi normal life after having to adjust my life dramatically to cope. Love to all those suffering right now.
I'm 25 and have very recently finally been diagnosed with M.E after believing I had M.S. I've found it very difficult to cope with a 5 year old hyperactive little boy, and an 8 month old boy too. I sometimes have suicidal thoughts when things are very bad. But hearing you improved after a few years makes me feel hopeful.
Try Psilocybe mushrooms
Start with low doses
Please stay with us.
@abbysterry - please reach out when you need help to fight this formidable adversary !
I am one of the lucky ones
My ME is not severe, but I have it. Sometimes I think maybe I'm making it up, perhaps it's just me vying for attention...... but the pain I feel is so real. If I had a penny for every time people have told me to just 'get some fresh air' or 'do some exercise' then I would be a millionaire. Working a part-time job is a struggle, it's exhaustion in every single way, but I can't just NOT work.
I don't suffer with digestion issues, I've never even heard of that being a symptom.
When digestion issues, widespread pain and stiffness, migraine, and anxiety and/or depression are present then diagnosis leans more towards Fibromyalgia . Sometimes both
Mine are off and on and that scares me.
I was diagnosed with FMS and I was told that, that is the same as CFS. It's just what acronym that doctor I had was more familiar with.
I don't know what is the truth is anymore.
Kirsty Owens same. I also have a young toddler. Its so debilitating
I have been teaching English online but I lost my job after some absences. You could try it too and work from home on your computer. You will need a degree and a TEFL though.
I dream of working again. And of having friends again, perhaps even a partner. For now it's my mom and my dog who sometimes I need help with. Can't imagine having a child. One thing about getting this at a young age was that it stopped me from having children. Some may be upset about something like that, but I'm thankful for it. I'm 49, finally making some progress with a lot of research, detoxing, fasting. I believe in a year I can put these 20 years behind me.
I have ME and fibromyalgia and the last year has been tough. I feel so sorry for anyone with ME with children. It has to be so hard emotionally knowing you can't be the parent you probably hoped to be.
It really really is. And one of my kids is nonverbal and special needs. Sometimes I don’t know how I can go on, but at the same time I love being a mother. I will never give up!
What an incredible documentary! I have been sick with ME since 1988 when I got sick at age 14 from an acute viral infection. I have been disabled from this disease for 35 years. In my sickest years as a teenager and young adult, I was bedridden and had to use a wheelchair to even attend doctor appoint or be taken for a walk around the block for fresh air.
Fortunately, in my later twenties I improved somewhat and could participate in life “part-time.”
I am now 49 years old and I am amazed that I have been able to still have a fulfilling life despite the ongoing pain and illness I endure daily.
But the only reason I am still here and didn’t give up and be lost to poverty and taking my own life is because of the support of my mother and my identical twin sister.
They have looked after me, believed me, and supported me - emotionally, physically, and financially.
I am just overwhelmed imagine life without them and thinking of all of those who are suffering without supportive family and friends!!!
Thank you for continuing to spread the message of ME and the need for research and education! ❤❤❤
I had this in 1984 but gradually got fitter gradually over years never completely recovered but found ways of coping and lived a life where I worked but hid that I'd be ill and managed my life that way. At least I had a life. I got covid in 2020 and I'm right back where I was in 1985. My heart goes out to all those affected by this awful disease. Can't believe that it's still so hard to get help or be believed.
At least Long Covid is taken seriously And is covered by insurance. Still sucks, but could be worse.
@@meman6964 actually it's not been taken seriously and I've just been left to get on with it.
my mom has M.E, she is the most wonderful and strongest woman I have ever known. I grew up with not too good conditions, but mom always made sure to keep them away from me. She used to be able to stand back then, she used to be able to look at a screen without getting dizy, she sued to be able to sit by the table while eating, she used to be able to talk in the phone for more than 30 seconds before getting exausted and fever-y.
She already suffered from depression and grew up being mistreated both by family and by state. She fighted away drug addicts away from our family's connection-lines and she did so much to make sure me and my sister wouldn't fall into the same path she did...
I don't know how to explain the feeling of fear seeing the woman who once used to walk you to day-care, now when you're in college can't leave her own bed. I am extremely worried for her because especially the past 3 years it's really been going down hill.
The heatwaves here in Sweden the past 2 summers had her body get panic attacks. She escaped to norway last summer to her sister because it would be cooler there, and when she came back she was able to walk, she cooked and I constantly came to her like "MOM no you're going to get bed bound!!" because I didn't understand how big of a difference and what a positive effect the weather there had on her body.
However now it's winter and she is bed-bound again because it's too cold.
When I hear people wo have M.E, and then got better, I just hope for my life my mom also will get better.
It's really worrying when you have talked to your own mother about suicide because you've had nightmares of her killing herself because she simply can't cope it anymore; and that while talking to her about it, she is honest and explains that yes, she is suicidal, but she would never do it to herself because she knows me and my sister couldn't cope that...
I really am greatful she has her boyfriend (would be husband, but if they got married, that would prevent her from getting daily service help by the state because 'her husband can take care of her' despite him working so hard to earn money for both him and her).
And for ANYONE who DARES to say this illness is bullshit.... FUCK YOU I HOPE YOU BURN DEEP DOWN IN HELL BECAUSE YOU ARE DENYING SO MUCH SUFFERING NOT ONLY AFFECTING THE ILL PERSON, BUT THE PEOPLE AROUND THEM!
易靜風 You are a angel, stay by her side! You are the thing that keeps her going & breathing, as my family are to me, My angels. Bless you 💜
You are amazing. I am so sorry that your life has been so difficult. I also have spoken to my son about ending my suffering but I would never do it by my own hand because of my son and my mother. They are my only family I have. I certainly don't want my son to have to care for me. I pray that God will take me before I get to that point of needing help. I don't even have the energy to find help like this hospital and doctor. The U.S. medical community simply don't care.
Ozone therapy is the best but repressed from big pharma...make research about it!
I hope things are going well for you, your mom and the rest of your family ❤
Emma you did an incredible job - you had such a compassion for everyone you met. You helped me feel more supported and hopeful with my ME. Thank you!
There should be a public inquiry into those unethical psychologists that took decades worth of funding, and the medical insurance industry who also benefited by not having to pay out patients, as they claimed ME/CFS was psychosomatic. Together these charlatans intentionally kept biological/medical research to a minimum via misappropriated funding by producing statistically questionable research results. Those results scared off biomedical researchers into avoiding looking at ME/CFS, leaving patients to suffer years longer than necessary. The whole thing is utterly appalling and ultimately greed driven.
There’s always more money to be made in “treating” than curing
@@jaynedavis3388 A sad sad truth!
I don't think it's even about money. It's part of a long tradition to assume 'hysteria', especially in women, when doctors are faced with something they can't explain. Most doctors accept what they are told in their textbooks, which as a cause hasn't been found yet, is that it doesn't have a physical cause. It's really common for doctors and scientist to dismiss what they don't understand, because 'if I can't explain it and don't have a test I can diagnose it with, it's not real' is a lot easier on the ego than 'I don't have a clue, I need to think independantly and if I want to help come up with a new theory'. In reality, ME is complex and generally has many contributing causes which can be different for each person. Treatment needs to be holistic. All of this doesn't fit well with the western medical model. Dr Myhill and the Optimum Health Clinic have good treatment information though.
Your comment is incredibly incorrect. They legitimately dont understand what is going on, so with nothing documented, what can they do? That's like blaming psychiatrists who used to use shock therapy, or a WWI surgeons who didnt know about sterilization and cleanliness during operations for not knowing. Lack of knowledge and education doesnt mean we blame providers for trying to find out what's wrong, the literature says it doesnt exist and it may be a mental condition so that's what they try. What information are you basing this greed and theft on? Did we watch the same film? Yes, physicians do not really understand this disorder so they often dismiss it. Never does it say anything about them purposely denying it for financial gain? Your either incredibly oblivious or incredibly delusional.
@@jaynedavis3388 you realize this is in the UK right? That has the NHS, i.e. universal healthcare. This isnt America where healthcare is a business. The NHS is ALWAYS looking to save money. Thus your point on treating is more lucrative than curing literslly makes no sense.
It KILLS ME that most people around you STILL just think that everything is caused by depression and laziness! Or they just think you are bat shit crazy.
Yes pretty much.
They say everything is "depression". An outdated idea.
ABSOLUTELY .... I'VE HAD DOCTORS WANT TO SHUT ME UP WITH HAPPY PILLS
@@brucey5232 My doctor's always default to that, it's so irritating
Can't agree Any more
My wife had 4 children, also has ME/CFS , I did the child raising, but these events took her to near death relapses which lasted for many months to years, she still has ME/CFS.. the children have grown and left home, I am still her carer. but I see some improvements she has been ill these past 4 decades..(Australia)
You are an awesome man for standing by your wifes side for so long and for taking care of her. You deserve paradise
You're such a great man! I hope your kids do help with taking care of their mom.
I have had ME and autoimmune disease.. carnivore diet is the only thing that has helped me..
I feel for her..
Sorry bro. You wasted your life and spent it on a woman. You are a true victim
It's been a while since I watched this short documentary and I forgot just how good it is. Kudos and thank you to Emma Donohoe. I hope she is still doing well.
I was diagnosed in 2003. I was a single parent. CBT did not help me really. Graded exercise helped when I worked at my own pace. Which was literally a minute on each machine e.g. bike, rowing machine etc. I changed my eating habits omitted sugar, gluten, dairy and I had also developed intolerance for nightshade foods. Fortunately my job allowed me to be flexible. I joined a local support group in the initial stages which helped. It's now 2018. My symptoms are not as bad as they were. Some have more or less gone. The underlying fatigue is still there and I am more in tune with my body now and meditation has helped also. My recovery to this point has been down to a deep strength inside that I never knew I had and my daughter and angels along the way . Even when I felt i had no strength in mind or body. I somehow kept moving forward. It is really sad that 17 years later and after watching this video...there appears to be little or no progress in terms of awareness, funding, treatment or finding a cure
Sounds like you’ve handled it very well.
Wondering if you, like many, had been overexercising before you got it? And did you get ill with anything like glandular fever at the onset? There seems to be a pattern here.
Hi Paula, thank you for your comment, I’m one blood test away from being diagnosed even though I think I’ve been suffering for about two years. I’m also a single parent to a 4 year old daughter. Sometimes I feel guilty that I can’t do much with her on the weekends but I still try my best and it’s like you said, even when I just wanna stay in bed, it’s just sheer will that keeps my going. Along with being a parent I was working 8-5 Monday to Friday but I recently had to quit because I just couldn’t cope. I hope to return to work in the future but right now I just need to concentrate on my health. Hope you are well. Xx
make research about ozone therapy! : )
yes, I hope that in the next few years a cure will be found
I will be shocked if Merryns cause of death is ME/CFS. I often go to the Drs and they say to me....its your ME, so we cant look into these symptoms! I say, yeh i bet when one of these so-called symptoms kills me, you will be quick enough to say....oh it was a heart attack. They won't put it down to my glandular fever ripping apart my body and me being given an ME/CFS diagnoses.
Thank you to Emma Donohoe, I'm so proud of you for making this! And to any future studies please point them my way, I have so many war stories of my experience with ME you wouldn't even believe it. Even now, this coming Monday i have to face my dr who has been dropping my medication down forcing me to stop taking them. This is probably my 20th Dr, I have been told everything from them from since i got sick......go sit out in the sun! Another said go to bed with positive thoughts and in the morning you will feel better, my personal fav was a Dr who told me i just needed to take up drinking alcohol.
I have so many things to say, the way drs have treated me has been nothing short of abuse and bullying. They have stopped my medications but funny enough, never my antidepressants, why? Because they think im nuts.
It makes me so mad that i went through my medical notes and found test after test of negative results, Yet each test or scan always showed something i wasn't told, that to me was exactly what i was complaining of. I came down ill in 2006, yet was never told until i got my notes that i tested positive for the Epstein Barr virus. I didn't know anything was found.
So here i am in 2018 a man in his 30s who had no 20s and no 30s at this rate, and im still perceived as nuts! Benefits and the Drs don't believe me, Yet i am a shell of a man.
Did the drs care about my muscle twitches and dying of muscles? I have muscle lose everywhere, back, legs, shin, chest, arms and Even my tongue for crying out loud! Imagine how scary that is.
i can't catch my breath, ever. Im always breathless. My heart pounds and when i try to stand i fall. My bones hurt deep inside, my joints changed. Bone formed on bone! My knees point out. my hip bone thickened, my fingers changed, my body clicks and crunches all the time! My knees bruise and lock up for no reason and the pain is unreal. I always feel like im aching, my joints on fire. My fingers, toes, and skin are now super stretchy and bendy.
I have lived with what also feels like the flu for over ten years! Every single day, I pick up illnesses from people like no other, i can sit in a room with someone with a cold and catch it right there and then. That might sound crazy but i feel it affecting my body that fast. I know i sound nuts! But i know im not.
I also have 100 little symptoms that i say are little, but when they flair, it can be the symptom i hate and hurts the most.
Im well aware that no one is most likely reading this, but i wanted to write it anyway.
I have never truly accepted my ME/CFS diagnoses, I see the way Drs look at me like I'm mental, Hell if that's true, then fine treat me as such and use kid gloves when talking to me! Why are they so nasty? I just hate this.
I believe ME/CFS is a group full of unknown illnesses all chucked into one group, years ago i went to an ME group and in no time it became clear to me that people with ME/CFS/EPSTEIN BARR, LYME DISEASE, MASS CELL DISORDERS, autoimmune DISORDERS, and psychosomatic conditions were all given the name ME as their diagnoses. Its the reason why 1 size doesn't fit all with treatment.
Lastly i will say, if only Drs could see the money i have spent on importing into the country tablets, supplements and also the long journeys to see people/Drs who said they had my cure, they might then see the truth that i am a very sick man who has done nothing but try to stop this illness killing me
All i know is that i was happily working full time in 2006 and enjoy life, to someone who picked up a sore throat that just wouldn't go away, and spread throughout my body like a virus with bad intentions! From that day forward it would never go away.
I lost all my friends, my money and most of my family! I couldn't see my sick grandad for years who i loved dearly, he died and i still hate myself so much now for not trying harder to see him!
Yet the Drs in sync with the benefits symstem punish me and call me a lier at every opatunity. Only if they took the time to see me, instead i get a 5 minute apointment generally talking about why i dont work.....
Noone speaks for the silant, until now. Thanks again.
No doctor should assume a new symptom is related to M.E 😠
I can relate to you. A lot of it is linked, but because a lot of people may only have one cluster of symptoms, it is hard to create a holistic treatment. I have had very poor mental health most of my life, and when I had those treated, and I started to stabilise, it was then that doctors took me seriously. It's a shame they didn't see it before, and put the tiredness down to depression, but there isn't enough funding to treat all at once. I hope you find a way to make life easier for yourself x
Thank you Matt, for expressing so eloquently what so many of us with ME/CFS are living through. The nightmare of having the illness compounded tenfold by the nightmare of not being believed, mistreated and even made fun of, through medical ignorance.
I may be way off here, but something you said suddenly made me wonder whether you could possibly have Ehlers-Danlos Syndrome. I don't know much about it, but I know it can often be confused with ME, or the two may possibly occur together. May be worth checking out, if you haven't already done so. I don't know if it's better or worse to have EDS or ME/CFS, but it's always good to know for sure what it is one's dealing with.
I did read this and this is what happens to us it's not right also if we have any other illnesses that comes into play on top they don't listen we all need to support each other I am seeing and listening only us with this know how it affects us we just want to be well we had full lives before this sport love and work and we want it all back your not alone
I am a doctor and I have ME/CFS. I was a senior paediatric trainee when I took an antidepressant (just one pill at the minimum dose!) for severe unrelenting depression with suicidality... and I became unbelievably sick. When my acute illness improved two weeks later I remained absolutely wiped, aching all over, and with intermittent spells of drowsiness and brain fog. There is so little support for this. Most of the healthcare professionals around me either don't believe in it or think it's a bit of tiredness and that I'm being precious. My career has ended; I got told that if I can't stand on my feet for 6-8 hours I shouldn't be a doctor. I've tried to kill myself a few times since. Hearing you read extracts from your journal was like hearing my own words. I really hope there will be a treatment one day, something that makes this hell better. All I can think of is that if I died, perhaps I would be reborn into another body and this wouldn't happen to me....
I'm so sorry you feel bad about your illness, I, too, am sad for all the things I wanted to accomplish, but I didn't and I still can't. I hope one day you'll recover from this and that you won't ever, ever have to go neither through this, nor through anything similar. Do you have anyone who loves and understands you, so you are not alone in this? I, too, hope that you get the help you need. Hold on, suicidal thoughts are hard to overcome, but I believe that you can do it. You probably know it better than me, but it's possible to heal, and it's never too late to continue a normal life. All the best! 🤗💗
How could one antidepressant make you sick? Just curious.
@@MP-uo6qd I have a sensitivity to all drug doses; even paracetamol, I take at a quarter of the dose and get good pain relief from it. (At higher doses I get ill - I get headaches, high fevers and hallucinations.) When I took that particular antidepressant, about an hour later I started to feel really drowsy. That didn't alarm me too much, I knew it to be a common side effect. But another hour later I was not only feeling so drowsy I could pass out, I was also having the worst diarrhoea and vomiting I have ever experienced (I lost 3 kg in fluids in that evening alone), I was cold and grey/white to my elbows and knees, and I had chest pain and palpitations. Being a doctor, I didn't call an ambulance, because I knew they would only be needed if I had a cardiac arrest or passed out and aspirated on my vomit - so I called my parents instead and asked them to stay on the line and call an ambulance if I lose consciousness. After 2-3 hours the cardiovascular and gastrointestinal symptoms eased up and I was just extremely drowsy for another 8-12 hours. (I stayed awake because I still felt sick and didn't want to aspirate, but most people would probably have slept that stage off.) After that I experienced 2-3 days of severe dissociation and suicidality. Then I felt a little better for 24 hours, after that I was left with CFS/ME. The dissociation and suicidality persisted intermittently for a couple more weeks.
@@aesaphyr Sorry about your unfortunate experience. I didn't know you could get MECFS from taking drugs. I got ME/CFS after a big viral infection. Actually I recovered from the viral infection and I was ok for about 6 months and then I woke up with severe fatigue and brain fog. I don't understand why it took 6 months to start. But I recovered after 16 years and I was pretty well for 13 years and then last week I got a fatigue again but now it has almost disappeared again after 2 days. In the past I have tried antibiotics for mycoplasmas/intracellular pathogens and I have tried thyroxine and I have tried IV glutathione. I don't know if any of these helped me to recover or not but I did recover mostly like I said. I think it might be some kind of brain inflammation going on and causing the symptoms.
@@aesaphyr I am sorry to hear about your experience, I have a similar problem when it comes to medications. I always get side effects to everything I have ever taken depending on dose, although never severe. I can relate because in January 2018 I took a BP tablet for about 6 weeks and felt bad the whole time until I began to get tingling and sweating in my feet and hands and one day I woke up and my feet felt like they had been crushed, it was so painful I could not stand for longer than a few seconds. long story short the pain eased but then I developed fibromyalgia I had very bad pain especially in my feet and legs and upper back/shoulders. I had an MRI blood tests heart tests x rays nerve conduction studies, ultrasounds and they could not find anything wrong. I have found through research that ME CFS fibro and MCS are all caused by dysfunction of the autonomic nervous system. For me the pain has since improved overall but the anxiety, fatigue and other symptoms especially the weird heart symptoms and breathlessness is seems worse to me now. I am afraid that the doctors will try and put me on another medication which will make my problems worse and I don't want to see any more doctors because they either can't help or won't believe me. I know how it feels when you look back on your life and feel like you have missed out so much, regardless your life has value and your story helped me to see I am not alone. But no matter what don't give up hope, because there are people out there who have improved and or recovered fully. for me it was helpful to see a functional medicine chiropractor and also listening to testimonies of people who have recovered through various means. all the best to you
Thank you so much for this. My son is 24 and I believe that soon not only might there be reliable treatment but enough recognition that ME is an illness that he will feel ok to accept that it is ok to have ME and to ask for help. I am grateful that he is a lot better than he was in his teens. But the psychological damage caused through ignorance and judgment will last long after any physical symptoms are managed or cured.
I just passed the 38 year mark of having ME. I truly understand how you feel. When I moved to England to be with my husband I found the one doctor in all my years that knew what I was talking about. Instead of living either in bed or a wheelchair my husband and Dr Waldon helped me regain most of my dignity. I can walk with a stick and go up and down the stairs in my home...most of the time..)
Wow! Who is this doctor and where does he practice?
How?
Thank you for this documentary :)
I was just diagnosed with M. E.
I live in Ontario, Canada. I am 48 years old. I suffered for 2 years before my neurologist diagnosed me. Thank God for universal healthcare! The endless doctor visits and specialists... Scans, MRI's and blood work!
Mine is not as bad as this. I have extremely sore joints so most movement is painful. I cannot walk without a walker because my balance is so off, feels like the ground is tilted. And when I do walk, it's not very far. Any exercise is exhausting. If I overdo it I'm down for days at a time. Having a long conversation is almost impossible. I can't find the words I want to say at times. Concentration is at a bare minimum. My head will hurt and I get dizzy. Only being in a reclined position is when I'm most comfortable- seems when all my limbs are being supported and not stretched out or pressure on them.
Just before I got sick, I was in the best shape of my life. I was at the gym 6 days a week. I was doing home renovations as my work and I loved it.
I just started taking CBD oil for pain and so far has worked ok. I am on other meds too which seem to help.
I am thankful to have a wonderful wife and loving family and friends who are very supportive. I do pray that this goes away and I can have a normal life again.
I pray for all you who are suffering from this illness
make research about Ozone therapy! : )
Have you looked into mold toxicity? Doing home renovation can expose you to dangerous molds that can cause chronic inflammation..Google mold toxicity symptoms
Could you get Ampligen in Canada? I think Ampligen drug is allowed there for severe ME.
@@MP-uo6qd haven't heard of that one.
@@jamiebarnes3531 Ampligen is available in Canada for severe ME.
The same thing happened to me in my late thirties , after glandular fever . I'm now 50 and I'm much worse . I pushed through far to much and for far to long . My heart breaks for young people with this horrendous disease xx 💙💙
OZONE THERAPY ; )
fibromyalgia and myalgia encephalomyelitis or C.F.S are a form of severe malocclusion that affects the limbic sytem the brainstem the masticatory and back muscle and also the spinal cord. thats I AM 100 % SURE THAT MOST PEOPLE THAT HAVE HAVE FIBRO M. AND C.F.S HAve A SEVERE CLASS 2 MALOCCLUSION i AM SURE OF IT, THAT THIS CONDITION CAN BE EASILY TREATED AND CURE WITH OUT USING any MEDICATION . I have treated a lot of patient suffering from this horrible and debilitating condition. the symptoms are different from each person ranging from severe migraine to spondiolosis , epilepsy , vertigo irritable bowel movement costochondritis, P.O.T.S ( postural orthostatic tachycardic sydrome) to scoliosis these ar some of the common symptoms that i encounter on my patient that i treated. DR. JESSE BAUTISTA
@@topeye4202 That shit is so unsafe.
@Lucy in the Sky to Lucy i read your message to me my responsed to you is definitely i can treat your chronic fatigue syndrome and your fibromyalgia but your TBI it will be 1st to me THE TREATMENT THAT I DEVOPED DEFINITLEY INCLUDES PATIENTS WITH EPILEPSY but I havent tried the treatment with traumatic brain injury before all the patients that i treated with epilepsy has no history of TBI they just developed epilepsy during the coursed OF their suffering from chronic fatigue syndrome /M.E or Fibromyalgia . AND I HOPE YOU CAN ANSWER A COUPLE OF MY QUESTION 1) HOW LONG DO YOU HAVE FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME 2) DO YOU SUFFERED MENIERS DISEASED WHICH CAUSED VERTIGO IS THAT WHERE YOU GOT YOUR TBI, 3) ARE YOU SUFFERING FROM SCOLIOSIS, SPONDIOLOSIS OR LORDOSIS 4) CAN YOU ONLY SLEEP IN ONE PARTICULAR POSITION ONLY 5) DO YOU HAVE RINGING IN THE EAR LIKE BUZZING SOUND 6) DO YOU HAVE FROZEN SHOULDER 7)DO YOU HAVE SOMETIMES DIFFICULTY IN BREATHING and last maybe i can redirect you to my you tube up load its a testimony of one of my patient which i succesfully treated and inluded in the video are a short and brief explantion why do you developed fibromyalgia and chronic fatigue syndrome drjessebautistajr i hope you like it
@Lucy in the Sky I have read your response. With regards to your chronic fatigue syndrome and fibromyalgia, I can cure it. But with your TBI that caused your epileptic seizures, maybe I can minimize the frequency of epileptic seizure but not totally remove it.
You can add me on my facebook account, it's Jesse Bautista (Beng Gian). Thank You!
I don't have this disease , but I watched afflicted on Netflix I was really interested. This is such a MAJOR DISEASE and I was so amazed I had no idea what it was. Honestly, it reminds me of HIV when it first came out in the 80's. I will continue to learn more and choose to raise awareness. Your such a brave, wonderful soul for going back in time to help others and explain this disease. Much love.
Watch Unrest too, please. It's made by an ME sufferer.
I got diagnosed with M.E. at the age of two years old. The symptoms it causes and the general disturbance to life is horrendous. Thank you for highlighting this in such a well made documentary
ip windsor how r u now
This is absolutely heartbreaking. I am so, so sorry people are suffering from this and that their families have to suffer too. Prayers for everyone.
I've just been diagnosed by an immunologist at severe stage I've been ill for 10yrs now and this video has had me break down crying. Merins quality of life is very similar to how I experience mine, being bedbound, underweight, never awake, never eating, breathing problems etc. I get suicidal, everything I enjoyed stolen by my own body.... Prisoner. I am 35 and a mum of 4 aged 17, 16, 1e and 11. I don't get to see much of my kids each day at all and miss so much about it I've greived over it and still can't except it. I take 63 tablets a day now and have numerous health problems that e almost took my life several times.
Finding this video due to trying to learn about my friend s life without bombarding her with questions I now feel absolutely heartbroken now having a better understanding on how much day to day life is a struggle
That is such a lovely thing to do x
Having Fibromyalgia with M.E. Is a difficult set of illnesses. Although we have a lot in common, you have to look at your own set of symptoms and de-stress as much as possible.
Some people have developed ME type symptoms after contracting Covid. This has sparked an interest into looking again at ME. It’s taken a pandemic to make people think that maybe this isn’t all in the mind. I’ve had it 38 years after getting Epstein Barr virus so if they research Covid ME maybe, just maybe they may begin to accept that it isn’t physiological....we live in hope!
I’m a teen with me/cfs. Thankfully it’s mild, but thinking about how much I struggle now I’m quite frankly terrified it’ll get worse. I’d give anything for a cure or at least better treatments. Much love and support for fellow sufferers💕
same.
how u doing now?
Thank you so much for this well informed, educational, and empathetic coverage of the realities of ME. Well done 👍🏻
Thank you for this. I've lived 35 years with ME/CFS and didn't know there is a much larger gathering community of us. I didn't know what millions missing meant until this documentary.
There is a drug in America called Ampligen. We can't get it here though. Perhaps you could try that but it
s expensive. really expensive.
Thanks so much for the documentary. I have moderate ME, so I'm not bed-bound. But I can relate so much with the content! Thanks again
It is EXTREMELY rare to ever get better. That's important for people to understand.
Only people have ME understand it. I have ME and apart from suffering from the illness I suffer from the missed treatments from the doctors too
May our Lord be with all the scientists and Doctors ,to find a cure for ME ,what a heart touching story , a lot of people do not no about this terrible desiese ,God be with all those fighting to over come this !
No thank you. Why are you spewing some religious agenda into is.
Well done! Emma you are quite a remarkable person! Thank you for letting us see into your world. Good luck to you!
What a heartbreaking watch. I have ME/CFS myself and live life in a bed most of the time, occasionally a wheelchair or a sofa. I know how serious it can get and I'm thankful I can talk to and hug my loved ones and at least my mind has started to function a little. But it's nearly 2023 and where are we? Still no treatments, but closer than ever I hope. NICE guidelines updated and people starting to believe it's physical, but still many that cause harm and an even greater number that just don't understand at all. Documentaries like this are so needed. It's painful to watch. And for me I can already feel my symptoms flaring, lymph nodes swelling and headache starting. The inevitable result of feeling choked with tears and emotion. Because with this illness it can even be harmful to feel the grief.
I thought I had a type of chronic fatigue syndrome for many years, felt like I was dying. Turns out it was a sub-clinical sinus infection that went undiagnosed. It took 4 years to finally get diagnosed. They tested me for almost everything but nobody thought to look up my nose (the lining was very swollen.) My blood tests just showed an elevated WBC and C-reactive protein levels. All I needed was antibiotics and I never got it when I was at my worst. I suffered unnecessarily and I can never get that time back.
Lost&Found how did you get diagnosed with that
aly k By that time I’d given up and thought I was suffering from an incurable, mystery disease and had stopped going to the doctors for answers because they’d basically given up on me. But then after a long flight I got more specific symptoms of what seemed to be a cold but the cold persisted and caused very bad headaches so I thought that’s not normal for a cold. So I went to the GP and she looked in my nose and saw inflammation. I’ve been treated with antibiotics and steroids and although they helped, they haven’t completely resolved my issue. They said I might need surgery or to see an allergist. I still get fatigue for no reason (although it has improved) and mysterious joint pains at times which started when I got ill.
make research about Ozone therapy! : )
My symptoms started after a sinus infection. I always feel congested and my joints swell and always tired. Fortunately I made it through nursing school and work. But I have children and I’m always tired I can literally stay in bed all day. It takes all my energy to work and just feed my kids. My son said you’re always in the bed that hurt so much. But if I don’t paste myself I would be drained. I noticed it’s something to do with inflammation my glands are always swelling. It seems to get worse before my cycles. Idk if it’s cfs but Ik it’s not all in my head. Or maybe it is!
I wasn't sure what this documentary was going to be like..A lot of these kind of docus have good intentions when it comes to understanding M.E but don't always get there but this was pretty good.I thought it was a good thing that they followed some of the more severely effected people.I have experienced M.E in its more severe form and know how tough it can be.
Hearing Merryn's story did bring me to tears.She seemed to have such a big heart and I feel for her family.
I found it interesting that the doctor who specialised in M.E had suffered himself.I think sometimes having firsthand experience of CFS is the only way people can take it seriously.
Thought all the girls who took part in the documentary were incredibly brave.I feel so crap about how I look right now that I wouldn't go near a camera.
When I feel strong enough I want to write a book about some of my experiences to go some small way to helping people understand the illness better.I have always liked writing so I want to pour everything I have into my book.
Thank you Emma for speaking out.To everyone reading this who has M.E or has posted here I hope things get better for all of us soon.Big hugsxxx
I have had ME for 14 years I am 60 now...it has ruined my life 😢
😞 heart breaking my best friend is also suffering from ME/CFS
I have had it 35 years and it has ruined my life as well
@@suesanson8876 I had it for 16 years since I was 25 then it just seemed to go away. I have seen on youtube that research suggests it is brain inflammation which seems to fit with the name and the symptoms. I was always able to work with my symptoms however. I was never bed bound.
I'm 55 and when I was in my early 30s was when my life started slipping away until now. I have no life and most of my friends are gone. There are 3 friends that have stayed with me even though I can't do anything normal. Two of the three friends knew me before I was really bad and they all say that I'm a shadow of the person I once was.
God bless those that stay with your sick friend, girfriend or wives.
Also for the few males, apx 3% in the U.S., that suffer from this type of nightmare. As I understand the men that get this are usually are hit very hard. I can't imagine how much worse it can be for them.
💔
I’m 16 diagnosed at 14 it has ruined my life no GCSE lost all friends struggling so hard
It’s so sad, and today I found a random link on the NICE website that informs the NHS about ME; that says NOT to test for B12, NOT to test for ferritin, NOT to recommend supplements...to me patients.
FROM NICE as body that also specialises I cost cutting advice... how can this possibly be justified, when both ferritin iron stores and B12 NEEDS to be ruled out at the very START of any symptoms.
The U.K. normal levels for b12 are too low, same thing for ferritin stores, which in the U.K. can be as low as 12. Compared to 40 in Canada. When any dr says your tests are normal, ALWAYS ask for copies of the results and look at the actual results.
Excellent film by the way 💛
Just been diagnosed after suffering chronic fatigue and digestion problems for over 6 months. Run my own business but have real trouble keeping up. My main problem is that I used to be driven, now I am energyless and it is getting worse. Did 3 hours light work today and now I have had it. Nothing helps, not even a sugar boost. So so frustarting.
Same. My energy getting worse these days. I get easily tired doing simple work. I am not depressed and still working but man it is like something drain my battery so quickly.
That was pretty good. Thank you!
My only criticism is that they’d put a brief explanation of how the majority of government funding has gone to the psychs and that if broken down, that 3.5 million over six years for 250,000 plus patients is disgraceful.
But thank you very much.
Excellent video content! Forgive me for chiming in, I would appreciate your thoughts. Have you considered - Dinanlinson Rebooting Health Approach (erm, check it on google should be there)? It is an awesome one of a kind guide for getting rid of chronic fatigue syndrome without the headache. Ive heard some super things about it and my work buddy after a lifetime of fighting got cool success with it.
There should be an inquiry into those psychologists that took all that funding and the medical insurance industry who also benefited, because together they both kept biological/medical research to a minimum. which leaving patients to suffer years longer than necessary. Truely appalling
SERB SIMULATOR - - - PLEASE DO NOT TRY TO SELL YOUR PRODUCTS ON THIS HONEST CHANNEL. GET LOST YOUR DANILINSON CRAP IS..PURE BS, YOU ARE LIKE A BEGGAR TRYING TO MAKE CONVERSATION WITH BS.. IT IS ABSOLUTE MLM BS CRAP, LOOK ME IS SERIOUS NOT SOME GAME YOU MORON, YOU DISGUSTING SLEAZY PROFITEERS HAVE NO SHAME OR MORAL COMPASS. STAY THE HELL OUT. SELL TO RUSSIANS. everyone else, BEWARE this Dinanlinson Rebooting Health Approach is utter BULLSHIT.
They just popped back up again. I reported them again.
Thank you so much for making this. Raising awareness, support, and funding for research is crucial.
I have severe M.E since 10 years and I have been bedridden 8 years cause it. I had 9 months of very severe M.E in 2016. I am invalid cause M.E.
Much love from Rome
Lavinia, I know that we get tired of hearing ideas and trying new things but at the risk of troubling you with one more I was able to get much of my life back and at least out of the bedroom that I was in for 4 years by performing at home fecal transplant.
I took nearly a year researching how I could safely make capsules in a homemade lab. If you have any interest in talking about it let me know I'm not trying to profit at all I'm sure you've already lost all of your financial security. I just know how you feel and would be glad to help
@@clubadv Wha!? How did you find a Dr. who would do that?
@@diesel4125 save time and read blog post "are probiotics a con....". This will change the way you see ME/CFS and how to treat.
@@clubadv Thanx! I'll do that. I'm ready to try just about anything in order to get well.
@@diesel4125 I remember that desperation. I was even ready to end my life a few times, but I had kids I was still trying to raise that kept me alive. So glad I did, I cannot believe how different life is being on this side of that desperation. I don't ever want that to become a distant dream, it was the most significant part of my life. I wish you well on your journey Diesel.
What an amazing husband Sophie has!!!!
Dr.'a need to trust that the long suffering patients know more then they do. I've been researching for 25 years.
3 years after my diagnosis, I’m finally 50% better. It’s been so hard
I have chronic fatigue, POTS and EDS. I’ve been hospitalized for fainting in the past and am debilitatingly exhausted. Doctors have dismissed me for years and have done nothing to help my symptoms.
Same as my 33 year old daughter
I suffer feom ME and have shared this because people just dont understand. Thank you so much for this xxx
I have had ME/CFS for about ten years now. Self-diagnosed but I have had all of the symptoms and know it's what I have. Thankfully, I am in recovery now and the suffering has eased. But my heart goes out. Anything I can do to help others that continue to suffer I will.
For the past three years I've been treated for OCD, PTSD, agoraphobia, depression and anxiety since my dad died unexpectedly. I'm 41 with 4 kids but I'm really struggling. I'm really starting to wonder... the brand of fatigue I've been experiencing is debilitating. I still work part time as a nurse so we don't lose everything we've worked for but all of my time off is recovering in bed. I barely even eat because I get dizzy spells and muscle pain every time I get up. I'm afraid to mention it to my doctor because I don't want them to think I'm just trying to diagnose myself but I'm so desperate. This is the loneliest life.
Late response but have you found a diagnosis? Ill tell you that it is my impression from reading the research and knowing the disorder and being affected myself and seeing my online friends suffer from it that being able to work while having ME is not common but it is possible. I worked part time when i had minor ME..."minor" ME is not very minor in terms of how sick it makes you. ME is 3x more disabling than MS regading quality of life. I would highly suggest you stop working if you still are, because your body will possibly get sicker. That being said, it is important to keep whatever normalacy you can in your life, so if you want to work just be careful to avoid crashing. There is really a lot of different things that can cause bad fatigue, so i wouldnt be surprised if you had another medical issue. However if "exercising" consistently (always) causes major flares in your sypmtoms, i would continue to look into ME because not many other diseases cause people to collapse in bed for days, weeks at a time after exerting themselves minimally. Look into the other symptoms of ME....pain, malaise, fevers, POTS, MCAD, headaches, cognitive issues, immobility, flu like symptoms, intolerance of extreme temperatures, and of course sensory overload to name a few. Most people with ME have nearly the whole list, even at its "mild" form. ME is never just fatigue by itself and the list of other symptoms are just as disabling. Idk if your work requires you to stand up and be concentrating for long parts of the day but if you can do that, one could argue ME is unlikely, but i think very possible to have a minor version of mild ME...you could be "lucky" and not develop into full blown moderate or severe, or you could be totally bedridden by now as is what happened to me. You could also be pre-clinical in that you dont have the officially diagnosable disease yet but you are on route to that. The first thing you should notice is total inability to exercise anymore. Sorry i hope you dont mind me giving my unsolicited opinion or my two cents. I dont wish this upon my worst enemy but its better to have a diagnosis than to suffer from it with a doctor who isnt even aware or willing to entertain the idea.
Wow I have just come across your post. I was with my mother in law when she took ill and died. Due to a misunderstanding with the hospital we say her an hour after she had passed. The next day I got agroghobica, anxiety I have been treated for all plus ptsd.. I get dizzy spell when I get up and move, even having a shower I can get confused.
@@liamtoone8782 I'm so sorry! I just saw this! Thank you so much for posting back to me, even though I completely missed it!!!! You are so kind. I'm actually at work now 🤣 I'm definitely improved since 3 years ago but do still struggle with fatigue after minimal exertion but the fatigue is no longer being in bed all day to recouperate. Please tell me how you are doing! Again, so sorry I missed this. I only found it because another comment was just added.
@@ianferguson4439 oh my goodness, that is exactly what I went through. I am now doing much better. I still become very fatigued after minimal work but it is no longer debilitating. I used to also get really dizzy in the shower and would have to sit on the shower floor but it only happens occasionally now. I truly hope you feel better quickly.
@@carrielopez1728 I'm relieved to hear there is hope. Between the light and sound sensitivity and crowds. Not being able to watch TV as cannot follow stuff. Getting dizzy when I stand up
A very informative documentary, quite upsetting to watch but hope it helps inform more people of this terrible disease!
It seems obvious to me that M.E. is caused by people not having the support that would afford them the chance to rest properly during and immediately after an infection, so the body's defences against infection end up going wrong as they're placed under more strain, and getting into vicious inflammatory cycles which then become self-fuelling and thus autonomously perpetuated - a process of which we know little. I think the main reason M.E. is overlooked, brushed aside and blamed on the paranoid imaginations of the victims is that it's indicative of an economic infrastructure that knows it's pushing people to near breaking point, and that knows it frequently pressures people to choose between going destitute or being physically superhuman, pushing themselves through all their bodies' warning signals until they break. And then those people either have to find it in them to carry on without a break, or they have to get rehabilitated to go back to work ASAP, or they end up getting effectively tossed aside by the workplace as used goods (followed by government trying all kinds of ways to dodge giving them the benefits to which they are entitled as people forced to retire due to ill health). As soon as that vocational pressure is outright acknowledged as the cause, and as a nation-wide issue, there will be mass pressure to halt said relentless whipping-on of people. Without the productivity that whipping-on past sensible limits drives, the economy won't be able to keep growing out of all proportion, as it is right now with competetive employment/marketplaces, and people who have a psychopathic love of hoarding money won't be able to squeeze as much of the stuff out of the masses' work. They know, but to prevent that from happening, they pretend like it's any cause but that one. That pretence gets harder and harder to do as peoples' bodies suffer more, and the cause of that suffering becomes more and more obvious. But it's a denial that will continue to progressively ridiculous extremes, and, indeed, to the bitter end if allowed.
Oh My Good Girl, how did you get so smart? You're so 'on the MONEY', on this one. Thank you so much for taking the time to share this incite. So dam shamefully accurate.
True!
Very true!!
The thing about the economy growing is they are never satisfied!
If it stops growing they call it stalled like it's a bad thing.
They never say, ah we've reached our goal, that's fine.
Also, they flog the dead horses by making them work weekends now too!
I vowed to never work weekends but I ended up in two separate weekend jobs over many years.
I've had cfs for 11 years years and now can't work at all. I have no people in my life because everyone resents me.
I'm trying to get mobility pip back but it's taking a year so far.
I give up. I'm 48 and I'm done with life.
I'm constantly suicidal.
This documentary is very sad; however this has been very helpful.
I was only informed that I had ME 1 year ago after suffering for quite a while.
The first time I did notice my unusual fatigue in my teens after having glandular fever and then it progressed to Stomach problems, monumental headaches, Chronic pain and 'brain fog' in my mid 30's.
I had no idea of what it was as the GP's kept diagnosing depression and I knew I was not depressed; although I had gone through another very challenging life changing event.
It has effected every area of my life and this documentary has made me understand the physical issues now that were clearly present back in 2006.
I want to say thank you to this lovely lady doing this documentary.
I would love to talk to other people that are going through this, to share survival tips.
I have really good days and I feel like in the main I am getting better; however it sneaks up on me and I never know when a relapse is coming. I do seem to have better days than bad, although it is always there..
My lifestyle is not the same though and I have had to learn how to manage with this horrendous illness; but I am learning to manage with it quite well.
Love Debbie x
There is a test which proves the post-exertional fatigue in ME/CFS. It’s called a 2-day CPET (cardiopulmonary exercise test), where people with ME/CFS cannot repeat the results the next day, whereas ‘Couch potato’ controls can repeat the results. The 2-day CPET is not advisable for many ME/CFS sufferers, as it may cause a crash, sometimes a long-term one. It’s mainly used for research purposes, and to prove ME/CFS cases for disability insurance. Google ‘Workwell Foundation’ in California for more info. They would know where the closest testing center to you is.
Got it at 21 in 1975. Didn't get a correct diagnosis until 1995, by that time my life and health were a wreck. Nine major surgeries since then. I've had cobalt and chromium heavy metal poisoning from a metal hip implant that spent ten years dissolving into my bloodstream because the maker and surgeon both failed to notify me that there was a problem with that model. I had 600% of the safe level of chromium and the same level of cobalt which has no safe level. Good luck to those fighting it.
I am 62 in june I suffered with ME when I was 28 years old,sportsman into swimming,one day just woke up went and played 5 aside for my local council team played 30 mins and fell to my knees with excaustion,just blamed it onto my day job as I was a builder,never thought anything of it always tired coming home from work and going to bed early because of my tiredness.How I found out there was something wrong went to corfu with my sister ok first week everything normal the 2nd week I could not lay in the sun all my joints hurt ect,I went to doctor had all these blood tests he said im ok but I knew I was not,so I had ms test and it was not that thankfully,I had biopsy done they found out I had ME with roots attached to muscle tissue,they asked me in hospital have I had a illness in the last few years,I remembered and told them I caught measles off my daughter when I was looking after her,any bad illness can trigger ME as it destroys the immune system,after it destroying my marriage I decided to move to spain my symtoms got better still could not sit on beach.could not build or do anything physical so I employed men to work for me and I ran website and sold property,also spent last 3 years in corfu Greece had to come home could not walk on left leg and also could not afford medical treatment,Arrived in UK October 2016 was on plane with everyone either coughing or sneezing,I caught flu and was in bed for 2 weeks and 4 weeks all together before fine,Starting feeling weak again even went to London to pass my doormans licence also passed my CSCS exam,while I was waiting for a paper from Greece I was on jobseekers but was on that for 18 months,but during that time I was getting weaker,had xray on left leg nothing they can do until im older,9 months ago I was diagnosed diabetes type 2 I had no choice but to go on universal credit for my sicknesses ME,Diabetes and left leg,I have just changed doctors because he just laughed at me as if I was putting it all on,had accessment With UC and they said I was able to do some sort of work,I have since appealed and sent them medical proof.I am house bound and only go out when I have to,i cant walk far or stand in a que I need to sit down and rest,I live by myself I cant let another relationship suffer again,I cant get any help because I need to be in the UK for 3 years,So hopefully this October I can qualify for PIP which can help me pay for housework,also my new doctor will find me help for my ME
Last week I got diagnosed with ME/CFS. I was relieved to finally know what is making me like this!!! Im thankful that I am coming out of the worst of it. You mentioned Terminal ME. I hadn’t heard it was terminal until watching this. My Dr told me that there is no definite way ti diagnose it and no cure. Im on a quest to learn as much as I can about it!!! Thank you for sharing!!!
Thanks so much to everyone who is working to improve our desolate situation.
Fantastic documentary, giving the true insight into this very disabling illness, which nobody sees. What other illness would be questioned or not believed by the medical profession. It's so disgraceful how we are treated. I just wish these same people tried living with it for a week, they would soon change their minds!! Some of the strongest people I know are ME sufferers. ❤
Thank you for making this video. Thank you to those who believe and those who try to understand this illness.
Heartbreaking for sufferers not to be believed and family gossip and think they want to lie in bed and see life pass them by. 😢
My heart goes out to everyone suffering with ME/CFS and other severe chronic conditions...I was hit by a car when I was 11 yrs old and have dealt with rheumatoid arthritis since age 12 and fibromyalgia since I was 15(though wasn't Officially diagnosed with them by a dr until I was 40yrs old and later was told that my CFS was just a " side effect of my Fibromyalgia").I have had CFS since I was 15 too and have only recently learned that it is a condition by itself( at the same time that I learned that my breast cancer is now stage 4).There has been so many times that Ive wished to die in my sleep.I have been dealing with crippling pain and endless exhaustion that has caused me to have unipolar depression. Been dealing with these pain conditions as well as degenerative disc disease longer than Ive been alive.Thank you for sharing this video and the struggles that ME suffers deal with.God bless you. Love from Maine USA
Look into iodine and breast cancer🤔
I was diagnosed when I was 15, now as an adult I still have issues, I was diagnosed as autistic in adulthood, the other issues I have are with fatigue, GI issues that don't fit IBS which health professionals constantly say I have, pain and subluxations in joints and odd pains in muscles, constant 'injuries'. It has been suggested I look into heads and it fits but most doctors know nothing about it. After much research I'm convinced there is a link between, autism, chronic fatigue/ME, fibromyalgia and EDS.
Wow vaccine injuries are connected with almost all of those illnesses
I'm sorry you've gone through all this . I hope the best for you :)
ozone therapy helps : )
Laura Jaine there is also a link between eds and gastroparesis, I believe. That can explain some of the gi issues associated with not keeping down food
@@Ari_0451 yes I have read about this, I have finally been diagnosed with dysautonomia, I have neurally mediated syncope which is like POTS but it's my blood pressure that drops when triggered, so under the POTs clinic they have said I most probably have hEDS and Mast cell activation disorder, they are all linked.
Thanks for sharing this. I'm a nurse and I'd honestly never heard of this before . My heart goes out to the patients and thier families.
Ive had severe ME for 9+ years and have found these help most to come back from PEM.. 1) Midday SUNshine on most of body as long as possible short of burning, even if I have to wear sunglasses or even an eye pillow, it is the single best medicine which seem to work as natural chemo, reduces infections more than anything else and I have sworn off antibiotics after years of work building my microbiome. 2) Bone Broth, it must have thick collagen with tons of beef, lamb, chicken, or fish fats; when I cannot hold food down the ones I often can are this and ghee-coffee or sometimes straight heavy cream as it is 100 calories per oz and easy to get down and is nutrient dense. 3) thc and cbd, I need mainly thc and it is the best for pain, sleep, nausea to eat, and general malaise. When I crash and have the vagus nerve gripping pain it helps most to lay on my stomach or second best is the R side, it seems to pool blood into the vagus but helps a lot. Best..
I, too, find relief from SUNbathing...exposing most of my body to noon day SUNshine for as long as possible. It's the only time I feel life in my body. It feels so good! I also find relief from pain and anxiety by floating in water...
Bone broth yes!!
yes sun produces little ozone...but ozone therapy will have much better effect.
Ozone therapy is repressed from big pharma...it to cheap...they cant make money with it...
Psilocybe mushrooms have helped me a lot with ME
@@alanencinasmartinez4277 how so? I mean, what improvement have you noticed?
Holding on to hope and having people around you who say "I believe you" are two of things that help me deal with a complicated list of physical and mental health challenges (diagnoses and symptoms) that includes me/cfs.
Does anyone else with M.E. suffer with convulsions and body twitches just as the brain is going to sleep?
YES. It's scary
frangitube yes my partner does. Whilst we don’t have a diagnosis yet. All the tests for everything else come back normal. We are 99.9% sure it’s M.E/CFS he also suffers with a stutter now. And the convulsions and body twitches along with the pain. He also stops breathing when he goes to sleep. Any one else suffer with that? It’s like his body forgets how to breath. Food as well at the moment every thing he eats he feels sick. I can’t remember the last time he ate a full meal. It’s sooo heart breaking and my heart goes out to all those who are suffering from this life destroying illness xox
Yes & eyes flicker n body twitches
Yup
Yep
Thank you for documenting ME /CFS. I was diagnosed with CFS and fibromyalgia, and I also have low thyroid. I am heartbroken for these young people. I was in my 40s when diagnosed, and it took many years of the process of elimination. My symptoms range from being bed bound to exhaustion, which is just debilitating. Headaches and pain in all my joints either can not sleep or sleep too much. Swelling, rashes, sensitivity to noise, bright lights, pain if someone touches me . Bruise easily, weird things like blood cell issues, rare conditions like ackenbach syndrome heart palpitations, dizziness, nausea, list goes on. My immune system is compromised. I was always active. Ballet, martial arts, horse riding, gym. Now I can barely walk. This is very real, and it is important we talk about it and educate people. This is not an invisible illness. This is a condition that takes lives.
M.E. is just a awful disease, I cannot imagine having to go through the disease and having people so heartless not believing you are really sick and not faking it. My heart goes to all of the people who suffers from M.E's
I also have M.E/CFS . I used to work full time be A social person A good mother but now i barely leave my house on the worst days i cant even hold A cup or even keep my eyes open. Im lucky as I do have A wonderful partner who does everything for me. Its such A life changing illness
Nurses are LIGHTS IN THE DARKNESS, BEAUTIFUL SOULS!
This is the first time that I have been able to watch about Chronic fatigue syndrome and feel like I'm not on my own with this and that one day hopefully their will be more that'll be able to be done to help people who have this horrible condition I'm currently starting with a crash and what they say about getting a wash is so true you feel better for being clean but then you feel awful and by the time your recovery has passed from getting washed your in need of another wash Hopefully programs like this will help get the word out and more will be done to help those of us with this horrible condition
You can say to patients what’s happening in their bodies.
Mitochondrial dysfunction
Autonomic nervous system dysfunction
HPA Axis dysfunction just to name a few. Science has proven these things time and time again.
There is also huge immune system stuff going on.
Yeah I've seen this research too. Is none of it treatable?
Seems like Ron Davis and Dr. Fluge found that pyruvate dehydrogenase is impaired. That means the glycolitic pathway is nearly shut down. I honestly don't know how having glycolasis being shut down hasn't killed us. Also I heard one of the O.M.F MDs say in Australia they are just now finding that there is ion channel dysfunction in ME/CFS.
In the past year it seems in many cases there is an autoimmune component. Something with neural autoantibodies if I recall. Also tons of inflammation, which can be objectively measured with test looking at hsCRP and PGE2.
Very last thing I promise. Downstream from the inflammation a nasty neurotoxin called quinolinic acid builds up. It can give you suicidal depression, serious cog problems and even cause mild neurodegeneration. All three of these test were extremely elevated in my results.
I tried every treatment nothing work.
I am bedridden for 22 hours a day and mobile by a power chair.
@@voicefromtheshadows6982 Babe you are so on the money = quinolinic acid build up, that is one of the major culprits of ME
Long time suffer & Finally Diagnosed Correctly by the best, after 8yrs of being not believed & Drs not having a clue.
Excellent Emma & for you to say M.E & not cfs is help alone.Cfs is only ONE symptom of M.E.I cried throughout entire video & also reading peoples comments.
Sadly today is March 2023 & Worldwide STILL the race for a diagnostic, treatment & cure continues.
5yrs after this Video & really nothing much has changed & funding desperately needed never granted due to the stigma around this SEVERE devastating,debilitating Disease.
Wishing us all to be treated with dignity,believed & find & Dr who knows about M.E. Very sadly my Amazing Dr passed away & now I find myself my own Dr.yet again.
🍀❤Have hope ALL there, are Brilliant scientists, Drs. of every type working tirelessly around the World to find the answers❤🍀THANK YOU❤for this honest,yet sad video❤
I believe I am suffering from ME/CFS. Unfortunately I also have other health conditions which means my doctor seems to refuse to acknowledge or investigate.
Keep pushing, I eventually got a diagnosis of fibromyalgia after suffering from coxsakie virus for months. I am diabetic and have arthritis & PCOS so it was difficult to get drs to look beyond those as the cause of my symptoms. I know it gets exhausting to keep going to drs & getting nowhere, persevere if you can. It worked for me. Now I'm on a proper treatment plan; not cured but much better.
Good luck x
make research about Ozone therapy! : )
Thank you for this documentary. Very emotional and true, which is hard to look at (for me as a fellow ME/CFS patient).
I see the documentary is from 3 years ago, I hope things will soon change for ME/CFS patients, in treatment possibilities and doctors, governments and people taking it serious.
I had M.E and was bed bound for a year I couldn't even brush my teeth without being exhausted I got the doctor to come in and see me and she called me a lier and I was making it all up. I started getting better by myself and I'm so lucky but doctors need to understand that nobody would want to stay in their bed for a year I was also diagnosed with hypothyroidism also alot of people with M.E should I never want to go back to the part of my life I hate doctors now
Scottish Girl hey were u fully in bed? How r u now
Ozone therapy!...no body knows cause of big pharma repressing that....make research... ; )
Some doctors are just evil 👿 😢
Emma, well done on this film. Hope you continue to improve your health and can make more films. Best wishes from America. I have it too.
Ive had me since 2005. I was very fit,then after a 5 week throat infection bam!! my life as it had been was over.
I was diagnosed in 1982, thank the Gods my Doctor knew me before it struck. He told me the good news was that it wasn’t fatal, and the bad news was that there would be times I would wish it was.
I have had several remissions and crashes over the years, but you can’t avoid or predict when it will strike, or for how long. I have tried everything over the years…some helped, others didn’t. It is a horrible thing to deal with.🖤🇨🇦
After suffering from not only the mumps during my time at university, it was then immediately followed by tonsilitis and after I had recovered I thought nothing of it.
I was one of those people in my younger to late teens who could have comfortably entered a televised assault course such as Ninja Warrior and my energy levels were very high all the time.
Since my time at university I have been deteriorating physically in terms of my energy levels.
I have had success with drinking more water and eating better as I can eat quite a lot my appetite hasn't faltered. Even with exercise in a very strict routine improved my condition for the time I undertook it.
I have a family, mortgage and physical job so having time for routine or money for supplements is quite limited.
I know of late the gov have stared that they believe there are issues with the gut and immune system, which hopefully will shed more light onto the illness.
People not believing you is one thing but I believe this is changing and I'm finding more sympathy from those around me.
I do believe that cfs m.e. and fibromyalgia are in fact separate forms of the same area and even depersonalisation as I had been diagnosed with years ago has similar symptoms.
University was back in 2006 when I suffered the diseases and I have never fully recovered. My worst issues are my dizziness and heart rythem during small tasks and the fact that for many years I have felt like I'm living in a dream world, which is simply awful. Crowds are too much to bear yet I'm socially confident.
Whatever happens in the future I'm certain that we together will overcome this horrible illness.
Keep providing your own research to the medical world.
Good luck everyone.
Thank you 🙏🏻 I’m not on the young side.......60! And I have suffered CFS/Severe fibromyalgia etc., what help have I personally had? Not a lot.........Over decades of living a life of uncontrollable pain & stuck at home 🏠 or in bed is very debilitating! Fortunately I had done a lot before & with the wonderful family I have can slowly carry on! But, to see these beautiful girls whose life’s are in turmoil is outrageous, they need to be hospitalised & looked after & cared for, not left alone too suffer, I suggest the CFS & Health Authorities get off their backsides & do some work on this horrendous illness that robs you of your dignity & the feeling your lying! When people are dying!
I'm 54 and have been sick for 20+ years. I have no family so I'm on my own. I can barely feed my dogs and now my eating is almost nonexistent...that scares me the most.
suzie wong oh I am so very sorry to read you only have your dogs, I have always rescued my dogs & in return they rescued me! Your dogs are your family, loyal & loving & believe it or not make you push yourself even when there is no strength! I really do send gentle hugs 🤗 your way, please stay strong!
@@florence1395 you're very kind...❤🐾❤🌻
suzie wong stay strong my friend 💜
xanthe lennon I have tried for help, unfortunately after 7 years my disabled badge was taken away due to change in law! Can you believe it? I’ve had advice, bureaucrats is diabolical...........no help apart from little changes to home, but we have done it all ourselves. Never had one penny to help. As for help indoors I do it all with the help of my partner who’s amazing. I’m able to stay home & we fund everything ourselves.
I'm only 14 and I was diagnosed with M.E. when I was 12. Most days I'm completely bed bound, I get really bad headaches and muscle pain if I try to stand up out of bed. But the worst thing is that nobody takes it seriously. My mom says that I'm just using my illness as an excuse to lay in bed all day and nobody understands how bad it is. Please trust me it's not just that you're a bit more tired than usual, you literally feel like you're dying everyday. All my marks at school have dropped dramatically since I can't focus or remember things like I used to.
I'm so sorry you get met that way. I hope your mother watches this documentary and the one called Unrest. It might give her a better understanding. Obviously no one wants to stay in bed all the time, isolated from everyone and everything they enjoy.
I also hope you get better, even if it's just a little bit ❤️
My own kid is 13 and I've been sick most of their life, but only got diagnosed with ME two years ago.
I'm so thankful I have lived 85 years without anything like this. I had never heard of ME till I was reading a book where one of the characters had it so I did a search and here I am.
I was part of the earlier stages of an Australian study that found a protein marker in the urine in like 80% of patients & they thought that the other 20% was misdiagnosis. Back then ME/CFS/Fibromyalgia (Australia’s new fave) was considered an adult disease. I was in a support group for teenagers with CFS & we were like “ok, so if I turn 18 or 21 & I’m still sick, is it CFS then?” “If it *is* ME/CFS then what did I have before that?!”
My friends daughter was diagnosed in California when she was 15.
You had stupid Dr.s. Same as before you turned 18.😡
I just want to thankyou for this documentary on showing the reasuch on M.E it gives hope to us all that there will be treatment or a cure lets hope all doctors are hungry for info to make us better to listern and believe.
Omg the exercise! I can do what I can do but if I push it my body gives up. It's just so darn tiring.
In the last 18 months I’ve laid in bed 90% of the time. I feel broken that I’m unable to function. I have so much fatigue I’m barely able to cope on my own. I have a carer now which makes life easier. I don’t want to out on a sunny day nor do I want to look out the window. My muscles are weak, pain in my joints & unable to stand up more than 3 minutes. A recent visit in hospital after a major anxiety attack noted on a letter that I have ME.
The major problem I live with is pain in my lower legs. It’s like my shin bones are throbbing. Am I to say this is how my life will be from now on, a life in bed is a life not worth having