The mysterious disease that affects millions of people worldwide | DW Documentary
ฝัง
- เผยแพร่เมื่อ 6 เม.ย. 2022
- ME/CFS, or Chronic Fatigue Syndrome, is a severe neuroimmunological disease. Not much is known about the disease, and there is virtually no treatment. However, recent studies show that the effects of chronic post-Covid-19 syndrome greatly resemble ME/CFS.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, is a devastating disease. It often leads to a high degree of physical disability. Some 17-24 million people are affected by ME/CFS worldwide, with women affected more often than men.
Despite this large number of sufferers, ME/CFS is relatively unknown to both the general public and physicians. Even though it was included in the International Classification of Neurological Diseases by the World Health Organization as early as 1969, research into the disease is still in its infancy. Currently, there are no drugs or therapies available to treat the disease at its root.
Those affected are usually labeled as depressed or mentally ill. But the new virus Sars-CoV-2, which has infected more than 100 million people worldwide so far, makes the disease particularly relevant. Some people infected with Covid-19 still suffer from long-term effects weeks and months later - and their symptoms look a lot like those of ME/CFS sufferers.
#documentary #dwdocumentary #cfs #chronicfatigue
______
DW Documentary gives you knowledge beyond the headlines. Watch top documentaries from German broadcasters and international production companies. Meet intriguing people, travel to distant lands, get a look behind the complexities of daily life and build a deeper understanding of current affairs and global events. Subscribe and explore the world around you with DW Documentary.
Subscribe to:
⮞ DW Documentary (English): / dwdocumentary
⮞ DW Documental (Spanish): / dwdocumental
⮞ DW Documentary وثائقية دي دبليو (Arabic): / dwdocarabia
⮞ DW Doku (German): / dwdoku
⮞ DW Documentary हिन्दी (Hindi): / dwdochindi
For more visit: www.dw.com/en/tv/docfilm/s-3610
Follow DW Documentary on Instagram: / dwdocumentary
Follow DW Documental on Facebook: / dwdocumental
We kindly ask viewers to read and stick to the DW netiquette policy on our channel: p.dw.com/p/MF1G
![[Vowel]물고기는 물에서 살아야 해🐟🤣Fish have to live in the water #funny](http://i.ytimg.com/vi/3G9MH063Cx4/mqdefault.jpg)
All of a sudden the medical field cares about Chronic Fatigue Syndrome patients!!! After years of ignoring and gaslighting by the medical field, it's about time!
there's a clip from "golden girls" about the story of one of the characters developing CFS and being gaaslight by her doctors. it was known and named even back then, and still we are dealing with doctors invalidting us and providing us with no care.
No they dont.
No, they still ignore it.
Exactly! I'm 27, 13 years of chronic fatigue syndrome after mono at 14. Reoccurred with mono at 23 and around the same time got bitten by a mosquito carrying Ross River Virus... It's been even more hell-ish since then and I'm still expected to be a normal 27 year old. Gaslighting by not only the medical field, but society itself!
I came here coz of curiosity coz I feel the same thing but I ignore it now I know if what happened in my body...
The worst is being called “lazy” when you were such and active, helpful person before. Clearly there is something wrong and the person is just as frustrated with being “lazy”
People are so cruel My friend told me how people always thought her "lazy " when she has struggled and had to try and work harder Just getting herself out of bed has been a chore since age 16
You shouldn't call them lazy..
they try their hardest but just can't make it..and feel doctor or no one can understand
is this syndrome progressive?
It is so frustrating that ppl call you lazy because ppl can't see you are sick. You hear: everybody is sometimes tired, but they don't know how it to live day and night being dead tired and having pain
I would try Garlic suppliments, vitamins B and D3. See what happens.
I hate when people tell others or me (have an autoimmune disease), it's just to get up, be active and you're just lazy. That hurts and I feel for anyone with ME CFS. It's simply heartbreaking 💔
My brother does this... I hate it. He says our family isn't 'weak' and I need to get up and work.
@@elliedear7053 🌹
@@elliedear7053 That is so disrespectful. Hugs 🌹
it's pretty simple though. carnivore practically nullifies the impact any auto immune disorder has. megadose thiamine and take melatonin and u are good to go...
That's the worst. I'm so sorry.@@elliedear7053
I am 70 and have had CFS with Fibro and RA for 40 years. I am now in an electric wheelchair. Even with all the misery and the denial we've all faced, the most difficult part for me has been that my family has never once mentioned either of the words, Fibromyalgia or ME/CFS. This has hurt me to the core.The exception was my mother, who was very supportive. She's been gone now for years, but she sat in the courtroom with me; I was one of the first in the country to be put on disability for Fibro. I didn't have CFS yet. I'm also a victim of the DEA's and CDC's wrongful war on opioids starting with the CDC 2016 Guidelines on Opioid Proscribing. When I had pain meds, I managed a small home, a service dog, a car, etc. Without the meds I now live in a long-term care facility, and my life has gone to the dogs! I don't mean to sound so doom and gloom; I'm not like that. But bitter? Yes.
Mikhaila Peterson also had a tough time finding an answer. I pray you find hope with her story.
I am so so sorry! The saddest part about it is they have done this on purpose. They give the best doctors that only care for their patients and are actually there for them the hardest time, sometimes take away their license to practice medicine all together when they have done nothing wrong, and leave all of their patients to suffer. If our so-called leaders do not want doctors to prescribe pain medication, then why have they made it a legal medication if you are going to punish everybody that prescribes it and those that have a prescription for it. It makes no sense. It's just a facade for what they are really doing. They are hoping everyone that actually needs pain medication will not be able to get it, making it so we either turn to the deadly fentanyl laced heroin on the street, or end up in so much pain that we take our own lives, either way we end up dead- and that is how they want us. It's incredibly sad. You Are Not Alone!
I understand this too well ,since having serious side effects of my ra I'm been off all pain meds since 2020 and I'm housebound, I have fibro too ,with bowel issues, (blockage & adhesions) I've just been left to get on with it if I was an animal they would be charged with cruelty
I am beginning to wonder if they don’t want us to get better. I was in ATP/glutathione injections that helped me a few years back but the US government banned the ATP injections. Why?
I think what you have is a different diagnosis. You have RA fatigue aka rheumatoid arthritis induced fatigue. RA or autoimmune disease is the direct cause. You’re prob wheelchair bound due to degeneration of ur joints and severe joint & muscle pain. The symptoms can be similar, both severely debilitating.. But there’s no identifiable cause (etymology) for CFS.
I have never understood why the medical profession refuses to acknowledge illnesses they just do not understand. This is heartbreaking.
It is not that we do not acknowledge it, it is rather that we have no idea what causes it so we can treat it. You cannot treat what you cannot diagnose. As far fetched as it may sound to you, we do not know everything about the human body. Not even close. And no one is going to put all of these resources for a minority of patients who present this.
@@skonstas4683 I think what the commenter was getting at is there are unfortunately many doctors and especially beaurocrats (like boards or executives in pharmaceuticals) in the medical field that have a huge ego about their knowledge and their perceived omnipotence on the medical field being the pinnacle of understanding of disease and the human body. It causes unbelievable arrogance sometimes and they do things like laugh at patients, refuse or even demonize alternative treatments or discount real symptoms. I've seen this firsthand as the son of a chiropractor which is a heavily demonized profession in the medical field despite its potential for incredible results. Doctors and surgeons just can't seem to accept that back surgery that comes with risks and a relatively high long term failure rate at treating back pain could be greatly reduced or cured with a chiropractic adjustment. They will refuse to send them to a chiropractor to even try it before surgery; ultimately hurting their patients. I've seen many patients of chiros you can even watch on youtube where they come in with failed back surgeries where their pain has worsened and theres only so much the chiro can do to help at that point since their spine has been permanently altered and fused. Its horrendous; this also goes for other alternatives like diet; nutrition deficiencies, acupuncture, etc. Anything not 'medical' could be a target for persecution or dismissal by doctors or policymakers. It is a serious problem.
@Alistair Balistair That is exactly one of the things I was getting at in my comment as well. Doctors are not educated in nutrition (I think thats intentional by big pharma corruption into the medical schools) and diet and nutrition is one of the biggest factors in healing a condition or disease the natural way. Hopefully that will change but right now its almost better to do your own research than to trust a doctor on how to deal with metabolic syndrome. I'm not knocking the medical industry or doctors here but they often have this crazy arrogance and ignorance to alternative treatments and that needs to change; those alternatives could save thousands of lives they need to learn that they aren't the only option for effective care lol.
We should be able to understand this. I have read about it and answered questions in major exams. It is weird because the pt. seems normal, almost like a trick question but we know it exists and are aware..
When some disease is caused by one of their “safe and effective” medical procedures they are particularly good at ignoring it and those suffering.
I chose Chronic Fatigue Syndrome (CFS) as my final year research topic, but unfortunately, my teachers and professors, who were all from the medical field, mocked and made fun of my choice. They displayed a lack of knowledge about CFS and its prevalence worldwide, which deeply upset me.
Their behavior during my defense session affected my mental health, leaving a lasting impact on me.
Still can't get over what they put me through.
Living in a country like Pakistan, where access to primary healthcare is challenging, I find it disheartening to think that syndromes like CFS might not receive adequate attention and research, adding to my stress and concerns.
Your teachers are scientifically illiterate
That’s heartbreaking
Shame on them 😢
I'm so sorry, I now have ME/CFS sine 2014 and it is since 2014, when I stated studying for MSC Animal Behaviour and Welfare. I was mocked by the rest of the 16 (meateating) students AND the lecturers for my kindness towards animals and for being vegan and an animal rights advocate. I was rejected and isolated, humiliated and belittled...I feel like they broke my mind and the chronic fatigue ensued. I'm indian myself and it's not common to find veggie/vegan indians who care about animals, none of my family do, and they rejected me a long time ago for being different. Well done for standing up for us, Thank you Essa
@@kittykat8177 Thank You! You are an inspiration🦋 I know how depressing and nerve-wracking it is when you stand alone and get humiliated by a bunch of people who call themselves teachers, gurus and educators.
I hope you overcome your symptoms soon! Sending Love 💕
I feel sad that the documentary did not mention people who got CFS with out having had any viral infection, people whose trigger were stress or trauma
it happen with me*
Auto immune condition like soft tissue rheumatism also causes it. Or stress causes that. It is a vicious circle.
Yes, research shows that those who get these diseases have a history of high ACE scores and/or other intense stress.
I developed CFS bc of having fibromyalgia. Fibro messes with your melatonin production, causing insomnia.
And I saw someone mention the new opiod guidelines. Imagine being in pain, in spite of taking 200mg of Tramadol each day. My 'pain mgmt' team refuses to up the dosage, even when I'm in severe pain. They kept upping the Gabapentin instead, which has never helped my pain at all. So, a couple months ago, I told them I was no longer going to pay for an Rx that did nothing. I've started using THC gummies, which don't always stop the pain, but they do leave me feeling somewhat detached from the body, so my pain is not so immediate.
I've also learned to keep my mind busy, so I don't focus on it. I read, play games & watch videos. I've not been able to work since 1998, I need to lay down often during the day.
On top of fibro,, I have osteoarthritis in my neck, hip, back & knees, plus spinal stenosis & both bulging & collapsed discs in my back. The chiropractor is afraid to treat me. I tried acupuncture, but they could only see me one - two times a month & the struggle to get dressed & go out to the clinic wasn't worth the one or two days the treatment helped somewhat alleviate the pain.
The whole thing is a nightmare where I'm always exhausted & hurting!
A simple hernia operation gave me ME/CFS
I'm a biomedical researcher currently doing Multiple Sclerosis (MS) research. I learned many things from this documentary. This disease is at least 4 times more prevalent than MS! Research funding on me-cfs has to rise in the future so that more scientists are recruited to decipher this disease.
Thanks for spreading awareness
Love
CFS may be a mitochondrial disorder. I do better when I keep my Mg+ & K+ higher. And like many with MS, I cannot tolerate extremes in temperature.
Do you do a lot of scientific writing? Is there a lot of writing and graphical data in your career?
@@psychshell4644
Do you mean magnesium and K2?
Thank you in advance 🙏🏻
@@Phoenix_Arise_J No. Mag and Potassium (KCl)
@@psychshell4644
Thank you for replying. 🌸
The most frustrating things is that because you look ok.....no crutches, arm/leg in plaster, no stitches.....people dont think you are sick and often say "Just snap out of it." The exhaustion is very difficult to describe. The body aches debilitating. Just all round awful.
Yes I see that. I suffer from this too and I use a mobility scooter and people have laughed at me whilst I am on it. Because I 45 and look normal they assume I'm just on it for the fun of it. I've had comments, laughs, stares.
They just add to the sadness I feel because I already am struggling to live a normal family life as it is. I dont get to spend much time with my children because I'm always so exhausted and in pain. Sometimes I try push it but end up in extreme pain and extremely exhausted for a long time. Just getting to the bathroom seems like major effort. It affects my mind and moods too
Even when I've needed a wheelchair to get around due to the severe fatigue, I had a doctor suggest I was just "anxious to walk." Uh...what?? The amount of gaslighting surrounding this illness is so ridiculous.
Yes so true! Also I was thinking how so many will and have developed mental health issues on top of this. It's so frustrating g to see help suffering and can't get help or even have the issue recognized
@@Georgina7769 sorry to hear about it. My heart goes out to you. Hope the doctors find a medicine for this soon. I prey God for all the sufferers.
@@chronicallychic couldn't agree more! 👏🏻
I have thyroid disease and I know what fatigue feels like. Fatigue is unexplainable, it’s something you have to experience to understand.
Yep, it is so hard to explain
Same here, Hashimoto plus low cortisol. I know how it feels when one has no energy at all, or gets tired so easily. I had to quit my job , I just couldn't work at all.
I often say that it makes me feel like “dying” and folks get real worried. 🤦🏽♀️ And then I have to explain, “NOOOO, it’s such an awful feeling that it’s not that I WANT to die, it’s almost like being alive is just too exhausting!” They don’t get it. They immediately think I’m ideating. 😂 It’s the worst feeling. And I know pain. I have Lupus, MCTD/w Polymyositis, Fibromyalgia. But, even the worst chronic pain, I can actually handle. But, it’s the fatigue that rules my life. Every aspect of my life. The kind of mom I can be, employee, friend, sister, etc. I was once so vivacious! Friends used to make fun and call me Mrs. Headly. 🤣 cause I could have 5 jobs at a time. At one point, I was doing marketing for two of my friends that were starting their own businesses, and I worked at BofA in corporate, so, I started a networking group that has a few chamber of commerce folks and everything, I still had my corporate 9-5 though, I taught music on Sat mornings, did gigs son Friday nights and Sat nights, worked w a recording studio as a studio recording artist and writer, gave voice clinics free of charge to church singers one or twice a week after work in the evenings, and soooo many other things I’m between. Still did my church thing 3 times per week, and had a social life. Now, I just work and lay around.
My kids have never met the real me. That stuff hurts. But, it doesn’t mean I wanna give up. It means that I wanna fight harder.
Feeling useless and exhausted at the same time 😔
Hitting the wall or sometimes the wall falls on me lol
I also have this terrible disease and am only functional for about 4 hours a day (that is with a medication that gives me a couple extra hours of vertical living). The rest of the time I must lie on my bed. It has had such a huge impact on my life. I can't work. I have to pace myself with anything requiring effort. I feel alone.
What medication do you take that helps? I’ve got NO quality of life anymore
I take provigil 200mg. The generic is called modafinil which Medicare won't pay for because I take it off label so I buy it for 25to30 a month. It's not a cure but it definitely helps. Sending love. @@chelseyhurd
I am suffering the same. I offer it all up to God 🙏
I’m crying how relatable this is. And it hurts that no one understands.
This is a real syndrome. People are not just making it up. Modern medicine doesn’t understand everything. There’s so so much that we have yet to learn about the human body and what can go wrong.
Hi
We aren't designed for this rat race lifestyle. This is no mystery.
Thank you I stop going to doctor’s the
they tell me that everything is in my mind that it is depression that I do not make an effort to help myself I have tried to kill myself several times because I even wonder if I put all this in my mind thanks for talking about this subject I have lost all my family and friends
I went to the doctors about my posture, I can clearly see my body is slightly twisted not really bad to affect organs but it's not good, he told be to lie on the bed and lift my knees to my chest, he asked does my back hurt in that position, I said no, he said everything's okay, that's what I pay tax for, doctors nowadays are terrible, when I was younger, the older gen doctors were great now these new ones are just robbing a wage, can't do their jobs properly, receptionists don't answer the phone, back in the day, my mum would ring up for me as soon as the doctors opened and boom you've get through straight away, fair enough may not have same day appointment but the commutation between the GP surgery and the public was great, where as now, good luck getting through, it opens at 9 i think but you'll be ringing until 10 to get an answer. Joke
It’s a leftist fake disease also known as “laziness”.
I have been diagnosed with Fibromyalgia and CFS. It effects everything and I have to deal with ignorance from people who think that just because I don't look sick I must be faking it. I have been dealing with this for 17 years. I am Canadian and I have had to fight for disability and it has caused depression and anxiety. I hope that these researchers can help.
Your story may as well be mine 😶
Iam the same fibromyalgia and CFS
Some people make up fake shit and it ruins it for other people who really have problems, hope you get better.
@@dwynepen7626 Yes it would be great to be part of this research, we have never been able to figure out how I got it. But I do remember being hospitalized for a week for an infection that they could not identify at the time. I wonder 🤔
@@hul8376 NJ
People keep saying the worst bit is we don’t look Ill. yes we do, we look tired and haggard. I used to look healthy.
People keep saying there’s no way of testing it? What about those of us who were sporty before and have been wearing a fitness watch for years. The numbers are crystal clear.
Just because medical professionals can’t find the cause doesn’t mean it’s not there. A fine example of incredible arrogance from the medical profession.
I used to be a long distance runner, now have CFS that gradually came in over 6 ish years and can barely walk without feeling like im gonna pass out from fatigue. Did you have a smart watch pre and post CFS? If so what differences did you see ? I'm interested.
hi, @ratgreen I’m sorry you have been living with this. Mine came on gradually over the years too. I was diagnosed last year after a virus.
Yes I have had a smart watch pre and post CFS. I get chronic neck pain too. My tracker whilst having CFS shows high stress during sleep. Higher resting heart rate. Decreased VO2 max (although would decrease anyway with stopping training). I slept 15-16 hours per day. Sometimes for days at a time I wouldn’t get up. Unrestorative sleep. Low HRV Higher breathing rate during rest. Pre CFS I was considered to have a fitness age 6 years younger than my actual age. I know they’re not considered accurate in medical terms but they’re consistent in their inaccuracy.
I have improved a little by pacing and keeping a diary of everything over nine months and changing things that I see as triggers.
Each day track
Pain level
Sleep
Body battery/energy level
Food
Water intake
Mood
Stress factors
Meditate
Patterns will emerge. Find a medical professional who will support you. Do not listen to negativity. Don’t lose hope.
When we know nothing we need to know everything.
@@lucyilly428you are a fighter❤ I too am suffering in silence . I have kids and am a single mom. I’ve thought about ending it… but my kids have saved me from giving in. I am slowly getting better… but then I feel myself regressing . It’s soooo frustrating. May God help us all.
@@Dream7773 keep fighting. I’m getting there although very slowly. No naps during the day anymore and sleeping 9 hours. You’ve got this.
@@lucyilly428 what do you feel helps ? I try to exercise but then I feel tired for days afterwards . I used to work twelve hour shifts before and feel fine… any advice?
I was diagnosed in 2008 with CFS. When I asked the doctor what I could do for it, she told me that many of her patients go on disability. That wasn’t an option for me. I did reduce my work schedule and started taking supplements.
I feel like I missed my kids’ childhoods. Always looking for extra sleep or rest, even routinely taking an hour nap at work instead of eating lunch. I started making noticeable improvements over the last 5 years. I still manage my energy expenditures like a checkbook.
Switch doctors, also give daily meditation and prayer a try for three months or so ☯️
@@ascend555 There is hope , Supply ur body with highly nutritious food , Avoid exercise go for walk and try brain retrraing. Keep checking every month definetly all will get better , I am sure , We are humans capable of creating all sought of complex machines , But cant find solution for our own health.
Alison Braun's explanation of CFS about the "battery" is spot on. This is exactly how I feel with my CFS. I asked one of my sons once that when I died what kinda memory would he have of me and he said "You slept a lot". The truth always hurts and there is nothing I can do about it. Bless all those that are suffering.
I feel so bad reading this, because my kids are gonna say the same when they get older, because they say now that i already sleep alot, they 4 and 7 i hope better days are coming
You got ill after having your son? This illness sounds so scary. 😢
When my daughter was in reception they asked the children what their Mum's were good at. My daughter said sleeping. Goodness knows what they thought.
It pained me at the time but she's an adult now and we had/have long chats about her childhood and my illness and she doesn't feel she missed out at all.
I was always honest with them both about how I felt and they've never known me any other way. Don't be be disheartened
@@melissarozaliaplease check your iron (ferritin) and vitamin D levels. After two deliveries you might get iron deficiency anemia due to blood losses.
I had my son in 2001 after being diagnosed in 1995. Your son will remember other things, trust me. My son remembers the days we stayed in pjs and watched old sitcoms in bed while I was too weak to move, he is grateful for all the times I pushed myself to take care of his needs because he has an understanding as an adult how this condition works having lived with me his whole life. He is thankful for the little things and will remember a mom who loved him more than anything else and who took care of him while being chronically ill with not just ME/CFS but 19 other serious conditions including constant chronic pain that never stops. I have also been a single mom since 2002 so it was really hard, there were periods where I was bedridden for over a year.
I've suffered with fibromyalgia and chronic fatigue. I'm always stiff and tired. Headaches, pain, IBS and depression. I wouldn't wish it on anyone... horrible. Having no energy all of the time and feeling sick is just horrible!
Its like a body migraine. With head migraines thrown in. Its miserable
My dad was diagnosed at 17 with me/cfs and it's still a struggle but when I was around 15 I started to develop very very similar symptoms to my dad and kept worsening. I was later diagnosed with eds (a genetic connective disorder) and various forms of autonomic dysfunction. All three of those conditions have such little research or support. It'll always be in the back of head of if my dad has EDS+dysautonomia or if it's just a coincidence that we both have such similar experiences. We desperately need more resources and for those who aren't diagnosed, so many people out there suffering behind closed doors with no accessible support. We need more research. This condition can lead to such an isolated life with a financial strain and leads to mental health issues because we get left behind . The people in this video are so so lucky to find such passionate doctors , very few do.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth.
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
Maybe I missed it, but what is the treatment?? Is it curable?? @@abstuli1490
I suffer chronic fatigue and I have the answer through years of experimenting with my daily schedule as a student. I am 25, it has gotten particularly worse since I began my university career. I can tell you one of the leading contributors is diet. Specifically, carbs. If you experience the textbook disorientation where you feel like you just aren't even existing, you cant speak coherently, your thoughts are rushing, you feel anxiety, tired, blurry vision, like you aren't all there.... it's your diet. And in my opinion, its the carbs.
I'm vegan and keep carbs to a minimum because of a high genetic/familial risk of type II diabetes. I eat a lot of protein rich food. I still feel as bad as I did before I became vegan. Whilst too many carbs may *worsen* brain fog for a few people it's not the cause.
Chronic fatigue is not the same as CFS which is not the same as ME.
@@22Purplemist
If you reason for being a vegan is only health, please consider looking into Zoe Harcombe. She does a fantastic job of showing the reasons eating meat is better.
Shes a nutrition scientist and researcher out of Australia. Many of her talks are available in TH-cam videos on others channels.
I’ve been on keto for 3 years, and still have chronic fatigue. I’d like to try carnivore when I can afford it.
As someone with depression I could relate. Losing part of yourself is really something big, moreover with whole world calling you dysfunctional
Soo sorry. Pray ask JESUS to heal and guide you. Kevin la Ewing is a pastor on these illnesses he helped me.
Same, friend...same.
I can relate. I can sleep 9 11 hours and I never feel rested I always feel tired. I just always want to sleep. I’m always so tired and depressed . I just feel my life is passing me by.
I'm glad I saw your comment. I was thinking that maybe this was a severe case of depression but, I've never been severely depressed so I'm ignorant to this topic. If you're able and don't mind, can you explain the difference between the two illnesses?
I can relate to feeling paralyzed. Inside your screaming "get up, GET UP!!!" but your body just doesnt move. Sometimes my muscles flinch like they are trying but nothing. Just nothingness. It's frustrating and embarrassing
UPDATE:
Since January 2023 I have been mostly carnivore and my fatigue, joint pains and brain fog have all but disappered. If I slip up, I can feel some slight joint pain and feel like I need a down day but nothing like the dark days of sleeping round the clock.
However, I have lost three stone on the diet and been doing heavy DIY and gardening and mucking out my horse and riding again. I all but lost my 50s but at 64 I feel better than I have done in years.
> I developed ME/CFS in 2006 but it wasn't diagnosed until 2012. Quite by accident I discovered that having a mainly keotgenic diet (minimal carbohydrates) improved my condition considerably. I was literally bedbound for about 5 years but I have recovered to a point where I can manage much better - actually being able to get up and pacing mysef. It took a long time though and I couldn't predict how my condition would progress. Encouragement by others doesn't work. We have to recover or improve at our own very slow rate. Much love to all my fellow spoonies.
How's your vit D levels?
I too had CFS and Fibromyalgia until I got underlying viruses in check with herbs, increased vit D and went on the autoimmune protocol diet.. Feeling much better
I got ME in 1982 and was sick for 6 years then I got a little beter. Now I am on keto for one month and my iron level is very high..dont know if I am doing the right ting. Best wishes from Amsterdam.
I do not have this diagnosis but have been sick post Meningitis from 2012 ....10 years and they thought Lupus Fibromyalgia IH Pseudo tumor... and they really don't know. This documentary was my life 100...
I struggle with pacing my self....bad
A good hour ..I over do it. .BED....
My 80year old neighbors out do me...
Pain!!!! Sugar makes me bad ....
Going to Keto!!!
Any suggestions with my Drs. They don't know how to help me ...
Watching Dr Berg TH-cam channel
I want to do his Vit D protocol for Autoimmune.... Have you done it?
@@heddysue0655 please share more!!!
I am ill. I need the information on what your protocol is. Check Vit D levels and notice sugar and process foods cause more pain and
The Sleep Disturbances are horrible!!!
Christine, You spoke my words. I was diagnosed in 1993...many years ago long before it was recognized in mainstream medicine, I was a critical care nurse and in my 30's back in the 1990's. I had nearly died at age 3 and at age 15 with pneumonia and after that I was never the same. I remember at age 8 I was so tired that some weekends I would sleep from Friday after school clear through to Sunday afternoon. My parents took me to the Dr. and he gave me iron.
I went to university, became a nurse and had two children, but I suffered in silence and pushed through. Finally I found the Edgar Caycee clinic in Phoenix..after a full day of testing and questionnaires I got the diagnosis. Back then it wasn't an official disease but it is now thankfully. I've managed my symptoms by taking 20 supplements a day and a low carb diet, however now at age 65 I'm once again in a crash.
I totally relate to what you've gone through.
Im a Canadian lady. I have suffered since I was about 32 years old. Im 58 now. Its been so horrible. My bones and muscles are killing me. Taking aĺl my strength. This is serious illness. Fatigue is awful. God bless everyone in research and suffering. Amen
I am positive that I can help if you give me a chance. CFS is a syndrome, which means there is something causing it to occur. I have over 35 years of experience. Please read the About section of my profile and contact me via email if you would like help.
I’m 60 ….same here
@@beefstew4698 I wish we had answers. Are you able to work? Im really struggling.
I have suffered with cfs for over 40 years. I'm now in my 70's. I've been thru the, "you're lazy" attitudes to "you just need exercise" advice, to referral to a psychiatrist. Mayp Clinic's best advice in 2008 was to arrange your around it.With the surge in cfs patients post covid, I hope it finally gets the atten this devastating illness deserves.
I went to Mayo last year and they said the same thing:( recommended the usual pain meds, anti depressants, therapy, mild exercise. I was extremely disappointed
You must have incredible inner-strength to still be fighting after 40 years! I developed ME 34 years ago... exactly half of my life 😔... but - like you - I'm still here... every day a fight. More power to you dear lady... ❤️
my sister has had chronic fatigue since 2015 and she was only 11 when she got diagnosed but the amount of people who judged her and criticised her, calling her "lazy" was more than too many. It was so heartbreaking watching her suffer everyday and having to explain to teachers and other people her situation but no-one really understood her even though she was in an out of hospitals all the time and was on countless medications. She had to change schools because of the lack of support she had and now she prefers to not tell anyone so she isn't judged for it. So sad that so many other people have experienced similar situations!
Check her haemoglobin. She might be anemic. Wish her good recovery 🙏
Your a beautiful sister
True
My husband just tells everyone we know that my asthma is really bad, then I get weird amounts of sympathy. It is bad but it doesn’t bother me. Having little energy bothers me and I need help, but what I mostly get is judgement, (hence the asthma excuse). Still, I don’t get help with the asthma excuse, I just don’t get judged.
This is true of so many sufferers. Including my daughter. Sending lots of love. Tell her to be kind to herself
My heart goes out for all the sufferers of this disease.
It's just hypochondria
@Destiny the pain of being a lazy bum?
@@PepsiMagt if only it was just that lol
@@PepsiMagt I take it you've never been ill ? Or had a close family member with a similar affliction ? Before I got fibromyalgia I would have agreed with you.
@@PepsiMagt Did you know patients with multiple sclerosis used to be called lazy too?
Please look up M.E. in a medical journal. It’s real.
It's so sad to see. I was diagnosed with MS not too long ago and I know what fatigute and simultaneous pain feel like. It's near impossible to describe the impact it has on wellbeing and mental health, meaning people will, sometimes unknowingly, put a lot of pressure on you in daily life. Keeping a job has been a challenge, it's a struggle every day and sometimes even healthcare professionals will dismiss concerns - a cold for someone with chronic illness isn't the same as a cold for someone who's otherwise perfectly healthy, for example. I really hope that ME/CFS will be better understood sooner rather than later so that everyone affected can get the help and support they need.
Wow! Thanks to the guy, who bring this illness to the world stage. Our fellow human beings, who are considered healthy, will never understand anything in relation to this illness, cause they are not living on a low battery supply. All i can add, is my people suffering with this illness, you are not alone, even though i am suffering with thyroid, just enjoy life with the little battery you have left. God bless & love you all.
Every time I get a cold I relapse and get much worse for months.
The problem is everyone, even medical professionals, want to view this solely as laziness.
As someone who has suffered with this horrible life changing condition for a few years now, I am happy to see it being looked into more.
Ja, het onbegrip van mensen is het moeilijkste…….Je praat er op een gegeven moment niet meer over. Wat je niet aan de buitenkant kan zien, bestaat gewoon niet…..heel frustrerend.
It is encouraging, isn’t it. We can hope that a biomarker can be found, so that people can get funds to help - it is a disability.
But a cure would be the best!!
same here! It's too bad my doctor didn't take me seriously when I asked her about it. It was awful, I had zero energy and after coming back from class I just wanted to go to bed. It wasn't laziness, but idk it was hard to explain how my body just didn't want to do anything. It comes and goes every so often and I hate it.
I hear U !
@@febee5285 ln look
This is by far one of the worst illnesses you can have. I've had it for 11 years now. I've taken almost every psychoactive medication, seen every specialist, supplements, you name it with very very little improvement. Every single day feels like war zone, no refreshed sleep, wake up extremely tired, brain fog, have to wait for 3 hours until I'm able start talking to people, muscle pain and not only that, but now have anxiety which also led to depression. I have a masters degree and many professional certification but have to fight to do simple tasks, instead of working, exercising and living life. I really really hope the medical community comes up with something that can treat people with this illness. Feel breathless just typing this on my phone. My heart goes out to everyone who has it and has to go through it.
Actually, most people with ME/CFS are NOT depressed. There have been association studies. Most doctors are not aware.
The key to improvement is to avoid all pharmaceutical drugs.
@@sneakypress and avoid toxicVaxs
I stopped eating meat, eggs, and dairy a month ago and suddenly actually felt happy with energy. It’s like I was depressed before but not actually depressed. Probably better described as apathetic and tired.
Tobi P
0 seconds ago
I was diagnosed with CFS back in 2014 after getting a flu or some type of virus. Before I got sick I was very active and ran or rock climbed every day. I came down with CFS after the flu because I didn't allow my body to recover fully. I was sick for a week, felt better on the 7th day and then ran a 10K race the day after. That evening I got sick again and felt that way for the next 1.5 years. It was the worst period of my life. No one believed I was sick and I didn't have the energy to do anything besides sleep, which I couldn't do. Even if I did manage to sleep some I would wake up just as tired and sore/aching all over.
Fortunately a doctor told me that there was anecdotal evidence that resuming exercise can help. Which was super counterintuitive because I was always so tired, exercising was the last thing I waned to do.
Anyway, I started a routine where I went to the climbing gym every other day and climbed/moved my body lightly for an hour. The other day I would walk and eventually jog for 30min. Eventually I was able to go longer and longer. After about 2 years I was close to where I was before I got sick. It still comes back when I experience excessive work stress or am overwhelmed but I now recognize the symptoms and know when I need to slow down but I always keep light exercise as part of my routine.
For me the "cure" was resuming exercise. It wasn't an overnight fix but over the years I have had less and less symptoms.
Look into Lyme Disease, and confections like babesia and bartonella. If you’re based in the US, look for ILADS Lyme-literate doctors. It is multi-systemic and can produce symptoms of CFS.
I had a liver disease and experinced extreme fatigue for a while. That was the only time when i really thought i was dying. My body was just barely holding on and i'm extremely sorry for those who have it as a chronic case😕
physics girl on youtube developed this condition as a result of long covid, and she's been sharing how debilitating it has been on her channel. it looks absolutely horrific to go through
I came here from her channel today.
I am surprised how she still hasn't recovered.
I did some research and apparently it can even last a lifetime. I hope her a steady recovery.
My heart goes out to all the sufferers.
long vaccine
@@Taydrum got any peer reviewed scientific evidence for that claim?
@@spookyweedwitch No, because these things take many years to develop a documented case study. Besides, you're "peer reviewing" scientists wrote articles on how the vaccine would prevent these types of things from happening, and they got that wrong. Additionally, they ostracized any researcher's articles that suggested otherwise, thus removing any credibility they had.
@@Taydrum so you admit you have zero proof that vaccines cause these types of symptoms. gotcha.
Thank you so much for bringing this up. The medical community is so unaware of this, and most practitioners, even in the developed countries ignore patients with ME-CFS as malingering!
Thanks for watching!
Speak for yourself! YOU are not the MEDICAL COMMUNITY.
@@v.prestorpnrcrtlcrt2096 looking at your other comments you say nothing positive mate.
Do you speak for anyone of note?
Maybe take a break from the screens, take some deep breaths mate.
Come back more positive. A more useful member of the TH-cam community.
This disease is far more brutal than your words could ever be, I promise you that.
Maybe try supporting those worse off than yourself instead of conjuring false flag arguments against total strangers.. 🤷🏼♂️
Most doctors take symptoms like this seriously, you’re not making sense.
@@delmarchipperson2049 yeah they have a serious expression on their face when they listen to me but I’m yet to meet one that says
“I can help” ..and can actually help.
Graduated exercise is not the solution.
What’s your solution?
How dare a doctor assume that a thick medical file is indicative of the source of illness being psychiatric. That is an outrage. So-called doctors like that should lose their licenses. They're not even practicing medicine. They are practicing avoidance of learning about what's really going on with people. That's heartbreaking to hear.
I have had the same response..
@s s a lot of doctors are very lazy. They don't actually want to do the work to figure out how to help someone, so they'll just sum it up to psychiatry. Lame. No excuse for that. Some people do have less healthy bodies than others. Fact. The doctor who wants to sum it up to psychiatry rather than try and understand the patient and the complaints should not be in medicine.
One of my kids had a thick medical file, along with a legitimate diagnosis, migraines. It took a long time to find the right combination of meds. I can't imagine what it must be like when doctors don't try to help. I hope that changes soon, for everyone's sake.
@s s that’s an excuse. Scientists are finding out a lot of ‘crazy’ is actually caused by inflammation. (I.e. it’s a physical malady not ‘mental’). It’s a cop out by ANY doctor to assume ‘’psyche’’ and pass the buck, at least without doing in-depth search.
@s s some people are for sure.
But they are doctors out there who if they don't know something they assume the person is crazy.
These people should not be called physicians, they are a joke.
Like so many others I’m just about to hit my 33rd anniversary with ME/CFS. For me it started after my first round of Mononucleosis. I was a freshman in high school and I have never fully recovered. I have learned how to semi manage things but in the end, I am still at its mercy. If I overdo it or experience too much stress (physical, mental, or emotional) it will roar with a vengeance.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
Look for
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
There is hope , Supply ur body with highly nutritious food , Avoid exercise go for walk and try brain retrraing. Keep checking every month definetly all will get better , I am sure , We are humans capable of creating all sought of complex machines , But cant find solution for our own health.
Yes, it starts with mono, then it goes deep, and can stay dormant for decades, rising up again after times of emotional or physical stress.
The Epstein Barr is associated with CFS and Mono.
@@iamnoob7593 this is a horrible thing to say to someone when they mention a chronic illness that is INCURABLE. I know it seems good to you, but it's just so incredibly rude. I mean there is NO CURE. there is NO TREATMENT. and you think you can give this person hope by saying "lol eat good food idk?" get a hold of yourself!
I got really bad fatigue when I got covid and lasted about 3 months. I literally thought it was never going to go away until one day i started getting my energy back. Fatigue is a ugly thing to go through
I’m so glad that attention is starting to be paid to this awful illness. I’ve had it for 8 years. Most people don’t understand how painful it can be and how incredibly isolating it is to deal with something even most doctors don’t understand. I have even been laughed at by a couple of doctors. Others told me I was depressed or had some kind of mental issue. I had mono when I was 6 years old. Then when I was 28, I experienced a reactivation of the EBV and have never been the same since. I’m 36 now and have good days and bad days. On the good days I can do a small amount of exercise. On the bad days I can’t get out of bed or even pick up my phone sometimes. Everything hurts and no doctor has ever been able to tell me why. It took 6 years to get a diagnosis, after which I had already lost a career because my job required me to maintain a medical certification. My medical certification was revoked and I couldn’t work that job anymore and had to leave with student debt from the degree that I got for that job. It’s taken years to even begin to come to terms with it all and with how my body works (or doesn’t). I do what I can and hope for the best. And in the dark moments when I feel overwhelmed by emotion and despair because this illness isn’t showing signs of going away any time soon, I think of my family and friends and reach out when I can. And most importantly, I find something, anything to laugh at; even if it’s dark and twisted. Laughter, loved ones, music and my pets have gotten me through so much. When documentaries like this come out, it reminds me that there is still hope and that there are people out there who care and just need the right support to get the right research going so we can tackle this thing once and for all.
I hope we get a cure. I'm a depressed bum who feels fatigued all day, and yet, I can't imagine what it would be like to have it be 100 times worse. It's good that you understand the value of your people and the wonders they can do to your morale. My beat wishes to you.
There is always hope and todays medicine is about to be revolutionized with modern technology. Keep holding on and don't give up. Although my health issues are different from yours I find that looking after my mom who is housebound and our pets Dog and a Cat keeps me going as they very much need me. Remember, don't give up.
I don't know if this will help you, but I had CFS for over 8 years and went to many doctors and hundreds of blood tests with no results. I had headaches all day long, bones and joints were very painful, my eyes were so painful that I could barely open them, and of course the constant fatigue all day. Would sleep 14 to 16 hours with no relief. It was a local Hometic doctor that specialized in CFS who put me on over-the-counter homeotic supplements that finally and slowly brought my energy back so I could lead a halfway normal life. I still have small flare-ups that last for a week, but nothing like it was at first. No more crashes!! I wish you the best of luck, please get better.
@@johnbreech6280 were these supplements helpful in rebuilding your mitochondria? This seems to be a key point.
@@johnbreech6280 please let us know your prescription and doses
I've had CFS and fibromyalgia for 35yrs. People are not understanding and expect you to be able to at least do this or do that, they can not possibly imagine what I'm going through. I got Mono, EBV, and haven't been the same since. I was a hyperactive workaholic, until this happened, and it ruined my life.
Do you know if this is hereditary?
@@saifeerahman4925 Only the susceptibility to developing the illness is hereditary.
Female and autoimmunity plus viral exposure and genetic predisposition. We are finding long Covid in women presents similarly
I am so sorry to hear you had CFS. You may want to refer to Dr Emoto on water experiment. The research may lead to the answer to cure CFS. You can find out more details in TH-cam.
Those things could all be related to the heavy metals and other toxins in childhood vaccines that our bodies cannot truly ever fully get rid of, eventually it starts negatively affecting more and more systems, up to and including the brain. A lot of what is being called genetic disorders are actually just genetic or circumstance differences of people’s ability to detox or safely store (in fat) the toxic injected substances most of us encountered but had no idea was so nasty.
Finally, after all the diagnosis and the suffering I’ve gone through you’ve hit the head of the Dale this is exactly what I’m dealing with. Thanks so much for your help.
I've had ME/CFS for 6 years. Life has drastically changed but I've learnt to pace, mostly. It's hard to accept; takes time. Thankyou to all involved with this great documentary ❤🎉
My father had CFS back in the early 90s. No doctors believed him. He had chronic insomnia and terrible headaches in addition to crippling fatigue.
He died in 1995 at 45 due to pneumonia, but I'm convinced the chronic exhaustion contributed to his death at a young age.
I’m so sorry you lost your dad.
@@anthonydomanico8274 I appreciate that Anthony
My condolences to you.
@@razorsharplifestyle101hard9 Thank you ❤️
I lost him when I was 22. I just turned 50 and I still miss him terribly.
@@shellbell313 Well, you can either miss him for the rest of your life or get over it, process the emotions and then you can live your own life, the way he would've wanted you to.
A big thank you to the people who chose be a part of this documentary. You're being a great part of the awareness. My wishes go to all of you who suffer. Especially my dear friend who's been affected for years. Be strong
Thank you for benig such a good friend 🙏🩷🙂. Many people (perhaps most) who are severely disabled are extremely lonely and without much positive and rewarding input.
This is by far the worst of my chronic conditions. I can handle the pain, but the constant fatigue sucks every bit of joy out of your life. And no one who hasn't experienced it understands.
I am positive that I can help if you give me a chance. I am a real human with over 3 decades of experience. Please read the About section of my TH-cam profile and contact me via email if you would like help.
@@etdmike I'm willing to try pretty much anything, unless it's dangerous (or super expensive, then I couldn't afford it). So yes, I'll check it out! There's not a lot of research about the issue and pretty much everyone tells you they don't know what to do...
@@awetistic5295 Trust has to be earned. I will identify a conclusive pattern of symptoms without knowing anything about you, show you exactly where the infections are located and guide you in the right direction to be "properly" tested. This will show you that there is an underlying infection causing everything. This needs to be done via email to respect privacy on both ends.
I have been dealing with this for 6 years. Although I get better with time, I still have some bad days.
Remain balanced and grounded 🧘♂️🙏
Symptoms will continue to come and go, change and worsen without proper treatment. There is an underlying infection responsible for your health matters that needs to be identified, treated and fully eradicated.
I recently found out I have active Epstein-Barr virus. Complained about fatigue for years just to hear “there’s nothing wrong with you. There’s nothing on your blood test.”
They just weren’t doing the right blood tests.
Apparently my latest episode, from the last two years, is from the toxic fireworks. Last summer I could barely get anything done. Mow for 10 minutes sleep for 45.
Where I moved, two years ago, the people are insane with the fireworks in town. You can barely see a block away for the amount of smoke.
The poisons can linger in the air for weeks if not months depending on the environment.
I’m currently on a detox diet, from a doctor, and I’m feeling a lot better. But what is the next Fourth of July going to do to me?
I’ll be staying indoors with my air purifiers going for at least two weeks. When I go out after that I’ll be wearing an N 95 mask. As bad as things were last year, if I’m not careful,
another year and I’ll be bedridden.
Check out your environment and my current doctor ran 26 different blood tests. How many did your doctor run?
My Dad started having medical issues in the late eighties. In 1990, he had to stop working. CFS wasn't heard of before. All doctors could do was guess and document his condition. Without a solid documented diagnosis, he could not receive disability benefits and my mom had to carry our family of 5. He tried going back to school to get a teaching certificate, but CFS can also limit your mental capabilities in the energy it takes to learn and process information. He was not able to finish. It took my parents over 10 years fighting with SSA in hearing after hearing to finally be awarded benefits. This disease has taken him from himself, his daughters, and his wife. Although he is still with us, we lost HIM 32 years ago. It's hard grieving someone when they are right in front of you. It's even harder when they grieve for what they lost themselves.
I'm so sorry to hear 😭 I've had it for over 12 years now and I know how painful it is when you have a family. May I share something with you that is helping me? I'm not healed yet, but I've found relief from symptoms. Raelan Agle (here on youtube) also had me/cfs and she healed after a decade. She's made it her life's work to interview loads of people that also healed from it. For me the latest interview with Ben Ahrens helped a lot.
That is so tragic. It seems like death would have been kinder.
Similar to Alzehiemers....my dad is still alive at 83 but he is lost to us and himself.
@@juanitarichards1074 so sorry you and your family and him have to endure this.
@Jim Harrington Similar enough....
Watching this , makes Me angry that this illness which I have had for over 20 years has so little research happening . We need a diagnostic test . We need treatments. M.E destroys lives . Why is it ignored ? Long Covid is getting a lot of attention .M.E sufferers have lived with a long Covid type illness for a very long time . Sadly We have waited so long for scientists and doctors to give us a glimmer of hope .
Yes! I knew the second I heard "long covid" interest would raise, such crap but also yay...
Drink sea moss and spirulina...all energy is from the Sun, plants are the only things on the planet to store the sun's energy, Sea moss has 92 minerals, the body needs 105 spirulina provides excellent protein and b vitamins even copper iron and magnesium. Low sodium, low iron and low b vitamins are what can create symptoms of chronic fatigue and it doesn't help if the patient is only drinking 1 litre of water per day...so a lot of complications can be resolved by giving the microbiome what it needs to perform what over 3 million years of evolution has given us
Michelle Shelly Style Whether or not there is a diagnosis YOU KNOW you are ill. NOW, it is up to you to change the outcome. Read the comments on living a healthy lifestyle. Fashion over 60 just might be what's killing you. Get back to Nature, dump the makeup and petro products. I wish you well, it's up to you.
Because i know 4 people who have claimed they have m.e get full benefits yet ive seen them run up stairs go on holidays and music festivals etc.
@@chinookvalley
I find your comment ill informed and insulting. I've used no petrochemicals in or around my home for decades, have used no cosmetics for many years, have used only the most organic and safe toiletries (mostly homemade), enjoy nature when I can, also have the pleasure of being with two small companion animals, and eat a clean keto diet with intermittent fasting. My me/cfs is still out of control and yet, according to you, getting well is up to me. Do you have anything of value to add or just more glib platitudes? Blaming the victim is vile.
How sad it is to be shunned from everyone and in so much pain. I don’t have the energy to fight for myself anymore 😢
I’m close to being at that point. It’s scary and sad.
I was diagnosed 35 years ago with CFC. I've explored homeopathic remedies and learned to listen to my body. In the early years the doctors kept trying to treat me for depression. I spent years bedridden and fighting flu/cold symptoms. My body takes two to five times longer to recover from illness. The interesting thing that when I had covid, it just felt like a mild relapse of my CFS symptoms. My body recognized it and I recovered very quickly. I rest when needed but I've learned to manage my symptoms and live a pretty good life. There is hope for those in the early stages of CFS.
try potassium and boron
what did you try for depression?
The symptoms do seem alike. My theory is that the illness is a viral overload that the body is fighting
Any advice you can share for someone newly diagnosed
How awful, I never knew it was this bad. So sorry for anyone suffering with this condition and I just hope a medical breakthrough happens soon.
Hoping and praying a medical breakthrough does come through the thought of getting back to somewhat of a normal life is only a dream for me right now. I miss the old me, my children miss the old me and my grandchildren have only ever known this m.e
I am 45 years old with adult children, teenagers, and younger children. They all miss how mum used to be.
Thank you, my whole family thinks am lazy, for years and years :-(
Hopefully they find a cure
Thank you. Truly. It's a horrific illness.
Thank you so kind of you to take time to watch
I’m sorry for all of you suffering with this. It must be so horrible to have your pain denied, and expectations of you not realistically match your abilities. I send you empathy. I care. I hope you get good treatment and relief.
Thank you. It is debilitating.
thank you, its really tiriing
That's so lovely to hear from someone outside the ME world, thank you for understanding:)
@@EndersWorlds You’re welcome. Thanks for sharing.
It's nice to find someone who understands, thank you!!
I'm constantly having to explain how my illness makes me feel, but I feel like she doesn't even care! All she can see is me walking around with a smile on my face, but what she doesn't see is the part where I will only be able to go from my bed to the bathroom and back to bed!
I also have severe anxiety, and to cope with having to leave the house, I will put a smile on my face when I go out the door, and take it off when I come back in again, much like putting on a coat or a jacket!!
I have this illness. I first got it 30 years ago and was so ill I figured I was dying. I received help in NYC and was able to recover to the point where I could live my life. However, I always struggled with bouts of exhaustion. But about 1 1/2 yrs ago I got sick again. This time I can't seem to recover. Am trying everything. Hoping, praying, these researchers come up with more treatment options. It may be that many are needed. I don't experience the brain fog and fibromyalgia... so maybe there would be more than one approach. But just as one of the patients in the documentary said... I'll try anything to get my life back!
I hope to find Drs that are this passionate some day.
Ditto ❤
I have fibromyalgia ,very severe and chronic fatigue for 40 long years! The pain,dépression,not to have a life is heartbreaking! It’s affect the family life and friends,,devastating! 😢😢😢😢😢😢😢😢
I have it all 27 years are you hypermobile to
I found out in 2022 I have fibromyalgia. I had chronic fatigue and never felt recharged. I would be falling asleep as I walked around or talked with others. I became depressed because I was sleeping my life away. I'm always worried it will come back. When I nap I have a hard time with pushing myself to get up. My Dr said to fight the fatigue.
@@tiffdoodles fybromyalgia I've found can be a symptom of me where is your pain? All over or spots? Check for hypomobility heds and sleep apnea it's also linked to autism ADHD for which ime diagnosed late 43 I do reccomend d ribbose 27 years cfs 6 years fybromyalgia my father had CFS recovered now just list my mum.hes starting CFS again 74
@@tomsale5142 my pain is all over. :/
I am 63. 25+ years....this has been my life/existence!!! Beyond horrifying.yes suicidal thoughts are frequent. 🙏 For cure and understanding. God bless and help us all 💜🙏✨
I have had CFS for decades now and I’ve always been looked at as suspect. It’s so difficult to explain
This has to be what's hitting me. I have no energy at all. Used to have quite a bit. I just can't do anything anymore without feeling extremely tired.
I've had ME/CFS most of my life, labelled lazy, a hypochondriac and a hysterical female of a certain age, until 2016 when a new GP said, " but you have Chronic Fatigue Syndrome, so these things are expected. " Until then, I had no knowledge of the condition. I just thought everyone else was right. NOW I've learned so much about why my body reacts as it does.
I’m so sorry you had to go through that. It’s a cruel disease. I’m clad they are calling it a disease in this documentary. The invalidation around this has been almost as bad as the disease itself. Wishing you health and peace
Bless that doctor!🌷
Typical medical misogyny in action. Glad you've finally been diagnosed with a proper doctor.
i found the same thing in my medical records, but nobody ever mentioned it!
“Hysterical female” yes medical sexism is such an issue with these conditions! Fibromyalgia affects mostly women. Estrogen has been linked to pain sensitivity. There is a physiological cause for all of this, doctors need to learn!
Its like watching a documentary about myself. Almost 4 years, and no diagnosis. I'm tired and hurting and I'm tired of hurting.
Show this video to a good doctor. I wish you a good life.
Me too, this is me in a nutshell. I feel so alone in this. Im fed up of complaining how i hurt all the time. I feel your pain..
I'm so sorry. Keep fighting for answers!
Love your name, Havok ! 😘
If you would like some help to heal, please read some of the other posts we’ve made. But, in a nutshell, eat well (organic), boil water, exercise as much as possible (without relapsing) and with sweating, and avoid all pharmaceutical medications!
In most cases, the diagnosis is ‘poisoning’ by drugs. Now, you can move on and start the healing process.
Im a 46 year-old woman and I have been dealing with CFS since I was 15. 😢 The majority of doctors, former friends and family did call me lazy. It took me many years to moderately control my lifestyle and deal with my symptoms. Most of the time I plan out my whole week as much as I can and then plan for at least one day of sleeping all day. I still dont "recover" and i do have terrible days where I miss work and family time. My kids do suffer. They tell me i sleep too much and I have tried many times to explain disease to them. It is true, you never feel really weird charged after sleeping. I have been on many sleeping meds, that have not helped. Even energy drinks barely give energy for an hour or two. I just take it one day at a time.
I don’t have this, but I have several other chronic conditions that impact my ability to do simple things like getting up without fainting, engaging in physical activity without gasping… all invisible but painfully real. I wish people had more compassion. I want to be so many things but I can barely make a sandwich without needing to sit down.
This fabulous video needs to be shared by many on social media. The situation for recognition and treatment in the USA is even worse than described here. I can't begin to tell you the frustrating, life alternating impact this illness has had on me for the past 16 years. It's there every single day, even on the good days.
I agree. I was treated with IVIG for four years ..... And it saved my life.
Still have symptoms, but am older and have Cancer. (X5) So I never know what is what.
I just fixed myself tea and crawled back in bed.
Been living with CFS since I was 14. Used to really get to me but I have learned to cope (thank you coffee and Provigil). Their are still days when it gets hard and I've had to restructure my life greatly. I am fortunate enough to have a career in which I can financially get by on a part time basis so I am very fortunate in many ways. In the end, it remains a struggle I think I have just gotten so used to this being my "normal."
@@token555 please try Fermented foods Kefir, kimchi, kombuscha, miso,Sauerkraut...) 2,3 Weeks afther have so much energy...
@@moniqueengleman873 IVIG helped me so much, but Insurance wasn't willing to cover it anymore.
@@-willow-980 God I know it.!
I don't understand. When I started IVIG the 30 grams cost 8000.
My insurance paid.
Within 4 years it went up to 20,000
Now up to 40,000 a dose.
It is completely crazy. I swear it helped me survive brain cancer.
Now growths on my spinal column is back but I cannot get the treatment that worked for me.
It was like liquid gold.....
So depressing to hear how little awareness and funding there is for this disease. We’ve known about it for decades and it affects so many people in such horrible ways. To be a young unwell person and just be called lazy, even by those closest to you. It’s really crushing. Sadly that is the world we live in.
It's been around since 1972
People used to be tortured in mental assylums for having it
@Jim Harrington do some research or at least watch the video please.
@Jim Harrington "I did and it was biased" - said jimmy
@Jim Harrington it’s not a disease, it’s a syndrome. A syndrome is a collection of symptoms. You get diagnosed with chronic fatigue or fibromyalgia when doctors do all the tests. Everything comes back negative and they throw their hands up in the air. It’s a diagnosis of exclusion.
I was diagnosed with fibromyalgia and chronic fatigue after years of testing positive with cytomegalovirus, so in my case there was physical evidence, however even after the antibodies went down and eight years in, I still have debilitating symptoms.
“People have themselves to blame” well I can say that doing things is a hundred times more difficult than before. I used to be able to move 20 bales of straw all by myself, wrangle large sheep and cattle. I was extremely active. Throughout the onset of symptoms, I still tried to remain active. But sometimes I would try very hard, and 10 minutes in I was literally asleep on the ground… how exactly is that normal? Is that just me being lazy? Regardless I still try to lead an active life, but it’s not going so well compared to the life I had before.
After years and years of fighting this horrible madness called CFS i finally got the diagnosis. However, i must say that after nearly 10yrs i still haven't found a way to get better. Nothing i tried helps. And yeah, i've been eating a super healthy diet for decades and try to do some exercise when i can. Had a billion blood tests, taking supplements to get all the values in check...Nothing even puts a dent in the fatigue/brainfog...Its very, very frustrating.
I find it hard to stay awake, I do a little taske and I'm tired and asleep, a conversation makes me tired.i get tired after a short trip to a shop .everything I do makes me tired and I just sleep.
There is an underlying cause responsible for the CFS that is rarely properly diagnosed or treated. Please read the About section of my profile and contact me via email if you would like proper guidance.
I am 4 minutes in, and feel more seen than I have since I got sick a few years ago. Thank you so much for making this and sharing it!
Same here. I suggest dr morse's videos. everything else and especially the medical community is just noise, and a pathetic waste of time.
I have the same condition and pretty much recover by adopting a gluten free diet❤️ I seen many specialist and none of them have an answer. Hope you can try if you have no other option.
I had post viral fatigue after covid which lasted about eight months. It made me realize what people are up against.
I recovered but I do feel nervous in case I get a virus again and the same terrible exhaustion returns.
My case was mild. I really feel for these people.
What is being called a mysterious "disease" is actually the fact that we are alkaline beings. We must stay at a constant 7.2 to 7.4 pH. Our super INTELLIGENT bodies regulate us at this constant pH. That is because we consist of 7 billion billion billion atoms, each one an electrical energy field because atoms spin/vibrate as positive and negative protons and electrons. We are electrical beings. Look up all the youtube videos and books that say so.
Many doctors know this. Watch youtube videos by Dr. Young. Read his book The pH Miracle.
Since we ARE electrical beings, then any dis-ease is electrical. 5G and microwaves hurt us. Our own bodies are the energy of 7.2 to 7.4 pH. Food is measured electrically as pH. We must eat foods that are the same pH that we are. That means eating lots of greens. Tomatoes, etc. Exercise burns up this energy so that a person could eat more acidic foods and not be hurt. Diabetes is eating too many acidic foods and not burning them off with exercise. So this acid just sits in our bodies as fat. Sometimes acidic foods show symptoms like mucus, colds, fevers, heart attacks, diabetes, etc. Dr. Young says ALL elements can be fixed by eating alkaline foods.
Thank you
After covid 🤣🤣🤣 such nonsense, you did not even think to use that term before. Only because the media programms you what to think, repeat and believe.
@@lotus___freedom they are talking about when they themselves got infected with covid. They aren't talking about a period in time also called "covid".
@@lotus___freedom Lol come on now; I am on your side in that the media and the creation of covid itself is a manipulation and they are lying about the real reasons it came about as well as the effectiveness of vaccines. However, even though its a man-made bioweapon intentionally unleashed upon us it is still a real virus; I've had it myself multiple times since I seem to have a weakness to it. Just because the creation of the virus, the overreaching government response to it and the media manipulation are all true doesn't mean the virus doesn't exist and has real consequences if you get it.
I wish they linked places to donate to researchers because I would in a heartbeat!! I cannot imagine what those afflicted by this disease go through on the daily. I hope that we find easy ways to diagnose and treat this soon. I have a chronic inflammatory illness and I've felt the chronic fatigue when in a flare, so I cannot imagine the level of exhaustion these folks feel. My heart goes out to them ❤️ we must keep fighting for a cure
Its the worst judgment. I've worked hard all my life from a teenage. In the 80s we had job programs in-between school. All the way til my 30 then things changed. My energy level changed. I was tired all the time. At 50 its even worse. I dont socialize I don't want a relationship because i don't have the energy for it
Daily meditation and prayer helps ☯️ Also pay attention to your surroundings and energy at all times
Thank you for this video! I am a 62-year-old Canadian living with ME/CFS, Fibromyalgia, Giant Ganglion cysts, and drug sensitivities for 40 years, and have just been rejected for the 3rd time from receiving ODSP support (disability funding). All these testimonies are so validating to my condition... I pray for more research, if not in time to relieve me from these debilitating symptoms, at least for those younger than myself suffering...
There is a herbal Doctor who can cure you from This virus permanently with his herbal remedies Doctor.Ani John on TH-cam have the permanent cure to eradicate Shingles virus permanently
Joanne I am in Ontario and I have been able to get my ODSP. But you are right it is a huge fight and they made me reapply every two years but last year I was able to get it permanently. It is hard to fight when you have no energy and I think they rely on that sometimes.
@Tamera L Yes... I think now I am too close to 65, and by the time I go through the whole process of applying and gathering more medical support, I'll be getting Canada Pension... It's crazy... I have to live on 476/mth right now (ON Works) until then... Glad you were able to get it - mostly, I hope your health improves xo Take care xo
It’s a leftist fake disease also known as “laziness”.
Fluroquinolone antibiotics
I have CFS/fibromyalgia. This is extremely accurate. Today is one of those days. I can barely move. My bones hurts, I can never fully recharge my batteries.
I have rls, and I totally get this. I don't like that it's called "restless legs syndrome" because it minimizes that this condition disallows me from sleeping properly, puts me in immense pain all over my body, gives me muscle weakness (I drop things spontaneously as an example), headaches, and gives me moments that prevent me from even comprehending sentences or writing. I have a severe case (it went untreated for years because I got it as a teenager), and knowing that I cannot cure my condition and that it will only get worse (and that my medication will eventually become ineffective or make it much worse) is very scary. I may end up on opioids just to function normally if nobody looks into this.
I've had it since 1995 when I was 17 years old, I'm 45 now. It's very debilitating and frustrating. I can't tell you how many doctors told me "just stay awake in the daytime," or "just exercise" as if I can control ME/CFS. I had to be homeschooled my senior year of high school. It's isolating and people judge me as lazy or crazy. I've had periods of over a year where I was bedridden completely. I also have 19 other conditions including multiple autoimmune diseases and sleeping disorders. I never reach REM sleep which is frustrating. I wish there was a treatment. I missed out on so many things in high school and throughout my life since. The only doctor who has a full understanding of this condition that I've seen is my current trauma therapist who technically isn't a medical doctor. She believes I have this because of extreme abuse trauma from childhood, that my body just couldn't continue to live in constant survival mode. It's an interesting theory but honestly I'd rather have a treatment that works instead of a theory on how or why I have this. I just want a chance to live a full life rather than simply existing. I've lost so many friends because they don't understand why I cancel plans or don't feel like doing anything outside my home. The few family members (my dad who passed away in 2016 & my son) who didn't turn their backs on me when I started talking about my trauma are the only family who understood/understand and support me, everyone else labeled me as "crazy." I am grateful for my son and I have one good friend but I feel so alone & isolated. My son is moving out soon and I am so terrified I'll go weeks without any social interaction or support because my friend lives an hour away and my son will be busy with work & school. It's very lonely living with this and all my other health conditions. I also have had chronic all over body pain since I was a toddler, I literally haven't had even a second of life pain free, not even a memory of being without pain, it's all I've ever known, that too is isolating.
If you give me an opportunity to earn your trust, I am positive that I can guide you to the true underlying infection responsible for all of your health matters. It is treatable and curable with proper compliance.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth. .
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
• Neurologic and psychiatric symptoms and diseases
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
• Mast Cell Activation Syndrome: An Alert to Psychiatrists
@@abstuli1490 There is 1 very common bacterial infection responsible for "everything" you referenced. It will continue to cause damage and additional complications until it is "fully" eradicated.
@@etdmike What bacteria are you talking about?
Do you mean Borrelia burgdorferi, the bacterium that causes Lyme disease?
Borrelia burgdorferi triggers mast cells to release lots of mediators so that you get the same symptoms as MCAS. We can call this secondary MCAS for those who recover from Lyme disease treatment. Many will never recover from Lyme disease treatment as they have received what we can call Primary MCAS.
Scientific articles NCBI
• Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release
• Lyme patients can develop Mast Cell Activation Syndrome
• LYME SCI: The agony of mast cell activation syndrome (MCAS)
Thank you for making this. As someone who struggles with this syndrome so much more education for doctors and the public. Also there is not enough research and funding.
Thank you for watching and taking the time to comment, Erinn!
The medical system makes more money with people suffering than with healthy people. Treatments are hidden and even censored on Big Tech platforms.
Chronic fatigue= laziness. Get up off you butt and start doing something productive instead of being lazy and trying to be a victim. Problem solved
Check your metabolism.
Check your vitamin deficiency.
Like many auto immune disorders it is important to decrease inflammation in the body. I dont know if anybody has tried this, but the best to do that is by eating low carb or even better carnivore with added supplements controlled by blood work. Vitamin d3 in high doses is important, because sufferers stay mostly in bed and dont get enough sun. They have to eliminate inflammatory foods like seed oils high in omega 6, gluten and most dairy. It takes time, but there should be improvements after a year. Dont expect the doctors to find a magic pill that cures you and then you are 5 years on without a solution. You can start yourself and it doesnt cost much. Many people with autoimmune disease get better.
I told an MD that I felt like 'a frail old lady' a few years. back. After a serious medical issue, my symptoms got even worse! Today, I'm having a severe episode, and I'm. mainly housebound, and require a caregiver! It's very uncanny that I found this documentary because these patients are presenting with SO many of my symptoms! It's tragic that this has happened to millions of people just like me.
Drink a sea moss smoothie, the effects are almost instant...the developed world has everything a kings plate 🍽️ could dream of but if you get a microbiologist involved they will determine nutritional deficiency and the vitamin pills go right out, ask honey scoopers, they find a lot of vitamin supplements from porta potties. Sea moss has 92 of the 105 minerals the body needs... combined with spirulina you get even amino acids. Fatigue is multiple things but if you can replenish trace minerals, you can live longer... alkalinity is the source of health
I tell people that I feel like 78 years old.
It feels like a serious virus, just after the fever where ur aching all over, and no energy to do anything but breathe
@@sMASHsound drink sea moss and spirulina...it helps flush out mucus and heals the body...the Ancient Aztecs used it for everything
Fluroquinolones
Have you been tested for polymyalgia rheumatica it causes severe fatigue body aches, frailty, a friend had this and it took months to diagnose, he went from a very active person to someone who seemed to age 30 years
I suffer from fibromyalgia. I am one of the supposed only 1 in 10 fibro patients who are men. Just getting a diagnosis was difficult. I don’t know how I go to work every day… I just push through the pain for now but I know I won’t be able to do it forever. I’ve had to moderate my expectations and I’m still coming to terms with that. Hugs to all of you suffering from ME or Fibromyalfia. I know what it feels like to “look healthy” but feel so ill and in such severe pain at the same time!
Thank you. Wishing you strength, to keep going.
Lazy 😂
🧘♂️🙏
I thought I had this, but it turns out I'm just a "hardwired" night-owl who has immense difficulty operating during the daytime. I've tried everything to fix it. Nothing works. I've grown used to it, and so has everybody around me.
First of all, let me say that Chronic Fatigue Syndrome is not a rare disorder. It’s just very frustratingly misunderstood and undermined. I happen to have Myalgic Encephalomyelitis, which is pretty much the scientific name for this debilitating disorder. And it is a terrible disorder to have. Doctors tell you that it’s just fatigue, and that exercise will help. But it doesn’t at all. It will pretty much always make you worse.
I now use a wheelchair full time, and require full time care. Even my caregivers don’t understand my needs and the fact that I need so much help.
I’m glad this video has been made
Have you checked vitamin levels. Some have been helped by vit d . Need dr to check blood levels though.
@@janeteddddd u don't need a test almost everyone lacks vitamin d make sure to take it with calcium to increase absorbtion of both
@@janeteddddd - if someone took vitamin D and it helped they didn't have ME, they simply had low vitamin D levels.
ME or CFS is a diagnosis of elimination as there's no test for either so blood tests are always taken as the first part of the diagnostic process.
I was diagnosed with both chronic fatigue immunodeficiency syndrome and fibromyalgia in 2001, when I was 31. I have had to just deal with the unrelenting, pervasive, constant pain of the fibromyalgia since then. The unrelenting exhaustion of the CFIDS has been, by far, harder to deal with.
The most frustrating part has been trying to work. None of my employers have been sympathetic or supportive. None of them have allowed me to work mostly at home, even though it's doable in my profession. It's definitely hurt my ability to further my career.
Thank you for making this film and bringing attention to this horrible, and horribly misunderstood, condition.
Many people with ME/CFS have Mast cell activation syndrome (MCAS) as the cause of their ME/CFS symptoms.
MCAS is a very common newly discovered mast cell disease that can have all the symptoms and triggers known from ME/CFS including PEM.
Mast cells are found in all tissues of the body, including the brain.
The cause of MCAS is mutations in the KIT gene (more than 50 mutations found so far) which makes Mast Cells dysfunctional and overactive.
Mast cells are a white blood cell that is an important part of the immune system that can release more than 1000 different types of chemical mediators.
The many symptoms MCAS can cause are incredible an depend on which of the over 1,000 mediators are released, how much of each mediator, which combination of mediators and where they are released in the body.
Many of these mediators are inflammatory, others control bodily functions and growth. .
Those with MCAS should avoid all their triggers as they can make them worse.
Those with MCAS have had the disease all their lives before the disease is triggered/activated by viruses, bacteria, mould, physical or mental stress, poisons/toxins and heavy metals.
There are many different medications that can make most people with MCAS better.
Some diseases that are often associated with MCAS.
• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• Post-Lyme syndrome
• Long Covid
• Post-traumatic stress disorder (PTSD)
• Gulf War Illness (GWI)
• Irritable bowel syndrome (IBS)
• Fibromyalgia syndrome (FMS)
• Postural orthostatic tachycardia syndrome (POTS)
• Hypermobile Ehlers-Danlos Syndrome (hEDS)
• Multiple chemical sensitivity syndrome (MCSS)
• Interstitial cystitis/bladder pain syndrome (IC/BPS)
• Attention-Deficit / Hyperactivity Disorder (ADHD)
• Autism spectrum disorder (ASD)
Scientific articles NCBI
• Mast cell activation symptoms are prevalent in Long-COVID
• Immunological dysfunction and mast cell activation syndrome in long COVID
• Mast Cells and Irritable Bowel Syndrome (IBS)
• The Emerging Role of Mast Cells in Irritable Bowel Syndrome
• Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrom
• Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
• The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome
• Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
• Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD)
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The role of mast cells in migraine pathophysiology - PubMed
• Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Involvement of mast cells in modern life: Physiology and pathophysiology by Prof. Dr. L. Afrin
• Does Mast Cell Activation Explain IBS (and Fibromyalgia and ME/CFS)?
• LIVING WITH MAST CELL DISEASE - TRIGGERS & SYMPTOMS
I have heds autism ADHD fybromyalgia CFS heds is big link who do I see for this mcas
The battery analogy is a good way to describe it.
I have a mild version of this from COVID. I had it about 15 days ago. Ever since I have the energy to maybe do one task a day. Sometimes that’s just cooking food. It’s been a nightmare because I’m usually a highly productive person (I run 3 orgs, have 3 jobs, take 5 uni classes, and an on SGA). I’ve been out of work completely for two and a half weeks and reduced my hours. I don’t know if I can actually continue to do this pace at all… I can’t even handle more than one task a day. I can’t imagine what this would be like both worse and for a lifetime
What I love about these videos, is that I can listen without having to watch, while I work, thanks to the translation. Great Job DW! 👏🏾
I was just wishing they had it in the original German. It’s hard for me to follow when I have to keep switching languages in my head.
My mom has battled this for years now. Such a bizarre disease. I'm so glad more awareness is coming up.
vaccine dmg ,wake up
@@Turican76 No, it's not related to that, because most of that "vaccine dmg" is just conspiracy theories. For some, it's related to symptoms after they have had covid, which are now being called, "long covid".
I can help her.
@@mikecarey1990how
It’s overwhelmingly infuriating to see the suffering and isolation they’re abandoned to by mainstream medical circles and even people in their own lives. It makes me think of Physics Girl, one of the more visible cases of this disease I’ve heard of recently - hoping so much that patients like her and like these in this documentary can be given the support and funding that they so desperately need in order to get their lives back 😢❤
Had mononucleosis 4 years ago and it utterly devestated me. Turned me from an active, energetic person into a husk who could barely get out of bed no matter how much I tried, brain fog, anxiety attacks which I never had before in my life... Took me over 3 years with serious supplementation and dedicated diet to get back to somewhat of a resemblance of my old life, but I am still not 100% and will likely never be.
If you give me an opportunity to earn your trust, I am positive that I can guide you to the true underlying infection responsible for all of your symptoms. It is treatable and curable with proper compliance, which will stop symptoms permanently instead of a temporary band-aid.
@@etdmike explain yourself then
@@Anton43218 I discuss via email to respect privacy on both ends.
@@etdmiketell me bro I have been suffering from UTS for last 6 months and I feel fatigue in my legs...
What has helped you?
I don’t know how to express my gratitude to dw for making this video. I felt like it gave me a voice to speak.
Thanks for bringing some hope back. Millions are suffering with depression and lack of hope in life because of ME CFS
There is a herbal Doctor who can cure you from This virus permanently with his herbal remedies Doctor.Ani John on TH-cam have the permanent cure to eradicate Shingles virus permanently.
It’s a leftist fake disease also known as “laziness”.
I'm going through almost identical situations,
I've been living this for 2 years,
4 months ago I started eating red meat, around almost 100% meat only,
I had some improvements.
I cut out all processed foods, when I cut I feel better,
Because it was already possible to do something, like taking the garbage in the trash,
Research the ketogenic diet, and carnivore,
I'm just sharing my situation, hope it helps
It looks and sounds like one of the worst afflictions possible, its like a chronic depression for the body....
Thank you for understanding. It helps so much that you recognize it.
Well said
Absolutely. The mental illness that goes along with it is also just as bad. I’ve been isolated from people since I was diagnosed two years ago when I was 14. I’m going into college next month, which I’m hoping will help with that. Thank you for understanding, it’s not often we see it :)
@@robertsmithslefttoe3644 I know suffering when I see it, no one chooses it, blame is for those with small minds. There are plenty of those! Good luck with study.
This is sooo sad. My daughter also contracted Mono when she was in high school and used to get so tired. For the most part she does OK, but I still worry because her glands flair up and cause her pain. Sometimes acutely….and when she gets too stressed her Mono symptoms reappear. She is now 26, lives on her own, is in college and works as a manager in a busy coffee/deli shop. She’s a very independent, driven young lady. I just worry she is pushing herself too much and may, through her Mono, trigger a more serious autoimmune disease.😔
Thank you for this documentary! This is highly informative.
Thanks for watching and for the feedback!
Thank you! I’ve been told by so many doctors that it’s all in my head because none of the regular tests show anything. But after I got mono as a healthy teenager, I became a completely different person with multiple debilitating symptoms. Seeing this documentary makes my heart shout YES, I KNEW IT! Thank you so much.
Same here, I believe that is when mine started.. after i was diagnosed with mono years ago.. went downhill ever since then
@@Chewedgum108 find out the antibiotic u took then Research ::: F.Q.A.D ( FLORAQUINILONE toxicity syndrome ) this type of drug has been killing 😳 since the 60 ,s UNDER THE NAME HYDROCLORAQUINE THEY JUST CHANGE THE NAMES AND REINTRODUCE IT AT A LATER DATE... they have done this for many years now ...... each time it is pushed to the people it seems to bring on MORE AND MORE MYSTERY ILLNESSES OVER THE COARSE OF TIME? ⏲ THAT go unsolved ? and we are to just ROLLOVERER and BELIEVE everything they say ,, 🤥 NOT ACCEPTABLE. !!!!
It was something mono-like for me too. There was at the time a breakout of mono in my high school. I got sick as well, same symptoms, but my test for mono came out negative. I never really went back to normal, though it took years for it to get worse. College drop-out. One of the best schools in the nation for my major and won a grant from the school too. I could not even walk to class, or walk back if I ever got there, so I had to leave. I’ve never been able to integrate back into ‘normal’ life since. That was more than 20 years ago. I have some better years and some very bad years. It never goes away and effects everything. I hate it.
Hi Claire, Just wondering, what you meant by ‘yes, I knew it’ ? Did you recover from the fatigue, etc. How long for ?
My mom has this illness.... it's really terrible. She had to change all of her life, all of us had to move out to apartments near by because living together was too much sensory input on her. She has been having constant feverlike symptoms for 4 years now. At least she has been able to get our of bed after 2 years of constant darkness and lying down in bed with closed doors, closed windows.
Now she is able to eat with us sometimes outside of her bed. She can sit in the living room.
You can't imagine how grave this illness is.
and when you live with a familymember with it, you completly forget what a normal life is.
When I see old pictures from a few years back where my mom stands in the living room watching a TV, it feels like watching another person. My mom would never be able to do that anymore -
she wouldn't be able to stand up, nor would she be able to watch tv. When she watches TV she gets dizy and tired right away, burning headaches and so on.
At least things have been slowly been going the right way. I hope that in 10 years maybe she will be somewhat able to be independent. I know how much she hates to rely on other people.
I started getting unwell in my thirties after two operations. Never been well since, I’m nearing middle 60’s now! It’s the fever’s & sweats & constantly hot 🥵 & cold 🥶 & it’s lonely.
@@florence1395 god I'm so sorry for you :( I'm sure you've tried B12 shots, but in case you haven't they have helped to reduce severe symptoms for my mom.
She also turned out to be very sensitive to plastic so switching out bedsheets and so on to pure cotton has also seemed to have somewhat of a result. Though we can't tell if it's a "cause-result" situation or just a coincidence......
I hope you have found some things that help you through the day!
Don't need to take 10 years. I have almost cured my ME, low thyroid function, seasonal allergies, bone and muscle pain, skin conditions, blood sugar issues, hair loss, tooth pain, mental issues, etc, etc with diet, fasting and vitamin supplements. Eat clean, mostly fresh plants. Fast regularly. Take high doses vitamin D3 (30000 IU pr day) with K2, magnesium and zink. Take sunbath without sunscreen. You should also check out your B12 level. I am 50 years old women and feel better than i have in almost 20 years. Do your own research, don't trust doctors and take as few medicine as you can, it's poison. Take a daily green smoothie with flaxseed and the vitamins and you will soon feel much better. If you have bone and muscle pain, you will probably feel worse before better, it's healing pain.
@@i.b.168 🗣 Yes, YEs, YES !!! Another sensible, person here people. This advice includes many of the answers to FIXING (not masking) your ME / CFS health problems !!! Follow this advice, it provides the only way out. ONLY people like I. B. can help you. 🥳 🤗 🤗
Raw lemon, and boiled water, as often as you feel comfortable. And you must move (exercise, and sweat). It helps to get the toxins out of your bodies. (Just do not over do the exercise).
@@i.b.168 What country are you from I. B. ?
Sending virtual hugs and prayers around the world to fellow sufferers of this dreadful disease.
I got chronic fatigue plus orthostatic intolerance from abusing caffeine of all things. I went on 4 hours of sleep or less for 2 years because caffeine made me feel alert enough to function, and I thought I could ride that wave forever. My body basically flipped me off and conked out and as a result I was basically bedridden for 2 years. It's important to treat your body right and give your body proper rest and not abuse caffeine. Caffeine addiction is insidious. I quit all caffeine for 2 years and sleep off all the sleep debt I collected throughout those years and started feeling better actually not too long after I quit, about 4-6 months in I started feeling a difference. I feel for people who have chronic fatigue. Feeling so weak that you can't even sit up on a chair for more than a few minutes, it's miserable. Made me realize the smallest things I took for granted. I hope all of them find an answer and can eventually fix their CFS.
14 years of medical neglect with ME/CFS... Thank you for this important documentary!
A long and painful 30yrs for me. I almost feel hopeful now that a spotlight is on finding answers. It's about time.
I have had CFS for as long as i can remember (possibly caused by a viral infection I had when I was one year old), but only got diagnosed when I was 13 years old. My CFS has gotten progressively worse over the years. I am house bound and almost completely bed ridden. Everything I do to survive is utterly exhausting.
Thank you for putting out this documentary DW, It has given me hope that people will have more understanding and there will be more research.
hello ...last 3/4 years for me utter exhaustion ..had more blood tests and seen more specialists than ive had hot dinners ... keep fighting on eva much love from australia
Antibiotics
@Eva Harris, I totally understand! Two words: Me too! But, I try to get up. I do have a caregiver now. That took quite awhile to find out how, then had a hella time for two years because it took me several agencies to meet her. I told her a lot about me, and she knows I try to do stuff just to keep living. There's a saying: 'A body at rest, stays at rest.' So, I go thru the pain of utter malaise & fatigue, but get angry at it, and do as much housework as I can, I keep my toilet, bathtub, and sinks spotless, and run my own vacuum. She gave me a pair of two pound weights, and she'll bring me leftovers from home on my worst days. I'm very grateful for this woman and at this point, trust and highly respect her. I showed her this a few days ago, so she'll see what others are going thru like I did when I found this for I didn't know about cfs either. After several ER visits and complaining to several MDs & RNs, I gave up. But, I didn't give up on myself! Then, on this video, it said to try to keep moving your limbs too. I feel a bit better after pushing that vacuum or running my own bath or cooking a simple meal with my caregiver assisting. Even just having to let her in everyday seems to help! She's not negative or lazy. She's not stupid and seem to have things so she won't steal dumb stuff like some have done to me. I wish her many years of vitality and good health, and all the best life has to offer. This I wish for all who didn't cast me aside as I lay in filth and a house that turned into a time capsule! This thing is SERIOUS BUSINESS. I'm not lazy! I held great jobs before my disabilities! I've worked among top surgeons and their PAs % RNs! I've made and sold R/X glasses and dispensed contacts! I've delivered packages and drove a semi for 30 years plus taught my SON to drive the thing, yet I don't think I'm all that great! I'm average but if I could do it all over again, yes I'd bring children in this world but the guy would have to have intellect, raw ambition and more! I would be hard as hell to get, and never wear my heart on my damn sleeve! Maybe because of my serious work ethic and determination, that could have had something to do with it and the fact that even today I have to fight like hell, and advocate aggressively for myself!
I’m so sorry. I got head lice followed by cocsackie virus when I lived in a dv shelter in high school. I’ve been ill ever since. I was already born disabled from a meth addict mother at birth so this crippled me. What’s worse is people think I’m very bright and will push me harder than I can handle til I collapse. Now I’m permanently disabled and use a wheelchair on good days. I still have a love of beauty so I create dystopian outfits and on less symptomatic days I play cozy video games. But my husband does most of the adulting around me like I’m an island. I’ve lost my dignity because people just think I’m lazy. Don’t you just think that word hurts worse than anything? Lazy. We’re not lazy. We’d climb mountains in our dreams and kayak the Colorado if we could. I’m learning that most people are ignorant and selfish and I can’t educate them on what we go through. We just have to hope that there’s a little piece of safety, beauty and resources left for we ghosts in our homes. *hugs
I suggest Biblical fasting, it can heal you, Hope your journey leads you to a miracle from God,it has happened multiple times with other people.i Pray you will be healed in Jesus name,
my friend stopped coming to school due to CFS and some of our teachers weren't too understanding towards her either CFS is awful :( we haven't seen her for about two years now i hope your okay Ana...
"I have had anxiety, PTSD, and major depression since I was 12 years old, but I have never been diagnosed. I have been dealing with issues such as anger, mood swings, decreased interest in pleasurable activities, feelings of guilt or worthlessness, lack of energy, poor concentration, appetite changes, psychomotor retardation or agitation, sleep disturbances, and even suicidal thoughts. I have ended up in the hospital a couple of times, and I have continued to suffer for more than 30 years. My first marriage ended because of these struggles.
About 10 years ago, I was finally diagnosed, and antidepressants helped me. I have regained control of my life and have started laughing again. It has saved my life and my family's as well."
Ohhh! Glad to know it bro...
As a person who is in love with someone who has CFS, it is also a struggle for us loved ones. We feel helpless when theyre having a really hard day. I hope future research will bring more knowledge, understanding, and potentially cure for this illness. 🙏 I just want my loved one to have a normal day without feeling every movement is a pain.
Yes. It’s lonely for you, too. Because you want so much to make it all better. Bless you and your loved one for taking the high ground and hoping for treatment. Hang in there. You’re not alone.
It is most likely a childhood vaxx injury and the treatment you’ll want to find is for detoxing heavy metals. CFS is listed on many vaccine package inserts as a possible side effect, I posit that it’s quite a common one, I even had a formal diagnosis for it from my family doc in the 1990’s.
Try marijuana
I'm so glad that you believe your loved one. My husband has seemed skeptical and not very understanding of my symptoms and down days.
@@novelist99 it has been a journey for us. I went through doubt as well but i love him more than the doubts i had.
My younger sister has had ME/CFS for over three years now. It took nearly a year for her to get a diagnosis. In 2020 she had a bad fall and concussion which made all of her progress disappear and even make some symptoms worse. She developed severe light and sound sensitivities which are still present today. Whereas she used to be able to watch youtube, read a book, or listen to music, now she can hardly go outside without sunglasses or noise-cancelling headphones. She has been going through treatments that have helped make progress, albeit extremely slowly-and though we don't think she'll be back to her old self, we are hopeful that she can improve. Throughout this experience I've been away at college and unable to visit until recently due to covid restrictions. I understood somewhat what she was going through-but this documentary definitely helped me get a better insight into how she feels internally. Thanks so much for making this and raising awareness, hopefully with the new rise of long-covid, ME/CFS will become far more recognized and researched.
@Wa and Andi McDowell please see above 👆🏻. Thanks.
You’re such a good and loving sister. She’s lucky ti have you in her corner
Many people unfortunately are misdiagnosed or diagnosed with CFS where the doctors completely miss or are not aware of the actual cause which is cranio cervical instability, the best way to diagnose it is via digital motion xray or a DMX Craniocervical Instability is a medical condition characterized by injury and instability of the ligaments that hold your head onto the neck. Common symptoms of Cranial Cervical Instability include a painful, heavy head, headache, rapid heart rate, brain fog, neck pain, visual problems, dizziness, and chronic fatigue.
Chronic Fatigue - A Symptom of CCI, AAI, & Upper Cervical ... centenoschultz.com/symptom/chronic-fatigue/#:~:text=Craniocervical%20Instability%20is%20a%20medical,%2C%20dizziness%2C%20and%20chronic%20fatigue.
Hey Ben, look into Lyme Disease, and coinfections like babesia and bartonella. It is a multi-systemic disease that attacks different parts of the body and mimics symptoms of CFS, carditis, rheumatoid arthritis, multiple chemical sensitivities, fibromyalgia, optic neuritis etc. There is a documentary called “Under Our Skin”, also look into ILADS Lyme-literate doctors if you’re based in the U.S. The more you research the more you’ll come across extensive treatment plans and lifestyle changes: like detoxing mold and heavy metals, herbal medicine (antibiotics are highly discouraged and only necessary in severe acute conditions), killing parasites, reducing chemical and EMF exposure, together with improving diet, improving microbiome with probiotics, bee venom therapy. Ask your sister to go with her own intuition and trust in her judgement as she explore these options and create a unique treatment plan for herself. Glad she has a supportive brother speaking up for her here. All the best!! And I hope she recovers and thrives again!
She was lucky, it usually takes 3-5yrs to get a diagnose…
I am 78 years old. I had shingles at age 20 and a mysterious illness at 22 that caused chronic fatigue and swelling of lymph nodes all over my body. A monospot test was negative and my blood had a slightly elevated titer for toxoplasmosis. However, I never got a firm diagnosis for anything. I was cautioned against a lymph node biopsy because if I was given a diagnosis of a neoplasm I could have problems obtaining medical insurance even if it turned out not to become lymphoma. I had plenty of energy before, but I lost 6 weeks from work because I was too tired to get up. Eventually I lost the worst of my symptoms and got back to work but I never got back my full energy. I was able to work full time until I was 66, but only because I was able to find work in my professiion on later shifts. This would give me time to rise slowly in the morning and fortify myself with coffee and high protein breakfast before going to work. I am grateful that I could work, even though I was always tired and in pain. The pain was always there in my joints. I learned that I had mild hypermobility and a "trick" knee as well as migraine at age 13, and also was diagnosed with hyperchromatisis at age 56. I believe that all these problems are the results of genetic predispositions and may be related. I am grateful that my doctors early on were not dismissive but simply did not know how to diagnose each condition. These days there are many lab methods to diagnose viruses, but doctors don't use them because of managed care fiscal issues and old ideas that viruses are not treatable. Covid has been a game changer. Now some doctors are willing to test for such viruses as have available treatment. I think viruses of various types are capable of triggering chronic fatigue in vulnerable people and hope a treatment is found. So sorry for those who have been too badly impacted. Kudos to those able to cope. Shame on the blamers.
Wow this was so interesting! The first information that has actually made sense! This is awesome❤
Thanks for watching and sharing your thoughts!