I've struggled with CFS for a decade. I had to push myself through college with it, working on top of it. I graduated top of the class 5 years ago, and was accepted for a masters degree. I had to cancel it 2 weeks before it started due to my CFS getting progressively worse. Since then, I've spent 95% of my life in my bedroom. The relentless exhaustion, brain fog, depersonalisation, food intolerances, depression, anxiety and lack of interest in life is too much for anyone to endure. My brain can't process information properly anymore. I had an IQ of 140 in college, I'm afraid to even see what it is today. Even conversing with people is difficult, as I have trouble trying to absorb the information they are presenting in their conversation. It's horrible. For anyone else with CFS watching this - all I have for you is a hug and my deepest empathy and love.
Makes me wonder if CFS often happens to people who over perform and who over succeed in life, who push themselves too far to get ahead not knowing the limits of their own body.
No - that doesn't appear to be a trigger. It can happen anyone, at any point of their life - no matter how active or inactive they are. And that's the most scary thing about this and why more people should seek funding for research - It can happen anybody. Over a decade ago, I was healthy and happy and then BAM. It hit me. It can hit you. It can hit anyone.
Sean Ó Briain Oh yeah I already have it, I was speaking from experience. Still trying to figure it out myself, I never went to college though I have had a lot of stresses. So it's been on and off for me.
It's difficult to say, but based in all research - I suspect it's any kind of foreign body that triggers a defense mechanism in the body, which in turn causes a hypometabolic response to protect the body's cells. I don't think stress is a trigger, but rather can aggravate symptoms.
Loneliest life.too tired to even tell people I’m too tired. Can’t even visit the doctor because I cannot push myself in the wheelchair to get on the bus
Every day is misery. Iam 32 and I think Iam young I should be able to get out of bed and do something going even to the grocery store I have to stop and rest and then afterwards I have to come home and sleep for the rest of day. This is called living. Praying 🙏🏻🙏🏻🙏🏻
I took a class to become a holistic health practitioner. I would contact Pure Vitality in Georgia. They do remote care and testing and have some amazing stories of helping people
I’m now 70 years old. Have hope. Keep looking for treatments and doctors who care. Medicine will advance. Treatments will be tested. Eventually, causes will be identified and treatments will begin to work. Try to hold on.
Omg that resonates with me... "I can cook my dinner or do the dishes.. but I can't do both". I vacuum my house in sections because I can't make it all the way around.. And not 2 days in a row...it Wipes me out for the whole day. And this is now I'm so much better than I was 10yrs ago. Its crippling and nobody takes me seriously 😞
I know exactly what you are saying. I have finally found out that all of my illnesses are from Ehlers Danlos Syndrome, it was so incredibly difficult to get my diagnosis because it's horribly described by Google and undereducated to the medical community.
That's me 30 years of this started at 35 never left. Ups and downs thru time. I always tell my husband I can either wash my long hair today or take a bath but can't do both.
I understand. I was diagnosed with cos them fib ro and lupus, you have to choose between two things. God bless and I am sorry you are going through this.
It's important to recognize that "this illness" is poorly understood, and as the different presentations in the video shows, it probably represents a number of different distinct illnesses. It's heartening to hear people share stories of how they "got better," but equally important to remember that what worked for you (whether that was avoiding gluten, using hydrogen pyroxide, meditating, or take anti-virals) isn't a cure-all for everyone. I know people mean well when they say, "you can beat this thing!" but the truth is that, just as with cancer, we really don't know why some people get better, and some people don't - and anyone with a chronic illness would probably agree that they'd rather experience compassion than "motivation," since for many, "beating this thing" may not be a realistic goal,
I think this is the most accurate description of the current situation. A family member has this and I would put her in the group that have a physical illness rather than a psychological one. I think doctors use this diagnosis as the rubbish bin of medicine, when they can't figure out the problem they throw it into the CFS category and leave the patient on their own. No doubt we're dealing with a ton of different metabolic disorders, immune disorders, neurological disorders and some psychological disorders. I work in regenerative medicine but I keep an eye on the CFS research in the hopes that a promising study may help out my cousin.
@@ilikeceral3 no actually it's not. My CFS got worse, I'm 20 years in, after recent vaccinations and no it's not in my head. It's rude to rule out anything, that's what's rude. You have no idea how awful vaccines are. When you get very sick, they are contraindicated, I should not have been allowed to get them. Do some research. After that happened, I'm shunning doctors, following the research and working with my microbiome and dna for healing. Sorry, I refuse to believe, I am stuck like this, w/o hope I will die and so I won't stop trying to heal until I'm dead.
This makes me cry. This makes me know that I'm not alone. This makes me see exactly what I've gone through since 2007, constantly looking for help and getting nearly none. I am so grateful for your beautiful yet heartbreaking video. You've made it clear why it's such a struggle for me, the caregiver, to care, to work, to manage the home, and to have a life. There is a piece of this that is always ignored: The isolation is almost like solitary confinement. The whole thing is a nightmare. I am grateful for your video.
+Nancy Lamb were you bitten via a tick? Borrelia/Lyme Disease? How much butter, ghee, lard, dripping do you eat or do you do low fat? I am a researcher and a suvivor of CFS, what type of fats do you consume and the amount?
cathrine here i do not eat fats only low fat flora marg please tell me more of your M.E. illness you say your a suvivor how have you over come this devasting disability ??
ciggy more to say I have completely recovered is wrong and what set it all off was several tick bites. I lost my balance, all my energy and memory went, gut was very bad and I can't tell you other things as it is just crazy private stuff. Basically real cod liver oil (no extra omega 3 supps in high dose as these can inhibit parts of immune system) with very high vitamin A and high dose vitamin D, high butter, ghee, lard, dripping with veg, moderate/small meat helped me the most. The fat also helps the minerals and fat soluble vits go in and assists protein utilisation. Fats help to destroy candida, line the plural fluid in lungs preventing bronchitis and have antimicrobial properties. Adding some carbs in small amounts might help the diet to be more manageable. For vegetarians, adding lots of ghee, butter, eggs would be therapeutic and coconut oil, little flax oil. I tried lots of herbs, artemesinin which was helpful but they have side effects or just stopped working. I use to get candida and the IgG and IgM were positive in tests but these all came back normal on my diet. I am describing a keto diet, but this can be adapted to the point you don't have to go into ketosis, just add much more fat to your diet in exchange for bread and white flour, sugar and GET ALL THE FRUIT OUT accept peppers/tomato (unless you have arthritis, with issues to the deadly nightshade family). I am not saying that carbs is unhealthy for all mankind. I am talking about treating ME/CFS which could be caused by borrelia, mycoplasma, virus, which means we need to get our immune system up. Even HIV virus likes the sugary proteins to bind to in order to get into the cell. We do need to consider gut bacteria and these need veggies and perhaps if you can handle them beans/chick peas to ferment and multiply. Probiotics and prebiotics/inulin is good in small amounts. I think homeopathy may help support the HUGE emotional burden of CFS/ME to a degree but the ME itself, although Lidum 1M is used for Lyme disease in animals and humans in early stages. Everything I say here is based on my philosophy and experience, study etc. I maybe completely wrong, and other people might do better on a raw food diet, limiting fats but it never works for me. I am not a doctor, so everything I have said is just for education purposes and I am not trying to treat or diagnose anyone. Sorry my grammar and smelling sucks.
Catherine Here it's not me - I"m the care partner. Food is unrelated to the problem and he's done a lot of different food programs to no avail. There is no real evidence that anything has worked with the exception of getting a wheelchair because that allows him to be out in the world without a constant feeling of nearly passing out.
I've been living with CFS since 1988. I got it just after getting the flu twice within a couple of months of each other. I was 32 and am now 59. Watching this video, makes me that we are more of a family of survivors than victims who suffer alone in the world. We are kind of a special group of people that knows how it is too suffer from this disease. I've learned much about surrendering when facing the unacceptable and am still learning. This disease has been a learning experience as well as making life very challenging.
I went for a short walk today and had to return shortly afterwards because my legs were feeling slightly uncoordinated and a bit shaky, plus I am experiencing dizziness and some brain fog. Other than that I'm doing okay thanks for asking.
I'm glad that this disease is getting more recognition. It is my prayer that help is on the horizon. I'm 58 and I've suffered with this illness since having mono in 1982. 34 years of suffering takes a lot out of a person. Hang in there!!
Barbara Monfrini I had mono too, now I have ME/CFS ever since I had Guillian-Bare Syndrome and Strep throat. It sucks but I keep pushing myself and regulating my energy. Hang in there hun!!!🤗❤
I had glandular fever first too and was diagnosed in 1997. I am alot better now than i was after years of physical and nutritional therapy. I dont know why some people decline and some improve somewhat. I think we will know one day.
This illness is beatable in some cases. I've had CFS since I was 16. I'm 28 now. I have a lot more energy now than when it all started. Stay strong everyone, we can beat this!
+Andrew JRT I got it when I was 13 and I am 29 now. It's getting worse and worse day by day. However, I have toughen up myself. Good know you are kicking its arse.
35% food grade hydrogen Peroxide Works! Please look it up! It send oxygen directly to the cells and caused a those that are plagued with fatigue to renew their strength :-)
mmedeuxchevaux what is CFS? i definitely don't have CFS cause i took H202 and i feel great and better than i ever felt. it cleansed my body and i can definitely feel it. H202 is basically just H20 EXCEPT IT HAS AN EXTRA OXYGEN MOLECULE. thats why its called H202. the extra oxygen rejuvenates cells. your body already needs oxygen so how the hell is extra oxygen to your cells bad for people who have CFS? you must be out of your mind
So sad so REAL...i have lupus, fibromyalgia & CFS, I was 1st diagnosed with EBV & within a year I felt worse, that was nearly 7 years ago. CFS IS REAL, PLEASE DON'T JUDGE CRUELTY Cause it can happen to you &/or your loved ones. May God Bless Us All❤
I suffer from chronic fatigue syndrome since one year after covid vaccine… I can’t do anything today, I spend all time resting, all my dreams are gone … it’s a really hard and horrible disease… you can’t do anything anymore … prayers please 🙏🏻
Thank you for this video. For the first time I have watched something that describes my life now. It absolutely feels like I'm living in a box and I am watching other people live their life.
I have my husband nobody else, all friends gone, house/bed bound God bless your family I really hope he gets better and can live a full life again........ I wish this for us all love, health and light to all who are inflicted.
This made me cry so much. I feel like I am losing my job my family my friends anymore. I can't go out as freely as I used to. I just wanna lie in my bed and die
This is happening to me the last twenty-one years. Lost my career, relationships lost or diminished. I’m so, so tired and in so much pain. It’s so disheartening.
I really hope you are feeling better. I was diagnosed with fibromyalgia and recently I've noticed more fatigue and joint pain. Last year I had low vitamin D levels and noticed my energy improve and joint pain went away when I went several months on vitamin D3. I was indoor this past winter and I'm getting back on vitamin D3. Ask your doctor to check your vitamin D levels, if they are low, supplementing will improve or get rid of many symptoms. Best of health to you!
I'm watching the Chronic Faitgue Syndrome episode of The Golden Girls and was glad to find this video. For those suffering with this disease I am really sorry. I am hoping and praying doctors and scientists are able to pinpoint the cause of this or the viral location and mitigate or eradicate it. I wish you all peace, health, and happiness!
First time watching this.. I'm nearly 60... I had severe CFS for 25 years...started with glandular fever... I was a single parent of 5 children...every day was like trying to recover from a heavy flu... I did the minimum duties..and Loved My kids so much... I became My own physician....and tried so many things... I still don't know what fixed me...but I've been totally well now for many years.... I always believed there'd be an end to this drawn out saga..and it did end thank God...please hang in there..Rob..
I also Had Cfs since 2012 and i also get better ,but i think for me it was fermented foods Like Kefir Nato kimchi Probiotics ,i watch Videos about it Here in TH-cam acidentally ( how your gut health afect your Health , mental and physically),i know that 2,3 Weeks afther i start changing my food i get better ,and from then i Just get better everyday.
i am so grateful for videos like this. i first became seriously ill in 1990. just now realizing how little awareness has changed since that time, even though now we have the internet and youtube, etc. online forums are great for patients with invisible illnesses, but it is not enough. it's very difficult to push for awareness and medical research when you are this ill. we need advocates and we need journalists, the news media, to share this struggle. thank you.
I've had this for 14 years after the Epstein-Barr virus contracted at the age of 42. I was an overachiever and stressed out about everything. I used to be able to take care of myself and drive but now I'm only able to be bedridden. I feel so very sick. If it weren't for my boyfriend of 10 years I would be in a convalescent Hospital and those are extremely dangerous places to be for many reasons. May God help us all🙏🙏🙏🙏🙏
Thank you SO much for your coverage of this story! So many of these sick people, like myself, are rarely seen or heard from in the public eye and by the masses b/c they are too sick and physically exhausted to do so. I can connect with different aspects of each person's story as I've had some of all of their experiences, the severity has varied. For almost 2 years I was house and bed bound besides Dr appt and sometimes an evening cruise around town my dad would take me on for scenery (when cooler out and not bright and busy). Then I had a semi-recovery for 5 yrs before relapse. My heart and prayers go out to the Davis/Dafoe family and the other 2 individuals as well!
***** I agree! Shared on FB, as did my mom. I am going to share this and the Lipkin/Hornig vid (I just saw it was made into a TH-cam vid from webcast) w/ news organizations. This needs to get out there, as does the #ChilliMEChallenge so it hopefully catches on!
[2:35] This is EXACTLY what it feels like! I have actually said that to people before, although my exact wording was, "I feel like somebody poured quick dry cement into my veins." It's an incredible feeling to hear somebody say exactly what you are feeling; to know that somebody understands you. Because almost nobody does. Thanks to whoever gathered these stories and posted this video.
My wife was diagnosed with Fibromyalgia, then my daughter could only push herself to go to school from 8am till noon. We picked her up mid-day for her entire 4th grade year. She looked perfectly healthy but have no energy to go to the park or ride her bike, just sleep and being tired when a wake. She's in 6th grade now. Going full day at school. She still feel tired and fatigue but as bad as in 4th grade. Watching your video, I hope this is not my future taking care of my daughter.
"Feels like someone took out all my blood and replaced it with cement." Reminiscent of MS / Lyme fatigue, but it's definitely far more severe and debilitating :( We must have hope for a cure. Medicine has evolved so much in the past 20 years, it can only get better from here.
Thank you for sharing. This is such a devastating illness, especially for those with this severity of ME. I really feel for those suffering at this level, and also for the families who give so much.
I just really have so much respect for this family. They have done more for me cfs awareness & getting this out as a real illness. When Ron said they don't have friends either it really hit me how the family struggles as well. Ron thank God is doing research. I'm 43 & have gotten to moderately/severe very quickly. I don't have a Dr. I have been turned away from the few I did try to see when I still could. What do I do now? Its pretty much over for me & there really is no lifeline.
I had a bad virus my junior year of HS, 1980. My senior year I nearly didn't graduate for so many days I skipped (to sleep, parents didn't believe me that I was so tired). I gimped along knowing everyone else my age had more stamina. I had strange pains, twitches, depression, intolerance of light, sound and fabric against skin, severe brain fog, irritable, stomach issues, dizzyness etc etc etc, I took an alarm clock to work with me so I could sleep on lunch hr in car. By 2000 I couldn't work, spent 18 hrs sleeping and another 3 or 4 hrs just laying in bed, I have literally crawled to the bathroom many times, holding my bladder til I couldn't hold it anymore. That was my life every day until a last ditch effort I tried BHRT 6 yrs ago, that helped raise the base for me some, probably 30% better on average (insurance doesnt pay for it and it costs me about 2 grand a year). I sleep 10-12 hrs a night, I sit in a chair for 2 hrs until I push myself to get something done, then I sit another few hours, I take frequent naps, I take epsom bath every night to help the pain, I have muscle relaxers and percocet for the really bad days. I wasn't diagnosed until I was 49. I have been called, lazy and crazy more than I can count. I am now 55 yrs old. I have learned to "bank" energy, if I need to do something or go somewhere, I do nothing for several days before, if I over do it, I pay several days after. I have tried numerous supplements and changed my diet (which is super hard when you have no energy to cook, many times after I cooked, I was too exhausted to eat it). I would have ended my life long ago accept that my husband finally came to believe me, but even for him, it took seeing the difference after I had the BHRT to KNOW I wasnt just lazy. I keep my house reasonably clean by cleaning one room a day, sitting as much as I can while cleaning, on days I don't clean, I do laundry sitting down. That's it, that's my life AFTER "getting better". Two beers will keep me in bed for 4 days so I no longer drink at all, climbing more than 5 stairs, out of the question. Today is a bad day and I counted up how many years things have been pretty bad for me, at least 30 years, almost 40 if you count from onset. On days like today, I don't wanna do it anymore (keep living), so I look up ME/CFS videos and try to find hope or people worse than me to remind me I am better than I was. It has to have something to do with the energy production, whether that means signaling from the brain or the mitochondria being broken, I don't know, but this kind of tired is not the normal kind of tired after a long work week. This is flu-like tired, bone deep, no gas, empty tank. Many, many times I have been walking from here to there and wondering "how am I still not just collapsing?" The next person to say I just need to pull myself up, or push through, or start an exercise program, I will take my last ounce of energy (what am I saying, I only have the one ounce!) and attempt to punch them. I am open to any and all suggestions that have actually helped someone else with this THIEF of a disease. She's right, it steels everything. My son can't stand me because he thinks Im just faking it (he doesn't remember when I wasn't quite so bad). What is wrong with people that they can't see that nobody would WANT to live like this. But hey, I LOOK healthy so there ya go. My heart goes out to all of you that have this or take care of someone who does. My husbands love and kindness is the only reason I am here.
Rob...I know EXACTLY how you feel and what you are going through. I have ME/CFS as well, plus many more health problems. Did you ever have Mononucleosis back in the 80's? Did you ever have some sort of virus like strep throat, or get a flu shot? These things seem to trigger ME/CFS. I had Mono in the 80's, then later I got strep throat, and right after the strep throat I came down with a rare auto immune disease called Guillian-Barre Syndrome. I was paralyzed and in severe pain for about a month at Johns Hopkins. What I didnt realize at the time was I had also contracted ME/CFS. While regaining my ability to walk, talk, eat and so forth, I never FULLY recovered, due to the ME/CFS. I got better, but I never felt completely better. I was told once again I was fine. I knew I wasnt. (I also had gone to 3 different drs while recovering from the strep throat, but still feeling really crappy. All 3 told me I was just still recovering from the strep throat. When finally I could not walk, they believed me.) Anyway, hang in there hun. If you need anyone to talk to or just let some frustration out to someone who has been there, done ..well, doing that...just let me know.😊
Heartbreaking story. I've battled since 1999 and though not nearly as bad as this young man my life has changed drastically. Along the way I've become so isolated I barely have an existence beyond my door. I can certainly relate to how you pretty much watch life just pass you by. The vast disparities. between what AIDS receives and the pittance that CFS is allotted is horrible and needs to be changed.
this is very moving. its time that the nih stopped behaving irresponsibly, and started serious funding of medical research into ME/CFS, but this is unlikely.
I understand what their going through... I have lupus, fibromyalgia & chronic pain and chronic fatigue, its horrible...im maybe 90% bedridden everyday, every week, every month & every year..its been 8 long years, its overwhelming & devastating cause there's no cure for lupus, fibro & chronic fatigue.
Thi9s makes me feel so much more validated. I'm nowhere near as bad as these people but I am so tired that I have have to go to toilet for mini breaks to have a few minutes sleep. I just can't help it.
Damn...my dad is a ceo of a children’s hospital. He ignored my spinal deformity and told me to stand up straight. Then he disowned me and I got on ssd. I’m disabled and he has a family in a mansion. And allot of other houses. I can’t get proper pain treatment.
What a loving family. That is the very definition of true love standing by your loved one, and always being there for them no matter what. This is so sad their son and brother suffered so long hopefully he has either gotten much better, and is able to function again.
Great job. I think it is important the word gets spread also, which is why I started my own youtube channel about how to overcome chronic fatigue. Keep up the good work!
I have CFS, is terrible and I live in a situation of extreme poverty and I am not able to advance in my life, like something weights inside me that makes everything tiring and strong noises, social interaction, everything is just too tiring to perceive, I have to mask it because nobody cares about me. If I need to put mental or physical effort into something automatically want to sleep deeply and lose me from this reality, I need my capacity to learn effectively and stop worrying about.
The latest research seems to suggest that enteroviruses in the gut are responsible. Will this change things I wonder. All in all, conventional medicine is proving itself to be worthless when it comes to CFS. Conveying fatigue to another person, when you look normal, is very difficult (except for the days when you look exhausted). If it was possible to click your fingers and swap bodies instantly, then that would make all the difference. The mental fog is the worst. The aches, the tiredness, the loss of a social life, the aversion to sunlight etc.. all elements that create a whole that feels like life is one exhausting walk through an opposite flowing tide of water. This video struck so many nerves.
i love what you said about swaping bodies, i think about that all the time. i wish other ppl could actually feel what its like to be in my body maybe then i wouldnt feel so crazy. i dont think the average person would last 5 minutes in the shoes of someone with cfs
Thank for for the recent feature articles on ME/CFS a relatively unrecognised and under-resourced devastating disease. This video is an excellent tool for raising awareness of the severity of the condition.
The fact that early symptoms are much similar to depression actually scare me. Because i have seen people getting called like "you don't have injury, you are just sad all the time and for that! You need a wheelchair??!" Like have a chill, you never know what the person is going through. It's better to keep quite if you can't be kind... PS. I am just stating my experience with people suffering from CFS
I was taken to the doctor for weakness and fatigue when I was 8 years old. Most summers are spent on the couch or in bed. I get a little better when weather cools. However, I have been helped some by Provigil. I don't take it every day because I know how tricky this syndrome is... once a med works, the CFS will outsmart it. Now when I have company or have things to do, I will take the med and I notice my cognitive function is so much better. I feel sorry for the people in this video. Except for the very sick young man... I have been this way all of my life. And what makes it worse, people think there is nothing really wrong with you.
First I heard of another person taking provigil for the CFS /ME I agree that it works but not always and definitely more for the brain fog symptoms. It helps some for symptoms but by no means a cure. These days I am more homebound. I am a single mom. I push till I burn out with the provigil because my daughter. This however is taking it's toll. I only have so much push and it is not enough for my daughter but too much for my body. The burn out has caught up and won't allow the push. I thank God for showing me ways. Some days are some days but if I didn't hold on to God's unchanging hand I still say it would be worse.
Because it is sooo expensive I only took on days I had to do things very taxing... it did work. You can tell though it wears off. The good news is, I seem to be having more good days. If I were you Heidi, I would really have my thyroid tested over and over again. When I was young, it came up overactive.... more than once... My symptoms are so on point for under active thyroid (hair falling out, throat swelling, getting choked, body aches) yet it always comes up normal. On top of that I can't afford health insurance, since I am sick I can't work, I live on alimony. They should be testing your regularly. Good luck.
Old comment I know but for anyone reading now: I tried Provigil… It just made me jittery on top of tired. That was about 15 years ago. I’m in my 40’s now and desperate so I might try it again…
i also have cfs (i'm only 17) i've had it for like almost 5 years now but they only discovered it less then a year ago. i ddid go to school but i was sick alot, i could never be as active as others with p.e. and no one really understood they always told me i should hve gone to bed early or they thought i was just asking for attention.gladly i did graduate high school but after that i didn't have any energy left, gladly i have a year free from school and start college in september again. i can't work but i have a little job as a dog walker so i get outside and still get some energy and excersise because what the therapist told me is not to go to sleep and get rest(because even if i got 12 hours of sleep i'd still feel exhausted) but too excersise and try to get a better condition, i've been doing that for like a year now and i must admit i'm doing much better then i did when they found out what i had and they told me i could get completely better, i mean i know i won't get completely better (maybe someday though) but everything is better then what i felt before:)
I was diagnosed with MS at 35 and then fibromyalgia 5 years later. I try never to schedule 2 days in a row or two things in a day. I spend a lot of mental energy worrying about my schedule. If I have to get up at a certain time, I have such anxiety for days before.
It is a very isolating illness. If you know someone with CFS , help them in whatever way you can. Show your compassion, be there long term. Because chances are they don’t have many people who do this. And there are probably people in their lives that are dismissive of them. Even close family, which means they need even more love and support than you may realise! 🙏🌸🌍
I thought I was bad off because I take Jet Alert to keep going, but geez....these people are so much worse off than I am. I think my depression drags me down to exhaustion all the time.
I've suffered from CFS/brain fog for about eight years. I've been to offer twenty doctors and have tried everything you can possibly imagine including hypnosis lol. Currently, I have experimented with upper cervical NUCCA treatment because I had one hip lower than the other and an imbalance in my shoulder. If you look up the symptoms, you will notice that CFS/brain fog is one of them. It's definitely worth the time to try this. I've been doing it for about a month and it seems to have helped. I hope you get the help you need!
I strongly believe these chronic problems have roots in the gut. And things like fasting and very specific diets over long time is the answer. This isn’t easy but I think based on my current experience this is the way. I really appreciate when that man said toward the end the really sick ones aren’t coming you need to go to them. I have told this to my annual GP that you don’t see me because I don’t have energy to come
I'm living that scenario sort of, Mistress Kitty. My parents care deeply and help me, but the help my father can give is limited by the fact that my mother is as bad off as me with Rheumatoid Arthritis & Lupus. I live in filth. I just can't wash clothes or vacuum. I crave a home cooked meal, but I don't have the energy to wash and chop vegetables or to do dishes afterwards. I haven't even made bottled spaghetti sauce spaghetti in 6 months, LOL. Talking or applying elbow grease while standing ruin me, as do showering and grooming. My sisters work full time and have kids, so they don't even have time to talk on the phone much. I'm not bed bound, and I can drive in town, but using supplemental oxygen, for example, is almost beyond me b/c I can't lug around the bottles. Hope springs eternal. I'm encouraged that stem cells are potentially a game changer, and the Australians claim they've cracked the riddle of the root cause of this disease - it's a calcium ion channel dysfunction, according to their theory. They say they're working day and night for a cure.
July 16 2021 is when my life completely changed. I was supposed to compete in a Brazilian jiu-jitsu tournament the next day but woke up with some nausea and felt very fatigued. I had no idea what was wrong with me. I thought I just had a stomach bug. After a week I did recover but something wasn’t right. I felt off all the time. My eyes became sensitive to sunlight and as I continued to train in bjj I felt more and more fatigued. I began to lose energy to workout and I lost my muscle and became thinner. I couldn’t think properly and my head felt cloudy all the time as if I was hungover. This is known as brain fog and was my worst debilitating and frustrating symptom. I had to quit bjj in october 5th 2021 because I physically couldn’t do it anymore. I barely passed my classes last fall because my memory went to shit. I Started doing tons of research on what's wrong with me. I went to several doctors appointments and saw a neurologist as well as had several blood work tests done on me. My father, who is a very intelligent ER physician, did not know what was wrong with me. I found after hours of intensive research that I had chronic fatigue syndrome(aka post viral syndrome). I was devastated. There was no medical cure for cfs and my life was just getting worse. I was going downhill fast and I knew that if I didn’t fix my health, then I would be bed bound. At one point I was suicidal. But I knew that would be selfish as I have a mother, father and sister who love me very much and would be devastated if I killed myself. That's when I decided that no matter what I couldn’t give up and I wasn’t going to live like this either. I accepted the fact that no doctor was going to fix me and the only person that was going to save me was myself. That was my first I did hours and hours of research on how to improve my health. I cut out all artificial sugars from my diet. I mainly stuck to meat, veggies, and fruit. I read books such as Joe Dispenza “Breaking the Habit of Being Yourself” and watched his videos. Joe Dipenza was paralyzed from the waist down and learned the ability to walk again through meditation. I thought, if this man can recover from a spinal cord injury and use his mind to walk again, I could do the same to heal my body. I did hours of meditation as well as did a brain retraining program called the gupta program. I prayed to God. I also took supplements such as coq10. I blocked any negative influence on my life. I also did no fap/semen retention. As I got better I continued to increase my physical intensity when it came to working out. I started off as small as 50 pushups doing multiple physical exercises. My life began looking up again. I started being able to do more things. I gradually gained my memory back. I went back to school. I documented my progress on how I was doing each month. Today I am fully recovered. I am back to what I was before I got sick. I train multiple times a week in bjj. I am in great shape. I am finishing my last year of college. I just received my blue belt in bjj. To anyone out there who thinks it is impossible to recover from this, don’t give up. Your mind and heart are powerful tools. Use them. Don’t waste your life going to doctors and waiting for the medical system to find you a cure. I was fortunate enough to realize after the first three months of being ill that doctors weren’t going to save me. That realization is why I am here today writing this. If you put your mind to it, you can accomplish anything. Some sources/videos I used to recover are cfs recovery, health recovery, harry boby long covid recovery, and joe dispenza-all found on youtube. I also prayed to god asking him for advice and I also did the gupta brain retraining program.
I was recently diagnosed with cfs but have been suffering with it for years. After consulting to a number of doctors, one finally gave me an annswer which I believe is tru because it is definitely what I am experiencing. Tiredness, headaches, brain fog and more. It's hard to keep going on keep working with all these symptomps. May God take me soon. I'm tired fighting the disease.
I am in bad shape can barely wipe my own butt been suffering for a long time and nobody understands how hard it is to try to keep going with this nightmare everyday is so hard to do anything at all! I have child support trying to lock me up and put me in prison because they think I'm lazy and don't want to work! I can't even take care of myself let alone hold a job! Just wish everyone knew that I'm not intentionally doing this on purpose I can't help what has happened to me it was out of my control! Nobody is ever going to fully understand unless it happens to them! I don't know what to do and don't know how much longer I can put up with this pain and suffering and the dizziness is overwhelming it's just way too much for anyone to handle! I need help so bad but nobody wants to help I've lost everyone and everything! I live with my dad and he mocks and makes fun of me 24/7 and dedicates all his time making me look bad and paints the wrong picture of me that I'm lazy and don't want to work and it's all wrong everything is wrong!
I'm so sorry that you are in this situation, my friend. I have lived with this illness for many years and I know how it is. Healthy people don't understand. The truth is that you are not lazy and it is not your fault. You have a sickness that prevents you from living the way you would. Learn to pace yourself and do the best you can. Do not accept shame or blame, and do not give up.
Hundreds of ME/CFS patients have tested positively for mycotoxins, not only in their bodies but their homes (ERMI testing). Those who have had a chance to escape their home environment and go to an area with clean air have improved greatly. A few resources to look into are paradigmchange.me, the Facebook group "Mold Avoiders" or google "Erik Johnson, mold". If there's any way to get this young man to another environment, he might be helped. Best to you and God bless.
Gail Williamson They've already looked into the possible mold connection according to a Facebook post from a year ago or so. Personally I would not recommend the Paradigm Change website or 'extreme' avoidance as while it can help people temporarily feel markedly better, these extreme avoiders often, almost always develop severe MCS and sometimes as a result end up with no place to live. Erik Johnson admitted to me on youtube that even after 30 years, he still has to avoid mold, while others, who did moderate avoidance, have recovered enough so they can tolerate 'normal' buildings without experiencing a severe setback. Some 'extreme' avoiders have been able to recover though, that's for sure. And Susan Kreutzer, if she got ill during a trip to Tahoe, should seriously consider treatment for mold. Someone commented on the Palo Alto article that if Whitney's parents could locate doctors or experts from the places Whitney traveled to (as he was getting sick) then they might be able to help eradicate possible hidden parasites that may be affecting his health.
Hi there! I just saw this video as I am in my 10th month of battling CFS. However, my story is a little different and I can't help but wonder if it could be a factor behind other cases. You see, I suffered from mold poisoning. I lived in a downstairs apartment and the upstairs neighbor had a pipe break which flooded my home. A few days layer, my fiance was severely injured at work which lewd me to take care of him 24/7 (needless to say, forgot about any damage that was done). A few months later I was so fatigued and weak that it scared me. I went to the doctor and she told me I had just had Epstein Barr. Mind you, I'm generally a healthy person so it was odd to me to have this virus. Then sinus infections became chromic...I had never had one of those before either. Migraines...never had headaches really. Light sensitivity, sound sensitivity, anxiety, rash, tremors, dizziness, vision problems, weight loss, brain fog....and so many more symptoms would take over my life those next months. When the drs couldn't figure out what was wrong with me, and I noticed that my pet parrot began having bloody noses, something made me think we were both being effected by something...I thought mold. I bought an at-home test and sure enough it was positive. Long story short (bc I'm getting exhausted just typing lol) I moved and got rid of all my belongings. Here I am, over 2 months later and my fatigue and weakness is so severe that I am in bed between 3pm-5pm for the rest of the night just about every day. I recently have been experiencing pain now too. Through research, I can't help but believe this was all caused by the mold from the water damage. I'm 37 and live life in bed now.
I don’t think I ever got as sick as Whitney but I did spend an entire year bedridden not sleeping, just in a ball of pain, nausea, vertigo, and anxiety that was crippling. It was absolute hell! But I’ve been very hopeful about these neural retraining programs out there like DNRS or “primal trust” or the Gupta the program. I suggest anyone with a similar condition or any chronic illness look into some of these programs. Many of these illnesses come down to a Lymbic system that has become overreactive and that can be fixed ❤ Also the isolation makes you more and more sensitive to things like at one point I thought I was having auditory hallucinations hearing a didgeridoo when actually it was the neighbor’s AC unit very very slightly vibrating my window pane. Nobody else could hear it until my dad finally listened very very closely and could slightly hear what I was hearing all the time very loudly. I strongly urge any loved ones of people with this condition look into brain retraining. It saved my best friend’s life after being horribly sick from toxic mold and unable to swallow for an entire year.
I so scared I’m going to be diagnosed with this. So many doctors, so much blood work. But still no diagnosis. My blood work is off, my imaging often comes back with issues but nobody can tell me what’s wrong. I’m in pain and the exhaustion and pains is unbearable at times. I’m scared bc I don’t want to be judged and looked at like it’s all in my mind when it’s not.
Currently I am on disability because of chronic sinus infections. I have all the symptoms of CFS, and my doctor said that if the catscan of my sinuses were normal that was the next route to find out what is wrong with me. My sinus infections have been going on for years, but now I see little improvement with antibiotics. I have had an infection for about 8 months. The cat scan came back normal, so I am looking for information on cfs This made me cry. The only thing that gives me a little hope is my doctor sees this as a possibility before I did, and I am not going to have to go through being thought of as crazy to get help
Juliaoceania read dr. joseph brewer's papers regarding mold and cfs on pubmed. I believe there are two. He finds many patients with mold reactions have mold infections established in sinuses. antibiotics won't get them.
I’ve had chronic fatigue for 3 years now and it’s so frustrating. I’m in year 9 now and I feel like 3 years of my life has been taken away from me and it’s been so hard in every aspect of life. But I feel quite lucky compared to the guy in this video I have months at a time in bed but I have at months where i feel like I’m back to normal. But this video was so relatable.
It's difficult. I only got a few good hours to do anything. If I pace myself I can last a little longer. I start to cramp and hurt everywhere. I'm not letting it beat me. I did get to a point were I was not able to move around. But I get mad to push myself. You gotta find a focus and a routine. I have meltdowns when something happens to disrupt my day. Trusting God helps.
I've had it for 13 yrs,l can tell you it's awful and when you live in an underdeveloped country without access to affordable medical care and no one around you gets it because it's invisible to them and just assume your lazy and worthless, you do get suicidal.
For me, a "nutritional balancing program" has turned my life around. It takes a few years, bit if I could, I'd put you all on it. Basically, stress patterns in your body are analyzed via hair mineral analysis (versus looking at absolute values of the results, as most who use hair tests do). Youre then given 5-6 vitamin and mineral supplements ($100-$150/month) based on your results and given a specific diet that's 80% veggie based (9-10 cups cooked veggies a day). The diet is totally unique because it combines paleo with chinese medicine principles. You also detox with a near infrared sauna. You basically remove all major stressors from your body and load up on nutrients from the veggies and supplements. Your body then has the tools it needs to repair and dump all the heavy metals and such on its own--no chelation. People I know have had their whole body itch or break out in a rash, blisters pop up out of nowhere, toe nails puss up, etc The detox process is immense and actually terrifying at times. 1.5 years later though, I am in awe of the program. The craziest part is that it's seems so simple. You only take a multivitamin tailored to your metabolism, digestive enzyme, kelp, immune support, calcium/magnesium, and if needed, glandulars. For those who don't like fish, vit d and omega 3s are added. That's it. I highly recommend you to look into it and at least try the "free program" if you're skeptical.
Wow I have me/CFS and sadly I am unable to read all that's written however I so wish I could stand to cook digest vitamins am glad this worked for you for those of us who can't walk stand it's a challenge that overwhelms me however if I could great advice 10 years and honestly can't believe I am alive but dance through living life to fullest when well love to all
I developed this condition to where even 10 hours or more of sleep is not good enough. There were times that I would stay in bed for 24 hours and sleep cause the fatigue was so horrible and it was due to my binge drinking. I decided to cut back to no more than 1 drink and my fatigue level has decreased and I go to the gym everyday. However lately it's been acting up again. Just wish that it would go away. I also was shocked to know that Cher and Flea from The Red Hot Chili Peppers have this condition. I saw Flea once and he seemed so full of energy to be able to preform.
I wasn't hit as hard as many of you but it still felt like my world collapsed around me.i first saw symptoms In October of my second year of secondary school , less than 48 hours after my second hpv shot.over the next three years my grades dropped.i couldn't concentrate due to headaches and didn't have the energy to do homework. In march of my fourth year I got a formal diagnosis and my uncooperative school offered bare minimum support.i dropped over half my classes (I should have been offered tutoring but I had been threatened to be kicked out of classes and my year head called the education welfare officer to 'investigate my low attendance and rule out truancy ' .i left the school in November of my fifth year and have been homeschooled since.i go out once or twice a month with friends because after I do I sleep for most of the next two days
I have CFS and horrible fibromyalgia. I believe i got it after chemo. I also have sight, sound, and smell sensitivity. I used to be a flight attendant and loved my job. I would do anything to get better. I have tried so many things. But I do have a lovely cat who keeps me company.
Yes, me too... no help & doctors cant prove it so cant get caregiver help covered so far... have been tken to E.R.multiple times in last year when almost collapsed. Alone & no help... what to do..?
I have been sick with CFS for 30 yrs now,friends have long gone and my life has literally been taken away.Some yrs ago I did a blood test and resulted positive for Epstan-Barr, the virus stays in the body (I got it from glandular fever) and 2% go on to develop either CFS or an autoimmune disease.
Bartonella. Finally came up positive. Late stage lyme too. Same symptoms. Maybe a vector borne illness in this case as well. Hoping for a cure for all of us.
If you guys look on Gillian Berry’s channel, she interviewed a woman who had this ot something similar. She was basically on her deathbed. Now she is doing 5ks after a juice fast.
I’ve had CFS and/or FM for about 10 years. I’m moderate but am single man and still work and must work. I have a desk job and that is probably the only work I could do. But I don’t have the sensory sensitivity like others do. Maybe that is in more severe cases.
I just finished praying regarding my fatigue The amount of ignorance surrounding this Syndrome is terrible I've heard It all your lazy your this your that my prior life I was able to graduate top of my class traveled all over the country and World had a huge list of friends had a huge list of working experience I can play all of the basic instruments (piano ,bass, guitar, drums) and yet I'm here on a Friday night not knowing why I am so weak with a crap load of medical bills on my desk why why why why why just ordered an enzyme supplement from NOW products this is real people
You can read more about some of the ground-breaking mecfs research at Stanford discussed by Ron Davis in the video, here www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/ Donate here www.openmedicinefoundation.org/donate-today-to-the-severely-ill-big-data-study/
I had CFS and have found that artichoke tincture (in alcoholic solution) have given me the energy I lacked. CFS starts with a bad diet over the years, a diet lacking raw food. Tinctures in alcohol have raw vegetables in a way you digest them. Valerian tincture also works for this.
+Giro Coco : I'm glad this worked/helped you!! CFS may have started that way for you but it certainly does not apply as a general rule. People who've eaten mainly Organic food, vegetarians etc have become ill with CFS. Best wishes.
The paranoid part of me wonder if some of these poor souls are being poisoned by someone close to them :( I really hope thats not what it is but Ive seen horrible stories like that on forensics files.
I have had CFS for 17 years. 2 years ago I was diagnosed with congestive heart failure. I read where the top three causes of death in CFS are CHF, cancer, and suicide. Can't help but wonder if my heart problems were caused by CFS as I have no risk factors for CHF.
I've had this for 33 yrs I lost everything my family sees me as a lazy ass..I had a brain scan but the spinal cord scan shows a lesion could be MS PLEASE CHECK FOR MS after my next scan I'll know if its MS or not I tried all diets my energy is 7 ON 20 nothing makes it go up I'm not bipolar lots of docs will say bipolar antidepressants do not work for me I tried them ALL! exercise can bring down convulsions for me as my body shuts down due to extreme exhaustion
I am a 57 year old man. 24 years ago, I had a careless sexual encounter and shortly afterward I became very sick, and this illness lasted 3 months (acute) and then another 3 months (milder). I got tested for all of the STDs, including HIV (after 6 months, and again after 5 and 10 years--even though I had had no further STD possible exposure--because I would keep getting sick and I did not trust the HIV test). All negative. I had recurrent episodes of feeling very ill and having severe fatigue and sore throat every year to two years, lasting from 2 weeks to over 2 months, and then I would get better again. But for the last 10 years, no recurrences until about 6 weeks ago, when I had chest pains (now gone), then sore throat, tinnitus, headaches (not severe but persistent), armpit lymph node swelling, severe fatigue, and worst of all a very "sick" feeling, like I am being poisoned almost. My GP cannot figure it out, and I do not know whether it is CFS or something else. (I guess it is not HIV, because even if one does not trust the tests, I do not think a person could live for 24 years with HIV without any treatment and in generally good health.) I am hoping it goes away soon and I do not have another episode for another 10 years. One 2-or 3-month episode every 10 years would be okay by me. Any ideas anyone?
The comment about " blood feeling like cement" rang so true. And its so beyond being " Tired". its a fatigue you cant push through. I dont even try to explain it. I know I look lazy, but I just have no energy and chronic pain. Its a very poor quality of life.
You become a walking zombie literally and people misunderstand and think your shutting them out, euthanasia will be a dream come true but l can't even get that in my country,he's so lucky to have the care of an accommodating family .l don't have the luxury of being cared for so l struggle to work and struggle to take care of all that l have to.Without energy you can barely do anything. Energy is everything.
I suddenly got this after Covid. I really hope it goes away because I really struggle to do much. And if it's permanent, I really don't know what I'll do.
JUDY MIKOVITS attributes Chronic Fatigue to a RETROVIRUS, I personally found progressive relieve from low energy levels with high dose SELENIUM after discovering its role as a Full spectrum ANTIVIRAL, Hope it helps somebody.
Interesting how the way they describe it sounds exactly like an autistic shutdown (which I've experienced and feels like a temporary and unwillful catatonia) but to an extreme level.
Even though I too suffer from this illness, I nonetheless managed to be an extremely productive writer. It seems that, at least in my case, this illness is selective. Writing is one of the few things I can actually do without spending much energy.
I always thought I could probably handle a desk job pretty well, so I get this. Also what's weird is that I can walk OUTSIDE and not really get fatigued either. But someone asked me if I'd be interested in a housecleaning job and I just thought, there is NO WAY my body could have the energy for that! It's the physical energy expenditure that really gets me, even thinking about trying to get ready to go somewhere makes me tired! I honestly experience some kind of social anxiety beforehand because of thinking about all the energy required to get ready to go!
I was diagnose with CFS for years then found out I had Lyme. Lyme has been treated but I still have CFS although greatly improved than before treatment. CFS is horrible so I feel for anyone that has it
CAC Brodley syrup contains Shankhpushpi (Convolvulus pluricaulis ), Dhania (Coriandrum sativum), Saunf (Foeniculum vulgare),Yashtimadhu (Glycyrrhiza glabra),etc. This syrup mainly acts as anti-depressant and reduces the stress level. It boosts power memory and increases the blood flow to the brain. Brodley syrup also acts as an anti-oxidant and increase the retention power & beneficial in chronic fatigue syndrome.
Maybe this will help maybe not. I few years ago I got sick. I thought it was the flu. And then after the flu I started noticing weird things. My eye and hand coordination were exactly in sync. Then I lost hearing in one ear. And then the next. I went deaf for about 2 months. And then the fatigue set in. It was as if I had become an old man. My joints started to hurt as well as my bones. Even though that sounds weird. And whats even weirder is that I never went to the doctors. I wasn't really worried. Don't know why. But I wasn't. I was just like meh. At one point I couldn't even close my hand as in making a fist. So for what ever reason I came to the conclusion that this was some type of autoimmune reaction I was having. And I went online and found out about diets that people claim had cured their cancer. So I thought why not. And basically its just eating green leafy vegetables and fruits. And so thats all I ate. For about 1.5 months. I also came to the conclusion that the food we eat is actually extremely bad for us. All of the msg, preservatives, etc. Don't ask me why thats just what I thought. And little by little I started getting better. To this day I rarely eat fast food. I'll only eat meat like once or twice a year. Everything I eat is pretty much made from scratch. I try and shoot for organic, and I still drink my green drink every few days. And I've never had an issue again. I don't know if this applies to you but if you're already at your wits end. Then I don't see why not.
THIS ILLNESS IS REAL. You lose everything ive been told i have Lupus and Fibromyalgia but i suffer from the terrible fatigue every single day and its getting worse... I hope for a cure.
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
I've struggled with CFS for a decade. I had to push myself through college with it, working on top of it. I graduated top of the class 5 years ago, and was accepted for a masters degree. I had to cancel it 2 weeks before it started due to my CFS getting progressively worse. Since then, I've spent 95% of my life in my bedroom. The relentless exhaustion, brain fog, depersonalisation, food intolerances, depression, anxiety and lack of interest in life is too much for anyone to endure. My brain can't process information properly anymore. I had an IQ of 140 in college, I'm afraid to even see what it is today. Even conversing with people is difficult, as I have trouble trying to absorb the information they are presenting in their conversation. It's horrible.
For anyone else with CFS watching this - all I have for you is a hug and my deepest empathy and love.
Makes me wonder if CFS often happens to people who over perform and who over succeed in life, who push themselves too far to get ahead not knowing the limits of their own body.
Who have to go through a gradual period of healing in consequence.
No - that doesn't appear to be a trigger. It can happen anyone, at any point of their life - no matter how active or inactive they are. And that's the most scary thing about this and why more people should seek funding for research - It can happen anybody. Over a decade ago, I was healthy and happy and then BAM. It hit me. It can hit you. It can hit anyone.
Sean Ó Briain Oh yeah I already have it, I was speaking from experience. Still trying to figure it out myself, I never went to college though I have had a lot of stresses. So it's been on and off for me.
It's difficult to say, but based in all research - I suspect it's any kind of foreign body that triggers a defense mechanism in the body, which in turn causes a hypometabolic response to protect the body's cells.
I don't think stress is a trigger, but rather can aggravate symptoms.
Loneliest life.too tired to even tell people I’m too tired. Can’t even visit the doctor because I cannot push myself in the wheelchair to get on the bus
Say what city your in to see if someone will help you.
Every day is misery. Iam 32 and I think Iam young I should be able to get out of bed and do something going even to the grocery store I have to stop and rest and then afterwards I have to come home and sleep for the rest of day. This is called living. Praying 🙏🏻🙏🏻🙏🏻
I took a class to become a holistic health practitioner. I would contact Pure Vitality in Georgia. They do remote care and testing and have some amazing stories of helping people
Have you tried mind & body program
I’m now 70 years old. Have hope. Keep looking for treatments and doctors who care. Medicine will advance. Treatments will be tested. Eventually, causes will be identified and treatments will begin to work. Try to hold on.
I have CF & FM diet definitely makes a difference...
Omg that resonates with me... "I can cook my dinner or do the dishes.. but I can't do both". I vacuum my house in sections because I can't make it all the way around.. And not 2 days in a row...it Wipes me out for the whole day. And this is now I'm so much better than I was 10yrs ago. Its crippling and nobody takes me seriously 😞
I know exactly what you are saying. I have finally found out that all of my illnesses are from Ehlers Danlos Syndrome, it was so incredibly difficult to get my diagnosis because it's horribly described by Google and undereducated to the medical community.
I have 2 sibling friends living with me and they help me live day to day
I can brush my teeth or take a shower...
Thank God I got well after decennia of it.
That's me 30 years of this started at 35 never left. Ups and downs thru time. I always tell my husband I can either wash my long hair today or take a bath but can't do both.
I understand. I was diagnosed with cos them fib ro and lupus, you have to choose between two things. God bless and I am sorry you are going through this.
It's important to recognize that "this illness" is poorly understood, and as the different presentations in the video shows, it probably represents a number of different distinct illnesses. It's heartening to hear people share stories of how they "got better," but equally important to remember that what worked for you (whether that was avoiding gluten, using hydrogen pyroxide, meditating, or take anti-virals) isn't a cure-all for everyone. I know people mean well when they say, "you can beat this thing!" but the truth is that, just as with cancer, we really don't know why some people get better, and some people don't - and anyone with a chronic illness would probably agree that they'd rather experience compassion than "motivation," since for many, "beating this thing" may not be a realistic goal,
I think this is the most accurate description of the current situation. A family member has this and I would put her in the group that have a physical illness rather than a psychological one.
I think doctors use this diagnosis as the rubbish bin of medicine, when they can't figure out the problem they throw it into the CFS category and leave the patient on their own. No doubt we're dealing with a ton of different metabolic disorders, immune disorders, neurological disorders and some psychological disorders. I work in regenerative medicine but I keep an eye on the CFS research in the hopes that a promising study may help out my cousin.
J Rae also the idea that it’s “caused” by vaccines or doctors or any of that-it’s incredibly rude.
U are so right..well said
@@ilikeceral3 no actually it's not. My CFS got worse, I'm 20 years in, after recent vaccinations and no it's not in my head. It's rude to rule out anything, that's what's rude. You have no idea how awful vaccines are. When you get very sick, they are contraindicated, I should not have been allowed to get them. Do some research. After that happened, I'm shunning doctors, following the research and working with my microbiome and dna for healing. Sorry, I refuse to believe, I am stuck like this, w/o hope I will die and so I won't stop trying to heal until I'm dead.
I suddenly got this after Covid. I really hope it goes away because I really struggle to do much.
This makes me cry. This makes me know that I'm not alone. This makes me see exactly what I've gone through since 2007, constantly looking for help and getting nearly none. I am so grateful for your beautiful yet heartbreaking video.
You've made it clear why it's such a struggle for me, the caregiver, to care, to work, to manage the home, and to have a life. There is a piece of this that is always ignored: The isolation is almost like solitary confinement.
The whole thing is a nightmare. I am grateful for your video.
+Nancy Lamb i,ve suffered M.E. 29 yrs that has taken away yrs of my life
+Nancy Lamb were you bitten via a tick? Borrelia/Lyme Disease? How much butter, ghee, lard, dripping do you eat or do you do low fat? I am a researcher and a suvivor of CFS, what type of fats do you consume and the amount?
cathrine here i do not eat fats only low fat flora marg please tell me more of your M.E. illness you say your a suvivor how have you over come this devasting disability ??
ciggy more to say I have completely recovered is wrong and what set it all off was several tick bites. I lost my balance, all my energy and memory went, gut was very bad and I can't tell you other things as it is just crazy private stuff. Basically real cod liver oil (no extra omega 3 supps in high dose as these can inhibit parts of immune system) with very high vitamin A and high dose vitamin D, high butter, ghee, lard, dripping with veg, moderate/small meat helped me the most. The fat also helps the minerals and fat soluble vits go in and assists protein utilisation. Fats help to destroy candida, line the plural fluid in lungs preventing bronchitis and have antimicrobial properties. Adding some carbs in small amounts might help the diet to be more manageable. For vegetarians, adding lots of ghee, butter, eggs would be therapeutic and coconut oil, little flax oil. I tried lots of herbs, artemesinin which was helpful but they have side effects or just stopped working. I use to get candida and the IgG and IgM were positive in tests but these all came back normal on my diet. I am describing a keto diet, but this can be adapted to the point you don't have to go into ketosis, just add much more fat to your diet in exchange for bread and white flour, sugar and GET ALL THE FRUIT OUT accept peppers/tomato (unless you have arthritis, with issues to the deadly nightshade family). I am not saying that carbs is unhealthy for all mankind. I am talking about treating ME/CFS which could be caused by borrelia, mycoplasma, virus, which means we need to get our immune system up. Even HIV virus likes the sugary proteins to bind to in order to get into the cell. We do need to consider gut bacteria and these need veggies and perhaps if you can handle them beans/chick peas to ferment and multiply. Probiotics and prebiotics/inulin is good in small amounts. I think homeopathy may help support the HUGE emotional burden of CFS/ME to a degree but the ME itself, although Lidum 1M is used for Lyme disease in animals and humans in early stages. Everything I say here is based on my philosophy and experience, study etc. I maybe completely wrong, and other people might do better on a raw food diet, limiting fats but it never works for me. I am not a doctor, so everything I have said is just for education purposes and I am not trying to treat or diagnose anyone. Sorry my grammar and smelling sucks.
Catherine Here it's not me - I"m the care partner. Food is unrelated to the problem and he's done a lot of different food programs to no avail. There is no real evidence that anything has worked with the exception of getting a wheelchair because that allows him to be out in the world without a constant feeling of nearly passing out.
I've been living with CFS since 1988. I got it just after getting the flu twice within a couple of months of each other. I was 32 and am now 59. Watching this video, makes me that we are more of a family of survivors than victims who suffer alone in the world. We are kind of a special group of people that knows how it is too suffer from this disease. I've learned much about surrendering when facing the unacceptable and am still learning. This disease has been a learning experience as well as making life very challenging.
How are now with 67 ?
Are you still there?
I got CFS after Flu Vax too in 1988. Let me know how you're doing.
I went for a short walk today and had to return shortly afterwards because my legs were feeling slightly uncoordinated and a bit shaky, plus I am experiencing dizziness and some brain fog. Other than that I'm doing okay thanks for asking.
I'm glad that this disease is getting more recognition. It is my prayer that help is on the horizon. I'm 58 and I've suffered with this illness since having mono in 1982. 34 years of suffering takes a lot out of a person. Hang in there!!
Barbara Monfrini I had mono too, now I have ME/CFS ever since I had Guillian-Bare Syndrome and Strep throat. It sucks but I keep pushing myself and regulating my energy. Hang in there hun!!!🤗❤
I had glandular fever first too and was diagnosed in 1997. I am alot better now than i was after years of physical and nutritional therapy. I dont know why some people decline and some improve somewhat. I think we will know one day.
This illness is beatable in some cases. I've had CFS since I was 16. I'm 28 now. I have a lot more energy now than when it all started. Stay strong everyone, we can beat this!
+Andrew JRT - if you feel you're recovering please post your story here - www.cortjohnson.org/forums/recovery-stories/
+Andrew JRT I got it when I was 13 and I am 29 now. It's getting worse and worse day by day. However, I have toughen up myself. Good know you are kicking its arse.
35% food grade hydrogen Peroxide Works! Please look it up! It send oxygen directly to the cells and caused a those that are plagued with fatigue to renew their strength :-)
+Cletus Humperdinck yikes. h2o2 can make things much worse for those with CFS
mmedeuxchevaux what is CFS? i definitely don't have CFS cause i took H202 and i feel great and better than i ever felt. it cleansed my body and i can definitely feel it. H202 is basically just H20 EXCEPT IT HAS AN EXTRA OXYGEN MOLECULE. thats why its called H202. the extra oxygen rejuvenates cells. your body already needs oxygen so how the hell is extra oxygen to your cells bad for people who have CFS? you must be out of your mind
So sad so REAL...i have lupus, fibromyalgia & CFS, I was 1st diagnosed with EBV & within a year I felt worse, that was nearly 7 years ago. CFS IS REAL, PLEASE DON'T JUDGE CRUELTY Cause it can happen to you &/or your loved ones. May God Bless Us All❤
Priscilla Landers 💜
Exactly what I have....it's so terrible
I suffer from chronic fatigue syndrome since one year after covid vaccine… I can’t do anything today, I spend all time resting, all my dreams are gone … it’s a really hard and horrible disease… you can’t do anything anymore … prayers please 🙏🏻
Thank you for this video. For the first time I have watched something that describes my life now. It absolutely feels like I'm living in a box and I am watching other people live their life.
it's a thorn in the flesh,seeing many people suffering from it kinda gives me a glimpse of hope.
I have my husband nobody else, all friends gone, house/bed bound God bless your family I really hope he gets better and can live a full life again........ I wish this for us all love, health and light to all who are inflicted.
Ty
This made me cry so much. I feel like I am losing my job my family my friends anymore. I can't go out as freely as I used to. I just wanna lie in my bed and die
How much faith can I have with my current Doctor who claims ME is purely imaginary? None is the answer.
Same. I a don't know what to do.
It seems like it somatic, somatic sensations from the mind can make you feel terrible physical symptoms
This is happening to me the last twenty-one years. Lost my career, relationships lost or diminished. I’m so, so tired and in so much pain. It’s so disheartening.
I really hope you are feeling better. I was diagnosed with fibromyalgia and recently I've noticed more fatigue and joint pain. Last year I had low vitamin D levels and noticed my energy improve and joint pain went away when I went several months on vitamin D3. I was indoor this past winter and I'm getting back on vitamin D3. Ask your doctor to check your vitamin D levels, if they are low, supplementing will improve or get rid of many symptoms. Best of health to you!
I'm watching the Chronic Faitgue Syndrome episode of The Golden Girls and was glad to find this video. For those suffering with this disease I am really sorry. I am hoping and praying doctors and scientists are able to pinpoint the cause of this or the viral location and mitigate or eradicate it. I wish you all peace, health, and happiness!
First time watching this.. I'm nearly 60... I had severe CFS for 25 years...started with glandular fever... I was a single parent of 5 children...every day was like trying to recover from a heavy flu... I did the minimum duties..and Loved My kids so much... I became My own physician....and tried so many things... I still don't know what fixed me...but I've been totally well now for many years.... I always believed there'd be an end to this drawn out saga..and it did end thank God...please hang in there..Rob..
I also Had Cfs since 2012 and i also get better ,but i think for me it was fermented foods Like Kefir Nato kimchi Probiotics ,i watch Videos about it Here in TH-cam acidentally ( how your gut health afect your Health , mental and physically),i know that 2,3 Weeks afther i start changing my food i get better ,and from then i Just get better everyday.
Can I ask what you all tried?
i am so grateful for videos like this. i first became seriously ill in 1990. just now realizing how little awareness has changed since that time, even though now we have the internet and youtube, etc. online forums are great for patients with invisible illnesses, but it is not enough. it's very difficult to push for awareness and medical research when you are this ill. we need advocates and we need journalists, the news media, to share this struggle. thank you.
Thank you for making this documentary. It does such a good job of conveying what it's like to be so debilitated.
I am in bed as I type this feeling like I'm dying. I'm beyond exhausted. I can't live like this anymore.
i feel you :( and then you have to watch all the healthy people enjoy their lives while we can barley leave the house.
hmu if u ever wanna talk
I relate to that. 💕🌸
How are you now? Any better?
Sweethy,l know l came here late but you can do it, l too continue to suffer
I've had this for 14 years after the Epstein-Barr virus contracted at the age of 42. I was an overachiever and stressed out about everything. I used to be able to take care of myself and drive but now I'm only able to be bedridden. I feel so very sick. If it weren't for my boyfriend of 10 years I would be in a convalescent Hospital and those are extremely dangerous places to be for many reasons.
May God help us all🙏🙏🙏🙏🙏
Thank you SO much for your coverage of this story! So many of these sick people, like myself, are rarely seen or heard from in the public eye and by the masses b/c they are too sick and physically exhausted to do so. I can connect with different aspects of each person's story as I've had some of all of their experiences, the severity has varied. For almost 2 years I was house and bed bound besides Dr appt and sometimes an evening cruise around town my dad would take me on for scenery (when cooler out and not bright and busy). Then I had a semi-recovery for 5 yrs before relapse. My heart and prayers go out to the Davis/Dafoe family and the other 2 individuals as well!
***** I agree! Shared on FB, as did my mom. I am going to share this and the Lipkin/Hornig vid (I just saw it was made into a TH-cam vid from webcast) w/ news organizations. This needs to get out there, as does the #ChilliMEChallenge so it hopefully catches on!
@@janetatum8966 :
@@janetatum8966 :
[2:35] This is EXACTLY what it feels like! I have actually said that to people before, although my exact wording was, "I feel like somebody poured quick dry cement into my veins." It's an incredible feeling to hear somebody say exactly what you are feeling; to know that somebody understands you. Because almost nobody does. Thanks to whoever gathered these stories and posted this video.
Yes! I used to say someone poured bags of ice into my blood . So glad to see I'm not alone
My wife was diagnosed with Fibromyalgia, then my daughter could only push herself to go to school from 8am till noon. We picked her up mid-day for her entire 4th grade year. She looked perfectly healthy but have no energy to go to the park or ride her bike, just sleep and being tired when a wake.
She's in 6th grade now. Going full day at school. She still feel tired and fatigue but as bad as in 4th grade. Watching your video, I hope this is not my future taking care of my daughter.
How is she now!?
"Feels like someone took out all my blood and replaced it with cement." Reminiscent of MS / Lyme fatigue, but it's definitely far more severe and debilitating :( We must have hope for a cure. Medicine has evolved so much in the past 20 years, it can only get better from here.
+Lena Reznikoff Thanks for giving us hope. That last thing u said there helped me.
Has it gotten better yet?! I sure hope so🙏
Thank you for sharing. This is such a devastating illness, especially for those with this severity of ME. I really feel for those suffering at this level, and also for the families who give so much.
I just really have so much respect for this family. They have done more for me cfs awareness & getting this out as a real illness. When Ron said they don't have friends either it really hit me how the family struggles as well. Ron thank God is doing research. I'm 43 & have gotten to moderately/severe very quickly. I don't have a Dr. I have been turned away from the few I did try to see when I still could. What do I do now? Its pretty much over for me & there really is no lifeline.
I had a bad virus my junior year of HS, 1980. My senior year I nearly didn't graduate for so many days I skipped (to sleep, parents didn't believe me that I was so tired). I gimped along knowing everyone else my age had more stamina. I had strange pains, twitches, depression, intolerance of light, sound and fabric against skin, severe brain fog, irritable, stomach issues, dizzyness etc etc etc, I took an alarm clock to work with me so I could sleep on lunch hr in car. By 2000 I couldn't work, spent 18 hrs sleeping and another 3 or 4 hrs just laying in bed, I have literally crawled to the bathroom many times, holding my bladder til I couldn't hold it anymore. That was my life every day until a last ditch effort I tried BHRT 6 yrs ago, that helped raise the base for me some, probably 30% better on average (insurance doesnt pay for it and it costs me about 2 grand a year). I sleep 10-12 hrs a night, I sit in a chair for 2 hrs until I push myself to get something done, then I sit another few hours, I take frequent naps, I take epsom bath every night to help the pain, I have muscle relaxers and percocet for the really bad days. I wasn't diagnosed until I was 49. I have been called, lazy and crazy more than I can count. I am now 55 yrs old. I have learned to "bank" energy, if I need to do something or go somewhere, I do nothing for several days before, if I over do it, I pay several days after. I have tried numerous supplements and changed my diet (which is super hard when you have no energy to cook, many times after I cooked, I was too exhausted to eat it). I would have ended my life long ago accept that my husband finally came to believe me, but even for him, it took seeing the difference after I had the BHRT to KNOW I wasnt just lazy. I keep my house reasonably clean by cleaning one room a day, sitting as much as I can while cleaning, on days I don't clean, I do laundry sitting down. That's it, that's my life AFTER "getting better". Two beers will keep me in bed for 4 days so I no longer drink at all, climbing more than 5 stairs, out of the question. Today is a bad day and I counted up how many years things have been pretty bad for me, at least 30 years, almost 40 if you count from onset. On days like today, I don't wanna do it anymore (keep living), so I look up ME/CFS videos and try to find hope or people worse than me to remind me I am better than I was. It has to have something to do with the energy production, whether that means signaling from the brain or the mitochondria being broken, I don't know, but this kind of tired is not the normal kind of tired after a long work week. This is flu-like tired, bone deep, no gas, empty tank. Many, many times I have been walking from here to there and wondering "how am I still not just collapsing?" The next person to say I just need to pull myself up, or push through, or start an exercise program, I will take my last ounce of energy (what am I saying, I only have the one ounce!) and attempt to punch them. I am open to any and all suggestions that have actually helped someone else with this THIEF of a disease. She's right, it steels everything. My son can't stand me because he thinks Im just faking it (he doesn't remember when I wasn't quite so bad). What is wrong with people that they can't see that nobody would WANT to live like this. But hey, I LOOK healthy so there ya go. My heart goes out to all of you that have this or take care of someone who does. My husbands love and kindness is the only reason I am here.
Rob...I know EXACTLY how you feel and what you are going through. I have ME/CFS as well, plus many more health problems. Did you ever have Mononucleosis back in the 80's? Did you ever have some sort of virus like strep throat, or get a flu shot? These things seem to trigger ME/CFS. I had Mono in the 80's, then later I got strep throat, and right after the strep throat I came down with a rare auto immune disease called Guillian-Barre Syndrome. I was paralyzed and in severe pain for about a month at Johns Hopkins. What I didnt realize at the time was I had also contracted ME/CFS. While regaining my ability to walk, talk, eat and so forth, I never FULLY recovered, due to the ME/CFS. I got better, but I never felt completely better. I was told once again I was fine. I knew I wasnt. (I also had gone to 3 different drs while recovering from the strep throat, but still feeling really crappy. All 3 told me I was just still recovering from the strep throat. When finally I could not walk, they believed me.) Anyway, hang in there hun. If you need anyone to talk to or just let some frustration out to someone who has been there, done ..well, doing that...just let me know.😊
Why can nobody find a cure for this bloody illness
Heartbreaking story. I've battled since 1999 and though not nearly as bad as this young man my life has changed drastically. Along the way I've become so isolated I barely have an existence beyond my door. I can certainly relate to how you pretty much watch life just pass you by. The vast disparities. between what AIDS receives and the pittance that CFS is allotted is horrible and needs to be changed.
AIDS is lethal and is transmittable, that's why it receives more funding
How sad experience you have been through! How are you doing now?
Real disease that requires GOVERNMENT FUNDING. We are with you. Best intentions.
Amen
this is very moving. its time that the nih stopped behaving irresponsibly, and started serious funding of medical research into ME/CFS, but this is unlikely.
I understand what their going through... I have lupus, fibromyalgia & chronic pain and chronic fatigue, its horrible...im maybe 90% bedridden everyday, every week, every month & every year..its been 8 long years, its overwhelming & devastating cause there's no cure for lupus, fibro & chronic fatigue.
Thi9s makes me feel so much more validated. I'm nowhere near as bad as these people but I am so tired that I have have to go to toilet for mini breaks to have a few minutes sleep. I just can't help it.
Damn...my dad is a ceo of a children’s hospital. He ignored my spinal deformity and told me to stand up straight. Then he disowned me and I got on ssd. I’m disabled and he has a family in a mansion. And allot of other houses. I can’t get proper pain treatment.
What a loving family. That is the very definition of true love standing by your loved one, and always being there for them no matter what. This is so sad their son and brother suffered so long hopefully he has either gotten much better, and is able to function again.
Great job. I think it is important the word gets spread also, which is why I started my own youtube channel about how to overcome chronic fatigue. Keep up the good work!
Im so sorry this is happening to you all :/
OMG. And just think how it would be if their doctors told them it was ALL IN THIER HEADS!!!! Doctors, you have to get on board with this!!!
I have CFS, is terrible and I live in a situation of extreme poverty and I am not able to advance in my life, like something weights inside me that makes everything tiring and strong noises, social interaction, everything is just too tiring to perceive, I have to mask it because nobody cares about me. If I need to put mental or physical effort into something automatically want to sleep deeply and lose me from this reality, I need my capacity to learn effectively and stop worrying about.
The latest research seems to suggest that enteroviruses in the gut are responsible. Will this change things I wonder.
All in all, conventional medicine is proving itself to be worthless when it comes to CFS.
Conveying fatigue to another person, when you look normal, is very difficult (except for the days when you look exhausted). If it was possible to click your fingers and swap bodies instantly, then that would make all the difference.
The mental fog is the worst. The aches, the tiredness, the loss of a social life, the aversion to sunlight etc.. all elements that create a whole that feels like life is one exhausting walk through an opposite flowing tide of water.
This video struck so many nerves.
Amazing post.
i love what you said about swaping bodies, i think about that all the time. i wish other ppl could actually feel what its like to be in my body maybe then i wouldnt feel so crazy. i dont think the average person would last 5 minutes in the shoes of someone with cfs
@@michaelgscott4289 So true!!!
Thank for for the recent feature articles on ME/CFS a relatively unrecognised and under-resourced devastating disease. This video is an excellent tool for raising awareness of the severity of the condition.
The fact that early symptoms are much similar to depression actually scare me. Because i have seen people getting called like "you don't have injury, you are just sad all the time and for that! You need a wheelchair??!" Like have a chill, you never know what the person is going through. It's better to keep quite if you can't be kind...
PS. I am just stating my experience with people suffering from CFS
The "you don't need a wheelchair, just push yourself thing" so annoying
I was taken to the doctor for weakness and fatigue when I was 8 years old. Most summers are spent on the couch or in bed. I get a little better when weather cools. However, I have been helped some by Provigil. I don't take it every day because I know how tricky this syndrome is... once a med works, the CFS will outsmart it. Now when I have company or have things to do, I will take the med and I notice my cognitive function is so much better. I feel sorry for the people in this video. Except for the very sick young man... I have been this way all of my life. And what makes it worse, people think there is nothing really wrong with you.
First I heard of another person taking provigil for the CFS /ME I agree that it works but not always and definitely more for the brain fog symptoms. It helps some for symptoms but by no means a cure. These days I am more homebound. I am a single mom. I push till I burn out with the provigil because my daughter. This however is taking it's toll. I only have so much push and it is not enough for my daughter but too much for my body. The burn out has caught up and won't allow the push. I thank God for showing me ways. Some days are some days but if I didn't hold on to God's unchanging hand I still say it would be worse.
Because it is sooo expensive I only took on days I had to do things very taxing... it did work. You can tell though it wears off. The good news is, I seem to be having more good days. If I were you Heidi, I would really have my thyroid tested over and over again. When I was young, it came up overactive.... more than once... My symptoms are so on point for under active thyroid (hair falling out, throat swelling, getting choked, body aches) yet it always comes up normal. On top of that I can't afford health insurance, since I am sick I can't work, I live on alimony. They should be testing your regularly. Good luck.
Old comment I know but for anyone reading now: I tried Provigil… It just made me jittery on top of tired. That was about 15 years ago. I’m in my 40’s now and desperate so I might try it again…
i also have cfs (i'm only 17) i've had it for like almost 5 years now but they only discovered it less then a year ago. i ddid go to school but i was sick alot, i could never be as active as others with p.e. and no one really understood they always told me i should hve gone to bed early or they thought i was just asking for attention.gladly i did graduate high school but after that i didn't have any energy left, gladly i have a year free from school and start college in september again. i can't work but i have a little job as a dog walker so i get outside and still get some energy and excersise because what the therapist told me is not to go to sleep and get rest(because even if i got 12 hours of sleep i'd still feel exhausted) but too excersise and try to get a better condition, i've been doing that for like a year now and i must admit i'm doing much better then i did when they found out what i had and they told me i could get completely better, i mean i know i won't get completely better (maybe someday though) but everything is better then what i felt before:)
I was diagnosed with MS at 35 and then fibromyalgia 5 years later. I try never to schedule 2 days in a row or two things in a day. I spend a lot of mental energy worrying about my schedule. If I have to get up at a certain time, I have such anxiety for days before.
It is a very isolating illness. If you know someone with CFS , help them in whatever way you can. Show your compassion, be there long term. Because chances are they don’t have many people who do this. And there are probably people in their lives that are dismissive of them. Even close family, which means they need even more love and support than you may realise! 🙏🌸🌍
I thought I was bad off because I take Jet Alert to keep going, but geez....these people are so much worse off than I am. I think my depression drags me down to exhaustion all the time.
I've suffered from CFS/brain fog for about eight years. I've been to offer twenty doctors and have tried everything you can possibly imagine including hypnosis lol. Currently, I have experimented with upper cervical NUCCA treatment because I had one hip lower than the other and an imbalance in my shoulder. If you look up the symptoms, you will notice that CFS/brain fog is one of them. It's definitely worth the time to try this. I've been doing it for about a month and it seems to have helped. I hope you get the help you need!
Any update?
I strongly believe these chronic problems have roots in the gut. And things like fasting and very specific diets over long time is the answer. This isn’t easy but I think based on my current experience this is the way. I really appreciate when that man said toward the end the really sick ones aren’t coming you need to go to them. I have told this to my annual GP that you don’t see me because I don’t have energy to come
What do the people do or supposed to do who have no family to care for them this way? :-(
+Dawn Renae
Nothing.
rot away uncared for
Hope like hell you don't go down this far.
If mine gets that bad, I am dead.
I'm living that scenario sort of, Mistress Kitty. My parents care deeply and help me, but the help my father can give is limited by the fact that my mother is as bad off as me with Rheumatoid Arthritis & Lupus. I live in filth. I just can't wash clothes or vacuum. I crave a home cooked meal, but I don't have the energy to wash and chop vegetables or to do dishes afterwards. I haven't even made bottled spaghetti sauce spaghetti in 6 months, LOL. Talking or applying elbow grease while standing ruin me, as do showering and grooming. My sisters work full time and have kids, so they don't even have time to talk on the phone much. I'm not bed bound, and I can drive in town, but using supplemental oxygen, for example, is almost beyond me b/c I can't lug around the bottles. Hope springs eternal. I'm encouraged that stem cells are potentially a game changer, and the Australians claim they've cracked the riddle of the root cause of this disease - it's a calcium ion channel dysfunction, according to their theory. They say they're working day and night for a cure.
I heard of a lady of 33 in an aged care home because she was so ill. Without a carer I wonder how far away something like that might be for me?
July 16 2021 is when my life completely changed. I was supposed to compete in a Brazilian jiu-jitsu tournament the next day but woke up with some nausea and felt very fatigued. I had no idea what was wrong with me. I thought I just had a stomach bug. After a week I did recover but something wasn’t right. I felt off all the time. My eyes became sensitive to sunlight and as I continued to train in bjj I felt more and more fatigued. I began to lose energy to workout and I lost my muscle and became thinner. I couldn’t think properly and my head felt cloudy all the time as if I was hungover. This is known as brain fog and was my worst debilitating and frustrating symptom. I had to quit bjj in october 5th 2021 because I physically couldn’t do it anymore. I barely passed my classes last fall because my memory went to shit. I Started doing tons of research on what's wrong with me. I went to several doctors appointments and saw a neurologist as well as had several blood work tests done on me. My father, who is a very intelligent ER physician, did not know what was wrong with me. I found after hours of intensive research that I had chronic fatigue syndrome(aka post viral syndrome). I was devastated. There was no medical cure for cfs and my life was just getting worse. I was going downhill fast and I knew that if I didn’t fix my health, then I would be bed bound. At one point I was suicidal. But I knew that would be selfish as I have a mother, father and sister who love me very much and would be devastated if I killed myself.
That's when I decided that no matter what I couldn’t give up and I wasn’t going to live like this either. I accepted the fact that no doctor was going to fix me and the only person that was going to save me was myself. That was my first I did hours and hours of research on how to improve my health. I cut out all artificial sugars from my diet. I mainly stuck to meat, veggies, and fruit. I read books such as Joe Dispenza “Breaking the Habit of Being Yourself” and watched his videos. Joe Dipenza was paralyzed from the waist down and learned the ability to walk again through meditation. I thought, if this man can recover from a spinal cord injury and use his mind to walk again, I could do the same to heal my body. I did hours of meditation as well as did a brain retraining program called the gupta program. I prayed to God. I also took supplements such as coq10. I blocked any negative influence on my life. I also did no fap/semen retention. As I got better I continued to increase my physical intensity when it came to working out. I started off as small as 50 pushups doing multiple physical exercises. My life began looking up again. I started being able to do more things. I gradually gained my memory back. I went back to school. I documented my progress on how I was doing each month.
Today I am fully recovered. I am back to what I was before I got sick. I train multiple times a week in bjj. I am in great shape. I am finishing my last year of college. I just received my blue belt in bjj. To anyone out there who thinks it is impossible to recover from this, don’t give up. Your mind and heart are powerful tools. Use them. Don’t waste your life going to doctors and waiting for the medical system to find you a cure. I was fortunate enough to realize after the first three months of being ill that doctors weren’t going to save me. That realization is why I am here today writing this. If you put your mind to it, you can accomplish anything.
Some sources/videos I used to recover are cfs recovery, health recovery, harry boby long covid recovery, and joe dispenza-all found on youtube. I also prayed to god asking him for advice and I also did the gupta brain retraining program.
I was recently diagnosed with cfs but have been suffering with it for years. After consulting to a number of doctors, one finally gave me an annswer which I believe is tru because it is definitely what I am experiencing. Tiredness, headaches, brain fog and more. It's hard to keep going on keep working with all these symptomps. May God take me soon. I'm tired fighting the disease.
I suspect I have cfs but not as severe. I became physically weak just watching this.
I am in bad shape can barely wipe my own butt been suffering for a long time and nobody understands how hard it is to try to keep going with this nightmare everyday is so hard to do anything at all! I have child support trying to lock me up and put me in prison because they think I'm lazy and don't want to work! I can't even take care of myself let alone hold a job! Just wish everyone knew that I'm not intentionally doing this on purpose I can't help what has happened to me it was out of my control! Nobody is ever going to fully understand unless it happens to them! I don't know what to do and don't know how much longer I can put up with this pain and suffering and the dizziness is overwhelming it's just way too much for anyone to handle! I need help so bad but nobody wants to help I've lost everyone and everything! I live with my dad and he mocks and makes fun of me 24/7 and dedicates all his time making me look bad and paints the wrong picture of me that I'm lazy and don't want to work and it's all wrong everything is wrong!
I'm so sorry that you are in this situation, my friend. I have lived with this illness for many years and I know how it is. Healthy people don't understand.
The truth is that you are not lazy and it is not your fault. You have a sickness that prevents you from living the way you would.
Learn to pace yourself and do the best you can. Do not accept shame or blame, and do not give up.
Hundreds of ME/CFS patients have tested positively for mycotoxins, not only in their bodies but their homes (ERMI testing). Those who have had a chance to escape their home environment and go to an area with clean air have improved greatly. A few resources to look into are paradigmchange.me, the Facebook group "Mold Avoiders" or google "Erik Johnson, mold". If there's any way to get this young man to another environment, he might be helped. Best to you and God bless.
Gail Williamson They've already looked into the possible mold connection according to a Facebook post from a year ago or so. Personally I would not recommend the Paradigm Change website or 'extreme' avoidance as while it can help people temporarily feel markedly better, these extreme avoiders often, almost always develop severe MCS and sometimes as a result end up with no place to live. Erik Johnson admitted to me on youtube that even after 30 years, he still has to avoid mold, while others, who did moderate avoidance, have recovered enough so they can tolerate 'normal' buildings without experiencing a severe setback. Some 'extreme' avoiders have been able to recover though, that's for sure. And Susan Kreutzer, if she got ill during a trip to Tahoe, should seriously consider treatment for mold.
Someone commented on the Palo Alto article that if Whitney's parents could locate doctors or experts from the places Whitney traveled to (as he was getting sick) then they might be able to help eradicate possible hidden parasites that may be affecting his health.
Horrible horrible disease. Prayers to all affected.
May God Bless this man and his family....I will keep you in my daily prayers.
Hi there! I just saw this video as I am in my 10th month of battling CFS. However, my story is a little different and I can't help but wonder if it could be a factor behind other cases. You see, I suffered from mold poisoning. I lived in a downstairs apartment and the upstairs neighbor had a pipe break which flooded my home. A few days layer, my fiance was severely injured at work which lewd me to take care of him 24/7 (needless to say, forgot about any damage that was done). A few months later I was so fatigued and weak that it scared me. I went to the doctor and she told me I had just had Epstein Barr. Mind you, I'm generally a healthy person so it was odd to me to have this virus. Then sinus infections became chromic...I had never had one of those before either. Migraines...never had headaches really. Light sensitivity, sound sensitivity, anxiety, rash, tremors, dizziness, vision problems, weight loss, brain fog....and so many more symptoms would take over my life those next months. When the drs couldn't figure out what was wrong with me, and I noticed that my pet parrot began having bloody noses, something made me think we were both being effected by something...I thought mold. I bought an at-home test and sure enough it was positive. Long story short (bc I'm getting exhausted just typing lol) I moved and got rid of all my belongings. Here I am, over 2 months later and my fatigue and weakness is so severe that I am in bed between 3pm-5pm for the rest of the night just about every day. I recently have been experiencing pain now too. Through research, I can't help but believe this was all caused by the mold from the water damage. I'm 37 and live life in bed now.
Heather Sconza 💟 I often wonder if mold could be another cause. The list just keeps getting longer.💟
I don’t think I ever got as sick as Whitney but I did spend an entire year bedridden not sleeping, just in a ball of pain, nausea, vertigo, and anxiety that was crippling. It was absolute hell!
But I’ve been very hopeful about these neural retraining programs out there like DNRS or “primal trust” or the Gupta the program. I suggest anyone with a similar condition or any chronic illness look into some of these programs. Many of these illnesses come down to a Lymbic system that has become overreactive and that can be fixed ❤
Also the isolation makes you more and more sensitive to things like at one point I thought I was having auditory hallucinations hearing a didgeridoo when actually it was the neighbor’s AC unit very very slightly vibrating my window pane.
Nobody else could hear it until my dad finally listened very very closely and could slightly hear what I was hearing all the time very loudly.
I strongly urge any loved ones of people with this condition look into brain retraining. It saved my best friend’s life after being horribly sick from toxic mold and unable to swallow for an entire year.
I so scared I’m going to be diagnosed with this. So many doctors, so much blood work. But still no diagnosis. My blood work is off, my imaging often comes back with issues but nobody can tell me what’s wrong. I’m in pain and the exhaustion and pains is unbearable at times. I’m scared bc I don’t want to be judged and looked at like it’s all in my mind when it’s not.
Currently I am on disability because of chronic sinus infections. I have all the symptoms of CFS, and my doctor said that if the catscan of my sinuses were normal that was the next route to find out what is wrong with me. My sinus infections have been going on for years, but now I see little improvement with antibiotics. I have had an infection for about 8 months. The cat scan came back normal, so I am looking for information on cfs
This made me cry. The only thing that gives me a little hope is my doctor sees this as a possibility before I did, and I am not going to have to go through being thought of as crazy to get help
Juliaoceania read dr. joseph brewer's papers regarding mold and cfs on pubmed. I believe there are two. He finds many patients with mold reactions have mold infections established in sinuses. antibiotics won't get them.
+Juliaoceania Have you tried a netie pot to clean out your sinus infection? I found that it works faster and better than ABX.
I’ve had chronic fatigue for 3 years now and it’s so frustrating. I’m in year 9 now and I feel like 3 years of my life has been taken away from me and it’s been so hard in every aspect of life. But I feel quite lucky compared to the guy in this video I have months at a time in bed but I have at months where i feel like I’m back to normal. But this video was so relatable.
It's difficult. I only got a few good hours to do anything. If I pace myself I can last a little longer. I start to cramp and hurt everywhere. I'm not letting it beat me. I did get to a point were I was not able to move around. But I get mad to push myself. You gotta find a focus and a routine. I have meltdowns when something happens to disrupt my day. Trusting God helps.
I have had this for 17 years. I spent all my savings looking for a cure.
I've had it for 13 yrs,l can tell you it's awful and when you live in an underdeveloped country without access to affordable medical care and no one around you gets it because it's invisible to them and just assume your lazy and worthless, you do get suicidal.
For me, a "nutritional balancing program" has turned my life around. It takes a few years, bit if I could, I'd put you all on it. Basically, stress patterns in your body are analyzed via hair mineral analysis (versus looking at absolute values of the results, as most who use hair tests do). Youre then given 5-6 vitamin and mineral supplements ($100-$150/month) based on your results and given a specific diet that's 80% veggie based (9-10 cups cooked veggies a day). The diet is totally unique because it combines paleo with chinese medicine principles. You also detox with a near infrared sauna. You basically remove all major stressors from your body and load up on nutrients from the veggies and supplements. Your body then has the tools it needs to repair and dump all the heavy metals and such on its own--no chelation. People I know have had their whole body itch or break out in a rash, blisters pop up out of nowhere, toe nails puss up, etc The detox process is immense and actually terrifying at times. 1.5 years later though, I am in awe of the program. The craziest part is that it's seems so simple. You only take a multivitamin tailored to your metabolism, digestive enzyme, kelp, immune support, calcium/magnesium, and if needed, glandulars. For those who don't like fish, vit d and omega 3s are added. That's it. I highly recommend you to look into it and at least try the "free program" if you're skeptical.
Svetlana Orlova can you share some info about this program and whereabouts any link or phone number 0lace address
Dr. Lawrence Wilson has a nutritional balancing practice and website: drlwilson.com/
Wow I have me/CFS and sadly I am unable to read all that's written however I so wish I could stand to cook digest vitamins am glad this worked for you for those of us who can't walk stand it's a challenge that overwhelms me however if I could great advice 10 years and honestly can't believe I am alive but dance through living life to fullest when well love to all
I developed this condition to where even 10 hours or more of sleep is not good enough. There were times that I would stay in bed for 24 hours and sleep cause the fatigue was so horrible and it was due to my binge drinking. I decided to cut back to no more than 1 drink and my fatigue level has decreased and I go to the gym everyday. However lately it's been acting up again. Just wish that it would go away. I also was shocked to know that Cher and Flea from The Red Hot Chili Peppers have this condition. I saw Flea once and he seemed so full of energy to be able to preform.
I wasn't hit as hard as many of you but it still felt like my world collapsed around me.i first saw symptoms In October of my second year of secondary school , less than 48 hours after my second hpv shot.over the next three years my grades dropped.i couldn't concentrate due to headaches and didn't have the energy to do homework. In march of my fourth year I got a formal diagnosis and my uncooperative school offered bare minimum support.i dropped over half my classes (I should have been offered tutoring but I had been threatened to be kicked out of classes and my year head called the education welfare officer to 'investigate my low attendance and rule out truancy ' .i left the school in November of my fifth year and have been homeschooled since.i go out once or twice a month with friends because after I do I sleep for most of the next two days
A cruel illness.
I have CFS and horrible fibromyalgia. I believe i got it after chemo. I also have sight, sound, and smell sensitivity.
I used to be a flight attendant and loved my job.
I would do anything to get better. I have tried so many things.
But I do have a lovely cat who keeps me company.
Yes, me too... no help & doctors cant prove it so cant get caregiver help covered so far... have been tken to E.R.multiple times in last year when almost collapsed. Alone & no help... what to do..?
I have been sick with CFS for 30 yrs now,friends have long gone and my life has literally been taken away.Some yrs ago I did a blood test and resulted positive for Epstan-Barr, the virus stays in the body (I got it from glandular fever) and 2% go on to develop either CFS or an autoimmune disease.
Quite informative..............Thank You....................
Bartonella. Finally came up positive. Late stage lyme too. Same symptoms. Maybe a vector borne illness in this case as well. Hoping for a cure for all of us.
If you guys look on Gillian Berry’s channel, she interviewed a woman who had this ot something similar. She was basically on her deathbed. Now she is doing 5ks after a juice fast.
Great docu!!
ME/CFS and fibromyalgia are part of CSS (central sensitivity syndrome).
I’ve had CFS and/or FM for about 10 years. I’m moderate but am single man and still work and must work. I have a desk job and that is probably the only work I could do. But I don’t have the sensory sensitivity like others do. Maybe that is in more severe cases.
I just finished praying regarding my fatigue
The amount of ignorance surrounding this Syndrome is terrible
I've heard It all
your lazy your this your that
my prior life I was able to graduate top of my class
traveled all over the country and World
had a huge list of friends
had a huge list of working experience
I can play all of the basic instruments (piano ,bass, guitar, drums)
and yet I'm here on a Friday night not knowing why I am so weak
with a crap load of medical bills on my desk
why why why why why
just ordered an enzyme supplement from NOW products
this is real people
You can read more about some of the ground-breaking mecfs research at Stanford discussed by Ron Davis in the video, here www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/
Donate here www.openmedicinefoundation.org/donate-today-to-the-severely-ill-big-data-study/
I had CFS and have found that artichoke tincture (in alcoholic solution) have given me the energy I lacked. CFS starts with a bad diet over the years, a diet lacking raw food. Tinctures in alcohol have raw vegetables in a way you digest them. Valerian tincture also works for this.
+Giro Coco : I'm glad this worked/helped you!! CFS may have started that way for you but it certainly does not apply as a general rule. People who've eaten mainly Organic food, vegetarians etc have become ill with CFS. Best wishes.
The paranoid part of me wonder if some of these poor souls are being poisoned by someone close to them :( I really hope thats not what it is but Ive seen horrible stories like that on forensics files.
I have had CFS for 17 years. 2 years ago I was diagnosed with congestive heart failure. I read where the top three causes of death in CFS are CHF, cancer, and suicide. Can't help but wonder if my heart problems were caused by CFS as I have no risk factors for CHF.
I've had this for 33 yrs I lost everything my family sees me as a lazy ass..I had a brain scan but the spinal cord scan shows a lesion could be MS PLEASE CHECK FOR MS after my next scan I'll know if its MS or not I tried all diets my energy is 7 ON 20 nothing makes it go up I'm not bipolar lots of docs will say bipolar antidepressants do not work for me I tried them ALL! exercise can bring down convulsions for me as my body shuts down due to extreme exhaustion
Only if you suffer cfs then u can explain..I came to know the world very noisy. There should be no noise rooms for cfs patients
I am a 57 year old man.
24 years ago, I had a careless sexual encounter and shortly afterward I became very sick, and this illness lasted 3 months (acute) and then another 3 months (milder). I got tested for all of the STDs, including HIV (after 6 months, and again after 5 and 10 years--even though I had had no further STD possible exposure--because I would keep getting sick and I did not trust the HIV test). All negative. I had recurrent episodes of feeling very ill and having severe fatigue and sore throat every year to two years, lasting from 2 weeks to over 2 months, and then I would get better again. But for the last 10 years, no recurrences until about 6 weeks ago, when I had chest pains (now gone), then sore throat, tinnitus, headaches (not severe but persistent), armpit lymph node swelling, severe fatigue, and worst of all a very "sick" feeling, like I am being poisoned almost.
My GP cannot figure it out, and I do not know whether it is CFS or something else. (I guess it is not HIV, because even if one does not trust the tests, I do not think a person could live for 24 years with HIV without any treatment and in generally good health.) I am hoping it goes away soon and I do not have another episode for another 10 years. One 2-or 3-month episode every 10 years would be okay by me.
Any ideas anyone?
The comment about " blood feeling like cement" rang so true. And its so beyond being
" Tired". its a fatigue you cant push through. I dont even try to explain it. I know I look lazy, but I just have no energy and chronic pain. Its a very poor quality of life.
mind over matter! technique over matter, i have this, and its as if i have some ghosts inside me tiring me out.
You become a walking zombie literally and people misunderstand and think your shutting them out, euthanasia will be a dream come true but l can't even get that in my country,he's so lucky to have the care of an accommodating family .l don't have the luxury of being cared for so l struggle to work and struggle to take care of all that l have to.Without energy you can barely do anything. Energy is everything.
I suddenly got this after Covid. I really hope it goes away because I really struggle to do much. And if it's permanent, I really don't know what I'll do.
You are not alone , Always pray I belive in miracles , God is with you
JUDY MIKOVITS attributes Chronic Fatigue to a RETROVIRUS, I personally found progressive relieve from low energy levels with high dose SELENIUM after discovering its role as a Full spectrum ANTIVIRAL, Hope it helps somebody.
All the best wishes.
Interesting how the way they describe it sounds exactly like an autistic shutdown (which I've experienced and feels like a temporary and unwillful catatonia) but to an extreme level.
Even though I too suffer from this illness, I nonetheless managed to be an extremely productive writer. It seems that, at least in my case, this illness is selective. Writing is one of the few things I can actually do without spending much energy.
I always thought I could probably handle a desk job pretty well, so I get this. Also what's weird is that I can walk OUTSIDE and not really get fatigued either. But someone asked me if I'd be interested in a housecleaning job and I just thought, there is NO WAY my body could have the energy for that! It's the physical energy expenditure that really gets me, even thinking about trying to get ready to go somewhere makes me tired! I honestly experience some kind of social anxiety beforehand because of thinking about all the energy required to get ready to go!
I was diagnose with CFS for years then found out I had Lyme. Lyme has been treated but I still have CFS although greatly improved than before treatment. CFS is horrible so I feel for anyone that has it
What are some medications for this? Does CFS have different degrees of severity?
CAC Brodley syrup contains Shankhpushpi (Convolvulus pluricaulis ), Dhania (Coriandrum sativum), Saunf (Foeniculum vulgare),Yashtimadhu (Glycyrrhiza glabra),etc. This syrup mainly acts as anti-depressant and reduces the stress level. It boosts power memory and increases the blood flow to the brain. Brodley syrup also acts as an anti-oxidant and increase the retention power & beneficial in chronic fatigue syndrome.
Maybe this will help maybe not. I few years ago I got sick. I thought it was the flu. And then after the flu I started noticing weird things. My eye and hand coordination were exactly in sync. Then I lost hearing in one ear. And then the next. I went deaf for about 2 months. And then the fatigue set in. It was as if I had become an old man. My joints started to hurt as well as my bones. Even though that sounds weird. And whats even weirder is that I never went to the doctors. I wasn't really worried. Don't know why. But I wasn't. I was just like meh. At one point I couldn't even close my hand as in making a fist. So for what ever reason I came to the conclusion that this was some type of autoimmune reaction I was having. And I went online and found out about diets that people claim had cured their cancer. So I thought why not. And basically its just eating green leafy vegetables and fruits. And so thats all I ate. For about 1.5 months. I also came to the conclusion that the food we eat is actually extremely bad for us. All of the msg, preservatives, etc. Don't ask me why thats just what I thought. And little by little I started getting better. To this day I rarely eat fast food. I'll only eat meat like once or twice a year. Everything I eat is pretty much made from scratch. I try and shoot for organic, and I still drink my green drink every few days. And I've never had an issue again. I don't know if this applies to you but if you're already at your wits end. Then I don't see why not.
THIS ILLNESS IS REAL. You lose everything ive been told i have Lupus and Fibromyalgia but i suffer from the terrible fatigue every single day and its getting worse... I hope for a cure.