I was at Berkeley and had to drop out when I was 25 because of this. It feels like end stage cancer but you never get to die. For people who want to denigrate us, I hope you get it.
Thank you for taking the time to do this interview. ME/CFS does not get the kind of coverage it needs and this clip was very powerful. I have lived with severe ME/CFS since I was 7 (now 26) and it is nice to see this disease so accurately represented in the media. I actually recognize the photos of this woman in the video from from messages on my blog a few years ago and I think I talked to her a while back when she first got sick and was helping her it something about ME/CFS. It could have been someone else that just looked a lot like her though with a similar story. What an amazing achievement to have created this documentary through all of the struggles of ME/CFS and how incredible that she even made it to this interview given that ME/CFS in severe cases is more similar to late stage AIDS or cancer than other illnesses, and my mind is blown and she is really incredible and inspiring.
i'm 46. until age 40 i led a very active, very healthy lifestyle. took very good care of myself, ate very well, exercised every day, was a hard worker, had a career, spent very little time on the couch, i was always on the move. at age 41, my life fell apart. suddenly i started feeling extreme exhaustion and fatigue. one day i woke up and just felt terrible and haven't felt better since. it's been a 7 year journey, i've lost everything in my life...my marriage, my career, my business, my home, most of my friends, so much time. went from doctor to doctor for years. tons of specialists. i was told i was depressed, had adhd, possibly ms, lymes, etc etc. spent years on various meds that only served to make me feel worse and worse. CFS/ME is a very real condition that affects so many of us. i understand the frustration many here feel. people don't understand and more so, don't often want to understand. i've been called lazy, stupid, pathetic. i'm none of those things. nothing in my life up to the point i got sick would ever demonstrate i was lazy or stupid. i have something wrong with my body. i do everything i can to move forward, my diet is extremely strict, i exercise as much as i can, and i research nearly non stop other things to help me. this disease, this condition is mostly hidden. many of us with this do not look unhealthy. i'm 6'3" 190 lbs, i look very healthy and in shape. many days i can't leave the couch. it is what it is. for those who think this is a made up condition, i hope you never have to face this. for those of you struggling with CFS/ME, i am with you. i support you and believe you, because i too am battling this every day of my life. i admire ms. brea and her husband for making this film and sharing their story, and bringing awareness and hopefully understanding of this condition.
crestifer j Wow Crestifer J, your story is just like mine. Surreal to be living like this, aptly described as having died & watching the years go by. I think it is strange how widespread this disease/syndrome is, yet not addressed, much less understood. Thank you and blessings.
amen I have this insidious illness as well, Prior to it, I was energetic, healthy, active, a go getter. Got mono and have never been same, No where near pre illness levels ever since. 15 yrs now. Swore Id be one of the 5 percent who recover,,,,,still tryying,,,trial and error to my limitations
One of the most shocking things is how people who knew you when healthier could suddenly think that you could be all of those negative characteristics. The lengths that people will go through to insulate themselves from the reality of the fragility of life is amazing to me. Like you, I lost everything... friends and my partner fled. And then, after fleeing, they chew you up and spit you out so that they shoulder no responsibility for fleeing.
I know I have this. 2 years were really bad. Now I’m much better. But for 2 years I had hundreds of tests that showed stuff but didn’t really show anything. I’m so glad I only had 2 bad years. It’s still bad I can’t work full time but I actually have a life, instead of working part time then too tired to eat dinner or even turn on the TV to watch it. I was like a zombie for over a year. It’s not just fatigue it’s pain, fogginess, muscle fatigue, I would walk one block and feel like I had biked 2 miles really fast. I was actually prescribed oxygen but then my test would be normal. Later on my oxygen would be low again. New worse headaches that would make me throw up. Feeling sick almost every day. I think it’s true that doctors just don’t know much about it because I’ve seen like eight different doctors and no one suggested this. It wasn’t until I watched chasing the cure and someone had it that I realized I have it. I’m sure my regular doctor will agree. He already diagnosed me with chronic fatigue. I also look healthy. No one would guess how bad my health is. I am praying it doesn’t come back like it did. But I still am tired every single day. There is never a day where I’m not exhausted no matter how little or how much sleep I get. Especially when I was at work and would do too much I would be tired for like three days after. Hope doctors research this more so we can get more answers.
I'm no expert but my son recovered fully from 2 years of ME/CFS and this is what I learned: It seems that one of the common features of ME/CFS is people who expend more energy than they have in their personal reserves. It seemed to me that it was about management. I was taught (I was lucky enough to be in the UK at a time when there were resources for a full ME/CFS medical team behind me) that if you can turn over twice in bed before you are exhausted do it once then do NOTHING at all for several days or weeks , if that's what it takes for you, and begin to slowly, very slowly recoup more energy than you expend. I was told "Don't let him use more than 20% of what you see as the energy reserves available to him or he will be in energy deficit all the time and we want him to get into energy credit" Without a devoted caregiver and financial resources this is pretty impossible for most people. This needs to be recognised as a disability which requires full time care and a programme of management and financing until the sufferer is back on their feet IMO. Hope this might help someone.
When I was young, I had recovered couple of times from ME/CFS... I was sometime well for several years... And then, out of the blue, a severe flu or big stress show up and would come ... shooting here again completely my immune system, and than back with ME/CFS. But each time here, getting deeper with severity of symptoms. At 54 I still believe that I will recover again from ME/CFS... but each time doing it, it is a harder road. My very best wishes and congratulations to your son... Is a real survivor... And a hope model.
@@raymondjean1195 Thank you so much Jean. I hope that you find a way to recover from this misunderstood disease. The most useful thing I can say to you is this: Make sure people around you fully understand what your problem is and get them to pitch in if they can when you have a relapse...help them to understand the energy deficit pattern....its like money in the bank, you cannot spend what you don't have but you must always have enough credit for times of illness or just being more busy than usual. My son is just completing his MPhysics degree, he works hard but crucially he knows that when he feels a bit more tired than he is happy with, he takes time out to rest and eat really really really well, lots of greens, cabbage, sprouts, brocolli and fresh protein....very little sugar until he feels right again and then just slows up a bit for a few more days.....so far so good! very best wishes to you xx
Shirley.....your comment is appreciated more than I can say. It's not that it's new advice to me, but somehow it hit home to me that I have to stay within my very restricted limitations, if I am ever to escape this prison. Thank you.
I could not raise my hands. I could not stand to be touched. My wrist was swollen and nothing helped. I could not get up off the floor without an extreme struggle, lost my gall bladder, zero sleep without benzos. Treatment helped, but I was already chronic before I knew I had Lyme. Treatment works, maybe not cures, but makes life so much better. Early treatment is far, far, far, far, far, far, far, far, far, far. superior.
Bob Glen -- God let doctors heal all sufferers. It's Lyme, and I only say that from experience. But others and the medical community especially should recognize and inform the public. Lyme never comes alone, it is always accompanied by many pathogens. Some especially common co-infections are babesia, bartonella, erlechia. There are many, many other co-infections. Many victims also get mold infections as Lyme itself, Bb, continually supresses the immune system. I didn't check spellings so to the grammarpolice/ trolls, have a party. There are over 330K NEW victims each year in the US alone. This is unacceptable. Antibiotics (plus probiotics, digestive enzymes, etc.) gave me my life back for 7 years until my doctor was hounded and threatened that his license could be taken away. Get government OUT OF MEDICINE and let doctors practice medicine. Patients will easily find the good doctors if our doctors and victims are left totally alone. I am angry, but try to not be emotionally angry.
wkjeom Wkjeom, I appreciate your sharing of your expertise. I have had fibromyalgia and CFS for many years, and lost everything in 2011 when I became suddenly paralyzed from it. It hasn't been fully diagnosed yet, and I keep being brought to Lyme Disease as the underlying cause. I also was told it was psychosomatic. I am slowly dying, and I keep fighting to stay alive after being on the brink of crossing over many times. Two NDEs last year when I became septic from my gall bladder, which infected & shutdown my bile duct, pancreas, liver, and colon. My emergency surgeon told me I was close to not making it. I also died during the surgery, but was resuscitated. Because I seem fine, despite being bedridden, I don't qualify for any home help. Which is why I went two weeks going septic, and nearly dying. I had no one to take me to the doctor, and I was declined for ambulance service transport. Do you happen to know if the GB going bad correlates to Lyme? And, if you don't mind, what testing would be most effective? Thank you very much, sweetie. Blessings.
I had to have my gallbladder removed and dr said it was :very sick'. that was 4 yrs ago. The surgery put me into a full and total relapse and I am at full physical collapse 4 yrs later, But where you and I differ is, I originally contracted me/cfs from a severe bout with mono-the epstein barr virus, and it seems about 70 percent or more of the cases originated this way. so i maintian ebv is the main culprit.
Love, love and love! ME/CFS finally getting the media coverage it deserves. Well done Jennifer! I'm looking forward to watching Unrest next week at UBCO.
How about mold, MS, Alzheimer, Parkenson, POTS. These are ALL caused by the great mimicking disease, Lyme. My theme gets old if you read my comments, but I am extremely tired of medical abuse, being fired as a patient by conventional medicine (I have had exceptions in conventional medicine by a very few heroic doctors that I owe my life to). Lyme disease needs to go to the top of the line for treatment and then, I'll bet, you would see many of these mimicked diseases either go away or become extremely rare. No cure or treatment is perfect, but having no treatment is deadly and/or will steal any meaningful life you once had.
Can't wait for the day someone finds a definitive cure and solution for this debilitating disease. Jennifer Brea and her wonderful husband, Omar, deserve a huge round of applause and let's pray that Jennifer's documentary results in rising research funds for CFS.
I don't have CFS but my experience was incredibly similar. Too many women are not believed about their health and pain, told it's all in our heads. This cannot continue.
It took me a year to get a diagnosis & I was fortunate to be able to see an internist at Mayo in AZ. He knew immediately what it was after he'd seen all of th tests I'd had done the previous year. So I was diagnosed with ME/CFS and Fibromyalgia. I'd had another autoimmune condition since I was 20 yrs old but this was diagnosed at age 58.
I feel so sad for us all , I also have EDS and Narcolepsy and 24/7 tinnitus it’s so bad beeeogn alive it’s not worth living but ME is the worst of them all and don’t get any kind of help and I live in country that has free health care so that says a lot about it but it’s because it’s mostly woman who have this and therefore we all know they never gonna pay any attention to this wherever you live 🫣🙄🥹🥲
Thank you for making this interview. There is so much suffering for so many people, it is like a forgotten plague. Every time someone shines their light on this, it helps on the suffering. I've suffered from ME/CFS since I was 13 years old, more than 30 years. Both my children have been struggeling with the same from young age. It makes life very hard, even thought we have love, hope and tenderness. Peace be with you all who talks about this, writes about this, lives with this and those who care.
I also have a disability that you can't see so people assume that I've exaggerated my symptoms or that I'm just lazy. This is not the case I'd give anything to have a day full of grocery shopping making dinner do the laundry mopping the floor. Who you might think would miss those things, someone who can't do them and has to watch as other people do them for you. Thank you for your story and I pray you get better.
This gorgeous couple are such amazing humans. Thank you for all the work you have done, specially with the documentary that was very informative and a real eye opener. I’m on the same boat, it’s already hard being sick and then having the entire medical system not believe you... is a rough stitch.
I have this, not to the extent that she has it but I have it too. I've had it since I was 13 and I'm now 20, I also have a myriad of other chronic illnesses too, I'm so glad this is getting more attention.
It has been so helpful for me to learn about post-exertional malaise and other ME symptoms, thank you so much for getting the word out! Realizing that millions of other people experience crashes the way I do has made a big difference for me, I often doubt myself when friends and doctors suggest I have depression and that I should try gradually increasing my activity. What I really need is all the encouragement in the world to slow down and rest, my mind is always telling me I can do way more than my body could ever recover from. I've been doctoring for the past 10+ years and continue to worsen, it seems my whole life is wrapped up in estimating how many days or months a certain activity will take to recover from, and way too often I take the chance and then wish I wouldn't have days later. It has been extremely debilitating and seems to effect every part of my body, but I'm hoping for the best and it's so good to see the publicity and research being done!
@@nathanstoltzfus Hmm, there is a lot that could be said about this, but let me cover the basics. Make sure good posture IS your life. Starting with sleep to walking to driving, lying down, on your phone, sitting to picking up things. I have something debilitating me as well. I don't know what it is, but it has to do with my nerves and gastrointestinal tract. I took out my silver(mercury) fillings and now I'm onto posture/spinal cord. I need stronger ab core that will help my posture.
My aunt experienced the same symptoms for a year, it ended up being Lyme disease. Doctors couldn't diagnose it however and told her she was fine, get rest and do this and that. It was frustrating for her because she knew she was not well, but doctors said otherwise.
Thank you Jen for giving a voice to so many of us. Our doctors don't understand art all what we go through and a 10 minute interaction can't begin to clarify it for them.
The NIH is spending less money on ME/CFS research in 2018. Much of the increase in research comes from donations, including from very sick patients who have so very little income to give.
Hi Bridget, I understand. Someone gave me a copy of Unrest as a gift, but I haven't been able to bring myself to watch it yet. In case you haven't seen it yet, it's going to Air on PBS 1/8/18 "Independent Lens." I'm in EST zone & it's scheduled to air here @ 10pm on my local PBS. Maybe I'll have the courage to watch it then, but I've seen similar movies in the past, e.g. I Remember Me, and prefer to watch them when I'm in remission, but this last relapse left me fully disabled, so I just keep hoping for a medical miracle now. I hope you have a good support system and good MDs at least doing all they can for you. At least I've been very fortunate there and at least feel confident that when there's a breakthrough, the people I'm seeing will either be the ones to discover it or among the first to know of it. Hang in there!
Thank you for this interview. We need more publicity. I still haven't been able to finish Unrest, as it's too much truth hitting my heart all at once, and emotional exertion causes malaise as well. Thank you Jen Brea for being our beautiful face.
Yes there are. They are just unwilling to admit they don't know everything. There's a pretty clear pattern of reactivated viruses at the time of relapse/disability & the bloodwork shows NK Cell Cytotoxicity that is WORSE than HIV. The least they could do is follow the protocol and rule out other diseases that match your symptoms. If the obvious other culprits have been ruled out, tell your doctor to do an indepth Cytokine/NK Cell Cytotoxicity Panel and call one of the research facilities with help interpretting the results. There aren't many labs that do these tests, but if your MD cares about their patients, they'll figure it out.
My immediate thought was to approach it holistically. My multiple symptoms felt like over stress and over work but were actually helped with eliminating many dietary factors. My heart goes out to this beautiful couple and I see their journey as hope for others who suffer silently
There are many, many approaches that many, many people have tried including different types of diets, electrical stimulation, meditation, even infecting oneself with specific parasites (yes, really) to name but a few. Occasionally, there are reports of 'I did this and now I'm cured' but more commonly there's a bit of an improvement for a few weeks followed by a regression to the usual levels of illness. I thought I'd cracked it at one point by going on a high protein/low carb diet and for maybe six weeks I felt pretty good. After that, I crashed back down to where I was before. The truth is, proper scientific research is required and it does seem this is happening but until something robustly evidence based is revealed then we'll mostly continue living these contracted lives.
Super touching movie... I'm still crying... Thank you Jennifer, thank you for your incredible example. You and your life reached my soul, so deeply so profoundly. You help people to feel life more: because in a way or another all us are illness or have some handicaps: somebody emotional handicaps, other addictions of various kind, or other millions of millions of disabilities, related to food, difficulties of intimacy, heart blocks, isolation, sadness, melancholy and so on... I have this kind of sadness that took me over.I would like to hold you for an hour or more, but I can only say to you THANK YOU, THANK YOU with all my heart
Just found this and there are so many of us. Mine started after having a full thyroidectomy. It ruined my entire genetic makeup. 7 years later and only getting worse. I now have an endocrinologist, pulmonologist, rheumatologist, Oncologist, Neurologist, Nephrologist, cardiologist, etc and my Neurologist is a new young doctor and is working to bring all my specialists together to a round table setting to find out once and for all what is my problem. 27 surgeries in 7 years has weakened my heart and lungs. At 46 yrs old I dont think ill make it to 50. We need more awareness especially regarding invisible chronic conditions.
@@anthonypacillas4830 - As bad as the rest. I've lost 3 inches of height in 3 years, lost most feeling in my right foot and left hand. Radiculopathy (sp?) Is the newest title.
@@4brookeevelyn Yes, get your spine aligned and work on your posture always, even laying in bed, on the phone or computer. Look to Esther Gokhale as a prime example especially if you have back pain. And look to Bob & Brad on posture laying down, sleeping or on the computer. A healthy spine is a healthy nervous system(sympathetic & parasympathetic).
@@anthonypacillas4830 Many thanks. Ironically enough, just today, I ordered a back support brace/posture/lumbar support belt and also an acupressure stretcher or stretching type equipment or device for decompression, spinal sciatica, osteoarthritis and left sided scoliosis I have recently been diagnosed with. Oddly though, it was osteoporosis that I had been diagnosed with first. My pcp thought maybe I had osteopenia but definitely not osteoporosis. Unbeknownst to myself AND my physicians, I never thought I'd be diagnosed with such a severe level of osteoporosis. It appeared that by the time my Rheumatologist ordered the Dexa Scan, my bones were, or rather... are so thin and brittle and as the tech put it... "Practically see through?!?! At your age??!!" He was quite stunned, haha. I was in for the 1st Reclast infusion pretty quick. It was during my 2nd appointment with a chiropractor that I'd wanted to go to for years in hope that I'd receive at least a fraction of help with some of the pain however, he ended up fracturing multiple areas on the right side of my ribs while delivering a common "middle side twist" (clearly not it's technical terminology")… It was that maneuver that started most of the battery of tests. And that was just the one diagnosis. At any rate... I realize I just typed out the 1st chapter to my very own deeply mysteriously multiple diagnosed life of Sandra 🙄😆🙏🏻❤️😍 Sorry for the "novel"... Ramblings of a drained, pained, insomniac 💜 ;)
@@4brookeevelyn The spine is very important. Even Edgar Cayce talks about its' importance. I have insomnia and it seems to get better as my spine and nervous system gets better. Try swimming. That's what I'm gonna do. Do you have back pain or neck pain to some degree?
I have had ME/CFS for over 10 years, at first i was bedridden after a severe throat infection, i have improved over time but i still crash. I know it has something to do with immunity as the wierd things is if i get a small head cold my ME symptoms improve!! if i get a chest infection i feel on the edge of death with no immunity fight and this scares me the next time i get flu. it has taken my career and my friends and severely affected my family life. I am 53 now and am hoping treatment comes soon before i die! Jen made an interesting comment about Anitviral treatment she is getting, why is this not available in the UK???
some body -- Humm! Double entendre or pun. I like it, I like it. Trolls died off, maybe troll is a deadly disease. Laughing is soooo good for the belly.
Thank you for outing this devastating illness. If I may be permitted my own pet theory, I think we've been dividing this illness up into many different words that all mean similar things. The funding is there, but it's divided up. HHV6 foundation is its own separate thing. Myositis is its own separate thing. FM is its own separate thing. Lyme's is its own separate thing. Chronic encephalitis is its own separate thing. Each individual autoimmune illness (Lupus, Rheumatism, etc..) are their own separate things. Instead of dividing and not conquering, how about making a unified definition? A Lyme doctor in NY called Dr. Horowitz has recently called the complex of several illnesses "MSIDS" www.lymeactionnetwork.org/msids/ Please don't attack me, I'm not calling my illness "Lyme" but I am saying that I was an avid hiker and to find a tick on me was not a surprise, it was normal and daily for years. Now I have the exercise intolerance they have been talking about, "post exertional malaise." I knew I had turned a corner when I couldn't do basic endurance exercise anymore (simple walking) without two weeks of self care to get back on my feet. I switched to weight training to keep in shape as much as possible. But that fizzled too. I started aching for weeks after a session. I got that headache you get from too many deadlifts... except all I had done was lift a bar, an empty bar (25 lbs cheap bar). I think we can arrive here at the same place via many paths, and if we only look at the paths, then we can't ever see the overview of the map. I really like the cytokine work being done and I would like to know more about XMRV but now every researcher has been scared out of that research. I think it's very possible that we were dealing with our background viruses just fine, until a new one mutated. But finding it is not as important as unifying the treatments so that we all get help, not just antibiotics only for Lyme, antivirals only for AIDS, corticosteroids only for autoimmune. Let people find what works for them. Because if a combination of these works for me, then I need three diagnoses now. And that's just inefficient. Meanwhile the researchers can seek better solutions and offer them to EVERY patient. One thing already being done this way: it doesn't matter if you're ME/CFS or Osteoarthritis, you may be treated with a stimulant so that you can shrug off the fatigue of these. I have both. I wish modafinil didn't have a bad reaction to me. Because it really worked. If we had safer and less side effect inducing stimulants, it would improve the quality of life while researchers and the medical machinery continued their slow deliberate pace. Let me return to Jennifer Brea... thanks so very much for bringing this to the attention of everyone. I still can't rewatch it without breaking down in tears. Not because it's sad, but it's so beautiful, what you did. Nobody in the world has done more for me and my peace of mind than you. Nobody. And I don't even know you! Thank you. Thank you. Take good care of yourself.
That is actually what they tried to do when they attempted to change the name from ME/CFS to SEIDS...to capture a larger group of people with similar illnesses and get them the care they needed and worry about the sub-groups afterwards. The intentions of the people pushing for this were admirable, but a lot of people are selfish, heartless, and don't care about anyone's health (or lack thereof) but their own, and so the SEID project got no traction, but you might want to look up Ellen Clayton who seemed very passionate about helping as many people as possible. Drs. like that are one in a million.
I’ve had this for over 10 years. My manager recently told me that I do t look sick. I was like well it’s a hidden disability. The ignorance is mind blowing.
From 1988-1997 a newspaper in New York warned the world about the Chronic Fatigue Syndrome epidemic. "The Chronic Fatigue Syndrome Epidemic Cover-up" tells the whole story. Available in print and Kindle versions at www.cfsbook.com
This is Amazingly Brave to Share bcuz Mental illness and immune system issues are Hard to diagnose. I was told Chrons disease was in my Head for Years and I almost Died before 1 NP who wouldn’t Give Up On me Help Aid in Finding my Cure.
My brother at age 29 got sick and was bedridden for about 5 years and was diagnosed ( he lives in the UK) with chronic fatigue . He slowly got better after following a protocol he saw and paid a lot of money for . And he recovered . When u turned 40 married to my second husband for 2 years and have suffered with chronic pain I thought from just endometriosis and PCOS , I found out during my fourth pregnancy that I had EDS a collagen gene mutation that I inherited from my father's side . Also have MTHFR gene mutation from both parents . My husband didn't understand although he was being paid to be my carer he wasn't really into believing I had this . Even though I was diagnosed at 16 with joint hypomobility syndrome which is now known as EDS type 3. I was breastfeeding our 11mth old and trying to help run our health and fitness business but my body was ravaged with pain and fatigue and in the end his family took my husband away only to return to take away my baby and have my committed to a psyche ward for 3 weeks I battled to get out . With three teens at home alone ( yes he left his step kids and moved 3500 kms away ) I wondered what would happen . I am so proud that Omar hasn't left Jen and he hasn't succumb to what most people do when it's all too hard... wishing everyone love and light that has any chronic illness that causes you to lose friends Family and social life . Unfortunately 2 of my kids have it as well . One had to leave a great school to study from home as he is in bed most of the time . My brother who had chronic fatigue doesn't believe my illness neither does my mother . It's a lonely world sometimes but I am grateful for what I do have and so glad I had three kids in my early 20's which was recommended due to my endometriosis. More awareness and compassion from the medical industry would be fantastic . My GP is amazing and supportive ! Always get a second third or fourth opinion if you're not happy with your medical provider !!! And keep living and being You !!
beija flor thanks for your reply and comment . With more education in the medical field and the general population through media , will help incredibly to allow support groups for family and friends with chronic pain and health issues as I'm sure they need a space to vent and feel heard as well.. I go over what could I have done better and honestly there is nothing I didn't do .. I was open, caring , nurturing , a listener not a complainer . I put his needs above my own and my kids which was wrong . Now I've learnt a good lesson !! My needs and my children's are important as well !!
I believe I have CFS but of course all my labs come back normal, and drs believe I just need to exercise and go on a diet. Ive tried so many different things. Exercise is the worst for this new me, as I will be forced to stay in bed for a few days. I hate this new me!! I hate feeling unrested for years!
I saw Unrest the other day. Jennifer & Omar great couple. It made me realise I am not as bedridden as Jennifer but I do crash as I have 14 year to care for who expects me to be normal Mum.Some days are really hard. I manage housework & feel guilty of it doesn't get done but I can't do.as much as I want to or if I push myself I then crash. I don't have a social life or any friends I feel I am living my life on the outside looking in. Anyone else the same?
I have wondered if I have this disease but it's perhaps something else, like MS, because my fatigue and brainfog has been variable. I thought it might have been caused by mould in the building but I'm not so sure anymore as it seems to have persisted albeit reduced after moving out (my respitory symptoms pretty much disappeared however). As a kid, I was exposed to lots of mould, at home and at school. I'm also autistic and exhibit some "double-jointedness", which is why I consider Ehlers-Danlos a possibility. Indeed, doctors have found nothing weird beyond slight hypothyroidism that soon fixed itself. Psychiatric experts have, of course, suggested psychiatric reasons. I don't doubt that MADD and BPD (TBH C-PTSD is probably the more correct diagnosis) can cause such problems but not the way that I've been having, I don't think.
Anything that weakens the immune system, mold, some genes, poisons (mercury in amalgam and vaccines, aluminum in vaccines), environmental, even just way too many vaccines, and other factors I cannot remember at the moment, or just do not know about, make all of us much more susceptible to pathogens (bacteria, viruses, mold, etc.). One seruiys assault on our immune system makes us more vulnerable to other even minor attacks. Then we have autoimmunity??? I don't think autoimmunity is well understood. Autoimmunity could just be an immune system under severe attack. Just my thoughts and what I think based on experience and much self-searching, and research.
There is a connection between Autism and ME/CFS, the connection is Vaccines. Sorry if it ruffles feathers, but if you look into XMRV you will find the connection and it will be obvious why this illness has been blackballed.
Oh, get outta here with your silly anti-vax nonsense. Do you even science? There is no coverup, no vaccine-damage autism. It was one guy who faked his research. You are doing a great deal of harm to not just autistic people but allistic people as well by perpetuating this myth. Vaccines save lives! Do your reaearch! If you really cared, you'd stop ABA torture and close down places like the Judge Rotenberg Center. Stop listening to Autism Speaks and start listening to autistic people!
This can happen from infection leading to autoimmune trouble. Vitamin D, corticosteroid, and a cox-2 inhibitor (plus various extra healthy living changes and some more rest) is a generic treatment for many such issues. However, if the trigger is still in the body, it should be treated too if possible.
80% are the women? Where that info come from If doctors cant even diagnose it. I dont mean to be rude but I suffer from it and most of people I know who suffer also are men.
41 yrs with ME CFS / FM. Robbed me of my life. I can't go on too much longer the suffering is just to much on my body. Quality of life is 20%. Waiting for my youngest son to be able to be self-sufficient b4 taking my own life. I am actually looking forward to not suffering any longer. This has been going on since 1982 when a drunk drive nearly killed me. Hopefully some day SOON they will cure these young people who are suffering as well.
I’m noticing she has a lump over her thyroid area. I’m sure her fatigue has caused her thyroid to be out of wack. But I hope that lump isn’t something more nefarious.
There is a reputable explanation for the cause of ME/CFS. Its a particular brain structure that has been traumatised in the beginning of the illness (that's not psychological). The brain goes into defence mode and triggers the immune system and a massive stimulation of the nervous system. Please have a look at the Gupta program for further information. I went from bedridden and in need of care to 100% health with that. Yes, it sounds unbelievable, but the explanation and the solution are already there
Soon as I saw her sitting with her legs on the sofa I said she's rude! Then I said hold on it's exactly what I do even though I make my husband angry and frustrated. It's not in you're head it's actually a illness coz I desperately need to get up and do things but I can't, even when my family humiliate me to the extend I feel like killing myself.
Why do all these people think it's Lyme disease? Don't you think we've thought of that??? How would you feel if we all suddenly dismissed Lyme and told you to get tested for Polio?
I am 1000% sure she has been tested for lyme. I have Ehlers-Danlos Syndrome, and the biggest symptom is pain and the next biggest is chronic fatigue. I'm bedbound and have been for 10 years. Literally every doctor I had was clambering to test me for lyme disease, because it would have been such an easy explanation. But it was always negative. That's one doctors have actually heard of and test for!
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron). To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.(total recovery=2months). The victims are more sensible and also the distance between victim and oven is important. (Also possible: nightmares, change of character)
Artur Sixpence - I'm there, and it is screaming. It's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme. Proper treatment can probably put it in remission. MS, myositis, Alzheimer, Parkenson, ALS. POTS, etc.; it is all Lyme. So extremely sad she did not get Lyme treatment when she had that fever. Her body was SCREAMING for treatment and on her immune system's, so to speak, last leg, screaming for treatment. If she had gotten treatment when she had that fever she would be totally well today. Incompetent medical community of pigeon-hole medicine. It is a crime!!!!!!!!!!!! that medical schools do not teach about Lyme. It does not show up in the blood so much of the time. Mine only shows up in tissue tests. Now diagnosed with myositis (a pigeon hole diagnosis) , at least conventional medicine lets me get IVIG, a stop gap. Usually only early treatment can really get rid of it. I had it so long before diagnosis that I will never get rid of it. Genetics plays a role, but I don't think anyone can escape without treatment. UNACCEPTABLE!!! that she was not treated right away. Have those babies, and treat them when they are born and they will be OK. My opinion, my experience. If it goes way too long, and hers has, it will last the rest of your life, but treatment almost always works to let you live an almost normal life. Again, I am not a medical professional, just a victim with extremely strong opinions. God bless you Jennifer and Omar, I know you will always be in my prayers now. I will be praying you get adequate treatment and can have a family and live a normal life. God bless and keep you. Love, love, love, love to you both.
The ME community knows this and while some sufferers may be misdiagnosed and there are some comorbidities, MEcfs is it's own illness, though likely related.
Yo Yo, As was clarified in the show, ME/CFS is not chronic fatigue (and fatigue is not the main symptom). Apart from that, lyme is among the first things everybody has to look into, it's in the exclusion criteria to be diagnosed with ME/CFS. ME/CFS is not lyme, it's an own disease entity, recognized by the WHO nearly 50 years ago.
This gal goes on national tv to increase awareness about this horrible disease, then years later has chiari surgery & claims she's healed (there is NO cure for ME/CFS), THEN has a breakdown of sorts and literally goes missing. She's the worst possible "example" of a disease that many HAVE that are overlooked. Ugh!
Her disease is screaming, screaming, ... ... ... it's Lyme, it's Lyme!!!!!!!!!!!!!! Treatment works, early treatment is far, far, far, far, far, far, far superior!!!!!
How would you feel if people told you lyme doesn't exist and your symptoms scream ME/CFS? It would be great that instead of rejecting that ME exists (what is scientifically not possible anymore), people with neglected and invisible diseases could fight together for better medical care and recognition. ME and lyme are both complex chronic and severely disabling diseases.
Jane Marple -- I understand. Lyme disease is called the great mimicking disease. Some mimicked diseases are MS, ME, POTS, ALS, Alzheimer, Parkinson, and on and on and on. All these diseases are complicated by things like mercury (amalgam 50% mercury, vaccines), aluminum (vaccines), mold and much more. Just what I have learned, and found in my own experience. Also, I know very many men with Lyme disease too. It is NOT just a woman's disease. I have known men who would not seek treatment. One, about 10 years younger than me who knew he had Lyme, but did not seek treatment, died about two years ago. His logic was quite off, he had bells palsy that I knew about. I don't know what he was just grinning and bearing. I was getting treatment and felt sorry for him. Jen is beautiful even sitting in her own way for comfort. The public as well as doctors will tell a Lyme victim how great they look, but have zero idea what this very sick patient is going through, invisible disability.
crestifer -- I NEVER had a positive Lyme blood test. I was being made fun of by so many doctors. At that point my symptoms didn't quite fit and of the defined syndromes (the medical field will not define what causes syndromes, and there are so many of them). Doctors tried to get me to go see psychologists. I knew I was sick, but could not get help in any way shape or form. I knew I was sick so kept looking. I just "happened" so see Dr. William Harvey explaining Lyme disease on a TV program. Dr. Harvey was ostracised by conventional medicine. Since all of these conventional doctors I saw just made fun of me and tried to get me out of their offices, and I saw my symptoms (no balance, weak muscles [they could have and probably would have diagnosed me with MS given enough time], burning skin [finally took my gall bladder which did no good], no sleep, actually hundreds of symptoms) described by Dr. Harvey, I took down his name and went to see him. He took a urine DNA test and a blood test. As I said the blood test came back negative for Lyme, but the urine DNA test came back positive. I started treatment immediately. Took a couple of months but it was like night and day. Later after Dr. Harvey was chased from town and I again had to deal with conventional doctors, I finally did tissue tests because blood test always came back negative. Any tissue tests, oral, colon, urine, always come back positive. So unless you tell me you had tissue tests that come back negative, I am going to tell you that you have Lyme. This information is to urge you to get treatment that can save not only your life, but your quality of life. Blood tests for Lyme are mostly NOT VALID. The only real problem is that valid Lyme treatment is expensive because of insurance companies, drug companies, and the criminal IDSA, and other government agencies including, HHS including CDC, DFA, and ALL other government agencies because they are all bought off by the drug companies, insurance companies, individuals profiting by the same companies. Go ahead, say you do not have Lyme. Lyme is facilitated by vaccines, mold, mercury, and other contaminants and actually makes the contamanents easier to poison you. Trying to help you. Go ahead and don't listen and don't do your own testing and research at your very own peril. I am not a medical professional, just a Lyme victim doing all I can to survive and to have my life back. I hate seeing people suffer. You know the old saying. You can take a horse to water, but you can't make him drink. I am NOT a medical practitioner of any kind, but I am a scientist. I also hate seeing people suffer because ignorance, their own, and the collective intended ignorance of any part of any criminal medical profession.
thank you for that response. i will do more research on this. i've been struggling for about 7 years now. the only diagnosis i've received is for depression, adhd, cfs/me and sleep apnea. i'm currently treating sleep apnea but i still have a lot of issues, mostly with fatigue, blurry vision, motor and cognitive issues and memory problems. i'd gone down the lyme path years ago and was told by 3 different doctors that is not what i had, but they also basically pumped me full of ssri's that only made me worse. i'm going to discuss this with my new neurologist who has been the first doc in 7 years to actually help me. thanks again for you comment.
@@MP-uo6qd She's currently missing. She is one of the fiercest and most effective advocates the ME/CFS community have. She had a spinal fusion and her symptoms diminished hugely. Maybe have a look at her info on twitter.
I suffer from this disease and it does appear she is playing this up just a bit. It is a real disease, and the symptoms are real but after watching an clip from her documentary it does appear she is playing it up. that is my opinion, but I do believe her.
I hope that if you ever have a misunderstood medical condition like ME/CFS that you DO NOT encounter some one like you!!!! This condition ruins lives and people like you need to get educated before they speak.
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
I was at Berkeley and had to drop out when I was 25 because of this. It feels like end stage cancer but you never get to die. For people who want to denigrate us, I hope you get it.
I feel your pain. My heart goes out to you.
Thank you for taking the time to do this interview. ME/CFS does not get the kind of coverage it needs and this clip was very powerful. I have lived with severe ME/CFS since I was 7 (now 26) and it is nice to see this disease so accurately represented in the media. I actually recognize the photos of this woman in the video from from messages on my blog a few years ago and I think I talked to her a while back when she first got sick and was helping her it something about ME/CFS. It could have been someone else that just looked a lot like her though with a similar story. What an amazing achievement to have created this documentary through all of the struggles of ME/CFS and how incredible that she even made it to this interview given that ME/CFS in severe cases is more similar to late stage AIDS or cancer than other illnesses, and my mind is blown and she is really incredible and inspiring.
I had sudden onset with Epstein Barr 29 years ago.Destroyed my life.We need help, please contribute to the organizations that are trying to help.
i'm 46. until age 40 i led a very active, very healthy lifestyle. took very good care of myself, ate very well, exercised every day, was a hard worker, had a career, spent very little time on the couch, i was always on the move. at age 41, my life fell apart. suddenly i started feeling extreme exhaustion and fatigue. one day i woke up and just felt terrible and haven't felt better since. it's been a 7 year journey, i've lost everything in my life...my marriage, my career, my business, my home, most of my friends, so much time. went from doctor to doctor for years. tons of specialists. i was told i was depressed, had adhd, possibly ms, lymes, etc etc. spent years on various meds that only served to make me feel worse and worse. CFS/ME is a very real condition that affects so many of us. i understand the frustration many here feel. people don't understand and more so, don't often want to understand. i've been called lazy, stupid, pathetic. i'm none of those things. nothing in my life up to the point i got sick would ever demonstrate i was lazy or stupid. i have something wrong with my body. i do everything i can to move forward, my diet is extremely strict, i exercise as much as i can, and i research nearly non stop other things to help me. this disease, this condition is mostly hidden. many of us with this do not look unhealthy. i'm 6'3" 190 lbs, i look very healthy and in shape. many days i can't leave the couch. it is what it is. for those who think this is a made up condition, i hope you never have to face this. for those of you struggling with CFS/ME, i am with you. i support you and believe you, because i too am battling this every day of my life. i admire ms. brea and her husband for making this film and sharing their story, and bringing awareness and hopefully understanding of this condition.
crestifer j Wow Crestifer J, your story is just like mine. Surreal to be living like this, aptly described as having died & watching the years go by.
I think it is strange how widespread this disease/syndrome is, yet not addressed, much less understood.
Thank you and blessings.
amen I have this insidious illness as well, Prior to it, I was energetic, healthy, active, a go getter. Got mono and have never been same, No where near pre illness levels ever since. 15 yrs now. Swore Id be one of the 5 percent who recover,,,,,still tryying,,,trial and error to my limitations
One of the most shocking things is how people who knew you when healthier could suddenly think that you could be all of those negative characteristics. The lengths that people will go through to insulate themselves from the reality of the fragility of life is amazing to me. Like you, I lost everything... friends and my partner fled. And then, after fleeing, they chew you up and spit you out so that they shoulder no responsibility for fleeing.
i have had this for 7 years too and i am only 27
I know I have this. 2 years were really bad. Now I’m much better. But for 2 years I had hundreds of tests that showed stuff but didn’t really show anything. I’m so glad I only had 2 bad years. It’s still bad I can’t work full time but I actually have a life, instead of working part time then too tired to eat dinner or even turn on the TV to watch it. I was like a zombie for over a year. It’s not just fatigue it’s pain, fogginess, muscle fatigue, I would walk one block and feel like I had biked 2 miles really fast. I was actually prescribed oxygen but then my test would be normal. Later on my oxygen would be low again. New worse headaches that would make me throw up. Feeling sick almost every day. I think it’s true that doctors just don’t know much about it because I’ve seen like eight different doctors and no one suggested this. It wasn’t until I watched chasing the cure and someone had it that I realized I have it. I’m sure my regular doctor will agree. He already diagnosed me with chronic fatigue. I also look healthy. No one would guess how bad my health is. I am praying it doesn’t come back like it did. But I still am tired every single day. There is never a day where I’m not exhausted no matter how little or how much sleep I get. Especially when I was at work and would do too much I would be tired for like three days after. Hope doctors research this more so we can get more answers.
I'm no expert but my son recovered fully from 2 years of ME/CFS and this is what I learned: It seems that one of the common features of ME/CFS is people who expend more energy than they have in their personal reserves. It seemed to me that it was about management. I was taught (I was lucky enough to be in the UK at a time when there were resources for a full ME/CFS medical team behind me) that if you can turn over twice in bed before you are exhausted do it once then do NOTHING at all for several days or weeks , if that's what it takes for you, and begin to slowly, very slowly recoup more energy than you expend. I was told "Don't let him use more than 20% of what you see as the energy reserves available to him or he will be in energy deficit all the time and we want him to get into energy credit" Without a devoted caregiver and financial resources this is pretty impossible for most people. This needs to be recognised as a disability which requires full time care and a programme of management and financing until the sufferer is back on their feet IMO. Hope this might help someone.
When I was young, I had recovered couple of times from ME/CFS... I was sometime well for several years... And then, out of the blue, a severe flu or big stress show up and would come ... shooting here again completely my immune system, and than back with ME/CFS. But each time here, getting deeper with severity of symptoms. At 54 I still believe that I will recover again from ME/CFS... but each time doing it, it is a harder road. My very best wishes and congratulations to your son... Is a real survivor... And a hope model.
@@raymondjean1195 Thank you so much Jean. I hope that you find a way to recover from this misunderstood disease. The most useful thing I can say to you is this: Make sure people around you fully understand what your problem is and get them to pitch in if they can when you have a relapse...help them to understand the energy deficit pattern....its like money in the bank, you cannot spend what you don't have but you must always have enough credit for times of illness or just being more busy than usual. My son is just completing his MPhysics degree, he works hard but crucially he knows that when he feels a bit more tired than he is happy with, he takes time out to rest and eat really really really well, lots of greens, cabbage, sprouts, brocolli and fresh protein....very little sugar until he feels right again and then just slows up a bit for a few more days.....so far so good! very best wishes to you xx
Thanks for your encouraging words. They are very much appreciated. Regards.
Shirley.....your comment is appreciated more than I can say. It's not that it's new advice to me, but somehow it hit home to me that I have to stay within my very restricted limitations, if I am ever to escape this prison. Thank you.
You are so right, and it's only 10 years in that I am able to recognize this and try to work with it. Hallelujah!
Severe Weakness. Is how I feel . Too weak to scratch my head. This illness needs to get more light!!!
I could not raise my hands. I could not stand to be touched. My wrist was swollen and nothing helped. I could not get up off the floor without an extreme struggle, lost my gall bladder, zero sleep without benzos. Treatment helped, but I was already chronic before I knew I had Lyme. Treatment works, maybe not cures, but makes life so much better. Early treatment is far, far, far, far, far, far, far, far, far, far. superior.
My wife has this illness and it so hard to see the one you love suffer so much.
Does anyone understand, I think not. God bless all sufferer's
Bob Glen -- God let doctors heal all sufferers. It's Lyme, and I only say that from experience. But others and the medical community especially should recognize and inform the public. Lyme never comes alone, it is always accompanied by many pathogens. Some especially common co-infections are babesia, bartonella, erlechia. There are many, many other co-infections. Many victims also get mold infections as Lyme itself, Bb, continually supresses the immune system. I didn't check spellings so to the grammarpolice/ trolls, have a party. There are over 330K NEW victims each year in the US alone. This is unacceptable. Antibiotics (plus probiotics, digestive enzymes, etc.) gave me my life back for 7 years until my doctor was hounded and threatened that his license could be taken away. Get government OUT OF MEDICINE and let doctors practice medicine. Patients will easily find the good doctors if our doctors and victims are left totally alone. I am angry, but try to not be emotionally angry.
wkjeom Wkjeom, I appreciate your sharing of your expertise. I have had fibromyalgia and CFS for many years, and lost everything in 2011 when I became suddenly paralyzed from it. It hasn't been fully diagnosed yet, and I keep being brought to Lyme Disease as the underlying cause.
I also was told it was psychosomatic.
I am slowly dying, and I keep fighting to stay alive after being on the brink of crossing over many times. Two NDEs last year when I became septic from my gall bladder, which infected & shutdown my bile duct, pancreas, liver, and colon. My emergency surgeon told me I was close to not making it. I also died during the surgery, but was resuscitated.
Because I seem fine, despite being bedridden, I don't qualify for any home help. Which is why I went two weeks going septic, and nearly dying. I had no one to take me to the doctor, and I was declined for ambulance service transport.
Do you happen to know if the GB going bad correlates to Lyme? And, if you don't mind, what testing would be most effective?
Thank you very much, sweetie. Blessings.
I had to have my gallbladder removed and dr said it was :very sick'. that was 4 yrs ago. The surgery put me into a full and total relapse and I am at full physical collapse 4 yrs later, But where you and I differ is, I originally contracted me/cfs from a severe bout with mono-the epstein barr virus, and it seems about 70 percent or more of the cases originated this way. so i maintian ebv is the main culprit.
Great to see this getting more coverage. We're in dire need of help, anything and anyone that helps shed more light on this is extremely helpful.
Love, love and love! ME/CFS finally getting the media coverage it deserves. Well done Jennifer! I'm looking forward to watching Unrest next week at UBCO.
How about mold, MS, Alzheimer, Parkenson, POTS. These are ALL caused by the great mimicking disease, Lyme. My theme gets old if you read my comments, but I am extremely tired of medical abuse, being fired as a patient by conventional medicine (I have had exceptions in conventional medicine by a very few heroic doctors that I owe my life to). Lyme disease needs to go to the top of the line for treatment and then, I'll bet, you would see many of these mimicked diseases either go away or become extremely rare. No cure or treatment is perfect, but having no treatment is deadly and/or will steal any meaningful life you once had.
Can't wait for the day someone finds a definitive cure and solution for this debilitating disease. Jennifer Brea and her wonderful husband, Omar, deserve a huge round of applause and let's pray that Jennifer's documentary results in rising research funds for CFS.
I don't have CFS but my experience was incredibly similar. Too many women are not believed about their health and pain, told it's all in our heads. This cannot continue.
It took me a year to get a diagnosis & I was fortunate to be able to see an internist at Mayo in AZ. He knew immediately what it was after he'd seen all of th tests I'd had done the previous year. So I was diagnosed with ME/CFS and Fibromyalgia. I'd had another autoimmune condition since I was 20 yrs old but this was diagnosed at age 58.
I was also diagnos with ME and it has ruined my life in every way
Me too Anna.
Me too. Ruined my career, my relationship and I can barely look after my child. It’s horrific. I have fibromyalgia too.
Me too 😢
I feel so sad for us all , I also have EDS and Narcolepsy and 24/7 tinnitus it’s so bad beeeogn alive it’s not worth living but ME is the worst of them all and don’t get any kind of help and I live in country that has free health care so that says a lot about it but it’s because it’s mostly woman who have this and therefore we all know they never gonna pay any attention to this wherever you live 🫣🙄🥹🥲
Thank you for making this interview. There is so much suffering for so many people, it is like a forgotten plague. Every time someone shines their light on this, it helps on the suffering. I've suffered from ME/CFS since I was 13 years old, more than 30 years. Both my children have been struggeling with the same from young age. It makes life very hard, even thought we have love, hope and tenderness. Peace be with you all who talks about this, writes about this, lives with this and those who care.
I also have a disability that you can't see so people assume that I've exaggerated my symptoms or that I'm just lazy. This is not the case I'd give anything to have a day full of grocery shopping making dinner do the laundry mopping the floor. Who you might think would miss those things, someone who can't do them and has to watch as other people do them for you. Thank you for your story and I pray you get better.
Thank you! :) Great interview. ME/CFS stole 15 years of my life so far. So grateful to Jen Brea and Unrest.
Her smile really does light up a room😊
This gorgeous couple are such amazing humans. Thank you for all the work you have done, specially with the documentary that was very informative and a real eye opener. I’m on the same boat, it’s already hard being sick and then having the entire medical system not believe you... is a rough stitch.
I have this, not to the extent that she has it but I have it too. I've had it since I was 13 and I'm now 20, I also have a myriad of other chronic illnesses too, I'm so glad this is getting more attention.
It has been so helpful for me to learn about post-exertional malaise and other ME symptoms, thank you so much for getting the word out! Realizing that millions of other people experience crashes the way I do has made a big difference for me, I often doubt myself when friends and doctors suggest I have depression and that I should try gradually increasing my activity. What I really need is all the encouragement in the world to slow down and rest, my mind is always telling me I can do way more than my body could ever recover from. I've been doctoring for the past 10+ years and continue to worsen, it seems my whole life is wrapped up in estimating how many days or months a certain activity will take to recover from, and way too often I take the chance and then wish I wouldn't have days later. It has been extremely debilitating and seems to effect every part of my body, but I'm hoping for the best and it's so good to see the publicity and research being done!
Have you tried spinal correction?
@@anthonypacillas4830 I have, and with positive results, but nothing that really lasted. Any suggestions?
@@nathanstoltzfus Hmm, there is a lot that could be said about this, but let me cover the basics.
Make sure good posture IS your life. Starting with sleep to walking to driving, lying down, on your phone, sitting to picking up things.
I have something debilitating me as well. I don't know what it is, but it has to do with my nerves and gastrointestinal tract. I took out my silver(mercury) fillings and now I'm onto posture/spinal cord.
I need stronger ab core that will help my posture.
My aunt experienced the same symptoms for a year, it ended up being Lyme disease. Doctors couldn't diagnose it however and told her she was fine, get rest and do this and that. It was frustrating for her because she knew she was not well, but doctors said otherwise.
Thank you Jen for giving a voice to so many of us. Our doctors don't understand art all what we go through and a 10 minute interaction can't begin to clarify it for them.
The NIH is spending less money on ME/CFS research in 2018. Much of the increase in research comes from donations, including from very sick patients who have so very little income to give.
This was hard to watch, as I know Unrest will be as someone who’s life has been ruined by CFS/ME 😢
Hi Bridget, I understand. Someone gave me a copy of Unrest as a gift, but I haven't been able to bring myself to watch it yet. In case you haven't seen it yet, it's going to Air on PBS 1/8/18 "Independent Lens." I'm in EST zone & it's scheduled to air here @ 10pm on my local PBS. Maybe I'll have the courage to watch it then, but I've seen similar movies in the past, e.g. I Remember Me, and prefer to watch them when I'm in remission, but this last relapse left me fully disabled, so I just keep hoping for a medical miracle now. I hope you have a good support system and good MDs at least doing all they can for you. At least I've been very fortunate there and at least feel confident that when there's a breakthrough, the people I'm seeing will either be the ones to discover it or among the first to know of it. Hang in there!
Same here, it's just too confronting. I do look up videos of people who got better because I mentally need that sooo hard!!
Praying for answers! 🙏🏽
Thank you for this interview. We need more publicity. I still haven't been able to finish Unrest, as it's too much truth hitting my heart all at once, and emotional exertion causes malaise as well. Thank you Jen Brea for being our beautiful face.
My doctor says there are no markers. I am immediately dismissed. I have crushing exhaustion. And many other debilitating symptoms.
Yes there are. They are just unwilling to admit they don't know everything. There's a pretty clear pattern of reactivated viruses at the time of relapse/disability & the bloodwork shows NK Cell Cytotoxicity that is WORSE than HIV. The least they could do is follow the protocol and rule out other diseases that match your symptoms. If the obvious other culprits have been ruled out, tell your doctor to do an indepth Cytokine/NK Cell Cytotoxicity Panel and call one of the research facilities with help interpretting the results. There aren't many labs that do these tests, but if your MD cares about their patients, they'll figure it out.
Get tested for Lyme Disease
Look up Dr. Ron Davis, Stanford University Medical. In April of this year, he and his team found a biomarker in the blood for chronic fatigue.
thats bs!!! take an ebv test and compare VCA-IGG and EBNA-IGG levels with healthy patients and then see how dumb your doc will sound.
My immediate thought was to approach it holistically. My multiple symptoms felt like over stress and over work but were actually helped with eliminating many dietary factors. My heart goes out to this beautiful couple and I see their journey as hope for others who suffer silently
There are many, many approaches that many, many people have tried including different types of diets, electrical stimulation, meditation, even infecting oneself with specific parasites (yes, really) to name but a few.
Occasionally, there are reports of 'I did this and now I'm cured' but more commonly there's a bit of an improvement for a few weeks followed by a regression to the usual levels of illness.
I thought I'd cracked it at one point by going on a high protein/low carb diet and for maybe six weeks I felt pretty good. After that, I crashed back down to where I was before.
The truth is, proper scientific research is required and it does seem this is happening but until something robustly evidence based is revealed then we'll mostly continue living these contracted lives.
Super touching movie... I'm still crying... Thank you Jennifer, thank you for your incredible example. You and your life reached my soul, so deeply so profoundly. You help people to feel life more: because in a way or another all us are illness or have some handicaps: somebody emotional handicaps, other addictions of various kind, or other millions of millions of disabilities, related to food, difficulties of intimacy, heart blocks, isolation, sadness, melancholy and so on... I have this kind of sadness that took me over.I would like to hold you for an hour or more, but I can only say to you THANK YOU, THANK YOU with all my heart
There are millions of us.
Great topic. Good direction. Nice template for personal topics. ☕
Just found this and there are so many of us. Mine started after having a full thyroidectomy. It ruined my entire genetic makeup. 7 years later and only getting worse. I now have an endocrinologist, pulmonologist, rheumatologist, Oncologist, Neurologist, Nephrologist, cardiologist, etc and my Neurologist is a new young doctor and is working to bring all my specialists together to a round table setting to find out once and for all what is my problem. 27 surgeries in 7 years has weakened my heart and lungs. At 46 yrs old I dont think ill make it to 50. We need more awareness especially regarding invisible chronic conditions.
How's your spine and nervous system?🌷
@@anthonypacillas4830 - As bad as the rest. I've lost 3 inches of height in 3 years, lost most feeling in my right foot and left hand. Radiculopathy (sp?) Is the newest title.
@@4brookeevelyn Yes, get your spine aligned and work on your posture always, even laying in bed, on the phone or computer.
Look to Esther Gokhale as a prime example especially if you have back pain.
And look to Bob & Brad on posture laying down, sleeping or on the computer.
A healthy spine is a healthy nervous system(sympathetic & parasympathetic).
@@anthonypacillas4830 Many thanks. Ironically enough, just today, I ordered a back support brace/posture/lumbar support belt and also an acupressure stretcher or stretching type equipment or device for decompression, spinal sciatica, osteoarthritis and left sided scoliosis I have recently been diagnosed with. Oddly though, it was osteoporosis that I had been diagnosed with first. My pcp thought maybe I had osteopenia but definitely not osteoporosis. Unbeknownst to myself AND my physicians, I never thought I'd be diagnosed with such a severe level of osteoporosis. It appeared that by the time my Rheumatologist ordered the Dexa Scan, my bones were, or rather... are so thin and brittle and as the tech put it... "Practically see through?!?! At your age??!!" He was quite stunned, haha. I was in for the 1st Reclast infusion pretty quick. It was during my 2nd appointment with a chiropractor that I'd wanted to go to for years in hope that I'd receive at least a fraction of help with some of the pain however, he ended up fracturing multiple areas on the right side of my ribs while delivering a common "middle side twist" (clearly not it's technical terminology")… It was that maneuver that started most of the battery of tests. And that was just the one diagnosis. At any rate... I realize I just typed out the 1st chapter to my very own deeply mysteriously multiple diagnosed life of Sandra 🙄😆🙏🏻❤️😍 Sorry for the "novel"... Ramblings of a drained, pained, insomniac 💜 ;)
@@4brookeevelyn The spine is very important. Even Edgar Cayce talks about its' importance.
I have insomnia and it seems to get better as my spine and nervous system gets better.
Try swimming. That's what I'm gonna do.
Do you have back pain or neck pain to some degree?
Plasmapheresis has helped me greatly with this and similar illnesses.
are you UK or US? I am UK and have never heard of this for ME.
Watching Jennifer always gives me some hope to slog on through.
I am not grateful for this disease. I could have accomplished so much. 23 years now. It IS an autoimmune disease.
I have had ME/CFS for over 10 years, at first i was bedridden after a severe throat infection, i have improved over time but i still crash. I know it has something to do with immunity as the wierd things is if i get a small head cold my ME symptoms improve!! if i get a chest infection i feel on the edge of death with no immunity fight and this scares me the next time i get flu. it has taken my career and my friends and severely affected my family life. I am 53 now and am hoping treatment comes soon before i die! Jen made an interesting comment about Anitviral treatment she is getting, why is this not available in the UK???
Megan. Thank you.
The trolls seem to have died off.
some body True, trolls stink!
some body -- Humm! Double entendre or pun. I like it, I like it. Trolls died off, maybe troll is a deadly disease. Laughing is soooo good for the belly.
Thank you for outing this devastating illness. If I may be permitted my own pet theory, I think we've been dividing this illness up into many different words that all mean similar things. The funding is there, but it's divided up. HHV6 foundation is its own separate thing. Myositis is its own separate thing. FM is its own separate thing. Lyme's is its own separate thing. Chronic encephalitis is its own separate thing. Each individual autoimmune illness (Lupus, Rheumatism, etc..) are their own separate things.
Instead of dividing and not conquering, how about making a unified definition? A Lyme doctor in NY called Dr. Horowitz has recently called the complex of several illnesses "MSIDS" www.lymeactionnetwork.org/msids/ Please don't attack me, I'm not calling my illness "Lyme" but I am saying that I was an avid hiker and to find a tick on me was not a surprise, it was normal and daily for years.
Now I have the exercise intolerance they have been talking about, "post exertional malaise." I knew I had turned a corner when I couldn't do basic endurance exercise anymore (simple walking) without two weeks of self care to get back on my feet. I switched to weight training to keep in shape as much as possible. But that fizzled too. I started aching for weeks after a session. I got that headache you get from too many deadlifts... except all I had done was lift a bar, an empty bar (25 lbs cheap bar).
I think we can arrive here at the same place via many paths, and if we only look at the paths, then we can't ever see the overview of the map. I really like the cytokine work being done and I would like to know more about XMRV but now every researcher has been scared out of that research.
I think it's very possible that we were dealing with our background viruses just fine, until a new one mutated. But finding it is not as important as unifying the treatments so that we all get help, not just antibiotics only for Lyme, antivirals only for AIDS, corticosteroids only for autoimmune. Let people find what works for them. Because if a combination of these works for me, then I need three diagnoses now. And that's just inefficient. Meanwhile the researchers can seek better solutions and offer them to EVERY patient.
One thing already being done this way: it doesn't matter if you're ME/CFS or Osteoarthritis, you may be treated with a stimulant so that you can shrug off the fatigue of these. I have both. I wish modafinil didn't have a bad reaction to me. Because it really worked. If we had safer and less side effect inducing stimulants, it would improve the quality of life while researchers and the medical machinery continued their slow deliberate pace.
Let me return to Jennifer Brea... thanks so very much for bringing this to the attention of everyone. I still can't rewatch it without breaking down in tears. Not because it's sad, but it's so beautiful, what you did. Nobody in the world has done more for me and my peace of mind than you. Nobody. And I don't even know you! Thank you. Thank you. Take good care of yourself.
That is actually what they tried to do when they attempted to change the name from ME/CFS to SEIDS...to capture a larger group of people with similar illnesses and get them the care they needed and worry about the sub-groups afterwards. The intentions of the people pushing for this were admirable, but a lot of people are selfish, heartless, and don't care about anyone's health (or lack thereof) but their own, and so the SEID project got no traction, but you might want to look up Ellen Clayton who seemed very passionate about helping as many people as possible. Drs. like that are one in a million.
Sometimes I wonder if our immunization process sits in our systems and causes a mutation that eventually causes systems in people. 🤔
I’ve had this for over 10 years. My manager recently told me that I do t look sick. I was like well it’s a hidden disability. The ignorance is mind blowing.
Please try fermented foods and magnesio
From 1988-1997 a newspaper in New York warned the world about the Chronic Fatigue Syndrome epidemic. "The Chronic Fatigue Syndrome Epidemic Cover-up" tells the whole story. Available in print and Kindle versions at www.cfsbook.com
i'm ill but man that doc is beautiful..if anyone could cure me it would be her!
This is Amazingly Brave to Share bcuz Mental illness and immune system issues are Hard to diagnose. I was told Chrons disease was in my Head for Years and I almost Died before 1 NP who wouldn’t Give Up On me Help Aid in Finding my Cure.
My brother at age 29 got sick and was bedridden for about 5 years and was diagnosed ( he lives in the UK) with chronic fatigue . He slowly got better after following a protocol he saw and paid a lot of money for . And he recovered . When u turned 40 married to my second husband for 2 years and have suffered with chronic pain I thought from just endometriosis and PCOS , I found out during my fourth pregnancy that I had EDS a collagen gene mutation that I inherited from my father's side . Also have MTHFR gene mutation from both parents . My husband didn't understand although he was being paid to be my carer he wasn't really into believing I had this . Even though I was diagnosed at 16 with joint hypomobility syndrome which is now known as EDS type 3. I was breastfeeding our 11mth old and trying to help run our health and fitness business but my body was ravaged with pain and fatigue and in the end his family took my husband away only to return to take away my baby and have my committed to a psyche ward for 3 weeks I battled to get out . With three teens at home alone ( yes he left his step kids and moved 3500 kms away ) I wondered what would happen . I am so proud that Omar hasn't left Jen and he hasn't succumb to what most people do when it's all too hard... wishing everyone love and light that has any chronic illness that causes you to lose friends Family and social life . Unfortunately 2 of my kids have it as well . One had to leave a great school to study from home as he is in bed most of the time . My brother who had chronic fatigue doesn't believe my illness neither does my mother . It's a lonely world sometimes but I am grateful for what I do have and so glad I had three kids in my early 20's which was recommended due to my endometriosis. More awareness and compassion from the medical industry would be fantastic . My GP is amazing and supportive ! Always get a second third or fourth opinion if you're not happy with your medical provider !!! And keep living and being You !!
***
beija flor thanks for your reply and comment . With more education in the medical field and the general population through media , will help incredibly to allow support groups for family and friends with chronic pain and health issues as I'm sure they need a space to vent and feel heard as well.. I go over what could I have done better and honestly there is nothing I didn't do .. I was open, caring , nurturing , a listener not a complainer . I put his needs above my own and my kids which was wrong . Now I've learnt a good lesson !! My needs and my children's are important as well !!
I believe I have CFS but of course all my labs come back normal, and drs believe I just need to exercise and go on a diet. Ive tried so many different things. Exercise is the worst for this new me, as I will be forced to stay in bed for a few days. I hate this new me!! I hate feeling unrested for years!
I saw Unrest the other day. Jennifer & Omar great couple. It made me realise I am not as bedridden as Jennifer but I do crash as I have 14 year to care for who expects me to be normal Mum.Some days are really hard. I manage housework & feel guilty of it doesn't get done but I can't do.as much as I want to or if I push myself I then crash. I don't have a social life or any friends
I feel I am living my life on the outside looking in. Anyone else the same?
I have wondered if I have this disease but it's perhaps something else, like MS, because my fatigue and brainfog has been variable. I thought it might have been caused by mould in the building but I'm not so sure anymore as it seems to have persisted albeit reduced after moving out (my respitory symptoms pretty much disappeared however). As a kid, I was exposed to lots of mould, at home and at school. I'm also autistic and exhibit some "double-jointedness", which is why I consider Ehlers-Danlos a possibility. Indeed, doctors have found nothing weird beyond slight hypothyroidism that soon fixed itself. Psychiatric experts have, of course, suggested psychiatric reasons. I don't doubt that MADD and BPD (TBH C-PTSD is probably the more correct diagnosis) can cause such problems but not the way that I've been having, I don't think.
Anything that weakens the immune system, mold, some genes, poisons (mercury in amalgam and vaccines, aluminum in vaccines), environmental, even just way too many vaccines, and other factors I cannot remember at the moment, or just do not know about, make all of us much more susceptible to pathogens (bacteria, viruses, mold, etc.). One seruiys assault on our immune system makes us more vulnerable to other even minor attacks. Then we have autoimmunity??? I don't think autoimmunity is well understood. Autoimmunity could just be an immune system under severe attack. Just my thoughts and what I think based on experience and much self-searching, and research.
There is a connection between Autism and ME/CFS, the connection is Vaccines. Sorry if it ruffles feathers, but if you look into XMRV you will find the connection and it will be obvious why this illness has been blackballed.
Oh, get outta here with your silly anti-vax nonsense. Do you even science? There is no coverup, no vaccine-damage autism. It was one guy who faked his research. You are doing a great deal of harm to not just autistic people but allistic people as well by perpetuating this myth. Vaccines save lives! Do your reaearch! If you really cared, you'd stop ABA torture and close down places like the Judge Rotenberg Center. Stop listening to Autism Speaks and start listening to autistic people!
This can happen from infection leading to autoimmune trouble. Vitamin D, corticosteroid, and a cox-2 inhibitor (plus various extra healthy living changes and some more rest) is a generic treatment for many such issues. However, if the trigger is still in the body, it should be treated too if possible.
80% are the women? Where that info come from If doctors cant even diagnose it. I dont mean to be rude but I suffer from it and most of people I know who suffer also are men.
41 yrs with ME CFS / FM. Robbed me of my life. I can't go on too much longer the suffering is just to much on my body. Quality of life is 20%. Waiting for my youngest son to be able to be self-sufficient b4 taking my own life. I am actually looking forward to not suffering any longer. This has been going on since 1982 when a drunk drive nearly killed me. Hopefully some day SOON they will cure these young people who are suffering as well.
I wonder if lactic acid build up has anything to do with this? Going to investigate the current theories.
She looks pretty good. Is she in pain? Does it hurt to move?
Doctors are not gods
GO SEE THIS MOVIE. It will change your life. It did mine. And bring a tissue 😢
I’m noticing she has a lump over her thyroid area. I’m sure her fatigue has caused her thyroid to be out of wack. But I hope that lump isn’t something more nefarious.
No you have made me feel brave I now can talk to him and know a great deal more information on me thank you I’m wishing you well …..😢…
I have been diagnosed with this finally. No cure yet
Fatigue =hit by a truck
There is a reputable explanation for the cause of ME/CFS. Its a particular brain structure that has been traumatised in the beginning of the illness (that's not psychological). The brain goes into defence mode and triggers the immune system and a massive stimulation of the nervous system. Please have a look at the Gupta program for further information.
I went from bedridden and in need of care to 100% health with that. Yes, it sounds unbelievable, but the explanation and the solution are already there
Soon as I saw her sitting with her legs on the sofa I said she's rude! Then I said hold on it's exactly what I do even though I make my husband angry and frustrated. It's not in you're head it's actually a illness coz I desperately need to get up and do things but I can't, even when my family humiliate me to the extend I feel like killing myself.
yep. me.
sounds like you have lyme just like me
its crap. keep smiling xxc
🤗❤️😢
What it showed me I would gladly give back. In a minute!
Please get tested for lyme disease
Why do all these people think it's Lyme disease? Don't you think we've thought of that???
How would you feel if we all suddenly dismissed Lyme and told you to get tested for Polio?
I am 1000% sure she has been tested for lyme. I have Ehlers-Danlos Syndrome, and the biggest symptom is pain and the next biggest is chronic fatigue. I'm bedbound and have been for 10 years. Literally every doctor I had was clambering to test me for lyme disease, because it would have been such an easy explanation. But it was always negative. That's one doctors have actually heard of and test for!
I suffer from ME and have very high heavy metal toxicity. Coicidence? Maybe, maybe not?
I had weird things like human growth hormone was really messed up...but was no longer growing ...so ???????????/
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.(total recovery=2months).
The victims are more sensible and also the distance between victim and oven is important.
(Also possible: nightmares, change of character)
THYROID THYROID THYROID!!!
Unrest ……
HHV-6... look it up.
Nazar değmiş
Lyme Disease.
Chronic fatigue is often caused by Lyme disease and it's coinfections. Please look into this.
People have and whilst this may be the case for some, ME/CFS appears to be something different.
Artur Sixpence - I'm there, and it is screaming. It's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme, it's Lyme. Proper treatment can probably put it in remission. MS, myositis, Alzheimer, Parkenson, ALS. POTS, etc.; it is all Lyme. So extremely sad she did not get Lyme treatment when she had that fever. Her body was SCREAMING for treatment and on her immune system's, so to speak, last leg, screaming for treatment. If she had gotten treatment when she had that fever she would be totally well today. Incompetent medical community of pigeon-hole medicine. It is a crime!!!!!!!!!!!! that medical schools do not teach about Lyme. It does not show up in the blood so much of the time. Mine only shows up in tissue tests. Now diagnosed with myositis (a pigeon hole diagnosis) , at least conventional medicine lets me get IVIG, a stop gap. Usually only early treatment can really get rid of it. I had it so long before diagnosis that I will never get rid of it. Genetics plays a role, but I don't think anyone can escape without treatment. UNACCEPTABLE!!! that she was not treated right away. Have those babies, and treat them when they are born and they will be OK. My opinion, my experience. If it goes way too long, and hers has, it will last the rest of your life, but treatment almost always works to let you live an almost normal life. Again, I am not a medical professional, just a victim with extremely strong opinions. God bless you Jennifer and Omar, I know you will always be in my prayers now. I will be praying you get adequate treatment and can have a family and live a normal life. God bless and keep you. Love, love, love, love to you both.
The ME community knows this and while some sufferers may be misdiagnosed and there are some comorbidities, MEcfs is it's own illness, though likely related.
Yo Yo, As was clarified in the show, ME/CFS is not chronic fatigue (and fatigue is not the main symptom). Apart from that, lyme is among the first things everybody has to look into, it's in the exclusion criteria to be diagnosed with ME/CFS. ME/CFS is not lyme, it's an own disease entity, recognized by the WHO nearly 50 years ago.
I might agree if you called it MSIDS, but it isn't Lyme alone.
This gal goes on national tv to increase awareness about this horrible disease, then years later has chiari surgery & claims she's healed (there is NO cure for ME/CFS), THEN has a breakdown of sorts and literally goes missing. She's the worst possible "example" of a disease that many HAVE that are overlooked. Ugh!
It wasn’t her fault she went missing. She was brought to do hospital and they didn’t contact her family, she couldn’t reach out to them.
CBD and THC.
Her disease is screaming, screaming, ... ... ... it's Lyme, it's Lyme!!!!!!!!!!!!!! Treatment works, early treatment is far, far, far, far, far, far, far superior!!!!!
How would you feel if people told you lyme doesn't exist and your symptoms scream ME/CFS? It would be great that instead of rejecting that ME exists (what is scientifically not possible anymore), people with neglected and invisible diseases could fight together for better medical care and recognition. ME and lyme are both complex chronic and severely disabling diseases.
Jane Marple -- I understand. Lyme disease is called the great mimicking disease. Some mimicked diseases are MS, ME, POTS, ALS, Alzheimer, Parkinson, and on and on and on. All these diseases are complicated by things like mercury (amalgam 50% mercury, vaccines), aluminum (vaccines), mold and much more. Just what I have learned, and found in my own experience. Also, I know very many men with Lyme disease too. It is NOT just a woman's disease. I have known men who would not seek treatment. One, about 10 years younger than me who knew he had Lyme, but did not seek treatment, died about two years ago. His logic was quite off, he had bells palsy that I knew about. I don't know what he was just grinning and bearing. I was getting treatment and felt sorry for him. Jen is beautiful even sitting in her own way for comfort. The public as well as doctors will tell a Lyme victim how great they look, but have zero idea what this very sick patient is going through, invisible disability.
i've heard the same. been tested for lyme quite a few times. also ms, als, etc etc.
crestifer -- I NEVER had a positive Lyme blood test. I was being made fun of by so many doctors. At that point my symptoms didn't quite fit and of the defined syndromes (the medical field will not define what causes syndromes, and there are so many of them). Doctors tried to get me to go see psychologists. I knew I was sick, but could not get help in any way shape or form. I knew I was sick so kept looking. I just "happened" so see Dr. William Harvey explaining Lyme disease on a TV program. Dr. Harvey was ostracised by conventional medicine. Since all of these conventional doctors I saw just made fun of me and tried to get me out of their offices, and I saw my symptoms (no balance, weak muscles [they could have and probably would have diagnosed me with MS given enough time], burning skin [finally took my gall bladder which did no good], no sleep, actually hundreds of symptoms) described by Dr. Harvey, I took down his name and went to see him. He took a urine DNA test and a blood test. As I said the blood test came back negative for Lyme, but the urine DNA test came back positive. I started treatment immediately. Took a couple of months but it was like night and day. Later after Dr. Harvey was chased from town and I again had to deal with conventional doctors, I finally did tissue tests because blood test always came back negative. Any tissue tests, oral, colon, urine, always come back positive. So unless you tell me you had tissue tests that come back negative, I am going to tell you that you have Lyme. This information is to urge you to get treatment that can save not only your life, but your quality of life. Blood tests for Lyme are mostly NOT VALID. The only real problem is that valid Lyme treatment is expensive because of insurance companies, drug companies, and the criminal IDSA, and other government agencies including, HHS including CDC, DFA, and ALL other government agencies because they are all bought off by the drug companies, insurance companies, individuals profiting by the same companies. Go ahead, say you do not have Lyme. Lyme is facilitated by vaccines, mold, mercury, and other contaminants and actually makes the contamanents easier to poison you.
Trying to help you. Go ahead and don't listen and don't do your own testing and research at your very own peril. I am not a medical professional, just a Lyme victim doing all I can to survive and to have my life back. I hate seeing people suffer. You know the old saying. You can take a horse to water, but you can't make him drink. I am NOT a medical practitioner of any kind, but I am a scientist. I also hate seeing people suffer because ignorance, their own, and the collective intended ignorance of any part of any criminal medical profession.
thank you for that response. i will do more research on this. i've been struggling for about 7 years now. the only diagnosis i've received is for depression, adhd, cfs/me and sleep apnea. i'm currently treating sleep apnea but i still have a lot of issues, mostly with fatigue, blurry vision, motor and cognitive issues and memory problems. i'd gone down the lyme path years ago and was told by 3 different doctors that is not what i had, but they also basically pumped me full of ssri's that only made me worse. i'm going to discuss this with my new neurologist who has been the first doc in 7 years to actually help me. thanks again for you comment.
Is she a scammer?
Why do you say that? That's what I thought too but interested why you think this.
@@MP-uo6qd She's currently missing. She is one of the fiercest and most effective advocates the ME/CFS community have. She had a spinal fusion and her symptoms diminished hugely. Maybe have a look at her info on twitter.
I don’t believe anything this woman is saying
I suffer from this disease and it does appear she is playing this up just a bit. It is a real disease, and the symptoms are real but after watching an clip from her documentary it does appear she is playing it up.
that is my opinion, but I do believe her.
i don't think so. u n she r not 'the same.'
u would not be saying this if u were in her shoes. how clueless u r. ignorance is (a-hole) 'bliss...'
I hope you get it!
I hope that if you ever have a misunderstood medical condition like ME/CFS that you DO NOT encounter some one like you!!!! This condition ruins lives and people like you need to get educated before they speak.