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'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.

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.

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.

Severe Weakness. Is how I feel . Too weak to scratch my head. This illness needs to get more light!!!

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.

I was also diagnos with ME and it has ruined my life in every way

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.

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 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.

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.

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.

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😊

My doctor says there are no markers. I am immediately dismissed. I have crushing exhaustion. And many other debilitating symptoms.

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.

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.

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!

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.

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.

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.

Praying for answers! 🙏🏽

This was hard to watch, as I know Unrest will be as someone who’s life has been ruined by CFS/ME 😢

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 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

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.

There are millions of us.

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

The trolls seem to have died off.

I am not grateful for this disease. I could have accomplished so much. 23 years now. It IS an autoimmune disease.

Megan. Thank you.

I keep desperately looking for filmmakers that suffer from Chronic Fatigue and Chronic Illness (I have Hypothyroidism). It helps me keep fighting, knowing there's someone like me that keeps going everyday with their head up. :)

Plasmapheresis has helped me greatly with this and similar illnesses.

Watching Jennifer always gives me some hope to slog on through.

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.

Sometimes I wonder if our immunization process sits in our systems and causes a mutation that eventually causes systems in people. 🤔

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???

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.

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.

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?

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 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.

i'm ill but man that doc is beautiful..if anyone could cure me it would be her!

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.

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.

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 !!

She looks pretty good. Is she in pain? Does it hurt to move?

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.

I have been diagnosed with this finally. No cure yet

🤗❤️😢

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.

GO SEE THIS MOVIE. It will change your life. It did mine. And bring a tissue 😢

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’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.

Doctors are not gods

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

yep. me. sounds like you have lyme just like me its crap. keep smiling xxc

I had weird things like human growth hormone was really messed up...but was no longer growing ...so ???????????/

Please get tested for lyme disease

What it showed me I would gladly give back. In a minute!

HHV-6... look it up.

Unrest ……

Nazar değmiş

I suffer from ME and have very high heavy metal toxicity. Coicidence? Maybe, maybe not?

Lyme Disease.

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!!!

Chronic fatigue is often caused by Lyme disease and it's coinfections. Please look into this.

CBD and THC.

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!!!!!

Is she a scammer?

I don’t believe anything this woman is saying