Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects we don’t fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.

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40 COMMENTS

  1. I've gotten so frustrated with doctors telling me that they "think" its this or that but here try these drugs, no try these drugs, each time I'm a little more damaged by the side effects. I wish doctors were like Dr. House on TV, not the drug addiction part, but he REALLY investigated the patients with weird or uncommon illnesses. Most of my docs are just like ok, next patient. This video gives me so much hope, thank you for sharing.

  2. Even the NIH in the UK know there is a HUGE correlation of ME/CFS with Lyme Disease. Look in their study, they will include a group of Lyme Disease victims, as often after a tick bite the person gets Fibromyalgia and/or ME/CFS and they share 99% of the same symptoms, but the differences between them is what distinguishes the label. "The first phase of the study includes 40 people with ME/CFS, as well
    as 20 who previously had Lyme disease and another 20 healthy controls.
    The participants are undergoing a huge battery of tests, including sleep
    studies, different types of MRI scans and very detailed metabolomics
    and proteomics, which are studies aimed at identifying the functions of
    genes. Subjects will also receive immunological testing on all
    biological fluids and extensive testing following an exercise challenge,
    when ME/CFS symptoms become most pronounced. The current
    hypothesis, Nath says, is that, in contrast to people with normal immune
    systems that act to quell an infection and then subside, there is "a
    subset of individuals whose immune systems overreact and do a lot of
    collateral damage.""
    Look for the article called, "
    NIH Study Aims To Unravel The Illness Known As 'Chronic Fatigue Syndrome"

  3. Jennifer, you are telling my story! My diagnosis is different than yours. I suffer from Chronic Lyme Disease – a disease many doctors don't believe exists. Thank you for sharing your story and giving everyone out here hope!

  4. All disease have causes which are …..nutrient deficiency & toxic overload which suppresses the immune system. All viruses are curable ! 
    Most people are walking around dehydrated. We should be drinking 1 gallon per day of pure homemade distilled water which cleans inorganic minerals from the body & it cleans heavy metals, BPA & toxic fluoride from the body. When you are injected with toxic vaccines containing aluminum, mercury, formaldehyde & endocrine hormone disruptors you are suppressing your immune system allowing many potential diseases to happen. Distilled water does not leach organic minerals & guys like Dr Mercola who says it does are shills for Big Pharma.
    Avoid processed sugar, artificial sweeteners, processed dairy & definitely avoid all harmaceuticals !

  5. Jennifer, I live since 1987 with Behçet's disease (BD). It took my physicians 7 year of misdiagnosis's and often ridicule before this diagnosis. My story sounds similar to yours. You mention MS and some other diseases. BD, MS, Crohn's, and Celiac are treatable with special diets. For more info read on the web the back cover of my book BEHCET'S DISEASE/THE DIET SOLUTION. You find more info on diets under "Life Style Medicine." My best wishes!

  6. I don't have what she has, but I can relate from having an unknown mental/mood condition that started when I was 18 years old and for which I randomly found the cure at age 35.

    I suffered from an insidious condition that made my everyday life feel as if there's a permanent sinister, malicious, nihilistic, disturbing, unsettling, futile nature to life which is always present, while awake. It's also especially present when asleep in having the worst nightmares my mind was capable of inventing on a nightly basis.

    This unnamed condition started in my teenage years and persisted for most of my life. I imagine it's the product of some chemical imbalance or deficiency, but don't really know and there hasn't been a doctor who's investigated it yet. Frankly, many doctors seemed skeptical and were eager to lump it among more popular conditions, to put it in a box mostly due to simplicity's sake, like depression or disassociation disorder. I'd say that while those might be elements of the larger condition, none of them were the thing itself and that this was something both larger and different. This condition was something I never grew accustomed to and it prevented me from having a normal life or being happy like I knew normal people could often be.

    But, in my search for a cure, one day I took a chance and discovered the solution: opiates. As a responsible adult, I began using them to self-medicate and it worked in balancing out whatever was causing the dreaded condition. I started with codeine extracted from over-the-counter pills, and used this method for a number of years. But, it had some unfortunate mood side-effects which were unsuitable for long-term usage.

    However, I then tried methadone, which is a synthetic opiate and it was absolutely. 100%. perfect. It does not produce a high, is non-addictive and has properties that are the reason it is used to safely treat opiate addiction. As a Canadian, it is prescribed for free by doctors through a methadone clinic, which is supported by the government. I have used it for many years and has made every day feel like life is now normal. Of course, life has many ups and downs – far from perfect, but that's natural.

    Anyway, since then I've felt I had a moral obligation to spread the word of my discovery because after living in a state similar to that of being stuck in a nihilistic cage year after year, decade after decade it felt way worse than the thought of death and something I'd find difficult to wish upon my worst enemy. By the way, if I were to skip a dosage even today, the condition returns, which is always lurking and preceded by the nightmares.

  7. I personally have no experience with ME, but the bit about hysteria/"conversion disorder" hit me hard. I saw 10s of specialists and was told I was fine and that my problems were in my head, I saw a therapist who also said this. I gave up trying to get a diagnosis and started to believe them. I got physically a lot worse until I ended in A&E one day. I there was diagnosed with an aggressive brain tumour and lupus. It's reassuring to know I'm not alone, but it's so awful to see others having to suffer as well. If anyone reading this is ill, diagnosed or undiagnosed, I wish you the absolute best of luck – don't give up!!

  8. Jennifer you spoke to my soul! I can not figure out how to research what Dr.'s will not navigate to resolve. Night #4 without any more than 3 hours total in 5 days and 4 nights and gotta go to Dr via driving by 11am… SIGH. I am crabby, eyes are so blurry I can not see. Body hurts, feverish flushing… WHY WONT MY BODY SHUT DOWN?!! If I get rid of all electronics and remove the distractions of them, I get anxiety over every noise I hear, the mice the cat may bring to bed like the other night, oversleeping, life, purpose, medicals, medicals, family, medicals…. etc. I have meds for anxiety but I will not take more than prescribed. When they do finally kick in it is hours and hours later about when the sun is coming up and my body shuts down and reboots off 3 of less hours of sleep. I am losing sanity over this and my body is dissolving! I need a Dr. to make me better, not just my labs! Can you help by helping me advocate towards proper relief? You describes me nearly to a T.

  9. Doctors don't always listen. I just turned twenty and I just had my second kidney stones. The doctors haven't told me anything except to eat better. I need to drink more. They took 2 tests. All they thought to tell me was to lower my calcium intake and double my liquids. Maybe one day doctors will listen.

  10. Not given up yet?   This condition can be fixed even though each set of parasites are different for each of us who suffer.  there are ways to determine what you are dealing with whether viral, fungal, bacterial, amoeboid, protozoa, worm….   After 2.5 years turning over every stone and uncovering where the doctors failed, I know I can help others.    Even if you went broke seeing all the doctors who didn't help.    You (or someone you know with CFS/ME/PVID) can find the hope you need.    Message me if I can be a brother and coach to you on this.      ** Currently in full remission with a new lease on life that I want to give to you.**   This video got me through some of the toughest times.

  11. Thank you, thank you Jennifer. I have had CFS/ME since 1988. I have had good periods of improvement (a graduate degree and meaningful work) and bad (a mental breakdown and total disability.) Yearning for my lost life work and learning to be thankful for my many blessings. I know this probably took a lot for you. But every word you spoke is true, and valuable, and hopeful. And hope is what sustains me now.

  12. Wonderful talk! I started crying when you made the single statement that your brain doesn't function like it used to. I have the same issue. It's hard enough when the body is "falling apart", but much harder to have your cognitive functioning going downhill from what they used to be. By the way, I can't not mention it, but it looks like you might have a thyroid nodule or something similar going on on your left side.

  13. Holy cow! I've seen dozens of TED talks over the years and not a single one was as passionate and deserving of attention as the plight of those fighting the establishment on whether on not the disease they suffer through on a daily basis in contrived or in fact a mystery disease. I, too, believe I have something seriously wrong with me as I feel constantly bankrupt of energy. I, too, have been considered to be either an alarmist psychosomatic or mentally compromised individual. But damned if any doctor believes I may genuinely have CFS or ME! This Jennifer Brea showed remarkable courage to wheel herself in front that audience and brave the cruel cultural backlash so common to those believing in yet un-diagnosed conditions.

  14. My mom had something very similar (though a bit milder) a few years ago. None of the doctors could help her, until she went all the way from Germany to a doctor called Gilbert Glady in Colmar, France. He told her that he had a lot of patients with similar sympotms and that in most cases, a specific form of the Epstein–Barr virus caused them, and his treatment finally helped her get back to her normal life. Since I do not know much about the topic, I can't say for sure whether what she had was actually ME or not, but just leaving this doctor's name here in case it helps someone somewhere.

  15. Wallahi I had the same disease for the whole month of Ramadan since the begining. I made a prayer to Allah to cure all the ill believers with this disease. I kept praying and praying for the whole last 10 days of Ramadan and I was cured on the day of Eid.

  16. Yeah good on her u soldier but how is it sexsit men get told to walk it off and grow up women are told you are over dramatic it's the same thing isn't it u are amazing no doubt and u are an inspiration so I know I'm going to get a lot of hate but that is MY virtict and I believe that sexisim is not a factor in my eyes. I may be rong. I

  17. Thank you for your courage Jennifer. I can't help but wonder as you were telling your story if this may have been vaccine related.? Maybe? Just kept going through my gut. I wish you well and thank you!

  18. I've had this disease for over 13 years. I am a shadow of my former self. I was a nurse with aspirations of working in a 3rd world country, an athlete, artist, avid reader of books & single mother. I suffer from severe pain, continuous headaches, extreme fatigue, weakness & cognitive issues, but what I suffer from the most is that my family refuses to acknowledge that I am sick with this diagnosis that 2 different doctors have given me & make snarky comments on how I should just get a job! Out of sheer desperation to save myself from deep depression & despair I started on a spiritual journey that began with reading about meditation & Buddhism but has grown into further avenues from there. Just want to sincerely thank YouTube & Eckhart Rolls, Mooji, & others of a similar vein: you have saved my life & given me hope & meaning through my suffering. Namaste.

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