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What happens when you have a disease doctors can't diagnose | Jennifer Brea

Posted on November 26, 2020 by admin



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.

TEDTalks is a daily video podcast of the best talks and performances from the TED Conference, where the world’s leading thinkers and doers give the talk of their lives in 18 minutes (or less). Look for talks on Technology, Entertainment and Design — plus science, business, global issues, the arts and much more.
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39 thoughts on “What happens when you have a disease doctors can't diagnose | Jennifer Brea”

  1. Donna Rupert says:
    November 26, 2020 at 4:56 pm

    Yay 😁 Jennifer 🙋🏽‍♀️💕God bless you always

    Reply
  2. Jane Doe says:
    November 26, 2020 at 4:56 pm

    I have been ill since 2014. I saw a Dr recently who told me I was stressed. So being unable to walk in a straight line, blurred vision, pain, exhaustion, heart rate up to 185 bpm while sleeping, exhaustion, tremors and pain. My mother was Tod it was all in her head and she has Polymyocystis.

    Reply
  3. Audi100C3 2.4 I5 says:
    November 26, 2020 at 4:56 pm

    Holy smokes DAISY RIDLEY???

    Reply
  4. Jan Maria Blackwell says:
    November 26, 2020 at 4:56 pm

    Well done Jen for having the strength to speak out… and you did it so well.

    I recently had a conversation with my neurologist. He wasn't the neurologist who diagnosed me with FND but he was part of the team that agreed in an MDT meeting that this is what I had. I asked him "What was the point of a diagnosis that would leave me in limbo with no further investigations?" and I told him "Medicine practiced without either science or humanity is useless and as a professional, you should be embarrassed".
    After my diagnosis my symptoms got progressively worse very quickly. Doctors turned me away. One doctor even suggested I try meditation. I had anaplastic large cell lymphoma, a high grade blood cancer that was killing me but with FND on the top of my medical records, doctors could disregard me without any accountability.
    The neurologists now admit they made a mistake but have stressed that this was only their opinion at the time and not a diagnosis!
    FND/ME/CD is and often can be a dangerous diagnosis.

    Reply
  5. One Life says:
    November 26, 2020 at 4:56 pm

    I thought she got healed , after she made the film Unrest,
    She even being interview and shared that it's so good to be normal again.
    I have it t for ten years…..costing more and more money…to hire carers, because my husband suffer depression from my long term illness. Please us a cure! Doctors

    Reply
  6. FGC Domo says:
    November 26, 2020 at 4:56 pm

    Do the extremities vary? I'll go to work tired and when I get picked up by a parent or friend I get a mood change I get quiet and feel irritable but i feel better after a couple of hours and repeat the cycle next dat

    Reply
  7. Nina M.S says:
    November 26, 2020 at 4:56 pm

    Maybe some devil effect try read the qouran and heal by the qouran

    Reply
  8. Federico Finetti says:
    November 26, 2020 at 4:56 pm

    What I expect, very sadly, is that medicine will never learn from past mistakes. What was done to MS, has been done to ME/CFS and now to long-covid. Medicine assumes too often to know everything. Medicine way too rarely challenges assumptions. Doctors seldom apply the scientific methos, especially in pseudosciences like psychology and psichiatry. I guess this is a consequence of the arrogant human behaviour. It's a shame that the probably most important field for humanity, medicine, still does not apply scientific rigor to its theories. Reality is that we still know very little about pathofisiological mechanisms in the human body. As of now, absence of evidence (eg. of an illness) is very different from evidence of absence.

    Reply
  9. Joanne Lim says:
    November 26, 2020 at 4:56 pm

    As someone dealing with autoimmune thyroiditis and autoimmune hypophysitis, I feel her. Some days I can’t even do a 40 min dance practice without stumbling everywhere. Some days I’m always dizzy and my blood pressure would plummet to 80/55. Oh, the joint pain. And the pain in my lower back. It’s frustrating and does make you wonder, why?

    Reply
  10. Vanessa Tracy says:
    November 26, 2020 at 4:56 pm

    Believe me or not Herbal Medication will remain the only best way to get rid of many disease and virus that said to have no cure, i had herpes virus and my Dad was diagnosed of diabetes for 9 years, I never gave up in doing research on how to get my self cure of genital herpes because it was really terrible for me that i cry when ever i think about my past herpes life, The good news was when i accidentally came across a blog on you tube about Dr JOE (A NATURAL HERBALIST) on how he has been curing many disease and virus with his herbal remedies that are natural liquid herbs, i immediately copied out his contact mail ( dr.joeblessed@ gmail . com) and ordered his herbs for both me and my dad, to my greatest surprise ever DR JOE got me and my Father CURED in the space of 1 month after using his herbs for three complete weeks and my dad blood sugar was normal 4.0 to 5.4 mmol/L (72 to 99 mg/dL) Once again all thanks to Dr Joe for curing and restoring health back to my family, Till date Dr JOE and my dad are best of friends for curing him, to whom it may concern should kindly mail him too on ( dr.joebleesed @ gmail . com ) (drjoeblessed.net )   CALL +234 (903) 4258471 WHATSAPP +234 (903) 4258471   https://www.facebook.com/JoewesternHerbs/

    Reply
  11. Adam Ahmed says:
    November 26, 2020 at 4:56 pm

    if you have chronic fatigue syndrome in the uk please sign up for this new £3.2 study launching in spring 2021 https://www.decodeme.org.uk/ they need 20,000 participants.

    Reply
  12. JackintheBox says:
    November 26, 2020 at 4:56 pm

    She didn't plug her movie. I forget the name right now but it's really good. Yes, it's called 'Unrest'.

    Reply
  13. Fozzy Bear says:
    November 26, 2020 at 4:56 pm

    Con job. Now she says she her ME is in remission. No such thing. You have been conned. She made a lot of money from this ME thing, and now she wants to get on with her life.

    Reply
  14. Aria Membreno says:
    November 26, 2020 at 4:56 pm

    I can relate to everything!!! Rare diseases are ignored and it’s not right. I have CRPS and told it was all in my head my 4th doctor finally diagnosed me

    Reply
  15. Erica Diebold says:
    November 26, 2020 at 4:56 pm

    Thank you for the awareness. I have POTS, rheumatic heart disease, and heart failure. It took years for doctors to believe me enough to order the tests that easily identified my diseases. I’m only 24 and have to use mobility aids and am mostly bed bound. I used to be an athlete. But I will find out a way to make it through each day and prove my worthiness

    Reply
  16. sri padmarajayurveda says:
    November 26, 2020 at 4:56 pm

    I have treated more than 300 patients suffering from chronic fatigue syndrome since last 5 yrs. and now I can say that I have cure to the fatigue syndrome. (99% sure for my words) I am an alternative medicine ( ayurveda ) practitioner from India. ( treatment duration 3 month approximately, rarely 5-6 month, but you will get relief surely ). If someone has the problem contact me: Rajul Kushwaha +919452789743 (call / message / whatsapp )

    Reply
  17. tyblips says:
    November 26, 2020 at 4:56 pm

    I think I need to bring this up to a doctor. Because I know for a FACT I have past trauma that I dont remember. Tho unsure why it's gotten worse NOW? But… I've been to doctors for a decade… they all day I'm fine on paper… but I dont feel fine, but im going through the motions to rule other things out because I dont know what else to do. But I'm not going to stop pushing, because either it IS in my head or I do have something else wrong. But bloodwork all comes back normal, getting my hearing checked next month, I need glasses but eye doctor said my overall eye health was good… but the other option I'm told by people I talked to WAS MS… from people who had it, because the early symptoms she had were what I have. I've considerd diabetes because it runs in the family but my levels come back normal in the glucose testing… I've had it done twice and tell them to check it when I get regular bloodwork. I've been diagnosed with ADHD so I dont even know if it's just anxiety or other issues making that worse? Or if it is something else. But I've had issues off and on my whole life it just got worse near the end of school when I realized I was absolutely fucked because of my struggling with ADHD and lack of support at school for kids who had disabilities but not the "severe handicap"… I just want an answer… if I have to feel like this at least I can tell people why I can't think straight or why I forget things I've done 1000s of times… I use to be able to pronounce bigger words and words in other languages easily with the help in figuring out the pronunciation, but now I forget the names of basic everyday things around the house :/

    Reply
  18. Sean Woods says:
    November 26, 2020 at 4:56 pm

    nick

    Reply
  19. listener says:
    November 26, 2020 at 4:56 pm

    Thank you. You are are a hero. I have struggling with this since 1991. You can get better. I did not have health insurance. I studied and learned. Changed every aspect of my life. And can live an almost normal life.

    Reply
  20. Troy Gardner says:
    November 26, 2020 at 4:56 pm

    It was easy to fix..for me at least.. Without doctor's. Worse I tried sharing the free approach with the associated website ( we are sentiments by sea water, biofilms are both pro and anti biotic (as I our life as a loud cloud of like mostly sympathetic organisms that have nothing to do with our human specie ( e.g. we are 98% Same as gorilla ( 500 word vocabulary) ..comparable immunity to impedences .. Between us and Nature as intended.. Homeostasis

    Reply
  21. Matthias Moxnes says:
    November 26, 2020 at 4:56 pm

    Our only hope is that people like her can spread the knowledge further, so the next generations with this illness can be better understood

    Reply
  22. kevin fuller says:
    November 26, 2020 at 4:56 pm

    Marcus Luttrel crawled like 3 miles with multiple bullet fragments in him.

    Reply
  23. Extra_V_I_C_C says:
    November 26, 2020 at 4:56 pm

    Well… just become a speaker. You seem to be doing a good job!

    Reply
  24. Dan White says:
    November 26, 2020 at 4:56 pm

    thank God she went online rather than listening to her doctor.

    Reply
  25. Lapin says:
    November 26, 2020 at 4:56 pm

    im hiroto from Japan and I also victim of CFS since this year
    sorry my english is not good. but I want to say I'm so moved this video and I decided to continue fighting this disease

    Reply
  26. nodoctoryet says:
    November 26, 2020 at 4:56 pm

    I wonder how many have ME in African, SouthAmerican, and Asian countries. That would be very exciting to know. Also the name of this condition is a huge misnomer imo. Should be called myalgic fatigue syndrome since there seem to be no encephalomyelitis.

    Reply
  27. I P says:
    November 26, 2020 at 4:56 pm

    Dear Universe I am suffering a lot and have been trapped this way for many years. I need to escape abuse too but wish my health, unemployment, lack of contacts and other limitations wouldn't stop me though. So I'm. 25 but typing from bed in agony, fatigue, suicidal wishes, depression, anxiety, unemployment, isolation dn many debilitating circumstances. One of which is years of, ignored by GP, extreme, chronic, debilitating, multiple times a day, daily, uncontrollable, fatigue, sleep attacks, waking or jolting awake in further pains, other pain, weakness and all the bad. This ongoing suffering has ruined my life. Please help me, England UK, whilst the whole busy world passes by daily I'm lying here rotting away in agony WHY. Please I am begging through tears, agony, fears and all the bad yet forced hope. I am a good person and I deserve much better. Please help me.

    Reply
  28. Dirk Katz says:
    November 26, 2020 at 4:56 pm

    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.Attention: radiation goes through walls, it can come from your neighbours.
    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 3 months without microwaves health becomes better.
    The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible.
    (Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.
    I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.Take everyday a vitamin D supplement because almost everyone have to little.(attention: it cures only CFS,not other diseases with fatigue)

    Reply
  29. godspeed says:
    November 26, 2020 at 4:56 pm

    God bless her soul. Despite the adversity life has thrown her way she still has the courage to smile. I dont know if Id have the strength to do the same in her position. she is very strong. This was a great tedtalk and hopefully more people can become aware of this condition

    Reply
  30. Emma 26.71 says:
    November 26, 2020 at 4:56 pm

    I'm a 17 year old girl. When I was 14 I went to the doctors with nausea, vomiting, fatigue and abdominal pain.They said it was anxiety or constipation, they prescribed laxatives. When I was 15 I started loosing weight rapidly and had very low electrolytes because I was sick so much. They said it was an eating disorder. I am now 17, being fed through a tube that goes down my nose into my intestines. When I am 18, they want to take the tube out because " If I want to vomit, loose potassium and loose weight, it's my choice (although eventually I'll die)". "It's all in your head" , " this place is for real sick people", "why don't you just stop?" . I've been referred to an eating disorders team 5 times now but they won't take me because they don't believe it's an eating disorder. The doctors are trying to get me on anti depressants now because I'm upset that nobody wants to help me and that nobody believes me. I met someone at school that believed me- a teacher. I spoke to them and confided in them. Now I'm not allowed to speak to them because I'm worrying them and they have a duty of care to report everything. People think that I'm doing this to myself. All the pain, fevers, vomiting, diarrhoea, constipation and other symptoms are all caused by anxiety.

    Reply
  31. Buckley Robin says:
    November 26, 2020 at 4:56 pm

    Grateful to @dr_ayeye for all his help for my life, my partner was having Herpes simplex Virus, and we were planing on getting married on early December, when we decided to get ourselves tested first and we found out that my fiancee was HSV 2 positive, my fiancee was so unhappy, because this was a barrier for us to get married, so i went out to search out a remedy for my partner, and it was so surprising how @dr_ayeye has has been a blessing and healing to the masses, after reading about his work on a blog I immediately contact him and he wrote back to me that my fiancee will be OK and that we we get married this same year, i couldn't believe it, after doing all that is needed to be done, i was surprise that after 2week of using his medicine my fiancee went to the doc and was diagnose negative. for more info contact his what app: +2347067379965 or email him drayeyeherbalhome88@gmail.com

    Reply
  32. Ken DV says:
    November 26, 2020 at 4:56 pm

    This should be linked to a campaign to fund research.

    Reply
  33. Vera Rose says:
    November 26, 2020 at 4:56 pm

    Dr. Umoru has the permanent cure for Herpes and many other diesase or virus, I was able to get rid of my Herpes after 5 years of trying different pills. Indeed Dr. Umoru herbal product are so real and effective you can get more information and help on Dr Umoru YouTube channel.

    Reply
  34. andrew a says:
    November 26, 2020 at 4:56 pm

    has she took a anti-parasitic? after traveling to many countries and then having fever of 104.7

    Reply
  35. Gary Winchester Jr. says:
    November 26, 2020 at 4:56 pm

    I just was diagnosed with CFS after being diagnosed with depression, anxiety and PTSD. I don’t experience symptoms on the same level as Jen or as most but it’s the most difficult thing I’ve ever experienced. I’m judged by so many, thought to be lazy and often told I’m not doing enough. Being a stay at home dad with CFS has been extremely difficult. I’m thankful for others who have pursued truth and science rather than being told it’s not real.

    Reply
  36. johanna luker says:
    November 26, 2020 at 4:56 pm

    In in tears.

    Reply
  37. jackie colon says:
    November 26, 2020 at 4:56 pm

    I have this it started when I was 24 my legs Started cramping the muscles got very Tight and it was very hard for me to walk as years Went by and I ended up getting on disability i Stay most days in bed

    Reply
  38. Anka Van Gemert says:
    November 26, 2020 at 4:56 pm

    I am only 4.23 minutes into this video and crying so hard. My 7 year old is laying next to me. It is as if you are talking about my life. I have been in a psychiatric hospital twice for 3 months each. 'Convulsion'. 'Trauma'. 'Nothing physical'. I am 42 now, a single mother. This is going on since I was about 17 and it gets worse and worse. It has ruined my life.
    You are very strong and brave. It must feel so lonely. Now I know I am not alone.

    Reply
  39. james Hunt says:
    November 26, 2020 at 4:56 pm

    OMG. This is so moving and having chronic fatigue myself, I can relate to everything she was going through. I actually cried after watching this. ;(

    Reply

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