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


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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  1. Nice video content! Apologies for chiming in, I am interested in your initial thoughts. Have you tried – Dinanlinson Rebooting Health Approach (probably on Google)? It is a smashing one off product for getting rid of chronic fatigue syndrome without the headache. Ive heard some unbelievable things about it and my friend after many years got astronomical success with it.

  2. Thanks for the Video! Sorry for the intrusion, I would love your initial thoughts. Have you ever tried – Dinanlinson Rebooting Health Approach (google it)? It is a smashing one of a kind product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some super things about it and my old buddy Taylor at very last got great results with it.

  3. My friend took medicines from many doctors but could not get positive results for his chronic fatigue syndrome. He came to me and on seeing his condition I took sympathy on him and took him to Planet Ayurveda and they gave him Chandraprabha vati and Ashwagandha capsules and he retained his health within a few weeks.

  4. All in my head, lupus, ehlers-danlos, hypochondriac, just like going to the Drs. I have never heard so many Drs say I don't know, and leave it at that, being ok with that answer. Blows my mind. Not even sure why most of these Drs became Drs.

  5. We are poisoning our bodies with gmo foods, chemicals in cleaners, medicines and pills we dont needs, gels and skin creams that we slather on that the liver has to process etc etc this is what is causing all the autoimmune.

    I was reading an article and it said that women are more prone to getting autoimmune because more chemicals are marketed to them –make up that isnt tested for health, finger nail polish, skin creams, birth control pills that disrupt natural hormones, hair dyes ( they are finding now that hair dyes can cause some cancers) and the list goes on. We are paying for big pharma and places like Dow chemical to kills us.

  6. There are comment replies for everybody except me. Thumbs up for everybody except me. I am invisible. Why was I even born? I have no food. I am homeless.i have no one.

  7. To all my friends who suffer from me, these have helped me gain a lot of energy after suffering from me / cfs for a few years
    1. Co enzyme q10
    2. Magnesium & Zinc
    3. Dribose (check shine protocol)
    4. Strong probiotic
    5. Low dose naltrexone
    6. Omega 3,6,9 supplement
    7. Vitamin E
    8. Vitamin D (it's usually low in people with cfs)
    9. Also check ebb sleep device approved by the FDA, helps with insomnia
    10. Curcumin with bioperine
    11. Nutritional yeast.
    12. Olmesartan medoximil
    13. Go keto reduce carbs completely.

    This has helped me live a near normal life and hope it does help all of you.

  8. Just wonderful, been searching for "myalgic encephalomyelitis" for a while now, and I think this has helped. You ever tried – Diyadelyn Ziyily Idea – (just google it )?

    It is an awesome exclusive guide for getting rid of chronic fatigue syndrome (CFS – Also known as myalgic encephalomyelitis or ME) minus the hard work. Ive heard some unbelievable things about it and my mate got great results with it.

  9. Cops also need to be educated! I have this, I am homeless. I've been bouncing from motel to motel for the past 15+ years, often having to move every 28 days until I ran out of motels. Recently, I starved for 3 weeks, I had no food. Finally 2 weeks ago, after I had the flu, I was able to drag myself to the store got there 7:30 am. Long line. I cannot stand in line. I talked to security who called the cops on me because he demanded my "disabled card" to let me in. Of course, I don't have one, having bounced from free clinic to free clinic. I have been ill since I was 22. Well, I almost got arrested for starving.

    I showed the cops how loose my pants were, now 2+ sizes too big still they would not help me. I told them I had no food for THREE WEEKS! They told me the mgr didn't want me to shop there. and I had to go: they would not drive to a store. This is the only store closest to the motel, several blocks away: I barely managed to get there. So I got on the phone told them I was calling the NEWS, because it's all B.S. the COMPASSION, the "HELP OTHERS" just for show on the news giving food away to people in Lexus and SUV and there is never anything for me to eat or ANY help whastoever! When I've called hotlines they don' believe me and tell me to call mental health services. 🙁

    When the cops saw me dial for the news, finally they let me get my food. Now it's been 2 weeks. I have almost no food again. I ate it all! I can't go thru this. I never know when I have energy to go anywhere. Living in a motel is brutal and being brutalized by cops. I can't take it anymore. And unlike this lady, I am old, I am ugly and I am alone with no family and no friends. I come from child abuse and I also have severe PTSD and can't stand people touching me.

    Before I went to the store, I tried to get help I have no one. No family, never had any friends. I called the local food bank. I explain to them that I'm celiac and special food needs due to severe allergies they would not help me. I called the fire dept: same thing.I called every charity: all they do is give me a phone number of another charity. It's a merry go round of phony charty numbers who refuse to help but are quick to take your money. Homeless shelters I can't be at due my severe allergies and I'm bedbound: they kick you out in the am and come back past 6 pm have to attend meetings etc. I am exhausted and scared. I have no one to help me. I can't contineu like this.

  10. Kudos for the video content! Forgive me for chiming in, I would love your thoughts. Have you heard the talk about – Dinanlinson Rebooting Health Approach (should be on google have a look)? It is an awesome one of a kind product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some decent things about it and my old buddy Taylor finally got great success with it.

  11. Nice video content! Apologies for the intrusion, I would appreciate your opinion. Have you considered – Dinanlinson Rebooting Health Approach (google it)? It is an awesome exclusive product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some super things about it and my close friend Aubrey at very last got excellent success with it.

  12. It irks me beyond belief that doctors are so quick to say that physical symptoms that they can't find a diagnosis to is "just anxiety," "psychosomatic," or "conversion disorder," or to hear them say "it's all in your head." Just because a doctor is UNAWARE of a physical diagnosis doesn't mean that a diagnosis doesn't exist! I am a RN who hopes to continue on to become a nurse practitioner so I can help people with undiagnosed chronic diseases and LISTEN to and VALIDATE them.

    I had been tossed around by many specialists who all said that I'm fine, other than my neurologist who diagnosed me with conversion disorder. Thankfully, my functional medicine doctor listened, ran labs (which came back abnormal), and diagnosed me with a newly recognized disease called Mast Cell Activation Syndrome (MCAS). I have started to read "Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity" by Lawrence Afrin, M.D., and it is the most validated I have ever felt in my life. If you are having "mysterious," "unexplained," or "bizarre" symptoms that doctors can't seem to diagnose, look up MCAS (different from Mastocytosis) and see if that might explain your symptoms. Most doctors have never heard of MCAS, so if you suspect that MCAS may be responsible for your symptoms, also look up the associated labs to diagnose the condition (a blood test and 24 hour urine) and ask your doctor to order them.

    Hang in there! You are incredibly strong! Knowledge and education is power, so learn as much as you can, and advocate for yourself. And for all you that have been suffering for years just to hear doctors repeatedly invalidate you and put you down: I believe you!

  13. Been suffering from CFS and every primary doctor I've had kept saying CFS/fibromyalgia isn't real. I'm tried of trying to find a doctor who will take me seriously. Only relief I've got was from my rhuematologist that gave me LDN which helps the pain and makes it manageable but even the rhuematologist doesn't believe in CFS and tells me to follow up with my primary doctor because there's nothing they can do. My doctor gave me Adderall and it really hasn't helped with the major fatigue. I read they had successful trial studies with the use of Xyrem to treat CFS/ME but the FDA denied it and only approved it for narcolepsy. I wish the FDA would approve Xyrem for CFS/ME, we need all the help we can get. It's not fair narcolepsy can have access but not ME/CFS. I have a feeling because most doctor's don't believe in CFS/ME that the FDA won't take it seriously as well. It just baffles me that they had success with xyrem in trial studies for CFS/ME but yet they still deny it?! Why would they?! Ugh

  14. i might never understand how she feels as i was diagnosed with juvenile R.A. right off the bat (i was diagnosed when i was 22 and it's been almost 6 years since), but you can't tell someone it's in their head when they have a fever of 104

  15. This is a brave woman. She climbs a mountain every day. How would these debilitating symptoms NOT affect anyone’s mind. How would not being able to do normal small daily things you take for granted every day, NOT affect anyone’s mental state. Given what she deals with every single day, and still being able to share her story, she shows that she has a remarkably strong powerful sound and intelligent mind.

  16. Doctors don't know what I have in my country, and I have all these symptoms; body weakness, body pains, gastrointestinal problems, problems with my urinary tract, dizziness. Makes me want to give up to drink or eat because I feel weak regardless. What is the purpose of food if I don't get energy from it and no i don't only eat carbs, I eat proteins and vegetables as well and lots of fruits. I always question if I'm lazy but I literally feel so weak. I bleed almost everyday or every other day and it's frustrating because I feel like I can't control my moods.

  17. The male to female ratio for CFS is 1 to 4. An identical ratio to that of Munchausen's syndrome. May-be there are psychological issues at play here as well? Perhaps there’s
    a combination of physiological and psychological factors?  How do we explain that CFS was unknown to medical science until just 80 years ago? What happened in the thirties and forties when
    the first cases were reported? Why are recorded cases now increasing? How do researchers account for females comprising the majority of sufferers? To dismiss there being a psychological element out-of-hand is a mistake in my book. Every stone needs to be turned-over.

  18. Inspiring. As I was feeling sorry for myself this came along. Wishing you all the best and improvement day by day

  19. I will alway remember the way my doctor looked and me and said that's not normal we will figure it out. Took 6 months but diagnosed with Chronic Lymes. Treated and while I can't afford to continue the natural path treatment I'm functioning just can't find a doctor with my insurance that knows anything about it! Just insane.

  20. Thank you. I am dying inside. No one can figure what’s wrong with me. They keep pushing me off to this doctor and that doctor. I’m so tired of being in pain. Thank you

  21. Nice Video clip! Apologies for chiming in, I would love your opinion. Have you heard the talk about – Dinanlinson Rebooting Health Approach (should be on google have a look)? It is a great exclusive product for getting rid of chronic fatigue syndrome without the normal expense. Ive heard some interesting things about it and my m8 after a lifetime of fighting got excellent results with it.

  22. Lovely video content! Forgive me for the intrusion, I would love your initial thoughts. Have you ever tried – Dinanlinson Rebooting Health Approach (do a google search)? It is a good one off product for getting rid of chronic fatigue syndrome without the hard work. Ive heard some unbelievable things about it and my work buddy got great results with it.

  23. According to the specialist Chronic Fatigue Doctor, my recovery so far from severe ME/CFS has been somewhat miraculous (I know every case is different, but i hope my story can give some hope).

    I'm a 22 year old male and I've had ME/CFS for nearly a year now.

    Before I got sick, I was in the gym 6 days a week. I could run half marathons without a second thought. My resting heart rate was 46bpm. I've never smoked. Never done any drugs and drank alcohol once a month (if that).

    I was hospitilised with severe tonsilitis 10 months ago.

    After being discharged, my health slowly declined over the next 6 months to the point where i lost 14kg bodyweight. I was bed bound, sleeping 16 to 18 hours a day. If i ate anything more than a bowl of soup, my body would go into paralysis for 30-60 minutes. Every time i got on my feet i felt like vomiting. My whole body would ache to the bone 24/7. I had brain fog, difficulty speaking at times, tinitus so extreme it felt like my head was going to pop, headaches and no mental stimulation because any form of concentration made me sick.

    My parents spent thousands of pounds on doctors fees, specialists and every blood test available but there were no abnormalities/ notible results.

    I thought my life was over because of the lack of answers and became depressed. I admitted this to a doctor and infuriatingly, they then blamed my illness on mental health issues. It was only recently i got my official diagnosis.

    Nowadays, i'm back in the gym and can run 3/4 miles on a good day. I'd say i'm about 70% right compared to what i used to be but i'm getting stronger each week.

    I can't pinpoint an exact thing that sparked my recovery, but i believe there are a few significant factors.

    1) Mental wellbeing. I read that having (understandable) poor mental health while chronically ill can amplify symptoms by 600%!
    I then escaped my depression by imagining my worst enemy was torturing me, pressing a button which triggered all my symptoms so he could laugh at me. Sounds silly, but instead of dwelling in self pity, i changed my mindset to "i'm not giving him the satisfaction". This completely changed how i looked at my illness. Instead of a massive, ominous burden on my life, i saw it as more of a sick and twisted contest/competition.

    2) Diet. Processed foods triggered my paralysis. I kept my diet as clean as i could possibly make it.

    3) Chinese medicine. I was lucky to have a local doctor qualified in chinese medicine. I am still having accupuncture and cupping to this day. She also prescribed chinese herbs (tea) which i also took throughout my recovery.

    4) Exercise within your limits. (The one i was least disciplined with) My eyes start going blurry when i'm reaching my exertion limit before eventual crash, so i know my parameters. Set loose targets depending on how you feel that day. Could be walking 10 yards. Small victories.

    I'm far from an expert/doctor. I know every case is different. I'm just speaking from personal experience of recovering from ME/CFS. I wish you all the best of luck with your recoveries.


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