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Travel Insurance Uk Lupus : What happens when you have a disease doctors can't diagnose | Jennifer Brea

Travel Insurance Uk Lupus Video

Travel Insurance Uk Lupus

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

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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16 Comments

  1. At 19 for just over a year I've been so tired I rarely get out of bed and a trip to the grocery store or 15 minutes in a swimming pool make me need to sleep for hours, over the last couple months I haven't been able to eat because I vomit and feel sick, some days I sleep 18 or more hours and some nights I can't sleep at all reduced to tears because I'm exhausted, the muscle pain makes it hard to even want to reposition myself often, I've started blacking out when I stand and at 3 am I laid in bed sobbing over this video because all the tests they run keep coming up negative and I'm just being told it's all in my head but I want so badly to get up… its hurting my relationships and future

  2. i feel so bad for her, the medicine of the west has become a ivorytower on cloud 7, wich thinks they know everything and ignore the rest…. plus the time they take for patients get lesser and lesser, its more like work the people down, then to help them…. only can hope in future they can help those poor people..

  3. It has been one year to this day that I had to stop working due to a mysterious illness. We think it is ME. This video gives me hope. Thank you.

  4. Thank you for helping me learn more about my chronic fatigue syndrome(most folks think its only extreme tiredness).Two hours of intense energy spending (aka laundry or running errands) will put me in bed for a week or more.I also have rhuematoid arthritis and fibromyalgia( I have had all of these since I was 12 years old ).I was hit by a car when I was 11 yrs old.

  5. I’m a neuro nurse who’s (secretly) suffering with mild/moderate CFS/ME, and I almost feel like a secret/double agent. I’m lucky I’ve gotten better and manage to work some now (although it costs me a lot and cuts down on my social life/life in general). The brain fogs are especially challenging. But what’s been really devastating as a nurse and ME sufferer, is seeing how incredibly unfair gender bias in healthcare is towards women, and how much harder women have to fight to have their health taken seriously (myself included). For years I was told my fatigue was depression, and I probably believed so too — trying everything from CBT to group therapy to several SSRI’s without any real effect, and blaming myself when it didn’t make me better. It’s so painful working and seeing women being admitted with chronic headaches or numbness or fatigue or fits and being dismissed by the (often middle aged, white) neurologists when their first rounds of tests come back normal. They’ll even joke if it’s a young woman that she probably has some buried trauma and it’s most likely a "functional disorder". It just makes me want to quit my job. Yes – sometimes it is, but that doesn’t make it any less real or difficult. And sometimes, later, the young women will be re-admitted and they’ll reluctantly do another round of tests and discover epileptic activity during the EEG or white scars on the MRI or intercranial hypertension — and I almost feel relief. I remember one young female patient who was extremely anxious and skittish, and the attending who was very clear he thought it was psychosomatic. And then the MRI revealed a malign tumor. I also remember a young women who we ran dozen of tests on, several times, whom all came back negative and she was diagnosed with "functional disorder". A few weeks later she committed suicide. I know I’m not directly responsible, but I still feel a pang of guilt whenever I think of her. I so hope one day we discover a biomarker of CFS/ME and other unexplained diseases like fibromyalgia. And I hope one day the stigma of diseases like that, and psychosomatic ones, become a thing of the past. I also think it’s essential all health care workers educated themselves on "unexplained diseases" and gender bias in medicine. For instance I recommend "Is medicine killing young women?" by Dusenbery, "How doctors take women’s pain less seriously?" by Fassler, and "Your pain is not real: How doctors discriminate against women" by Marthe.

  6. Super power Woman you is Jen💪 I have suffer for many symptoms, for about 7 mounts, im from Denmark, and all the doctor says almost, Im metal ill, its so wrong! I also get high fever from a herrible viral infection, my brain is diffently not what it use to be! C-vitamin has a effect, I hope it will contenue, becourse this desease killing me, and suicide thoughts is there often.. But also hope!

  7. Apparently brain scans of different varieties have all found that ME patients (or all folks sharing the same symptoms) have abnormalities in brain-function: Apparently Brain scans of different varieties have all found that ME patients (or all folks sharing the same symptoms):

    https://me-pedia.org/wiki/Brain_imaging

     So anyone suspecting they or someone they know has this disorder should mention the research to their doctor, and request such a scan. This can then be used to back up your claim for insurance and such.

  8. M.E. needs it's own Michael J. Fox to gain some traction like he's done for Parkinson's disease. Although that statement is kinda sad.

  9. I can clearly remember a pediatrician saying to my mom "She's kind of a hypochondriac". That has stuck with me my entire life and I have always convinced myself that I was overreacting and would have so much anxiety about telling doctors about any symptoms I was having. Last year I went to my doctor because I had been feeling terrible for weeks and walked out with a diagnosis of acid reflux. I thought "I must be so over dramatic if I'm feeling so terrible about acid reflux." A few days later I was in the ER in diabetic ketoacidosis and found out I have Type 1 Diabetes. Believing people when they say that they do not feel okay is so important. Thank you for shedding light on this.

  10. To those who don’t know: Jen has made a complete recovery, after they discovered that her ME symptoms were due to compression in her brain stem.

    The rest of us, the millions missing, are still waiting for proper medical care. I’ve been stuck in bed for five years and counting.

  11. Ugly hair do. Very distracting. Cannot think about what is said. Doctor always says, “I can’t find anything wrong with you, therefore it must be psychosomatic.” I ask what’s that? “You just think you’re sick. You are not really sick.” It took 38 years of excruciating pain to finally find out what was wrong. Then it took a 4 hour and 20 minute operation, and about 2 months of recovery, and the pain was gone.

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