What happens when you have a disease doctors can't diagnose | Jennifer Brea
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- Опубликовано: 16 янв 2017
- 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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I just wish Drs' wouldn't say, "there's nothing wrong with you". They should instead say, There's obviously something wrong. I just don't know what it is...
I say the same thing all the time.
Maria Arreola Yes. Just yes.
But if you have a cold... there's really nothing wrong with you. Humans get sick. We die. I think the perspective of thinking death is wrong causes much suffering. I don't get sick often, but when I do I say to myself "is that so." I would like to think if a doctor told me I had cancer, I wouldn't become even sicker with grief, but it hasn't happened yet so we shall see.
Their fragile egos can't take it being wrong.
Generally, doctors don't make such a claim as "there's nothing wrong with you". This isn't to take away from what's wrong with her, but I suspect she's paraphrasing for the point of her talk.
What's more likely is they told her "we cannot find any cause for your symptoms".
Reminder to anyone watching this who doesn't have this disease: not everyone with ME/CFS is going to be or look as severe as Jennifer Brea in her recorded footage. A lot of us are able to push ourselves to pretend to feel well around people, and then afterwards we crash for hours/days/weeks. If you see someone with ME/CFS looking well and walking around, that doesn't mean they're not ill. It means they're either hiding it or using an adrenaline rush to push. They also may have had to lie in the dark for hours or days to prepare before the activity you see them engaging in. And you have no idea how hard they may suffer afterwards when no one is around. Generally, when we're not pushing, we're crashing. Never make assumptions about someone's illness experience; instead, ask and listen and trust what they say. Unless they're a known pathological liar, there is no reason not to believe them. But also know that even when asked, we may downplay our experience as not to scare you or draw too much attention.
alison k
SPEAK GIRL...FINALLY SOMEONE WHO REALLY UNDERSTANDS. I am sending this to a few people who just don't understand.
Thank you 😊 Thank...you😍 I DONT LOOK SICK
aly k/ Great reminder. Reminds me of a lady with 5 kids, some of different races is in a check out line trying to figure out an EBT card for food and then some well off single 25 year old behind her comments that this is where my hard earned tax dollars are going and maybe she should have kept her skirt down with all of her many boyfriends and she wouldnt be in this predicament. She needed help with the EBT card, because she just took in 3 children as a FOSTER parent and has never used one before! Yes, things are not always what they seem...
aly k THANK YOU!
Great point that more people need to understand. There's so much about cfs/me that's difficult for us to explain & others to understand. Adrenaline rushes are so interesting to me. Without them I wouldn't survive but we suffer so much after they're gone.
Has been billed in the past as the Disease that never 'looked so good '
I'm going through this now and it is the most lonely place to be. "You're too young." "You look good." "You look healthy." I'm not a depressed person, but now I am.
Listen Surah "Al-Rehman" a recitation by Qari Basit Misri (without translation) 3 times a day for 7 consecutive days with closed eyes. Every time after listening take half glass of water, close eyes and say the name of tour "Lord" thrice in your heart and drink in 3 sips.
@@mahnoormujahid5359 stop god can’t help
So sorry. I have FND (“conversion disorder”). I’m homebound. I get the same things often
Sorry you go thru this
Just not forget about the "having kids" BS.
I have fibromyalgia, and when she had to stop, and said her brain isn't what it used to be, I cried with her! The biggest struggle with chronic illness is not being able to be the person you used to be. Most of us were active, vibrant people.
love from Argentina
I related to that pause so much😞 And the brain stuff is so hard to deal with! It’s impossible to imagine unless you’ve experienced it. I had a minor tbi many years ago. And the severe state I’ve been in for the last 4 months, reminds me of what I went through then.
Same i have fibro and i have all this symptoms also it is very similar. I cried also.
Yes.. 💯% right. I have severe Degenerative arthritis compiled with fibromyalgia. I have people at my church say to me "well you don't look sick" I smile and talk to people, but it's usually me pushing myself through a really bad flare. They don't understand by my pushing through my flare, I'm probably going to be down from exhaustion for days. It's never ending struggle to move and do things that people do without blinking an eye. Just taking a shower and washing my hair is exhausting. Many times my skin is so sensitive that the shower water hitting me feels like tiny splinters of glass hitting me. I try to explain my situation to people and I'm looked at like I'm crazy. The brain fog and misfiring is so frustrating that you don't want to be around people because they're constantly correcting you or they walk off because they take your pause in the conversation as ignoring them. It only seems to get worse with each passing year. 🥺
@@DannaK1207 I feel you hun. Its like i wrote this my pain is constant also. To cough or sneeze hurts my whole body i dont think i have a day off from not feeling something. I am a member of some support groups that really help me as you can read peoples status and interact with people who know exactly what we are going. As most doctors dont know nothing tbh
I live with this disease and know exactly how much this public talk would have cost Jennifer in the following days. All the more appreciation to her for making the effort.
I just kept thinking about this, Wondering how much this appearance cost her just physically, Just the energy that she had to put forward on this day. Not to mention the preparation on the road to it. How many days or weeks will the recovery be? We owe it to her to share it and be loud
It's been over 2 1/2 years so far for me. I can accept my disabilities but not being believed is by far the worst part.
🎯
Absolutely agree.
WERRDDD!!!!
Not being believed by the society, especially by very close ones and the health system causes an excruciating pain on top of the suffering one has to put up with.
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.
PCalyssa hi beautiful you are not a hypochondriac you are going to get through this!!!
Good luck 🙂
My doctor caused my acid reflux by medicating me for it for years with no results. I just discovered my thyroid and progesterone levels are very low. This is awesome because I now have a medicine but bc progesterone is a ‘fertility’ drug it costs an arm and a leg to get and I can’t hold a job. If you can find a new doctor that be,I ever you, do it.
You are not a hypochondriac. That is an ignorant thing to say and try to ignore it.
The thing is that your situation is proof that you have diabetes. It is also proof that your doctor might now have been very good (if you had undiagnosed diabetes as a child). That is NOT proof that hypochondria isn't real. This video shows hypochondria obviously is a very real condition.
@@davidwebb2318 I never said hypochondria isn't real.
I also have this condition. I can only hope that, now that lots of COVID long-haulers are having ME symptoms, we will begin to get the attention and help that we have deserved, all along.
I've heard for decades that ME possibly has viral origins, so it makes sense that covid could lead to ME, or a similar condition. I wonder if the body's immune response to a viral infection leads to inflammation, which then triggers symptoms of ME?
I think I have ME after COVID for sure, it’s not as severe as the first few month, I can work but it still sucks - really want to know what to do
@@xoxcxsxm - not sure, but as you are already feeling a little bit better, maybe you have Long Covid? It used to be termed Long Hauler Covid. Most ME/CFS patients don't feel a bit better after a few months. Keep researching & good luck!
@@jeff6413 the immunologist in the documentary UNREST mentioned that as well as a theory.
So there’s no new positive attention to ME, the only attention gathered is people saying that ME people are laaaazy! I used to have ME but then I grew up and decided not to be lazy anymore and I’m cured!
The really sad part is that no body cares until it happens to you or a loved one. Shows how human nature is
So true....and so sad. Compassion is but a dimly fading light in a very dark place.
And even if someone cares.. They just don't have the authority or financial condition to help. Those who do have are not willing to help others.
Even if they are a loved one, they don't care. Shows you that they never loved you.
Even then they don't always care and you end up on your own because they don't understand.
Lol, loved ones are the people who don't care
I was diagnosed with ME/CFS last year, although my symptoms began after I had viral meningitis twenty years ago. In the U.K., the only "treatment" is cognitive behavioural therapy (feeding into the established idea that the illness is psychiatric in nature) and graded exercise, which actually worsened my symptoms. I was a journalist before I became ill. Now I often can't find words as my brain doesn't work the same way. I am a single parent bringing up a four year old...I survive by going to bed the minute he does and while he is at preschool. I have no life beyond that and have been denied disability benefits on the grounds that if I can look after a child, I don't need help. I often feel like I can't go on, but somehow I do. It helps to know I'm not alone.
jollicrafts good luck with your child and continuing your life. I hope your child grows up as strong as you are.
I'm sorry to hear of how much you are struggling. I know it is difficult, but I suggest you appeal your benefits decision. Get legal help if you can. As a society we cannot let people like you struggle on alone. It isn't right.
Your treatment is likely a result of the PACE Trial, which for all intents and purposes appears to be completely bogus. I can't help but think that sufferers will end up having to take class action over this at some date in the future.
jollicrafts I am sorry for the injustice of being denied disability benefits. The world has to change for the better, and it will.
Graded Exercise Therapy is a complete farce, and is only administered in the UK as treatment for ME because of the PACE trial, which was incorrect in so many ways.
I was diagnosed over a year ago - my diagnosis was said so flippantly and matter of fact, after years of symptoms and being told it was in my head - 'you have fibromyalgia and M.E, heres a leaflet and i suggest the support groups' That was it... That was how my life changing diagnosis was given to me. I cried watching this. Bless all who have 'invisible' illnesses.
What specialty doctor diagnosed you? My pcp doesn't even know who to refer me to.
Same. Printout and referral for cbt🥺
Me too.
❤
Today doctors label everything as stress :(
Right. As though stress didn't exist, for example, for the Donner party; everyone of whom should have died from the "stress."
Very true. They will lable it stress or anxiety.
STRESS IS A SYMPTOM, NOT THE CAUSE OF CRONIC FATIGUE OR FIBER MYALGIA.
Facts. I have a disease doctor's can't diagnose too and it's tagged as "stress" until the first physical symptoms that are visible to the naked eye began to happen. Now it's "stress + that other thing". Facepalming hard.
Yes, it’s did you see a psychiatrist
Remission. That word people think means "all better," but actually means "I'm just not dying as fast as I was. "
Well, no, it means "it's okay for now." If someone with cancer has gone into remission, it means their cancerous cells aren't out of control, and the truth is that all of us always have cancerous cells. What remission means for someone with a chronic illness is a recovery that may only be temporary, and permanent knowledge that their body contains an illness that they'll never fully get rid of.
It doesn't mean they're still dying of it, it just means that they aren't currently dying from it.
But for other diseases it's not a recovery. It's at best a pause. But unlike cancer other diseases never let people go back to a normal lifestyle. People often "beat" cancer and can get back to normal. It makes "remission" sound like a return to 100% where as in organ diseases, for instance, it may mean the degeneration has stopped, but is still at whatever % below normal.
From Wikipedia (en.wikipedia.org/wiki/Cure#Remission):
"Remission is the state of absence of disease activity in patients known to have a chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer or inflammatory bowel disease when these diseases are expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. Each disease or even clinical trial can have its own definition of a partial remission."
"A recovery is a restoration of health or functioning. A person who has been cured may not be fully recovered, and a person who has recovered may not be cured, as in the case of a person in a temporary remission or who is an asymptomatic carrier for an infectious disease."
Thus, remission is partial or full recovery that may turn out to be temporary. More or less.
I'm not challenging the definition, merely how those I've met tend to use it. More often than not they believe remission = cured/healthy.
As someone who is in "remission" and will never "recover," I just find it frustrating that people don't understand the difference and thus don't understand why I don't go back to acting healthy. "But you're in remission..."
You are absolutely right. Patients always try to stay positive which shows in the way they talk about their conditions; if its really bad, they tend to use understatements because they know that there are people in similar situations that are not as *lucky* as they are (read: there is always someone worse off then you).
If you have had or going through CFS, you will know how hard it would of been to even get up on stage. This woman is breaking down walls for the greater good. Much love...
jody schuller so true. Jennifer is awesome.
*would've
I am one of the Missing -- living with ME for the past 30 years. Thank you for exposing this devastating illness.
I am with you. You're not alone. ❤️
Me to 32 years and counting, stay strong hope is on the horizon 🙏
There are some beautiful news: her M.E is in remission now! She posted it on twitter
I certainly hope that I can find HER more current postings. Please help me find her.
FRAUD!
@@rodneyleon3645 Evidence for your rebuttal?
Glad to hear that!!!!
This brought tears to my eyes. this has been my life for the past 6 years. Im only 25 years old. I live life like im 70 years old. Everyone treats you like its all imaginary, even my dad who is a doctor and knows all about fibromyalgia and cfs.
Im working on close to 9 years myself. I loved my life. I was in love with life. Now it's gone. They're are days when I have hope. Today is not one of those days
Same here 😭
I'm 60 years old have had severe case for 10 years now. I feel real bad for you at your age, and yes nobody seems to think anything is wrong with you, I hate it. Let them spend a week in our shoes and then tell me it's not real
John Hinman yes thats the biggest problem. No one understands. People think it’s psychological.
Thos is my life too.
I am so very sorry that your own father doesn't understand.
We feel alone and we are except for each other.
❤🌻❤
In nine months I went from teaching Latin ballroom to shopping for a wheelchair..... from following my biggest dreams to chasing pain relief. I'm with you and I think you may be one of the most beautiful souls. You gave me much to think about.... this time positive things❤️
Isn't not being able to dance THE WORST??!
I ache to dance almost every moment of the day... and I don't know if that ache will ever dissipate...
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
Do you mind if I ask what that's they did that confirmed it?
“My brain is not what it use to be...” I feel that so much. 10 years of chronic pain for me I feel so much for everyone in the comments ❤️
Good on you Jennifer Brea! Before this video I didn't even know that ME existed and I believe that now you have shed the light on this crippling disease.
SamTom124 Thank-you, as an m.e. sufferer who has struggled to get people to understand and has been hurt by people's nastiness because of stigma and ignorance. It makes me smile broadly and almost tear up to know you have seen and grasped what so many of us go through. I appreciate that so much. Never stop what you're doing as you can make the world of difference with that attitude if you ever come across someone with m.e. or similar conditions. Have a nice day!
SamTom124 Yep, I had no clue that it existed, And I support ME suffers to 100%
Thank-you, that means a lot!
Go study Fibromyalgia & you will learn that all the crazy symptoms of ME/CFS are the same exact multitude symptoms of Fibro. One disease focuses more on pain and tender points & the other on fatigue. In turn both Fibro & ME/CFS are ALL the symptoms of the growing pandemic of Lyme Disease. Watch a video clip on here called, "under our skin extended trailer" and see all the different diagnosis people got before discovering it was Lyme Disease. The Lyme Borrelia spirochete is a cousin to the STD Syphilis & both are STD's & congenitally passed from mother to unborn child. Lyme symptoms: brain fog/head pain, ear ringing, eye disturbances, muscle twitches, pins/needles, pains/burns, numbness/tingling, GI issues, organ pain, heart palpitations, shortness of breath, night sweats, exercise intolerance...and many more. Why do you think you have all these symptoms, because you have an infection & the bacteria can drill into every & any organ & they LOVE nerves/the brain & joints. The co-infections of Lyme Babesia, Bartonella, & Anaplasma and Borrelia can DRILL into your white blood cells & red blood cells, displacing your hemoglobin & you then have oxygenation issues & shortness of breath & exercise intolerance. They need to be in your blood in late-stage, because they want to be picked up by ticks during their next meal so they can spread...that is how the disease spreads by insects that get it from feeding from your blood.
There are distinct difference between FM and CFS, much less FM and ME. Evidence of differences in cardiac function. e.g.: www.ncbi.nlm.nih.gov/pubmed/18395162
FM also doesn't have the hallmark symptom of ME: PEM. me-pedia.org/wiki/Post-exertional_malaise
I've seen 'Under our Skin'. I recommend others watch it -- very interesting!
Lyme causes neurological difficulties; it will show similarity of symptoms to other illnesses with neurological symptoms. And sadly, there is nothing to say that Lyme can't be the infection that is the triggering factor for ME, since it appears to follow more than one kind of acute infection. That is, you can have Lyme AND have ME. There is also nothing to say that you cannot have both FM and ME.
In general, there is nothing preventing you from having two illnesses at once, especially ones that may be linked in terms of both being autoimmune, or both being the result of poor or dysregulated immune function (chronic infection). Since tendency to autoimmunity is in part genetic, if you get one illness with an autoimmune component, you have a greater likelihood than the general public of contracting another. (www.womenshealth.gov/publications/our-publications/fact-sheet/autoimmune-diseases.html)
What this lecture should be called is "what happens when you have an illness that is incompatible with most doctors belief systems and egos." Doctors think they fully understand the human body and that their tests can measure everything. In short their intellectual hubris is enormous. Until doctors develop a sense of humility they will fail to comprehend illnesses like CFS. It's sad that they put their egos above the well being of their patients. They might also consider spending more time actually listening to their patients.
slovokia brilliant response.
slovokia I'm going to have to quote you in future. Thanks.
I think there's a distinction between doctors who don't care and those who want to make an informed provable diagnosis of their patients. I've dealt with both before. They can't say you have cancer if there's nothing to support it. It's not their job to guess. They're not supposed to operate on speculation without supporting evidence and making leaps of faith. That's dangerous. If anything this video does exactly what it says. That not enough research has been done on CFS to be able to reliably diagnose it. I'm glad she's bringing awareness to the issue but let's not demonize doctors like there aren't any who are trying to do their job right. Only conclusion we can draw from this is that more research NEEDS to be done to help people like her.
Nexus Mares To say that doctors are unable to diagnose diseases until they are fully understood is a cop out. Before the technological advances of modern medicine doctors were able to diagnose diseases based on patient reports and their own observations. Are there objective tests for migraine headaches? No but they are considered a valid diagnostic category. The technology of modern medicine coupled with the culture of current medical practice has created mental blocks for physicians - they cannot seem to cope with complex conditions like chronic fatigue syndrome where the source of diagnostic data will be primarily from the patients own observations of their bodies. William Osler was a physician who respected patient input. Today's medical schools have forgotten his wisdom.
I would also add that it is estimated that only 10 to 20 percentage of patients with CFS get diagnosed properly. If doctors refuse to diagnose people with CFS, no one will pay much attention to it and governments will not devote much resources to studying it. So given that physicians are collectively entrusted to bettering the public health, just how are people with CFS supposed to get any help? Doesn't this amount to a frame of mind that insures conditions like CFS will always be systematically ignored and underestimated?
I think what you're failing to understand is that the patient isn't a doctor. They CAN be a great source of information to start from but the vast majority of people don't posses the education and training of a real doctor. A patient who comes in with headaches and fatigue will most likely only get that far. It is up to the professional to go from there and determine a more accurate diagnosis. Still, failures to determine a illness do happen. I too have had many doctors look at me and be unable to figure out my illness only for me to do my own extensive research after and figure out what was wrong with me on my own. But what you need to understand is that cases like mine and Jen Brea are outliers. I've also gone in thinking I had a bad case of the flu only for my doctor to determine that I had runaway bronchitis. This is the vast majority of patient-doctor interactions.
Also it's a very huge leap to say that before the advent of modern medicine that doctors were 100% accurate in determining their patients illness, much less treat it properly. Lobotomies, ingesting mercury, bloodletting, "wandering womb?" etc.
Like almost every single illness in history there was a period where people didn't know anything about it. If it seems like a no-brainer then it's because we've figured it out by that point. Easy to diagnose illnesses from common symptoms are easy figure out because we've done the research. We can't hope to effectively help people with CFS until we know exactly how it works and how to treat it properly or else we risk using some archaic form of treatment like we used to in pre-modern times. As far as there not being a satisfactory level of research done on CFS? I don't know. Vested interests? Socioeconomic issue? Societal paradigms? That's not something for me or you to determine based on speculation.
this speech proves that when patients talk about their symptoms they need to be believed. people wouldn't make up that stuff .
You need to look at somatic illnesses. Not everyone is sick from a biological perspective. The brain is unbelievably powerful. Many people subconsciously believe they have an illness, and they recieve compassion and attention, which they enjoy. This triggers the reward circuit in their brains, and they crave more.
Yes, some or many are really sick. Others are not.
@@rpospeedwagon And not everyone suffers from a _somatic_ illness. So don't get it twisted.
@@rpospeedwagon And how do you know the difference? How do you test for a somatic illness. And what is the potential ramifications of distrusting and disbelieving someone who is really sick? For the 10% of those with somatic illnesses (people who are genuinely suffering still, just not with a biological component) what happens to the 90% that are treated like they are because it is easier and doctors treat patients like liars until proven correct. What do you think the reasoning between innocent till proven guilty in courts is? That's right, if treated like guilty no one can be proven innocent. And they will be punished for being a victim, victimized only further.
@@rpospeedwagon ok…but as a doctor you’d have the patients history and all to make at least am educated guess. I barely went to the doctor for anything until I got this disease at 28 and luckily I haven’t had a doctor tell me it’s in my head but they truly don’t know what to do. What’s the difference anyway that a small percentage of people do this? Should that discount the vast majority and then have to play some game because unfortunately usually the symptoms aren’t visible, either way I don’t even see the point of saying that.
True
She sits exactly like I do. EXACTLY. I have every single symptom she has. Im exhausted, in pain and these professionals aren't doing things right. 😢💔 People assumed I was just being lazy, grumpy for no reason but doctors refuse to treat my symptoms. My Dr used to help but stopped.
I'm literally sitting here sobbing because I've been dealing with an undiagnosed illness for 5 years that has completely destroyed me, but this gave me hope. Hope that maybe some day I'll have answers, that I'll have treatments, that I'll get at least part of my life back. Thank you, this was a wonderful talk.
Were you ever able to get a diagnosis? I am struggling to get one too. I have been dealing with serious health problems for 4 years. Doctors have been so horrible. This video made me cry too.
@@leschatsmusicale For both of you and for anyone reading this with unexplained chronic health issues, please look into chronic EBV. Get tested for EBV (what causes mononucleosis) in your blood. 98% of the population is exposed to it in their lifetime but for a much smaller number of people it can turn chronic (including for me). It can cause SO many different symptoms and is known as the ‘silent disease’ because it goes misdiagnosed. It also leads to many many other autoimmune disorders, with one of the most common being chronic fatigue.
I can not stop crying. This is my life.
Chris Bee I had this condition as a young adult and after years of not being believed I did slowly get well, it has been about 10 years since I had bad symptoms and my live is kind of normal but I worry it will come back, my point here is that things can and will get better through the body's own ability to heal and through progress in the medical profession, I hope your already feeling well or that you will see improvement soon and try not to push your body to hard 😘
Thx for your comment, evidence that you'll get better with time and therapy (lifestyle) keeps me from depression and "emotional hole"
Chris Bee hope you feel better bro
Mine too
🙏❤️
Still not enough is being done to help ME sufferers. My friend has been missing for 17 years with severe ME. She can't work or have a relationship or even consider having a child. She is 39. She has lost 17 years of her life and still not enough is being done to raise awareness and get enough funding.
6:23, "how could a disease this common & this devastating have been forgotten by medicine". Because medicine isn't about treating, it's about profit
I mean this is the same in socialised healthcare systems so maybe it’s a difficult disease to diagnose and understand 🤷🏼♂️
@@guyclark8133 Even socialized healthcare is constrained by budgets. Like, family doctor visits that are limited to 10-15 minutes. Medicine and scientific research are constrained by lack of funding. Also for pharma companies, there isnt incentive to research diseases for which the treatment cant be monetized.
This sounds VERY much like my journey with MS. It took me 12 years to get a proper diagnosis. I was very much treated like a hypochondriac. I now run 2 online support groups with about 20,000 members. It's *still* happening. Thank you for speaking up!
Mr Brightside Shut up
hi just. i'm dealing with a chronic legs heavy fatigue since gen 2020. its 9 months now. no signs of recover. a nurologist took me some exams in march such muscle blood test, EMG test, neurological test. in his opinion its just stress. but i don't know what to think because i have severe weakness synthoms constantly. i was thinking about seriuos disease like MS or even worst ALS. what do you suggest me to do? thanks if youll find the time to reply
Mr Brightside you clearly have no idea what it’s like to be sick- sometimes the only thing keeping you from ending your own life is the support of others going through the same thing. Kick rocks buddy.
Did you have normal MRI for several years? Did you ever get spinal tap?
For anyone interested in learning more about M.E., I suggest the following:
1. Google Whitney Dafoe. He has one of the most severe cases of M.E. He has been totally bedridden for over 3 years, is unable to speak or eat, and is fed through a stomach tube. His father, Ron Davis is a world-renowned researcher at Stanford making cutting edge discoveries in the biochemistry of M.E. But he has to beg the NIH for even the most basic funding. Currently the NIH is granting more funds to male-pattern baldness and hay fever than M.E.
2. Watch the documentary "Voices From the Shadows". It tells the stories of several UK patients with severe M.E. One was dragged by hospital staff up and down the wards with her legs completely paralyzed because they believed she was fabricating the illness. Another was forcibly institutionalized in a psychiatric hospital and made to exercise, shortly after which she died. An autopsy found massive inflammation and damage in her spinal cord.
3. Watch the documentary "Forgotten Plague". Whitney Dafoe is also featured in this documentary.
4. Watch the upcoming documentary "Unrest" by Jen Brea (the TED speaker) when it is released.
The history of how M.E. patients have been treated is an absolute international scandal. This is a disease that affects over 30 million people worldwide but has been effectively banished from public conscience for over three decades. The worst patients have been left bedridden for over 30 years with no help from the government or doctors. When they begged for help, they were mocked as hypochondriacs or malingerers. Many were abandoned by their families. Some lost hope and committed suicide.
Please spread the word about this devastating and forgotten disease. Over 50 congressman have sent a letter to the director of the NIH demanding that more be done to fund research into M.E. People are still suffering terrible from this disease, many are dying from complications or suicide. You can find their stories on RUclips if you google "myalgic encephalomyelitis" or "chronic fatigue syndrome". They have felt invisible for far too long, but are at last coming together to urge for better treatment.
Please spread the word! Thank you!
tpno2005 my gosh! They have more funding for baldness than a disorder that can steal people’s lives?! I understand that make pattern baldness and hay fever are issues because they can cause emotional things and allergies, but surely they aren’t the PRIORITY?!
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I had a similar experience. It was finally diagnosed and treated as lupus. Buy it was a very long hard battle getting though all the doctors visit. I made a video about my experience. I hope you enjoy it. ruclips.net/video/0UaGlZjolLI/видео.html
I am going through this right now post covid, for about 5 months - I just found out ME/CFS couple days ago. I couldn't believe how could that energetic me became like this...I can't talk more than 10 mins with severely worsened symptoms, I need to take breaks while eating.. I don't know anybody without this disease could ever imaging it. I hope one day I could be one day talk this much, remember this much, and function even just half of the old me.
This is my story. I too have been on the ME/CFS continuum since my early to mid-30’s. 30 years of living with this without doctors understanding my experience. I admire your work. Profound! Brave!
I also suffer with "Conversion Disorder." It's basically a term that means "We don't know what it is and we don't have the technology to figure it out." I've gone through a great deal of medical abuse from professionals (and I used to work in medical research) who think I'm malingering. "Whiny White Woman's Disease" one supercilious snot of a nurse in a hospital sneered to me once. I understand the "think of horses, not zebras" methodology, but many doctors seem to forget zebras exist. A lot of them seem to think "If it's not a horse, it's a unicorn."
longtail4711
Kinda know how it feels....
Yes it's beyond scope of the limited medical science ....the answer that I've figured out is that it's an energy disease ... meditation and yoga has personally benefitted me ...although I still get some tough days ...but they aren't that severe
I was diagnosed with conversion disorder. Years later I got the correct diagnosis of Anti-NMDA Receptor Encephalitis. Doctor are full of it- instead of admitting they don't know what's wrong they give you this bullshit (and dangerous!!) diagnosis. I missed out on years of treatment because of this misdiagnosis.
That is the worst when doctors blow it off as psychological! I’m so sorry- don’t give up! There are a few symptoms that can occur from psychological issues but one’s entire body shutting down then calling it a manifestation of emotional issues is insane !
@Mr Brightside Hello Mr Brightside, I hope this comment finds you well. I’ve seen some of your replies on this video and I have to hope that your opinion on M.E. stems from misinformation when you’ve previously researched the illness. If you have the time and/or the inclination please look in to it again with a wider focus and an open mind.
While I’m here I would also like to address something you said in reply to Kitty and Doggie’s comment a couple of months ago about M.E as a psychiatric disorder due to people being ‘extremely frightened’ by an illness. Many of the illnesses that precede the onset of M.E are not ones that most people would be particularly frightened by, Glandular Fever, Chicken Pox, the Flu etc. Illnesses like this are not that scary for most of us as we know what to expect and they are usually short term.
M.E. is not a mental illness, it is biological. Organisations like the M.E. Association in the UK, and the Open Medicine Foundation in the US to name just two are funding and/or working on biological research as we speak, and that’s just what’s been going on lately. The biological research is there going back years and years from many smaller underfunded studies in a variety of countries.
This recent upsurge in visibility is the result of years and years of hard work and campaigning by patients, patient groups, dedicated organisations and many reputable medical professionals. The lack of support from parts of the medical community is lack of education about the illness and how to treat it. A lot of this misinformation occurred decades ago and has harmfully lingered in the minds of the general medical profession and the public at large, not in small part due to the press and their lurid headlines about yuppie flu back in, I think the late 1980s, at least in the UK, which just goes to show the damage that can be done by a small group of people if they have a big enough platform.
M.E. has also recently been recorded as the official cause of death of a severely ill woman in the UK, biological not mental, and sadly she is not the first to die from this condition, just the first to have it officially listed on her death certificate.
If you’ve listened to the whole video, you’ll know that Jennifer Brea mentions medical research that is currently ongoing that proves M.E. is a biological disease, this is just the tip of the iceberg as medical research in to M.E. is finally starting to get more funding.
Of course there will be a few people with M.E. who may also have a mental illness, as there would be with any large group of people, but the mental illness is not the cause of the M.E, but more often than not a response to a devastating illness, or an entirely separate condition.
As I’m sure you’re aware mental illness is another area that is complex and needs to be taken more seriously, including educating people and allocating more funding to help those in need, but M.E does not come under that remit.
Millions and millions of people from all over the world and all walks of life, over decades and decades since we gave a name to this disease, and you don’t think most of them have gone through at least one psychiatric evaluation, especially children with an undiagnosed illness? There is very little belief that M.E. is a mental illness now in any way shape or form and there was no real evidence years ago, just speculation that was unfortunately given a public platform. There is however more and more undisputable evidence that M.E is, and always has been, biological. This is the direction we have always been moving in, and not because patients say so, but because of reputable medical research.
No doubt by now, if you read this whole comment, you will have realised that I suffer from M.E, I’ve been ill for over 30 years and the illness started when I was 15. We are not liars, we are not malingerers, we do not want our families to suffer, and we do not pathologically want attention. We deserve the same chance as anyone else suffering from a long term debilitating illness, we want to be taken seriously, and we want answers. It’s really not too much to ask, but we’ve had to fight for it every step of the way.
Whatever your belief on the origin of M.E, and of course you have the right to your opinion just as I do, people are suffering and deserve care and respect.
Thanks to anyone who actually read this comment, it’s obviously a subject close to my heart so it ended up being epic in proportion, but there’s a lot to say, even if I don’t say it well.
All the best to anyone out there suffering a long term serious illness, or any illness, I hope you get all the help and support you need. Take care.
This is sad and encouraging at the same time.
This is my life! I’m only 15 and I can barely do school work in order to atleast pass my GCSE’s. Being out for a few hours makes me incredibly tired and feel like I’m useless.
Being at school makes me so depressed and feel like I physically can’t walk anymore from all the stairs.
I go to doctors and when telling them my symptoms they focus on other things that aren’t even important instead of the debilitating ones. It’s caused me to develop psychological issues which then makes doctors not believe me even more. Especially considering I’m still a child.
Sorry this is happening Kyra. Sending you a hug to your heart. I sincerely hope that this journey doesn't take away the things that make you feel a sense of self. I also hope you find community of teens like you so you have someone to share the burden.
Look into nutrition.
Kyra, can you hire a registered nurse consultant? Doctors have to answer to them.
This hit me like a ton of bricks. I have been sick for 19 years, and I haven't had a single doctor give me any kind of diagnosis, even though I have known, from my own research, that it is CFS. I insisted on seeing what seems like a hundred specialists, and nothing. It has been common for doctors to very clearly avoid talking about CFS, even when I brought it up. Thanks for making this video - it is validating
I had to go to the mayo clinic...I saw a neurologist and was diagnosed the SAME day. He listened to me for about 10min.. he said I already have an idea of what's wrong but I want you to continue telling me going on for the past 6 years. It took a good 45 min and at the end he said " you have a condition called chronic fatigue syndrome". I was filled with mixed emotions but happy to know what was wrong with me
I find it a little unusual so many of these affected people start manifesting these symptoms AFTER acquiring a caretaker. In her case it was her recent marriage. Same thing with Physics Girl.
@@coder-x7440 What you're experiencing is called survivor bias. Same happened with WW2 planes. They looked at where the planes got shot, and added armor there, but it didn't seem to help the fatality rate.
Problem was, where they were getting shot was obviously somewhere that allowed them to still return. What you actually needed to address was the opposite. The places they weren't getting shot. Because planes that got shot there never returned.
You don't know anything about people with this condition. The only thing you know about, are the ones that last long enough to reach out into the world to talk about it. Not blaming you, you're human, and that's what everyone knows- is what they can hear.
And the ones that survive long enough to reach out often have caretakers and people that care about them.
Watch her documentary, it's free on youtube, called Unrest. She struggles with suicidal thoughts, and feeling like a burden on her "caretaker" in there. It's a real possibility that if he wasn't encouraging her, she never would have made it to the point where she could give these speeches.
@@Rojikku not sure how you made that association, but I think skepticism is fair. Observable patterns are okay to point out, I think. Your premise is that the pattern exists only among the survivors that become well known advocates, but perhaps they intermingle with the real victims you mentioned as well. Causing them harm by engaging in attention seeking behavior due to whatever mental illness this is. I’m not saying cfs doesn’t exist, I’m saying there’s a suspicious pattern here. I mean in her story she makes it all the way to the hospital and back disco dancing on foot the whole way only to flop onto the floor infront of her caretaker when she gets back after having been dismissed as having a psychosomatic issue at the hospital. Why pretend that it’s not suspicious?
She even engaged in attention seeking (sympathy seeking) behavior from the audience mid Ted talk. These people exist
We need more TED talks like this one.
Women with endometriosis will often be told that "it's just period cramps, some have more some have less" and that you're just exaggerating because you're a woman. "It will get better after your first child". How patients are being looked at need to change!
Jeanette Dahlström whats worse is endometriosis can lead to being infertile and even worse when undiagnosed, and women with it consistantly go undiagnosed for years because doctors brush it off to be something harmless.
Yep been there 🙄.
It has everything to do with it. There is evidence to support that it is an autoimmune condition. It takes women years to get diagonose. Most are dismissed and are told they are crazy or exaggerating.
@Mr Brightside personally, it took me over 10 years... On average women aren't diagnosed until late twenties even though they have lived with symptoms since their teen years. Most have watched their moms struggle with the same pain. So... They think it's normal. Because the endometriosis can only be diagnosed by exploratory surgery, most physicians will draw out the diagnosis because they don't think your pain warrants surgery.
I'm sure, as you are openly challenging me on this site that you are capable of running a Google search if you don't believe me. Good luck.
This reminds me of a conversation I had with a doctor once when I was having chest pains and they couldn't find anything. I had already done 3 or 4 appointments, including a specialist, and was starting to lose hope when the said all my tests were fine. Most people didn't believe me, even my mom thought I was being ridiculous, but the doctor looked me square in the eyes and said "Look, sometimes it can take months, even years to diagnose something. Just keep trying till you find the answer"
Even tho I ran out of money and never found out, that really stuck with me
It's amazing that this made me think "wow, what a great doctor!" Shouldn't our standards get to be higher than that?
Great doctor there! I am glad that you met such a person!
But not a common experience, sadly.
It’s crazy hearing my story come out of another’s mouth.. 😳❤️
I feel ya... that of those... a few of us... 🙏🏼🇨🇭😘🙏🏼♥️🐈⬛
These kinds of subjective illnesses are really scary. It's impossible to know objectively, what another person experiences. We can only know our own.
Mikko Haavisto - They are only subjective because we haven't researched them properly. ME/CFS patients have to fund research themselves, and in 2016 for the first time objective metabolic issues have been recorded. Science is the answer.
It's true that human experiences correlate with brain states, but still we really can never research the subjective directly.
Mikko Haavisto yes but we're not talking about that we are talking about a specific illness: M.E. which has little to no research. As she said there are currently avenues to go down for research from researchers all over the world. M.E. is not obscure it is defined and even more so if people care enough to listen to the people who suffer with it. If you would like to discuss it further I'd be happy to, as an m.e. sufferer I want to help people to understand better than they did. Have a nice day!
What objective metabolic test?
Sai - "Metabolic features of chronic fatigue syndrome" www.pnas.org/content/113/37/E5472.full
For any detractors out there, you need to experience this debilitating disease before you get a chance to give your opinions. There are many sufferers whose lives have been turned upside down by CFS/ME, and you are not the people to offer your uneducated views as you're completely misjudging the issue.
Good man!
Andrew sadly it's just like chronic pain and fibromyalgia. People can't grasp what another person's pain/feelings are unless they've grown up around someone with it or similar or until it happens to them. And it's sad to think people of all ages, even the young have some of these diseases with no one who believes them. I'm thankful for videos like these and comments like yours. It shouldn't even take experiencing it to have some empathy.
Andrew
Amen
Lucky Lex
EM
Is not like chronic pain diseases or fibromyalgia. Each one is distinct and you can have all three. I should know. However, the more you read and listen to testimony of sufferers you will get the rhythm of the symptoms and what ADLs cause the exertion or neurological issues that are symptomatic with ME.
i hadn't the NRG 2 set ppl straight. TY Andrew 2 say what i'm 2 weak 2 express
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.
I got sick when I was 15. I was finally diagnosed just before my 50th birthday with Lyme disease. Despite treatment that helped to a certain extent I am still not well. You do find a rare doctor that tries to help but most just cannot be bothered.
I grew up with what is likely hEDS, I thought I was just a lazy kid who didn't take part in gym class enough, but I could function like a regular person, just with some joint pain, prone to sprains, and gut issues. In 2015 I was nearly graduated with a degree, really high GPA, I'd done a few internships and my future looked so bright. Then in 2016 my joints suddenly got worse. Followed by severe stiffness in my back and neck, I couldn't hold my head or arms up, violent twitching, intense bone and nerve pain in my legs and upper arms. I started failing exams because I was unable to see clearly enough to read the questions, and I couldn't even get out of bed to go to class.
I was diagnosed with bartonella, babesia, and Lyme in 2017. Did 6 months treatment and most of the severe symptoms went away, but I stayed very fatigued, weak, and ally hEDS related problems got seriously worse. This year I started to have strong audio hallucinations. I've been to a psychologist who diagnosed me with ADHD, complex PTSD (abusive and neglectful childhood), and "illness anxiety". Still no explanation for sudden hallucinations, or why my CFS is still so bad even though the majority of my Lyme/co-infections seemed to be cleared up. I've been "cured" for a year and a half now and am still mostly bed ridden.
At least covid convinced me to stop pushing so hard to try and prove myself by continuing to work at a job that was too physically demanding for the shape I was in. I've been homebound since March, and can maybe start figuring out how to move forward with progress.
Had they just suspected and treated it as that years ago you could have had a much different outcome and life. It’s amazing to me that doctors go through years of education but most can’t get it right. I had a doctor explain Lymes disease to me as being incredibly difficult to diagnose because what they look for in the blood is very small and cycles through the body so a small sample of blood doesn’t always catch it. If lymes disease if even remotely suspected you should be regularly tested for it every few months. We are talking a little stick of blood every couple months vs a potential lifetime of dysfunction. Yet they don’t do it.
I’ve been ill since age 15 and now 53,recently had the lymes test and the dr said it wasn’t yes and wasn’t no and left it at that.I don’t know what to do now.
I have been in bed, and haven't left my house in 7 months... this has become the norm for me since 2010.
I gave up on the doctors I once trusted and respected... seeing that they had already given up on me.
Here I was in my bed looking at animals , and I hit something while adjusting my position to get more comfortable. I ended up here, and was listening to a young lady tell the same thing I've told my doctors for years.
I don't know how long one can live like this... nobody believing , and everyone doubting every symptom you have. The pain is unbearable... but the look in someones eyes that you once trusted - your doctors - just makes you numb to it all, and makes you feel there's no hope.
I found hope and purpose in the teachings on suffering from the Catholics. I now routinely “offer up” my suffering with prayers for people, especially the more hard hearted ones I come across. It’s a full time job these days.
Triggering Trolls I totally understand I am in the same situation. I feel sick all the time. I have a few good day here and there. Doctors tell your tests look normal. Just eat and sleep more.. I haven’t had a normal life in 10months. Now it’s gotten so bad I have no circulation or blood constant cold feet blue . Weight loss lethargic some days. I am in pain..I had 7 urine tests with blood and large leucocytes in it. I questioned this to doctors. It’s normal. I finally went urgent care and they said that not normal gave me antibiotics. I am taking them I feel worse chills etc.. My doctor doesn’t help family kind of abandoned any help to me. 😕 I pray everyday just to be 70 of what Inused to be. I hear you .
J Podca Hang in best you can. I’m beginning to get modest improvement with techniques intended to calm a dysfunctional neural system. The brain is powerful. I’m trying to pull rank on my brain to get this to calm down. Doctors are clueless. One doctor I’m listening to is Dr Howard Shubiner. Google him and see if what he says makes sense to you. God bless you.
Chuck W thank you.
I feel you... And I'm so over being inside
I've had this condition for 10 years. From the age of 19 back in 2007. Whilst the world of medicine has been WAY behind in research and funding, finally it appears we are being listened to and taken seriously. Whilst medicine might not find cause and treatment in my lifetime, we can but hope that those yet to fall ill in future decades, will get the help my generation has struggled on without.
ChesnoidGaming
They know the cause, just not a cure. Significant research and clinical trials are being done. I am in three. 23 and Me, the ancestry company is doing research in this area. They are looking for volunteers
ChesnoidGaming please be tested for orthostatic intolerance, it is a symptom of me that can be treated and may help you. you can test for it at home. get a heart rate monitor, take your heart rate laying down, then stand up and take your heart rate again. if your heart rate jumps more than 30 BMP then you have orthostatic intolerance which can be treated with beta blockers, steroids and salt tablets + increasing fluid intake. as many as 80℅ of me patients have orthostatic intolerance, more specifically postural orthostatic tachycardia syndrome. they're finding nearly all me/cfs patients have this.
phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing
Try to check the link below for testimonials from people who had chronic illness and were able to recover using FasterEFT.
m.ruclips.net/video/JqavXypE45M/видео.html
I've had it for so long, I'm not even sure when it started...but 10yrs sounds about right. I feel that the symptoms started sooner, though...they just didn't get bad until I reached adulthood. You're just two years older than I! ^^-
Mycoplasma is usually at the root as it hides deep and resistant to many types of antibiotic as it has no cellular wall. Many secondary illnesses follow this also causing confusion. I too started suffering the same age as you but around year 2000-2001. I've gotten immune suppressed over my lifetime bc of the over prescribing of antibiotic s and no suggestion of probiotics ever since birth. Videos here talk about its root in many illnesses. Good luck
I can totally relate, my symptoms are so similar after contracting covid nearly two years ago. All labs perfectly normal and yet I felt like I was dying. Still unwell and still no help from the doctors.
Thank you Jennifer. I have had ME for almost 30 yrs. I am one of the lucky ones who isnt bedridden but it takes more strength than people can ever imagine to keep getting up each day and trying to live a "normal" life. What you are doing has given me hope, a light in the darkness. Thank you so much .
I applaud you for addressing the issue of misogyny in medicine.
Jennifer, you tell our story perfectly. My symptoms are not as severe as yours, for example, when in the initial acute phase of M.E., I was able to get out of bed for a time on most days. But your frustration of having medical exam after exam come back negative reminded me of how desperately I wanted my cardiac tests to show that I had a fixable heart problem. I shared your introspection when your physician said you had an emotional disease. And, like you, my symptoms left me wondering how in the heck a psychiatric or emotional illness could cause such physical pain, cause my eyes to not focus or for my heart to beat out of control and so hard that I could feel it in all of my extremities. And why is it that most of my fatigue doesn't show up for 24 hours after I exert myself? I'm 68 years old, and began showing symptoms 11 years ago. My heart just breaks for you and for those who commented below who have this wrecking ball of a disease while so young. Thank you, thank you, thank you.....
Rick Pappas
Thank you for sharing. This helps💕
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How are you now?
You are a true hero. I have suffered from Fibromyalgia since my early 30's. I still have days when I cannot function mentally, or physically. Watching your documentary was truly inspiring. Bless you for doing what you do.
I was just diagnosed with POTS Syndrome. I went to 8 ER’s & 3 911 calls over a period of almost 2 months & was always told it was anxiety. Thank God for my new neurologist. He’s literally saving my life with this diagnosis. Shame on doctors who don’t listen when we are begging for help.
I was touched by this. Keep fighting Jen, there is going to be a definitive answer to this one day.
or not
As of 2019 she is in remission. Yay.
This absolutely deserves to be spread. We’re people too. We deserve answers, a cure. Please share
Im a doctor who are willing to become a psychiatrist one day and this is really opened my eyes to things i never seen before, i hope your gorgeous smile keeps glowing , sending love and support to all of you
No....not psychiatry....that really is evil.
I got ME from covid at the beginning. I’m crashing and watching ME videos to keep myself from feeling so alone and helpless, and to keep my anxiety from running away with itself in the silence, spending more energy than I have and making the crash worse. I had the gift of doctors who listened, who saw others like me, young, athletic students, suddenly reduced to ghosts. I was listened to, and I was diagnosed early, and it saved me from reaching severe illness before I knew what was happening. We have to change the system so that everyone has the experience I did, so that people are listened to, and patients are real partners in their own healthcare. This talk is so important, thank you for doing it.
Amazing talk you can really see in her eyes that every days is struggle. Keep going you were incredible respect.
I've lived with this scourge for a long time. I was in the military. I went from being able to hike 13 miles to not being able to walk the length of a Walmart. It's a prison. God alone keeps me encouraged and fighting. My family doesn't understand. My father still thinks it's just anxiety. It's amazing what people don't know. And it mimics other diseases. Fatigue. The crazing of my life is energy!!
Sadly, 6 years later, we are still no closer to a diagnosis or treatment. In Norway, where I live, loud voices within the psychiatric medical community champion that ME is a psychiatric condition. They don't doubt the physical symptoms but are adamant that it's all in our heads. As sad as it is that so many are suffering from Long-Covid, I hope that the research on this condition can shed light on how other viral infections can lead to ME. And luckily, I have yet to hear anyone claim that Long-Covid is a mental health issue.
Jennifer's ME/CFS is in remission and has been for almost a year now.
That's brilliant
Hits so close to home, similar story different end diagnosis ❤❤❤
So much exposure for this horrible illness. Very grateful. Hopefully there will be more. We need some top scientist on that stage TED talk.
My wife has this and thank you for bringing it to a big stage and platform. i know its been 2 years sence this is been posted but it still means alot
I experienced this from tick/ vector born infections. Neuro and cardiac implications. It’s been almost 10 years, now 90% better. Still have fatigue but I can walk and talk. Thank you for sharing your story!
How did you do?
Sounds like you had/have lymes disease.
I've shared this experience, but mercifully, to a lesser degree. Her closing words really capture the issues at hand. We are still a young and imperfect species that needs to ask more questions and show more empathy. I wish the best to anyone who deals with these experiences, and I'm glad this woman was able to share her wisdom and pain with us.
I have been constantly exhausted and low-energy for three years starting when I was 25. I used to be a runner and a computer animator and writer with lots of ambition now I can barely do anything. I have occasional chest pain every day and it's difficult to walk a quarter mile. It's often difficult for me to speak, it's difficult for me to lift my head or stand up for too long. Doctors tell me it's anxiety and now they're forcing me to take lots of medication every day that makes my problems significantly worse. They've taken me from my house to a rehab center where things are harder and I have less freedom. They've taken things I've relied on like my computer. Now whenever I want food a small snack or to use a knife it has to be requested and keep in mind that it's difficult for me to speak. something is seriously wrong. I've never been an anxious person. my energy is just gone, but doctors seem ok just saying this is "anxiety" they don't care at all. everything is just funny to them. and everyone in my life is ok just acepting this. they all abandoned me. They've been treating me for years like it's some kind of psychological or motivational problem, it's a condescending nightmare. you can never know what it's like to lose all your physical strength and power until one day is just not there anymore.
Preach. Honestly screw all those that don't take us seriously. I've taken antidepressants for over 5 years and I felt worse now than I was 5 years ago. More awareness needs to be raised on these issues.
Thank you Batman! Yes I wish there was more we can do. I'm trying to raise awareness.
Zack N Zwiebel /My heart is broken for you. Please stay strong. We care about you. We just cant care for you. Much love from Seattle. 😢
I DO have depression and anxiety, but I've gotten that under control with my daily medications. They used to say that's all it was, or that it was all in my head (especially the people I thought were my friends), but here we are...I panic less, I'm happier than I was (and far less suicidal), but where's my energy? Where's my cognitive ability? I have good days (sometimes REALLY good days), and I take advantage of them when I can...but then I have to recharge for a week, or even a month. It's awful.....I want my life back
Mycoplasma..look it up here on youtube
I am suffering with ME from 3 years and all the things she said broke my heart ........
But if i ever feel like taking my life i will add some people to the list (mostly doctors) and make a point to take us all serious( we are not lazy or depressed )
Don't do that , i feel what you are going through
Iam also suffering from this disease
@@ANUPSINGH-it8jj did you got any help?
This really explained everything I was feeling, I've been sick for 2 and a half years now with no official diagnosis and the battle with not only doctors but the people around you who don't understand or comprehend is probably one of the hardest. Despite knowing I'm not well like many others I'll get into my own head and start to doubt myself and my symptoms because people tend not to believe you until you have been officially diagnosed, the whole "you don't look sick" / "you don't seem sick" stigma is ridiculous. Thank you for doing this TED talk and shedding light on what it's like to battle with an undiagnosed illness!
Amazing speech. My eyes have been opened. she may be weakened by sickness but I've never heard a speech so strong. Inspiring.
Tearing up because i have ibd/crohn's/uc and i recognize this so much. Was misdiagnosed for years and not taken seriously. Which doctor listen to a 12 year old? Only when my brother got sick as well six years later did we figure it out.
Elinesof my sister got misdiagnosed a lot of times too, one of the misdiagnosed was Crohn's disease. She had terets. Also early signs of social anxiety are treated as exemplary behavior in school. Sorry for the weird reply, just wanted to share
Thank you Jennifer! This revamps my love of nursing even more. This stuff right here is up my alley because I love women's health, neuro, & psych! These areas are missing so much and I feel grateful that I can help.
Bless you!
I have ME/CFS, and I’m elleven. Have been sick for almost 2 years(sorry for my spelling I’m form Norway)
Best wishes to you. Jesus is intimately aware of your suffering and is with you always. I have often had to just close my eyes and reach out and hold his hand during the hardest times. 🙏🏻
Jeg håper det går bra med deg ❤️
Look into mold toxicity, Lyme disease and parasites if you can. I had debilitating CFS symptoms and turns out it was mold toxicity -- which had triggered a lot of other issues like inflammation, high cortisol, anemia, gut issues, low stomach acid, b vitamin deficiencies, etc. There is usually a reason this happens -- your body is smart! Don't give up; you can heal. It's often complex and takes a while, but our bodies are amazing. A good naturopath or functional medicine practitioner can help. Highly recommend the book "Toxic" by Dr. Neil Nathan; I've also learned a ton from vivanaturalhealth's podcast. And Cellcore has an innovative line of supplements that people are having great results with!
i have epilepsy, rickets in both legs, arthiritis on my lower back along with disc bulge. I used to be crazy active but now im in pain daily and i thought i had it tough but i am so proud of you and everyone suffering with any horrible illness. May GOD bless every soul ✊
I have osteoarthritis in almost all joints with reumatoid arthritis and conversion disorder with cranial nerve palsy. I'm just sitting and existing at home most of the times. I used to be do active, but now , I'm just a slug on the bed.
God bless you!! We are survivors and no matter what we are strong for even getting through this or went though that, May God be with all of us 🙏🏼🙏🏼🙏🏼❤️❤️
I went through extreme weakness, dizziness and fatigue for about 8 years. I researched my symptoms and came across this disease. I proposed it to my doctors but they said they didn't consider it 'real' and that I probably had some other problem despite everything coming up clear. I don't know why but I've gone from collapsing on the floor in extreme pain to being able to function with only minor dizziness occasionally. I live in perpetual fear it'll come back. I have not changed anything about my life in 8 years so it wasn't a case of poor nutrition or anything like that. It only worsened with time. I actually stopped going to the doctors because they wouldn't listen to me. They wanted to run test after test after test. It was exhausting. I hope with time there is more research done because if one day my horrible symptoms come back I know I will be faced with doctors who once again tell me I'm making it up...
Mr Brightside..latest s are not cheap. Most docs will give you the same tests over and over- there are more tests out there, but they never go for it. If you’re used to doctors knowing nothing to help you, you get apathetic and stop. There are tests of babies desperate to be nursed, and when no one comes, they cease crying. It’s called apathy. It’s NORMAL human response to when needs aren’t being met.
“Convenient when it suits you” is a judgement that you have no tests for! You’re just postulating what you want to think! Which ironically is what you’re saying about those you accuse!
Mr Brightside
Who are you so angry with? Fortunately there are researchers working on this now and they are finding strong evidence that the glial cells in the neurological system and more specifically in the spinal cord change state to a persistent protect mode. They act as an immune protector in the very fabric of our complex neural fabric and they create intense and persistent pain and other symptoms. Warm up your cold heart and take that big chip off your shoulder. You have a chronic compassion deficit disorder. I will say a prayer for you now that you won’t become afflicted with chronically painful disability.
Mr Brightside wow did u scroll thru every comment and post ur bullshit? If ur not sick then what r u doing here? U r absolutely worthless
@Mr Brightside When you don't know exactly what you have you have to take thousand of dollars worth of blood tests mri etc. Many diseases won't show any evidence of existence until they become severe. So basically if you have a rare disease or even a unknown disease you would need to spend at least 1k dollars a year just to take blood test alone while being in situation where you cannot work properly or cannot work at all. Also having disease like MS that can have periods of no symptoms at all can make the diagnosis even more difficult. Coexisting mental illness can mask a disease as the symptoms are thought to be due mental illness even though it might be the other way around, the mental illness one of the symptoms.
Mr Brightside
Still
I will say an Our Father and 3 Hail Mary’s for you bro.
For Mr Brightside
🙏🏻Our Father who art in heaven....
There.... notice any change?
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.
This is SUCH an IMPORTANT Presentation. What has happened in the 6 years since???
> What has happened in the space of research and funding?
> What changes, amendments & updates have been introduced, not only into Medical Schools curriculum, but into ALL Professional Schools of Practice? Undergraduate and Post graduate? { In the fields of; Psychology, Physiotherapy, Occupational Therapy, Rehabilitation Specialities, Social Work etc.etc.? }
> What is happening re introducing this information and keeping practitioners / clinicians informed and continuously updated via ongoing professional development?
> What is happening in the Diagnostic / Early Diagnostic space? Involving; GP's? Neurologists? Psychiatrists? Pain Management Specialists/ Teams? Auto-immune specialists? etc.
> What is happening / has changed when people first present to; Emergency Departments, GP's?
> Have the Diagnostic and Treatment Pathways improved? And if so - to what degree?
Where are we up to with this?!?
I finally got me ME diagnosis after 15 years of fighting to be taken seriously! Thank you for a great speech! ❤️
Fibromyalgia and ME here. Dreadful disease affecting every aspect of my life. Keep fighting!
I very rarely comment on videos, but this TedTalk really impacted me. It is heartbreaking to see how many others are struggling with debilitating conditions that can not be medically explained, but this makes me feel a little bit less alone in my struggle. Every day I grieve the person I used to be; healthy and full of energy and passion. Now I suffer in silence, having to push through each moment to try to lead a semi-normal appearing life where it never feels like my efforts are enough for myself or those around me.
I feel like a crazy person because I don't "look" sick and all my testing comes back "normal" but I know my body and something is very wrong. And as a woman, I do feel embarrassed and ashamed when I talk about my pain, fatigue, disequilibrium, diminishing cognitive functions and other symptoms because it feels like I have to convince others of what I am experiencing. I chased answers for years and was diagnosed with POTS and fibromyalgia, which feels like wastebasket diagnosis and I don't feel that anyone takes me seriously.
To those of you also suffering with no real answers, you're not alone and I pray that one day we find out what is happening to our bodies. We are so much stronger than we appear. Be your own patient advocate and know that you are doing your best and that you are enough.
What keeps one going?
I hang on, in relative poverty (which I don't much mind) without being taken seriously or even respected (which is hurtful).
I keep myself going (slowly but tenaciously), thinking: everything may fail me, but I mustn't fail myself!
Jesus keeps me going. He's been healing me; although, it's been a slow process which is fine because I'm not anywhere near as bad as I was before. I should have been long dead by now. All glory goes to him!
I really hope you're still hanging in there. I appreciate your attitude.
Thank you for this talk. I appreciate the time and energy you took to do this.
I'm a woman with a chronic illness. I've been fighting to be taken serious all my life. It wasn't until this year I finally started to be taken seriously. And I'm still dismissed by plenty of doctors. It's truly a struggle.
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 RUclips & Eckhart Rolls, Mooji, & others of a similar vein: you have saved my life & given me hope & meaning through my suffering. Namaste.
Tracy Dumka There are doctors who specialize in this immune disease. Please find one in your area or a close state. It is life changing.
Tracy Dumka
There is a wonderful understanding regarding suffering affliction in the teachings of the Catholic Church also. I have found comfort and encouragement in this and practice “offering up” of my pain and other disabling symptoms. God bless 🙏🏻
I hear you. I hope you can feel better. I have had this for over 30 years. I’ve had bouts of remission lasting as long as 8 years straight. Watch your stress levels. Don’t be angry about this. It is what it is and you are more than this disease. ♥️
Meditation and Buddhism have helped me too. There is a great book, How to be Sick, by Toni Bernhard, that gives her experience and guides to acceptance and peace
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. ;(
Part of this talk reminded me of Star Trek: TNG episode "Where Silence Has Lease", in which Lt.Cmdr. Data said: "The most elementary and valuable statement in science; the beginning of wisdom is 'I do not know'."
I actually have similar thing. when I was 10, I was diagnosed with Chronic Fatigue Syndrome and some kind of failure of autonomic nervous system in Russia, now I'm in UK and nobody cares, they said it might be ME, but they don't have enough evidence, so they won't do anything. well at least I can go through university and be left to sleep like 15 hours each day, but I hate myself for not being able to do anything else. Anyway it's not that bad if you learn how to deal with it and fight yourself sometimes to do something, because if you don't this thing will capture you and it'll be harder to resist it. just try not to be a victim and fight it.
Zeis012 it's not your fault you are sick. Work and believe towards your goal. If you want to play tennis, don't let anyone stop you. If you want to be a famous singer, don't let anyone stop you. My condition is completely different and not as serious (my arms don't go straight) and it has not been diagnosed by doctors. It prevents me from doing handstands and getting stronger as I cannot lock out my arms. All it means is that I need to work harder. Your condition may prevent you from doing the simple things in life but fight it and make every day of your life like the last.
well yeah, I'm doing my best, thank you. wish I had a goal tho. btw I broke my right shoulder couple of years ago, had a surgery and didn't recover properly, so I can't play tennis and even do push-ups, so I understand you in a way. good luck and stay strong.
Zeis012 I think you're talking about procrastination
Hang in there, you are not alone
well I know what's procrastination and it's different, I always try to do all my assignments on time and not in the last minute. Chronic Fatigue Syndrome is when you can't go through the day without sleeping for minimum 2 hours after work, caffeine pills don't help, and if you don't rest you get high temperature and/or nausea, or just pass out, even if it wasn't a hard day and you just had couple lectures. wish it was just procrastination..
Been bedridden for 2 years, can barely walk for longet than 5-10 minutes. Suffer from chronic pains. Diagnosis; conversion. It's all in my head apparantly! Therapy has been helping somewhat. But the pain? Still here. Can hardly stand bright lights or lots of sounds. So god damn tired!
I get you, I have conversion disorder for almost 2 years and I try not to fall in despair wich takes up a lot of energy
Look into mold toxicity, Lyme disease and parasites if you can. I had debilitating CFS symptoms and turns out it was mold toxicity -- which had triggered a lot of other issues like inflammation, high cortisol, anemia, gut issues, low stomach acid, b vitamin deficiencies, etc. There is usually a reason this happens -- your body is smart! Don't give up; you can heal. It's often complex and takes a while, but our bodies are amazing. A good naturopath or functional medicine practitioner can help. Highly recommend the book "Toxic" by Dr. Neil Nathan; I've also learned a ton from vivanaturalhealth's podcast. And Cellcore has an innovative line of supplements that people are having great results with!
Can barely walk 5 steps and rest, and 5 steps back and rest lol who wants life like this
@@tousifk3138 Be brave my friend and feel proud of rvery accomplishments you had. You are a fitter and you know it
@@celesteap174 thank you for the courage, really means a lot to me, wish doctors could treat it better , just so tired and scary, may God bless you
"I probably would've taken my own life".
That hit home ...😓
Please dont think like that there is always hope there are always blessings to count and people that love us. We just has to live one day at a time
It’s serious, I’m a 32 year old male that’s had it since 28 and had I owned a gun I’d already be dead I’m 100% sure of that. It’s an illness like no other but if I don’t improve in the next few years I’m just going to take the little control I have and do it because regardless of hope and all that I don’t want to fight everyday
@@celesteap174 or people can think how they want…who wouldn’t be suicidal. People can have hope and count their blessings and still want to die because they’re suffering. Yeah people love us and what’s your point? Let people feel how they feel. So tired of people coming at others with the religious bs or the oh count your blessings crap.
@@mypud4068 I’m sorry you’re suffering and you’re entitled to feel how you feel. I’ve often thought of doing the same thing but I have kids that need me. I have been sick since my youngest was born and I can’t even be a normal mom. I hate living like this. I’m not going to tell you how you shouldn’t feel. I have some hope left but what life do we have just existing.
I was 12 when i got sick, I didn't really have a big moment when I got sick, it started with headaches that lasted a few days, and then the dizziness started, and then my sleep issues got worse , I had constant flu symptoms. I briefly couldn't read because words vibrated on the page .I got diagnosed at 15, when I was barely pulling myself through a school that refused to accommodate me. A month before my 16th I dropped out and then didn't leave the house apart from appointments for 8 months . Some of it was depression, the mental health services had no idea how to help, they told me to exersize and join a club to deal with the loneliness. Im 18 now, before Covid I was just about able to go out once every 2 weeks with friends and one weekly night class to catch up on my education. My dad still doesn't quite believe im sick but he is making an effort to learn
Oh your dad knows you're sick. You are the one that is confused about your diagnosis, here's a hint it isn't physical LOL.
How are you now?
My ME/CFS is not severe like Jennifers, but I do have moderate CFS/ME.
I am so grateful that Jennifer has spoken out about the misunderstood and poorly researched illness which we face.
New international research is exciting and I am so hopeful for a treatment some day soon!
I was diagnosed with a mild case of anorexia in my teens,even though I remember always eating till I was too tired to continue. I constantly was tired and slept for up to 16 hours a day on weekends to makeup for school days. It's only in my 20s I got diagnosed with cfs and ms. I'm very lucky to have a mild case of Cfs. I can still work, stand, and walk, and most importantly, it's possible for me to manage most of my symptoms by leading a stress free life. Most respect for this lady in the ted talk. She made something out of this silent suffering that no one wants to talk about.
Wow! Jennifer. I just feel like holding you and hugging you tight. I'm hoping and praying that you've gotten much better over time. The world owes its debt to fighters like you who never give up. God bless.
Since a doctor once told me I shouldn't act as if I was in pain, and I then went to another doctor who could see the problem right away, and supported me by giving surgery before it was too late. I learned that the best kind of service is the one you provide for yourself. If you become your own best friend to help, you'll have a higher chance of survival.
💯❤❤❤❤❤❤❤❤🤗 I was told I was a hypochondriac until I asked to be tested for mixed connective tissue disease because it ran in my family. Tests all came back positive. My skin falls off in patches now and then, I'm on a special diet, have IBS-D, not surprisingly anxiety. I went to therapist asking if I was going crazy, could my body really be attacking me, she said I wasn't crazy, and said my tests show that I'm not. It's a relief to know I wasn't crazy, but now I can focus my efforts to try to stay as well as I can feel, even if my only accomplishment is getting out of bed for the day. I love this video, it is beautifully done and I WILL share this video!
My friend (Mason) has this disease, wearing earmuffs 24/7, and still barely managed to go to school... I hope there is a cure to this disease.
I was recently diagnosed with POTS (postural orthostatic tachycardia syndrome). When my symptoms first presented themselves, my primary care doctor told me almost immediately that there was obviously something wrong but she didn't know what it was, and made a plan with me to see specialists and start some lifestyle-change treatments. It took only a month and two other doctors to get a diagnosis, as opposed to the average of about five years and seven doctors until diagnosis. There is power in saying "I don't know".
That is the correct way.
If you can't get to the bottom of it, do "I don't know." Describe the symptoms, try to see what works.
My last doctor as I walked out offered me a counseling brochure for therapy and Zoloft.
Way to go everything I’m feeling is in my head it’s disgusting I’m on a quest to heal myself!
Stop ignoring your mental health do you have any idea how bad having mental problems can make you feel physically?
look into Dr.Bergman chiropractic care in Huntington California
Excellent talk. Highlights the many problems with the current medical system and gives a flavor of what its like to have a disease that has been treated so poorly by those we trust. Eye opening
Im dental student who is researching ME as part of assessment. I nearly passed it off in ignorance as chronic fatigue syndrome after reading a few sources. But im glad i came across this TED talk and really opened my eyes about this illness which is so much more. THe speaker is amazing and thank you for for sharing your experience. I think it is disgusting for modern medicine to i pretend that anything that is not currently treatable is down to the fault of the persons actions or brain. My dad is experiencing severe problems with severe pain in his legs in addition to other issues and virtually making him home bound which has lasted for 3 or 4 years now. Doctors have done similar things to him and have put it down to neuropathy where none of the symptoms line up.
I just hope that diseases such as these are not i just hidden, and that cures are found. I do also understand the female argument in this and it is totally justified.
I have a similar story. I was a performing artist. Now unable to walk any real distance and many other symptoms. MRi;s, scans, blood tests...done everything. Been told it could be anxiety. Gave up on finding the cause for a while, now I'm back to looking for new doctors...ones who are interested in helping patients that are hard to diagnose. I'll never give up. I realize that I am my own advocate.
Wow I really had no idea how bad the symptoms are & how debilitating it is. This video has given me a lot of insight on this disease. Thank you for posting!