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

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".

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 '

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

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.

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.

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 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

🎯

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.

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).

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'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!

What specialty doctor diagnosed you? My pcp doesn't even know who to refer me to.

Same. Printout and referral for cbt🥺

Me too.

❤

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.

jody schuller so true. Jennifer is awesome.

*would've

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

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!!!!

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.
❤🌻❤

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)

I am with you. You're not alone. ❤️

Me to 32 years and counting, stay strong hope is on the horizon 🙏

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

🙏❤️

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...

Do you mind if I ask what that's they did that confirmed it?

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.

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.

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

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?!

.

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. krplus.net/bidio/YLmZeZyMnKbQfXo

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?

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.

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.

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

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

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.krplus.net/bidio/etWZqIironyYZn4

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 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.

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.

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 feel ya... that of those... a few of us... 🙏🏼🇨🇭😘🙏🏼♥️🐈‍⬛

or not

As of 2019 she is in remission. Yay.

Rick Pappas
Thank you for sharing. This helps💕

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How are you now?

Don't do that , i feel what you are going through

Iam also suffering from this disease

@@ANUPSINGH-it8jj did you got any help?

How did you do?

Sounds like you had/have lymes disease.

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

Bless you!

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

That's brilliant

No....not psychiatry....that really is evil.

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

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.

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

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

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 🙏🏼🙏🏼🙏🏼❤️❤️

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?

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.

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 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

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 can relate 100%. If it's any consolation, some people don't have a spouse to support them, and have been going through what you have for 10 years or longer. I would say to stay strong, but honestly I think sometimes why?

Going through this exact same thing right now. Have you ever heard of paraneoplastic syndrome? It sometimes comes along with the cancer. Sending love and healing thoughts your way.

Brooke Sturgell no, I haven't, searching it right now. Thank you, sending ❤️ & prayers your way as well

Sandy DiVa Whatever tests you have all ways get a copy of the test results. Then check yourself whether they are optimal. Doctors frequently lie about test results being "normal" when they are not or "forget" to give them to you, then lie when you collapse they sent letters.

Balldric it's okay, the thought counts 💗😄

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