ME/CFS - A Brief History - The Lost Decades
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- Опубликовано: 15 сен 2024
- The WHO classified ME as neurological in 1969 but 80% of doctors still believe its psychosomatic [1]. Many doctors still don't know that over the last 35 years there have been over 9000 scientific publications that compared people with the illness to healthy people and they find a whole variety of abnormalities, like energy metabolism.
Medicine has a history of providing psychological explanations for poorly understood conditions with "little or no evidence" [2]. The psychosocial view of ME started in the 1970s. Two psychiatrists wrote an influential article that described an outbreak of ME as "mass hysteria" despite not seeing any patients [3].
In the 1980s ME was renamed and redefined as Chronic Fatigue Syndrome (CFS), which broadened the criteria, "trivialised"the severity and "stigmatised" people with the disease [4,5]. Psychiatrists argued that there was no underlying disease and the process was "reversible" by adjusting thoughts and behaviour. The theory claims that patients become deconditioned due to a prolonged period of rest following an illness, such as a viral infection. They become sensitive to activity, develop a fear of exercise and get trapped in a vicious circle of disability [6,7].
Psychiatrists developed Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as treatments to change "unhelpful beliefs" and reverse "deconditioning" [6,8]. Exercise as a treatment is counterintuitive in patients with ME as even minimal mental or physical exertion leads to Post Exertional Malaise (PEM), a worsening of symptoms and reduced function [9].
"From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise". "The NICE guidelines do not fit" with the patient experience and "perpetuated my misunderstanding" of ME by recommending Cognitive Behavioural Therapy and Graded Exercise - Dr Nina Muirhead ME Patient and Specialist Surgeon in Dermatology [10].
Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [11]. "Graded exercise has untold physical damage to thousands Of people [with ME] if it were a drug, it would have lost its licence. The psychological view of ME led to the controversial and now debunked PACE trial. As the trial progressed and the results did not meet the authors' expectations, they simply lowered the threshold to define improvement" - Carol Monaghan MP [12].
The Centers for Disease Control and Prevention (CDC) in the US dropped Graded Exercise and Cognitive Behavioural Therapy as treatments for ME in 2017 [13]. NICE is currently updating its guidance, which is expected in December 2020 [14].
"These therapies have been promoted by a group of psychiatrists, neurorehabilitationists and therapists, but with other physicians largely unaware of what was going on until recently few have read the trial reports [15].
ME receives 20 x less research funding than MS despite having 2.5 x as many patients in the UK and ME patients being equally (or similarly) disabled [16,17,18]. The vast majority of money was spent on behavioural studies. These failed to provide evidence for the psychological model as treatments showed no improvements on objective measures [19,20].
In the last 30 years biomedical research into ME has been massively underfunded, no drugs are available and there is nothing on the horizon. In a similar period MS has seen a dramatic shift from no treatments to 14 disease modifying drugs available in the UK and over 25 in development [21].
[1] bit.ly/2yFAtY8
[2] bit.ly/2xRPZjw
[3] bit.ly/2Lg5fK8
[4] bit.ly/3bjR5lM
[5] bit.ly/2Wz2Y1C (8 mins 48)
[6] bit.ly/2YQ3NWG
[7] bit.ly/2YMZICH
[8] bit.ly/2yHSjd5
[9] bit.ly/2yz1iNY
[10] bit.ly/2YNf4XW
[11] bit.ly/2WftyOA
[12] bit.ly/3fz7UfP
[13] bit.ly/3bi6q6b
[14] bit.ly/3cgObzy
[15] bit.ly/3durYxX
[16] bit.ly/2SLIfXq
[17] bit.ly/3biVfdJ
[18] bit.ly/3cjzVpI
[19] bit.ly/2SPc61f
[20] bit.ly/2YOMXro
[21] bit.ly/2WKcajS
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I hate this disease so much. I was fine having Crohn's disease and accepted that my life would have to be different because of having it. Then this stupid, evil disease came and stole what little dreams/plans the Crohn's had left. I hate literally every aspect of having this disease; there are NO positives or silver linings here. Thank you for making this video; education for the medical community and regular people about CFS/ME is desperately needed!
Sorry to hear this Hayley. Thanks for sharing your thoughts.
The medical community have no clue how debilitating ME/CFS is. I have multiple autoimmune diseases that are treated far more seriously than ME/CFS, yet I could work and live an almost normal life if that was all I had. Specialists will only treat my autoimmune diseases and refuse to ‘even try’ and help me with ME/CFS symptoms, which have taken away most of my ability to function and I’m now 95% housebound. They think it’s no big deal and I should just live with it. I think education in the medical community is just as important as more biomedical research, so less harm is done to patients while we wait for effective treatments.
Hayley, you could try Ampligen (Rintatolimod) if you have an abnormal RnaseL. It is expensive though.
We are waiting and waiting and waiting for biomedical research.
And the stigma continues..
THANK YOU for sharing the video here on YT
Is ME the inability to absorb T3 into the cells?
@@MP-uo6qd Not every ME patient has thyroid problems although many like myself do.
@@TaraSykes3 If you have thyroid problems then you don't have ME lol. And I am thinking that ME is the inability to absorb T3 into the cells like Dr SKinner told me years ago. Also, there may be damage done if people start late taking thyroid meds. This is what I am currently thinking ME might be.
@@MP-uo6qd my mitochondria was running at 12% is was when originally tested.
Thyroid issues came 15 years into my ME.
@@TaraSykes3 I went for an RNaseL Test in Brussels years ago when I first got it but it was negative I think. I still have ME though albeit I have mostly recovered nowadays but had a relapse of post exertional malaise withy brain fog few weeks ago.
Well done. Nice to see Dr Muirhead in this video giving her view. Most important video this year I think. Thumbs up :)
Thank you much appreciated 👍
Thank you B
roken B
attery and all who took part.
Thank you from France. I am a severe ME.
In France , we have got only one 4 doctors who can diagnostic ME.
We are very late in France...
There is no reasearch in France.
And some "old doctors" think it is in the head !!! I was Moderate , and because of doing exercices , I became Severe.
It is incredible !!!!
We need help.
Sorry to hear that. Exercise made me severe too. It's unbelievable.
How are you now
@@BrokenBatteryanything what creates a stressor makes it worse uses the energy
I was a member of TWO rescue organisations, a Community Nurse Manager and oversaw two wards. To be told that I could exercise my way back to health was gaslighting and damaging in the extreme.
I was fortunate enough to have "benign neglect" from clinicians who said "exercise is nonnegotiable" but somehow didn't enforce it. They knew as well as I did it was a harmful approach but couldn't officially challenge it due to the stranglehold of the psychosomatic model which it's terrifying to see how they've got away REPEATEDLY with bad science and cruel practice that would get other clinicians struck off
Thank you
Thanks for putting together this video. I underwent CBT/GET and it was quite psychologically damaging being told that you were causing the illness with your unhelpful beliefs. It's a catch 22, because whenever I provided evidence disproving what they were teaching us it was just further evidence of my 'unhelpful illness beliefs' like I was some kind of conspiracy theorist.
The local hospital has since shut down the program thank god but the Dr heading the clinic told me it was because the physiotherapists refused to run to programme anymore after 'bullying' from the local ME support group, not because the treatment was ineffective.
Sorry to hear that Juliet. I was the same. I found being gaslighted by medical professionals really hard too. They didn't want to listen either. I'm glad they have stopped the treatments but disappointing they think it's because of campaigning.
I'm sorry you both had to go through this. Well done on having spoken up. Eventually, the numpties will see sense.
Im sorry to hear that. I was physically in a very good shape when I came down with ME and that was visible.I was very keen on sports. Unfortunately that didn‘t prevent doctors from forcing me to exercise.ironically,my sudden(!) inability to exercise and lift my arms upon my head was the reason I went to the doctor in the first place. I was moderate and after a year of following doctors advice I became very severe for a year(completely bedridden,NOT able to read or speak,often couldn‘t open my eyes.Now, 2years later, Im severe but can read every now and then and come here on YT on a good day. but still completely bedbound.Doctors did harm me and like many ME-cases,they got away with it.
Thank you for sharing 🤝👀
Thank you ! On point.
Wish I could send this to my GP. He refuses to accept the diagnosis a specialist in ME gave me.
Find a new gp.
Thank you so much for this video & thanks to everyone who took contributed.
This is such an important video, brilliantly done.
Thankyou 👍
Another fantastic video, what a great channel you’ve put together. I’ll be leaning on so many of these resources in my campaign to educate people about ME
Thank you much appreciated and thanks for sharing.
I had very complicated blood tests at the ncned research centre in Australia it showed my NK killer cell cytotoxic% level was 4,01% the ref range is 13.8-38.4 so very low ie i have no T-cells to speak of, every m.e sufferer should have this test but it's very expensive
This has almost made me cry. I was diagnosed over 25 years ago after 4 years of symptoms. I stopped researching it after 10 years. Only to have recently started seeing it on RUclips. I now have stage 4 copd and it is becoming obvious my copd is connected with ME. But I am in my final year of life. Maybe things would be different if my lung specialists acknowledged my ME 😢
💙
Has the COPD caused your me then have you tryed nac for the copd
Brilliant video with all the important headline issues. I wonder what the post-covid19 world will look like for #pwme & cfs? How long will it take governments to take action & how much will they spend? Keep up the great work❤️
Thankyou. Interesting question. Hopefully history won't repeat itself.
This from Sense about science is well worth looking up and reading, PACE: The research that sparked a patient rebellion and challenged medicine by sasusa | Mar 21, 2016 | Study design | 44 comments" Here is 3rd paragraph of article, "The question of how all this happened and how the criticism is being handled have sent shockwaves through medicine. The results from PACE (including these) have been published in prestigious journals and influenced public health recommendations around the world; and yet, unraveling this design and the characterization of the outcomes of the trial has left many people, including me, unsure this study has any scientific merit. How did the study go unchallenged for five years? And how could journalists have recognized the problems before reporting unqualified, but unjustified, good news?
There were problems with the study on almost all levels, but our goal in this piece is to examine a critical issue that is increasingly being talked about in academic research but less so in the news media, due to its complexity: study design."
That's a great article. Thanks.
THANK YOU FOR MAKING THIS VIDEO!
I wish there were 20% of doctors who take it seriously
It's not like that in most countries
In Germany it's 0,0001% maybe 0,0002%
I'm sorry Blake. I've heard it's really bad in Germany.
How I’ve prayed that my spouse, my doctor, my friends could spend FIVE MINUTES in my skin. About 3 decades with this crap (and bad glare right now), most doctors stink… I saw about 5 doctors before a female internist took me seriously, back in the early 1990’s. I’m still struggling and was declined for SSDI a week ago (I’m 59).
4:25 it's not a mental health conditions
Isnt it sad how few views this video has?? This sums up the total lack of interest the medics have in trying to help us. Only sufferers seem to have watched. 34 years of being treated like something they stood in gor me
Their one attempt eas a graded exercise programme that made me worse. Tuping this means my arm will sufferfir days. X goodluck everyone .
Can we get a german subtitle here? I‘d like to help, if necessary.
That would be great but would need you to translate, can you send me a message on Twitter or Facebook links are in the about section of my channel. Thanks
I'm have been having alot of these symptoms and just seen this video, im struggling with energy and sleep 3 to 4 hours sometimes in the day or in the evening and still feel exhausted, I work for myself and its effecting my life significantly..... Is there anything that can help fight these symptoms even if its just a alittle????? Massive thanks for this video
Rest and pacing are the most important things. Then I would try and get a diagnosis as soon as you can and find a specialist. It depends where you are, if you are in the US, this may be helpful, I've not read it but it's from a coalition of respected US doctors.
twitter.com/exceedhergrasp1/status/1382533809640333316?s=19
In the UK I would order a copy of the purple book from the ME Association. I would then discuss anything you find in these materials with your doctor.
I have had this for years, I have a Question, I suffer from travel sickness as well and for the first time took travel sickness tablets and my symptoms gotten worse, has anyone experienced this before?