New Video: The Lost Decades

https://www.youtube.com/watch?v=AbIRPD_3JtY

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 [12]. "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 [21,22].

[1] https://bit.ly/2yFAtY8
[2] https://bit.ly/2xRPZjw
[3] https://bit.ly/2Lg5fK8
[4] https://bit.ly/3bjR5lM
[5] https://bit.ly/2Wz2Y1C (8 mins 48)
[6] https://bit.ly/2YQ3NWG
[7] https://bit.ly/2YMZICH
[8] https://bit.ly/2yHSjd5
[9] https://bit.ly/2yz1iNY
[10] https://bit.ly/2YNf4XW
[11] https://bit.ly/2WftyOA
[12] https://bit.ly/3fz7UfP
[13] https://bit.ly/3cgObzy
[14] https://bit.ly/3bi6q6b
[15] https://bit.ly/3durYxX
[16] https://bit.ly/2SLIfXq
[17] https://bit.ly/3biVfdJ
[18] https://bit.ly/3cjzVpI
[19] https://bit.ly/2SPc61f
[20] https://bit.ly/2YOMXro
[21] https://bit.ly/2WKcajS

 

Thanks @Hutan

 

Amazing how much info you are able to communicate in your videos @Adam pwme
A summary of the whole ME saga in seven minutes is quite a deed!

 

Thanks Kalliope! Much appreciated.

 

Thanks Trish. Asolutely it's appalling, I still can't quite believe it.

 

Terrific video - well done! @Adam pwme
So many more recently diagnosed have no idea of what so many of us have lived through it know well.

 

Thanks ForestVon. Exactly It’s a Pandora’s box.

 

another great video liked and shared . thanks.

 

Too ill to watch the video, but your concise and succinct summary is excellent!

Thank you so much.

 

Thanks @alktipping

 

Thanks @Squeezy.

 

I sent the video to my 20 year old daughter and she texted back:

"OMG it's brilliant! So impressive. Slams f*****g PACE. Harvard doc first up! POW! MPs in parliament! Send it to EVERYONE! Talk about validating! I'm sending it to all my friends!"

 

Thanks Squuezy. That’s great to hear. And thanks for sharing too.

 

I have had a little time lately to do some thinking, and have decided that it is time to name this new syndrome. I call it CCFS – chronic CBT faith syndrome: the criteria for membership, the Old Crocks Board Criteria, simply needs 6 months or more of an unshakeable belief that CBT can treat or even cure ME, apparently not understanding the reality of the evidence, and without there being any medical explanation for such stupidity.

Sadly it has spread widely in the medical profession, and is clearly a good example of mass hysteria. The only treatment for it is sustained GET – graded educational training.

Of course I have no evidence to support this point of view, but would simply remind readers of my extensive experience in this field, and will shortly be providing appropriate courses for those who wish to treat this condition. Naturally, when knighted for my contribution in this field, I will not completely forget all the support you have given me over the years.

Thanks Adam for another great summary! I do have one small request though: please could your reduce the volume of the music a little. If I have the playback volume set right for speech (and I am a deaf old geezer), the music is a little too penetrating.

 

Lol an excellent summary!
Thanks Graham. I will make a note for future videos as I can’t edit videos once they are up. It does have subtitles if that helps.

 

This is really excellent, thanks so much Adam, it's succinct, informative and really powerful. Thanks v much for all your work on all your videos x

I've reached 40 years now of this disease and it is so depressing that such little progress has been made. It truly is a scandal that this has been allowed to happen, and continues to happen.

 

Thanks Daisymay, I can't imagine what 40 years of this would be like. Your absolutely right, It's a massive scandal.

 

Subtitles now available in Dutch.