Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

Thank you all for your kind words. I wrote it almost on autopilot but rereading it as published I had that sense of 'how could this have happened?' that I'm sure many of you can relate to.

@Peter Trewhitt I was worried about that too but didn't have the spoons to go trawling for references. I'm glad it's there for posterity and for hopefully challenging some views.
 
I absolutely loathe how the BPS & Mind Body lobby continually name call MECFS advocates (both patients & scientists) “Activists”. It is nasty & intentional undermining. I don’t want to see us debase ourselves to their level but I honestly believe they are cultists.

I know what you mean.

We could just steal the term back from them, though. I know where you can get Make Activism Great Again hats.
 
I absolutely loathe how the BPS & Mind Body lobby continually name call MECFS advocates (both patients & scientists) “Activists”.

"Activist" is not considered a dirty or insultng word in the U.S. I only consider it insulting myself if it is meant that way, as it always is when used by these people. The term "campaigner," used in an equially insulting way in the UK as "activist," from my perception, is not used at all in the U.S.--that I have noticed, anyway.
 
I absolutely loathe how the BPS & Mind Body lobby continually name call MECFS advocates (both patients & scientists) “Activists”. It is nasty & intentional undermining.
Call them the same back. What the likes of Garner are doing is straight hardcore political activism, with all the trappings.

I don’t want to see us debase ourselves to their level but I honestly believe they are cultists.
Psychosomatics, as espoused by the likes of Garner, is basically a cult, and a very nasty disturbing insidious one.
 
Activist («Aktivist», so essentially the same word) has a negative connotation in Norwegian. It is usually linked to ideology and having controversial viewpoints. So that shapes my perception of the English word.
Maybe also in French. But thr mainstream state media tends to go further and label anyone (especially young leftists for some reason), as “militants” whenever they advocate for issues/opinions not represented by mainstream political parties.

It’s what a less biased news source in the Anglophone world might call “Grassroots”.
 
In case anybody ever thinks we are ever being too hard on Wessely:

He was doing this before any trials had been done assessing his claims.
Indeed, The BMJ, and the many other titles under the BMJ publishing umbrella, have for decades provided opportunities for the GET/CBT zealots to air their theories about deconditioning and problematic illness beliefs as causal factors for ME/CFS—theories now extended to Long Covid. A 1989 letter written by Dr Melvin Ramsey, an early ME researcher, reveals the historical nature of this prejudicial and biased approach.

Dr. Ramsey investigated the 1950s disease outbreak at London’s Royal Free Hospital, the event that subsequently gave rise to the name “myalgic encephalomyelitis.” In 2021, an invaluable Twitter (now X) account, Royal Free 1955, which has released an impressive archive of relevant documents, posted Dr. Ramsey’s letter. In the letter, addressed to someone named Edith, Dr. Ramsey discussed the challenges he was confronting in trying to publish ME-related research. Here’s the key section:

“For many months we have been in difficulty by the influence exerted by a psychiatrist, Dr. Simon Wessly [sic] who has secured for himself the position of referee to the BMJ whose Assistant Editor has been strongly anti-ME and we cannot get anything published in British medical journals in our favor. Simon Wessly cuts right across my fundamental tenet of “rest” for chronic M.E. cases and tries to get them admitted to Psychiatric Units where they are immediately put on vigorous exercise.”
 
In case anybody ever thinks we are ever being too hard on Wessely:

He was doing this before any trials had been done assessing his claims.

It really drives home how political (in the true sense) this has always been. Wessely and his colleagues captured the institutions that could have helped pwME and told a compelling story that reinforced existing predudices and told those in power what they wanted to hear.

If recent rumblings round here are to believed though, our story might soon become a whole lot more compelling than theirs.
 
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