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.

 

"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.

 

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.

 

Activist is one thing we definitely are not. We are inactivists. That is precisely the problem. If we were able to be active, we would likely have solved this problem years ago.

 

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”.

 

I think this is an important word to bear in mind when responding to such as Miller et al, when we should ask why does the author mischaracterise any ME/CFS grassroots group as activists when they disagree their (the author’s) position?

 

https://virology.ws/2025/05/24/trial-by-error-more-on-the-bmj-opinion-piece-from-the-psychobabblers/

 

Thank you @dave30th for this excellent blog giving more context to this presentation of old wine in pretended new bottle.

 

Thank you.

 

Many thanks for writing this Dave, and for quoting my response. Although you have committed the unforgivable sin of stating I'm from Sussex!

(I'm actually from Suffolk)

 

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.

 

oops! Will correct!! Added: Done!!

 

Hi, just wondering what this is referring to???

 

There is a rather sternly worded comment from «FWM» that says you got it all wrong. I don’t have the energy to answer myself.