I have seen the same and been appalled by villifying and swearing directed at people or groups who have differing views and since they are not in the group, people and groups can't stand up for themselves.
Since these groups are closed and secretive and other pwME can't see what's going on, it sets a frightening precedent, and no one is allowed to talk about it outside.
As
@Alton said, the narrative is being controlled and if everyone could see what's happening there, people will be very alarmed.
Can you please tell us
@JenB why did you feel the need to set up Four FB Groups (for pwME who are being diagnosed with structural problems by a selected number of surgeons), most of which are hidden and atleast some of which you seem to be the only admin? Just to remind you that you are supposed to be an Advocate for all of us at least as far as MEAction goes.
I personally find open discussion much more healthy. I am in no closed groups, never have felt need, but I recognise, of course, it is one’s absolute personal choice to participate in such groups or not.
But I do know in the public Twitter sphere, those opposed to the CCI narrative, or at least opposed to the overstated authority embedded in this hyperbolic narrative, will likely find themselves blocked if they challenge ‘CCI causes ME’ in any kind of robust way.
I wonder why we, as a majority of patients, are just supposed to blindly accept this CCI narrative that is being heavily promoted by a few?
And this controlling of narrative, and suppression of ‘dissent’ is exactly what Wessely and co have been doing, in a much more blatant way, for decades.
It seems also, to me, overlooked by the ‘proponents’ of CCI that many of us have lost decades to this illness, some of us ill since young adults. We actually have a great deal invested in getting to the truth of what ME is, we perhaps have the most to gain by science progressing. We don’t just dismiss unevidenced claims for the sake of it. We are, I think, weary beyond words of the hypotheses that come and go - and we are cautious, we have to be.
Perhaps, though, you have to have actually lived through what UK psychiatry did to ME patients in late 80s/early 90s - hijacking the research arena, reframing the entire illness, wilfully misrepresenting the patient voice - to fully appreciate the absolute need for clarity and responsibility and consistency in the language you choose to use in advocacy.
But I really don’t understand that anyone who has had a diagnosis of ME and has experienced the lack of belief/dystopia firsthand, is so willing to be careless with rhetoric.
Carelessness of rhetoric, whether it is around CCI, or any other aspect of this illness, is simply not an option. The space we inhabit as pwME is already fragile, hard won, and we have simply had enough dystopia, without introducing another layer.
Still, I am not surprised that there are so many splinter groups and loyalties, the illness has become so very politicised. But maybe we can agree, for now, not to be encouraging pwME to be seeking upright MRIs they don’t really need. Unless they actually have symptoms that would indicate the need.
