Thank you for your response, @Wilhelmina Jenkins. I hesitated about saying anything critical about #MEAction specifically, as I see similar problems in other ME organisations.
I would hope #MEAction, as a newer organisation inviting feedback from pwME would want to be wary of falling into the same traps those other organisations have done, that have left people like me feeling we are not being well represented or supported and don't have a home in those organisations because of their actions.
For example, I will not join AfME in the UK, and have let my membership of the MEA lapse because of some of the stuff they have published, of which I have been very critical on this forum.
There is much to admire about #MEAction, and I wish all its board, staff and members well in their endeavours. In my comments I was hoping to point to some of the traps other ME organisations have fallen into, and suggesting that it would be good for #MEAction to write into their principles, safeguards against falling into the same traps.
The particular instance I was thinking of here was the MEA in the UK, whose chairman recently published an article of his personal story in which he made unproven and unhelpful recommendations about managing ME based on his own experience.
Even when writing in a personal capacity, he is seen as representative of the organisation, and people with ME and their carers will take his statements seriously. To write that everyone with ME should get out of bed an get dressed every day is unhelpful and unkind to those too sick to do this, and can be misinterpreted as an authoritative recommendation from the organisation he represents.
And yet I also admire and am very grateful to the MEA for a lot of the work they do. If they were to invite comments from pwME about their values and principles, I would want to spell this sort of instance out to them as problematic.
I was simply applying the same sort of idea for #MEAction. To me it does matter what board members and senior staff say publicly, even in a personal capacity, about their own experiences and their theories about them.
Again, I was thinking of other organisations too. The instance I would give is AfME in the UK, whose publications are seriously problematic, being still based on their idea of 'active pacing' which is GET in all but name. I wrote a very critical letter to them last year about one of their documents about ME and work, which made inappropriate recommendations and statements about forward planning and rehabilitation for pwME. Partly as a consequence of my letter, that document has been withdrawn. But there is still an underlying problem with AfME basing its materials on ideas without scientific basis, and not seeming to understand the problem in this.
It does matter what is published in the name of an ME organisation. My personal view on MEPedia is that is was fine while it stuck to pages on the history and personalities associated with ME, but has come badly unstuck on its science pages. That is not a criticism of the individuals who have put a lot of energy into contributing to it, it is a criticism of the whole enterprise for stepping outside the area of expertise of many of its contributors, and inevitably falling into the trap of enabling unscientific claims and information to be published on the site.
Better, in my opinion, to publish nothing on sceintific issues, than to publish misleading articles. I don't think saying it's a Wiki is good enough. It is an #MEAction project, and, in my view, needs to stand up to scrutiny in the same way as all other publications.
However, I can see we are going to have to agree to disagree on this, so I will say no more.
I apologise to @Michiel Tack for diverting his thread. I will shut up about this now.
