World ME Alliance, was previously IAFME: International Alliance for ME

That only just occurred to you?! We clearly don't go on about it enough then!

 

I think there's a distinction between realising that AfME could have a big impact if it spoke out against PACE (on the one hand) and realising that its unique position would mean that its statement could have a much bigger impact than that of other charities who have spoken out.

Which makes it all the more important that AfME do speak out.

It's becoming more and more widely known what a disaster PACE was but I think we're approaching a moment when it's going to be known a very great deal more widely - and I think Carol Monaghan's efforts are going to be what carries everyone's work forward and gains far more widespread national attention.

There's a window of opportunity for AfME to be on the right side of history but that window is closing fast. I can only think that AfME perhaps have an old guard who were responsible for AfME's involvement in PACE and who are digging their heels in against speaking out. I can't otherwise account for AfME's current behaviour over PACE. If that's the case, then that old guard needs ditching, ASAP, because they're not acting in the interests of patients.

@Action for M.E.

 

Merged thread

Code:

https://www.facebook.com/IAforME/posts/741782479527220

Document can be found here, https://www.actionforme.org.uk/uploads/images/2018/12/IAFME-recognition-research-respect-041218.pdf

 

There seems to be a mistake with the signature from Canada being from Colorado.
It seems that National FM/ME Canada did not sign or were not asked.

 

The list of signatories is very interesting. BACME and Pariante are among them.

 

I didn't catch that. What are they playing at? Perhaps it's an indication of their savvy. At arse covering.

 

Possibly they realise the research money is going to move elsewhere. Follow the money!

 

"While not formally classified as such, ME and CFS have often been grouped with Medically Unexplained Symptoms, Functional Somatic Syndrome, Somatic Symptom Disorder, Bodily Distress Syndrome, and similar terms (Improving Access to Psychological Therapies, 2014; Fink, 2017). This continues to put ME at high risk of being treated erroneously as a psychological illness."

have often? doesn't she mean are? at high risk of being treated as psychological? is being treated as such.

Why are AfME now raising these issues with WHO having barely raised any of them with the people responsible here?

I don't get it.

Meanwhile see the (non)answer to the question in HOC about NICE and recognising the WHO classification of ME as neurological.

also not impressed if BACME and co continue to 'control the narrative'; saving their behinds(?)

 

I thought the document looked alright. Suitable emphasis on post exertional effects. And that “chronic fatigue” is a symptom, and should not be conflated with ME. Even mentions problems of MUS.

 

Or we may be about to witness the rare phenomenon of leopards changing their spots( purely for self-interest!)

 

I think, given BACME's submission to NICE (which also asked for more research into biomedical treatments), this indicates a possible sea change. Even if they're following the money, that's a good thing in the end.

To me, the statement doesn't really suggest they want to keep a separate 'fatigue spectrum' entity.

 

Thanks for posting, and to those commenting. The politics of this do seem a bit interesting.

 

Maybe. But they criticise PACE and Cochrane as being flawed, and write:

I.e., they're saying pacing is what 'disease experts' prefer, rather than the usual combo of CBT/GET.

They also go beyond limiting the illness to the ANS:

I think that if they've signed this and don't actually believe these things, then that's a bit of an own goal. It reads like a manifesto to me.

 

I was curious about the bit where they said “. . . disease experts recommend . . .”, - they didn’t say exactly who they were referring to. That bit was not referenced.

 

key speakers at the BACME conference were Esther Crawley (former Chair) and Per Fink (not a member).

Their CFS/ME Therapy download (from 2014) says:
"
Guidance for therapists covering the provision of therapy for CFS/ME. This includes a
list of resources (available on the website BACME.info) for use in therapy, as well as
guidance on support and supervision.
It does not replace specialist CBT and GET training (recommended by NICE and available at
www.PACEtrial.org). "

(note, most of the links no longer work).

I can't find info on the current BACME executive committee.
Their constitution is here:
https://www.bacme.info/sites/bacme.info/files/pdf/bacme-constitution.pdf

presumably they signed up on behalf of their members (as with Forward ME group) (?)

If they really believed what they signed they would not still be doing research into CBT/GET and offering it as treatment, and they would have demanded that CBT/GET be removed from the NICE guidelines immediately.