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

Is there anyone in a position to do such reading who is not himself mired in this?

Mind you, it would be fun if they started falling out amongst themselves. Then we might find out what had been going on.

 

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https://twitter.com/user/status/1070799806317191173

 

The only useful action BACME can take is to be dissolved, all their members retired in shame from the profession and forever holding silence about their stupid ideas. They will never bring anything useful to the field. Any involvement of theirs should be treated with high suspicion.

That being said, I think they're just angling to pretend to agree to positive change while working behind the scenes to sabotage the whole effort. I just hope this is how the other organisations treat their involvement because there is zero chance this is a good faith effort.

It's possible they'll keep trying to be relevant by switching the framing to being palliative, but I highly doubt that given the transparent efforts to sabotage the NICE guidelines. They just understand that after decades of their ideas dominating the field with absolutely nothing to show for it, they can't control the conversation like they did in the early days. But their intent is absolutely to sabotage us, their past work makes that very clear.

 

This would be my sense of their position also.

They are not people who are professionally equipped (training) to move forward with biomedical treatment or research. They (and all the others) have strategically positioned themselves with the flawed mind/body woo (which needed to have some light shone on the concept). So that they will not loose out but continue to offer an 'important' modality of treatment for any number of illnesses based on the fact that the mind is involved whenever the body is.

Defending an illness as neurological is also irrelevant as neurology has been systematically infused with psychiatric woo for some time now. It has been IMO the premiere way of keeping psychiatry from it's demise as not very relevant except in a few situations where they have expertise in handling pharmacologic treatment for things like schizophrenia, psychosis and perhaps a few other ailments that could have fallen under neurology primarily if the field had been better developed sooner.

 

BACME guidelines (linked to all over NHS sites etc):

"Once a diagnosis has been made, patients should be considered for further evaluation to see if
they would benefit from the evidence based treatments (CBT–cognitive behaviour therapy and GET
–graded exercise therapy)."

Removal of just this paragraph, or adding a caution would not be difficult and could change a lot.

(But they won't do it because it is what the majority, if not all, of their members rely on for their livelihoods).

 

Do we have, anywhere, information as to the nature of any such evaluation and the criteria which might be used to determine whether people would benefit from such treatments? Who would they rule out?

 

This is an interesting point. How would anyone know how to evaluate patients and 'determine' whether they would benefit? In most of medicine it is accepted that we simply don't have ways to do this for standard treatments. There is every reason to discuss treatment options with patients and see which they might prefer, for whatever reasons, but that is quite different from 'determining' whether they would benefit.

I think it would be interesting to ask BACME where this advice comes from and on what evidence it is based.

 

I do not wish to drag this thread of topic but it is worth mentioning on this point that the same thought struck me about discussion of the Nick Duerden book. The synopsis provided by @Trish indicated that he was rejected by the local service for CBT apparently because his anxiety was insufficient to merit the treatment. Is this the long awaited admission that the treatment is merely for the anxiety and possibly depression, and does not touch the ME.

 

Sorry if I misquoted. I know it was one or the other. The underlying point remains the same whichever it was.

 

I don't remember that. Where did you see that?

 

I think I have misremembered so have deleted post.

 

Maybe a bit off-topic for the thread but I would have liked a diagnosis of CFS over nothing during the 5.5 years before I was diagnosed. Having lots of vague and sometimes shifting symptoms meant I got little support.

 

Merged thread

I saw this on the Facebook page of the International Alliance For ME (IAFME):

 

Thank you for posting that. I've sent off a request.

Thursday is busy as we have the UK parliamentary debate in the afternoon. I think this webinar is around 18:00 UK time though.

 

Is there a website for IAFME?
Is this group different from IACFSME?