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

Sean said:
Without wanting to get anybody's hopes up, it does seem there is a broad change starting to come through in the UK.

Have certain 'players' in this decades long tragi-farce been read the riot act in private about raising their scientific and ethical standards?
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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.
 
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.
 
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rvallee said:
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.
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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. :rolleyes:

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.
 
It's interesting that this is signed by both BACME and the CMRC, as one person is a member of both, Gabrielle Murphy, who is also a member of the NICE Guideline Committee. So she has agreed all the facts of the statement. That may be of interest to patient reps on the committee.
 
It's interesting, but membership of an organisation doesn't mean that you agree with everything the organisation signs up to.

Dr Ros Vallings, medical advisor to ANZMES, believes that people with ME are excitable and Type A personalities, and yet ANZMES signed this IAFME statement that says, among other things, that there is no evidence that personality predisposes someone to the illness or perpetuates it.
 
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).
 
Sly Saint said:
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)."
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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?
 
chrisb said:
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?
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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.
 
rvallee said:
Makes me think of a study I saw passing on Twitter where they asked participants about a hypothetical scenario where someone is labeled as CFS and another is not and participants report feeling more sympathetic towards the CFS label and so it's a net positive and therefore likely means this happens in real life.

No actual patients involved. Nobody asked any patient if this is true, because it would have shown the exact opposite of the imaginary scenario they created. Hell, don't even need to ask, there is already extensive evidence that the opposite is true and this is one of the most highly stigmatized diseases out there, in large part because of the fictitious construct of chronic fatigue and its syndromes, whatever that is.
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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):
Since January 2018, a new initiative called the International Alliance for Myalgic Encephalomyelitis (IAFME) has been working on getting M.E on the agenda of the World Health Organisation (WHO). What and Who is IAFME? And Why this work vis-a-vis the WHO?

The IAFME is a collaboration between national organisations. Its purpose is to encourage an appropriate public health response from the World Health Organisation and its Member States to meet the needs of people living with M.E. IAFME seeks to work collaboratively and inclusively as part of a worldwide advocacy movement alongside the current mobilisation of the M.E community.

This webinar is an opportunity to better understand the raison d’être of the IAFME. Alexandra Heumber, Director of IAFME, based in Geneva, will present the IAFME, will explain in detail the purpose of the organisation and its objectives and will respond to your questions.
Join us on Thurs January 24, 2019 at 1:00 PM EST. IAFME has the potential to achieve major advancements in the awareness and management of ME. We will all benefit from their work.

Attendance are limited, so please register and join the webinar early so you are not disappointed. Here is a link to register: https://zoom.us/webinar/register/WN_6Nc6Fzw4Q5qWtApgEb2yiA
We ask that you please let others know about this webinar. Thank you.
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