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AFME and AYME Merger

Binkie4

Binkie4

Senior Member
Messages
644
thanks @AndyPR

Am interested in answer to this. I am not sure if the power at AfME lies in Sonia Chowdhury's hands, with the Board doing her wishes, or if there's some genuine power in the Board. Think there may be a new Chair there.
 
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slysaint

slysaint

Senior Member
Messages
2,125
S

Solstice

Senior Member
Messages
641
AndyPR said:
And their reply is


Wasn't their board meant to be meeting before then? It was 13th March when we were told they had to wait for their board to meet before being able to take any action.
Click to expand...

I think so, yes. Thanks for keeping the pressure on. Would be nice if more people swarmed to this, i'm very curious as to what they'll do.
 
Binkie4

Binkie4

Senior Member
Messages
644
@slysaint @Countrygirl

Have tagged you Countrygirl because AfME are offering help/ support to anyone already affected by MUS.
What an irony!
@AndyPR - I have a recollection, but don't rely on it, memory not always reliable these days, that it was alwaysApril, i.e. along time away. I find it hard to see how they function with such infrequent meetings. Can't the decision be made by the Chair and CEO?
 
Y

Yogi

Senior Member
Messages
1,132
AndyPR said:
And their reply is


Wasn't their board meant to be meeting before then? It was 13th March when we were told they had to wait for their board to meet before being able to take any action.
Click to expand...
Meeting was end of April.


Action for M.E. has collaborated with other Forward M.E. charities to strongly support the call for M.E. to continue being classified as a neurological condition by the World Health Organisation (WHO).

In the WHO’s current (10th) edition of the International Classification of Diseases (ICD-10), postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome are classified as neurological.

Following uncertainty from the WHO about where these conditions might be listed in the next classification (ICD-11), which is currently being drafted, UK and US advocates Suzy Chapman and Mary Dimmock have prepared a detailed proposal recommending:

  • keeping the titles of M.E., Chronic Fatigue Syndrome (CFS) and Postviral Fatigue Syndrome in the chapter ‘Diseases of the nervous system’
  • having separate entries for M.E. and for CFS
  • referring to M.E. as ‘Myalgic encephalomyelitis,’ where previously it had been called ‘Benign myalgic encephalomyelitis.’
You can read about this in more detail on Suzy’s dx revision website.

Having been contacted by Suzy and Mary, we have worked with other Forward M.E. charities to prepare a statement that supports their proposal, and jointly submitted it to the WHO as Forward M.E., supported by the group’s Chair, the Countess of Mar.

As part of the statement, we say: “We are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome.’ Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome.’

“As the evidence gathered by this proposal so clearly demonstrates, this illness is a ‘serious, chronic, complex, and multisystem disease’ that causes significant impairment - including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.”

Forward M.E.’s full statement can be accessed online. If you register for an account, the proposal and statement can also be found in full on the ICD-11 forum.

What is the ICD-11?

Published by the World Health Organisation, the International Classification of Diseases is a system of diagnostic codes for classifying diseases, designed to map health conditions, and their specific variations, to larger and more general categories. Currently in its tenth revision (ICD-10, published in 1992), it is subject to minor annual updates and major triennial updates. ICD-11 was planned for 2017, but has been pushed back to 2018.

What are “medically unexplained symptoms”?

In February, the Joint Commissioning Panel for Mental Health published guidance for mental health commissioners, stating that M.E. is a functional somatic syndrome, and recommends a referral to services for patients with Medically Unexplained Symptoms (MUS).

Action for M.E. absolutely does not support this recommendation, and we are extremely concerned by the impact that we are beginning to see on people with M.E.

Some of you have got in touch to tell us that you are being challenged by your healthcare professional as to the validity of your M.E. diagnosis, and instead being told that you have MUS.

If this experience is familiar to you, or you are concerned by the definition of M.E. used by your healthcare professional, please contact us (p 2).

We would advise anyone faced with this to make it clear that:

  • M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition.
  • the NICE guideline makes it clear that specialist services for M.E. are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases
  • a considerable body of published, peer-reviewed evidence, as comprehensively referenced by the 2015 Institute of Medicine report, indicates growing evidence of potential neurological, immunological and endocrinological biomarkers in M.E. The report concluded (p 209) that: “It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”
Action for M.E. is undertaking work to highlight this to health professionals and policy-makers, and can offer information and support to anyone being referred to services they feel are inappropriate.
Click to expand...

This is the sanitised public version with AFME working behind the scenes to ensure ME becomes MUS with all the PACE authors .

We need to de-fund AFME and ensure AFME are given no support.
 
slysaint

slysaint

Senior Member
Messages
2,125
"Action for M.E. is undertaking work to highlight this to health professionals and policy-makers, and can offer information and support to anyone being referred to services they feel are inappropriate."

They like to have their cake and eat it..........don't do anything to prevent things like this happening, then produce literature to 'support' people when they do.
I noted that they have a leaflet on what to do if you get sectioned!
 
Countrygirl

Countrygirl

Senior Member
Messages
5,466
Location
UK
Binkie4 said:
@slysaint @Countrygirl

Have tagged you Countrygirl because AfME are offering help/ support to anyone already affected by MUS.
What an irony!
@AndyPR - I have a recollection, but don't rely on it, memory not always reliable these days, that it was alwaysApril, i.e. along time away. I find it hard to see how they function with such infrequent meetings. Can't the decision be made by the Chair and CEO?
Click to expand...

Hi @Binkie4 Thank you for thinking of me. I appreciate it; however, as AFME are part of the problem, I don't think I would request help from them. They have played a significant part in creating this horrible situation by their support of the PACE trial and giving their allegiance to the psycho babble brigade..........Wild horses and all that.............I would contact the MEA and probably will in the next few days. Thanks a lot though :hug:
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
As always AfME tends to look good on (virtual) paper but I just can't bring myself to trust them. Too much waffling -- saying the right things often but no ACTIONS backing it up.

I think slysaint captured it in a previous post.

If Sonya Chowdhury wanted to I believe she could sign as herself (not on behalf of AfME) but as an advocate of people with ME, no?
 
Binkie4

Binkie4

Senior Member
Messages
644
I posted a message on AfME fb page this morning re letter to Psychological Medicine. A very equivocal response. The Trustees did discuss it on Fri but they are not posting result yet.

If anyone can get it across here, please do. I don't have those skills - too old.

They seem to be playing around.
 
S

Solstice

Senior Member
Messages
641
Binkie4 said:
I posted a message on AfME fb page this morning re letter to Psychological Medicine. A very equivocal response. The Trustees did discuss it on Fri but they are not posting result yet.

If anyone can get it across here, please do. I don't have those skills - too old.

They seem to be playing around.
Click to expand...

Can't think of a good excuse to postpone posting results really. Well, hoping people forget about it perhaps.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Here's what Action for ME replied:

'The board did indeed meet last Friday. We’re in the process of agreeing any communication we will be making about the outcome of the meeting and when it’s ready we will post it.'
 
Binkie4

Binkie4

Senior Member
Messages
644
The link above in my second post does go to the AfME page. Look on R hand side, visitor posts.
 
Esther12

Esther12

Senior Member
Messages
13,774
I could be wrong, but to me it sounds like they're going to refuse to sign, and are scrabbling around to try to find a way of excusing the inexcusable.

If they'd done the decent thing surely it wouldn't be that difficult to get the wording announcing this right?
 
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