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

Andy said:
It just occurred to me that if AfME wanted to make a massive impact, they have the perfect tool - their past involvement with PACE. If they actually stepped forward, held their hands up and, at the very least, expressed their deep regret (although ideally it would be an apology) in regard to their PACE involvement, as well as a complete rejection of PACE, they could do a massive amount of good, especially with the current efforts in both the UK and Scottish Parliament. Sadly, I'm not going to hold my breath for them to take this step.
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That only just occurred to you?! We clearly don't go on about it enough then!
 
Esther12 said:
That only just occurred to you?! We clearly don't go on about it enough then!
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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.
 
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Merged thread
The International Alliance for Myalgic Encephalomyelitis (IAFME) has produced a trans-national consensus document covering Myalgic Encephalomyelitis (M.E.). Recognition, research and respect: An agenda for change in M.E has the support of over 60 clinicians, researchers, and non-governmental organisations from 28 different countries.

This document has been sent to the World Health Organisation by the Chair of the IAFME and Chief Executive of Action for M.E., Sonya Chowdhury, and the Executive Director of IAFME, Alexandra Heumber, requesting a meeting with representatives to discuss how they can work together to achieve the aims.

The IAFME is calling on the World Health Organisation (WHO) to take leadership for people living with M.E. worldwide who continue to face poor access to healthcare and support.

This consensus document has three aims:
1) To provide an overview of M.E. and the disease burden
2) To highlight barriers to progressing research in the M.E. field
3) To propose an agenda for change

Dr Heidi Nicholl, CEO Emerge Australia and Vice-Chair IAFME said, “This consensus document
is a result of collaborative work from international experts, academics and researchers. It represents an important step forward that will underpin the global advocacy led by the IAFME, and has the broad support from stakeholders around the world. We look forward to hearing from the World Health Organisation in response to the Alliance’s request that they co-ordinate a global public health response to M.E.”

For more information please contact Alexandra Heumber, Executive Director IAFME. (aheumber@iafme.org)
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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
 
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"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(?)
 
A second issue is that a number of studies on risk, prognosis, and the use of CBT and GET as treatment have been based on a psychogenic-deconditioning theory that the disease debility can be reversed by CBT and GET. This theory focuses on personality, psychological and behavioural issues as factors that predispose and perpetuate the disease. But no study has provided scientific evidence to support this theory. Furthermore, this disease theory cannot be reconciled with what is known about the biological impairment of ME or the reports from the National Academy of Medicine (2015) and patient surveys (Geraghty et al, 2017) that exertion can cause harm.
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The document isn't bad; it comes out pretty clearly against CBT and GET and 'personality, psychological and behavioural issues as factors that predispose and perpetuate the disease'. (The disease being ME). There are signatories there like Nigel Speight and Nina Muirhead.

The involvement of BACME and some other proponents of psychological causes of CFS is disconcerting. Presumably they are willing to hive off a section of the 'chronic fatigue' spectrum as a biologically caused 'ME', while retaining the majority as 'CFS' for their psychologically focused treatments.
 
Hutan said:
The document isn't bad; it comes out pretty clearly against CBT and GET and 'personality, psychological and behavioural issues as factors that predispose and perpetuate the disease'. (The disease being ME). There are signatories there like Nigel Speight and Nina Muirhead.

The involvement of BACME and some other proponents of psychological causes of CFS is disconcerting. Presumably they are willing to hive off a section of the 'chronic fatigue' spectrum as a biologically caused 'ME', while retaining the majority as 'CFS' for their psychologically focused treatments.
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Or we may be about to witness the rare phenomenon of leopards changing their spots( purely for self-interest!)
 
NelliePledge said:
:banghead:
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obeat said:
Or we may be about to witness the rare phenomenon of leopards changing their spots( purely for self-interest!)
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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.
 
adambeyoncelowe said:
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.
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They mean ANS when they say biomedical tho don’t they so they can still do CBT to calm down the high achiever type A personalities (dunno what they do with the cynical ones :whistle:)
 
NelliePledge said:
They mean ANS when they say biomedical tho don’t they so they can still do CBT to calm down the high achiever type A personalities (dunno what they do with the cynical ones :whistle:)
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Maybe. But they criticise PACE and Cochrane as being flawed, and write:
Instead of CBT and GET, we know that disease experts recommend that patients manage their activities to stay within their “energy envelope” to prevent crashes and possible long-term worsening from PEM. They also recommend pharmaceutical and non-pharmaceutical therapies to treat the symptoms, which can help improve the quality of life.
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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:
substantial evidence of neurological, immunological, autonomic and energy metabolism impairment.
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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.
 
adambeyoncelowe said:
I think that if they've signed this and don't actually believe these things, then that's a bit of an own goal.
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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.
 
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