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

...and exactly where they stand on the continuing recommendations re CBT (PACE style) and GET.

 

So, as far as I can determine at the moment, this is what can be known about the International Alliance for ME (and it's previous incarnation). Most of the information below taken from MEpedia but as I put it there I reckon that's OK.

2016

Action for ME sent a letter to the NIH, protesting the decision by the NIH to host a lecture by Edward Shorter on the history of ME. This letter was sent on behalf of the M.E./CFS International Alliance, a group involving "M.E. advocates and charity representatives from six countries". A thread on PR lists those originally named as belonging to this Alliance as;

• Sonya Chowdhury, CEO, Action for M.E., UK;
• Carol Head, CEO, Solve CFS, USA; Jen Brea, #MEAction, USA;
• David Mann, President, FM-CFS, Canada;
• Sally Missing, President, Emerge, Australia;
• Christina Montane, Board Member, Platforma de Familiar FM-SFC ACAF, Spain;
• David Cifre, Coordinator, Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain.

The same thread then details how both Solve and #MEAction weren't aware of their membership. The response from the NIH to this letter stated "In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward."

2018

AfME announced the establishment of the International Alliance for M.E, described as "an informal collaborative group" with "representation from the US, Australia, Spain, Pakistan, South Africa, Japan and the UK.". The specific members of this group weren't named.

The Alliance sends a letter to the WHO, this letter claims that these groups are part of the Alliance:

• ACAF - Associació Catalana d'Afectades i Afectats de Fibromiàlgia i d'altres Síndromes de Sensibilització Central, Spain
• Action for M.E., United Kingdom
• The American ME and CFS Society, United States
• Emerge Australia, Australia
• Forward ME, United Kingdom
• Japan ME Association, Japan
• ME CFS Foundation South Africa, South Africa
• Plataforma Familiars Fm-SFC-SQM, Spain
• Solve ME/CFS Initiative, United States

And claims the support (whatever that means) of:

• Association du Syndrome de Fatigue Chronique, France
• Lost Voices Stiftung (Foundation), Germany
• #MEAction, United Kingdom
• ME/CFS Association Switzerland / Verein ME/CFS Schweiz, Switzerland
• ME/FM Society of BC, Canada
• ME Research UK, United Kingdom
• Millions Missing Canada, Canada
• Millions Missing France, France
• National ME/FM Action Network, Canada
• Open Medicine Foundation, United States
• Welsh Association of ME & CFS Support (WAMES), United Kingdom

The Japan ME Association confirm their involvement.
ME Research UK confirm their support of the Alliance on Facebook.
ME CFS Foundation South Africa confirm their involvement.
A Facebook group is discovered for them.
A briefing document about the Alliance is discovered, dated May 2018.
Solve say they are "pleased to join with others around the world to call upon the World Health Organization to take action for #MECFS Awareness." in support of the letter.
Emerge confirm in April that they are part of the Alliance.
WAMES say they have co-signed the letter.
MillionsMissing Canada say they are supporting the letter.

It wouldn't surprise me at all if AfME will probably look at this and think I/we are making a lot of fuss about nothing, as we should be happy/grateful that international advocacy efforts are being made. But my concern is that the general patient population isn't being informed about this group, isn't being informed what it's goals are or how it intends to achieve them. Another concern is that the majority of the other groups who are claimed to be involved don't actually seem to be keen to announce the fact - this then makes me wonder how many are actually aware of or signed up to it.

 

Thanks @Andy for the summary.
I hope this initiative helps people with ME, but I'm also not impressed at the lack of transparency. I wonder too where the accountability to patients lies.

 

The question also is: Which of these organizations has members that they represent? So can these organizations trully say they represent people with ME?

E.g. Lost Voices Stiftung - which is doing good work - doesn't offer a membership if I understand their homepage correctly. So strictly, they are doing what they think is best, not what a membership might think best.

Although I think unity is a great thing, AfME playing a main role in this makes me suspicious due to the well-known facts.

 

Perhaps an open letter or communication from us (S4ME) to each of the members an and supporting cast might be in order? What do you think @Andy?

Outlining our concerns and asking for further information including a contact/liaison for the patient community.

 

i have not received an answer to this question.

@Action for M.E. would you be so kind as to answer the question?

 

I think when someone joins S4ME with the official AfME logo as their avatar and signs themselves

Then they should communicate and engage. If AfME's head of communication and engagement chooses not to communicate and engage I don't think going on a wild goose chase to Sonya Chowdhury is a solution. @Action for M.E. answering a few questions would be. The list of questions that is being ignored is getting rather long.

 

retweeted by IAME
https://twitter.com/user/status/997095269639450625


some responses:
https://twitter.com/user/status/997102216342331392

https://twitter.com/user/status/997100365425401857

https://twitter.com/user/status/997102470345224193

https://twitter.com/user/status/997396653916196864

 

Given that an S.I.W. is a clear indication of a desire to leave the battlefield, perhaps that is what members of Forward-ME have done.

Although shooting oneself in the foot is the common metaphor, unexplained injuries to the right hand could also be an indication.

 

in my browser, the quote shows with an upward-facing arrow on top, next to the name.

you can click on my quote of you, and then click on your quote of me, and one more, and you will find the question. you will also find that i asked it more than 2w ago.

it is a sincere question. it is particularly germane because they are traveling to geneva to REPRESENT US, and seemingly intend to set themselves up as a contact point for future representation of us. i agree with @TiredSam. they need to answer.

 

Merged thread

https://www.actionforme.org.uk/news/me-highlighted-at-the-71st-world-health-assembly

 

Page about the 71st Health Assembly on the WHO website for general background:

http://www.who.int/world-health-assembly/seventy-first

 

"Union for International Control (UICC)"
should be 'Union for International Cancer Control (UICC)'

"IAFME" or IAforME (@Andy maybe you need to change the other thread title(?)).

"led by Action for M.E." just incase people didn't know.

this was the 'invite' :
https://www.actionforme.org.uk/uploads/images/2018/05/final-WHA-side-event-invtation.pdf

"Turning to the urgent need for accelerated biomedical research, Prof Chris Ponting, University of Edinburgh, suggested four key areas of focus: a large-scale genome-wide association study that will help us understand the genetics of M.E.; cheap, longitudinal, population-scale immune system surveys; molecular and physiological measurements of people with M.E. following exercise; and taking action to ensure that case-control studies use more appropriate control cohorts with individuals with sedentary lives. He was also emphatic about the need to bring more new and established scientists into the field."

Not up to dissecting this atm.

 

Bolding mine.

Genome study - Does that sound like MEGA to you, or am I overly suspicious?

Post exercise measurements - Personally, I simply cannot afford to lose any
more ground and so would be reluctant to do this or ask someone else to.

What about diagnostic criteria?

Maybe I'm overly suspicious and cynical? I mean I hope for the best, but experience has taught me to expect the worst.

 

Well, maybe, but MEGA wasn't all bad. The huge sticking point with MEGA was the involvement of Crawley and other BPsers, and, as it turned out, the plans to start with a psych questionnaire before they did any biomed work at all. So a genome-wide association study using decent selection criteria could well be worth doing and would replicate some of the testing that the OMF is doing/has done in their Severely Ill Big Data project (https://omf.ngo/wp-content/uploads/2015/12/OMF-Severely-Ill-Big-Data-Study-revised-12-11-2015.pdf).

 

Perhaps I misunderstood @Andy, but did MEGA not also plan to repeat a lot of work already carried out by the Biobank?

In which case why not extend their remit as they've already done a lot of the work?

 

Yeah, they also wanted to setup up their own biobank which, as you say, would replicate what the existing Biobank already offers, except, possibly, with worse selection criteria (my speculation there). But a genome study doesn't automatically mean resurrecting this additional biobank idea, and a proposed genome study doesn't mean, to me at least, that Chris Ponting is planning to resurrect MEGA.