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New Org!: ME/CFS International Alliance

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Does anyone have any Information about this new ME Org called 'ME/CFS International Alliance'?
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There does not appear to be any online background information about it, especially about its Policies or Governance.


The only online information about the 'ME/CFS International Alliance' (that I could find) comes from the
UK Charity Action for ME Website, referencing the ME/CFS International Alliance's recent Statement re the Edward Shorter NIH lecture, Here:


https://www.actionforme.org.uk/news/me/cfs-international-alliance-protests-shorter-lecture/

'ME/CFS International Alliance protests Shorter lecture'



'Current members of the International Alliance are:

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'


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How long has the ME/CFS International Alliance been in existence?

Who is its Chair?

Who instigated the formation of the ME/CFS International Alliance?

Was the Instigator Sonia Chowdhury, CEO of Action for ME?

Why has there been no public announcement of the existence of the 'ME/CFS International Alliance', or details of its aims and objectives, or details of it's Governance/Policies?
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JohnCB

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That article was dated more than a couple of months ago. It may just have used a name of convenience for that one letter of protest, perhaps thinking they might build a longer term alliance on it. Maybe they are still talking to each other about forming a formal group. If in doubt, I suggest asking someone at AfME. If they can't tell us, no one can. ME and CFS organisations seem to come and go, it's pretty much impossible to keep up, I find. But this does seem odd. Perhaps the CMRC put an embargo on it?

You may may have spoilt their grand announcement :)

Edit. Apologies, I misread the date on the AfME article. Need new glasses or computre monitor. Article is in fact dated 9 November and I read it as September. Duh.
 
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@JohnCB .... The News Post on Action for ME Website referencing the ME/CFS International Alliance is very recent, November 9th.

"Asking someone at Action for ME"? Many of us have been asking questions to Action for ME for decades. When we receive relevent answers from that Charity we will let you know.

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JenB

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I was invited by AFME to join a call with organizations from around the world sometime just before or after MEAction's launch in 2015 and I said, "Sure" sometime last year. I have never joined a call. I did not realize this was a formal organization. I do not believe I have the authority to join a formal alliance like this on behalf of #MEAction without at least board approval, if not broader community approval. I am following up with Action for ME to clarify our involvement. Thanks.
 
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Hi @JenB ... Who exactly 'invited' you to "join a call" last year? I think you should state who it was, and provide details of the invitation.

And what was your response at that time?

We are trying to get to the bottom of this. Because there now appears to be an International ME Org (who no-one knows anything about) using the names of pre-existing high profile ME organisations and speaking in their name.
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eafw

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Does anyone have any Information about this new ME Org called 'ME/CFS International Alliance'? There does not appear to be any online background information about it, especially about its Policies or Governance.
Anyone can get together and call themselves something (like OMEGA - who are they ?), though Jen's comment below indicates something more amiss

I would just like to say that I was invited to join a call with organizations from around the world and I said, "Sure" sometime last year. I have never joined a call. I did not realize this was a formal organization. I do not believe I have the authority to join something like this without at least board approval, if not broader community approval. I am following up with Action for ME to clarify our involvement. Thanks.
That will be interesting if AfME (or whoever it is) are taking an expression of interest from individuals as an agreement to have their names and organisations attached to a new non-mutually devised group.

Also, this made me laugh from the AfME page:

"We need strong, evidenced-based debate and rigour to tackle this illness; not harmful, unfounded and derogatory attacks on people who quite frankly, deserve better. "

Shorter is an easy target. How about Chowdhury and UK friends step up and make a statement like this against the SMC, PACE, FITNET circus ?
 

AndyPR

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@AndyPR ... I have made a FB PM message reiterating my Post questions.

I hope that you asked them (Meaction and Solve), who exactly instigated the formation of the new org ... and if they think that getting into bed with Action for ME at this point (or at any point) is wise.
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Just a polite request for more info so far, as Jen indicates above all may not be as AfME make out.
 
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@AndyPR ... If "all may not be as AFME make out" ... then AFME should be made accountable.

Do not forget that AFME CEO, Sonia Chowdhury, was funded by the charity AFME to fly to the States and attend the IACFS Conference this year.

Who knows what networking she engaged in at the IACFS Conference?

Not all US orgs staff, or US researchers, are wise to what the charity Action for ME have done in the last decade to enable PACE, or that AFME have refused to take responsibility for enabling PACE, or to what extent AFME supports the psychosocial construction of ME in UK policy.

Indeed, not all UK patients are aware that Solve ME is simply the new name for the old [edit] distrusted US org the CAA (The CIFDS Association of America).
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Sounds like AFME empire building and doing a bit of desperate damage limitation - I'm guessing the next step will be to declare all the 'member organisations' support MEGA.

Just guessing...
Typical A4ME publicising stuff for best marketing effect and trying to worm their way into every opportunity for PR.
Shame Sonya didn't publicise her relationship with Crawley outside A4ME business as well. Potential conflicts of interest should be given in studies such as MEGA. Same goes for an AYME employee.
 
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The fact remains that AFME/Sonia Chowdhury has announced the existence of a new International ME Org (the ME/CFS International Alliance) - and the members of which may or may not be aware of having formally joined it.

Would the delegates/attendees of the IACFS Conference have been aware of AFME's tendency to self publicise and 'big up' its own relevance/importance to ME bioresearch??

Would the IACFS Conference delegates know of AFME CEO Sonia Chowdhury's position in the UK CMRC, and how distrusted the CMRC is now amongst UK patients?

AFME's tendency to Empire building appears to have recently increased.

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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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I was invited by AFME to join a call with organizations from around the world sometime just before or after MEAction's launch in 2015 and I said, "Sure" sometime last year. I have never joined a call. I did not realize this was a formal organization. I do not believe I have the authority to join a formal alliance like this on behalf of #MEAction without at least board approval, if not broader community approval. I am following up with Action for ME to clarify our involvement. Thanks.
Are you saying, Jen, that the "joint letter" re Shorter's invitation was compiled, sent and publicly released in the name of the "M.E./CFS International Alliance" but that your org (at least) had not had sight of a copy of that communication in order to review and approve its content and was unaware that it was being sent in the name of MEAction and the other CEOs/orgs that have been listed on AfME's site as "current members" of a hitherto unannounced "International Alliance" - the scope and remit for which has yet to be publicly set out?
 
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trishrhymes

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I just googled ME/CFS International Alliance. The only things that came up were the AFME announcement and letter about Shorter on their website, and this PR discussion. Maybe Sonya C has just invented it! Crafty picking on something we'll all agree on for her new organisation's first public appearance....

I notice her letter carefully doesn't mention who was at the meeting, nor is the letter signed. She simply lists 'current members' at the end.
 

Gamboa

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I could be completely wrong about this but when I was at the recent IAME/CFS conference in Florida there was a woman from Holland? or Norway? ( brain fog) who was talking about a new European alliance of various advocacy groups. It was composed of 8 to 10 groups from various countries and is intended to give all of us a stronger and more united voice.

She was quite feisty, in a very good way, and was talking to all of the American and Canadian people trying to entice us to form a similar united group- a single North American group.

I don't follow or understand all the political stuff that goes on so hopefully have not stirred up problems. I follow the science only since that is my area of expertise so tend to put my foot in it--probably just did that again.
 

Gamboa

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Wow! Just looked at this new ME/CFS International Alliance website and was surprised to see a Canadian in the executive group. David Mann of FM-CFS Canada.

I recently looked up FM-CFS Canada when I was searching to see what advocacy and help groups we had in Canada and found this group but it is largely defunct now from the looks of things. The last time anything was added in the "News" section or the "Research" section was a year ago, 2015-11-03.

Obviously not a very helpful site to any ME/CFS patients and it really should have something across the top saying it is no longer active. No wonder patients here in Canada have a hard time getting help. :(

Sorry, went off topic there.
 

AndyPR

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I could be completely wrong about this but when I was at the recent IAME/CFS conference in Florida there was a woman from Holland? or Norway? ( brain fog) who was talking about a new European alliance of various advocacy groups. It was composed of 8 to 10 groups from various countries and is intended to give all of us a stronger and more united voice.

She was quite feisty, in a very good way, and was talking to all of the American and Canadian people trying to entice us to form a similar united group- a single North American group.

I don't follow or understand all the political stuff that goes on so hopefully have not stirred up problems. I follow the science only since that is my area of expertise so tend to put my foot in it--probably just did that again.
I would guess this would be the European ME Alliance http://euro-me.org though I could be wrong.