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New Org!: ME/CFS International Alliance

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My original questions (from the start of this thread) have not been answered.

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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AndyPR

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Guiding the lifeboats to safer waters.
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My original questions (from the start of this thread) have not been answered.

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?

.
You need to ask AfME to get these answers.
 
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"You need to ask AfME to get these answers."

Joke of the month! :)
What do you think would have happened if I had just emailed AFME with those questions, but not made them public? The first answer from AFME to any incisive question is "Why do you want to know?"
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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My original questions (from the start of this thread) have not been answered.

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?

For ease of access:

The AGM Agenda item "Our global movement":

Video: http://www.ustream.tv/recorded/92813513

Section: 01:09:17 in from start

Sonya Chawdhury:


"...We don't have a global movement but we are making a bit of a dent in it. What could be achieved if we work at the global level? We have a duty and obligation to work with people in other countries..."

[She then speaks about the "powerhouse" in Geneva - the UN, WHO, WHA and raising the profile of ME within these organisations in order to influence policy within UK.]

01:13:45

"But we can't do that as a teeny, tiny little organisation sitting here in the UK, we have to work with others.

"So about 18 months ago, we set up an international alliance and we are working with people in the States, in Australia; we've been in contact with people in Japan - (inaudible) set up an organisation; we've been in contact with people in Canada and various places to say - informally - let's just chat, let's just talk about the issues we deal with; we may have completely opposing views, but we can agree that something needs to change; we don't know how; we don't know what this might look like - but we could talk together and find a way to do that.

"And whilst we do that, why don't we just provide each other with a little bit of support - as it is actually quite a difficult area to work in.

"So we set up our Alliance. At the moment, we're just exploring what that means."

Then she introduces a video from the SolveCFSME Initiative, whose CEO she had met a couple of months ago at the CMRC conference, to talk about why collaboration is important.

Then she wraps up this section by talking again about the plan to use AfME funding to place a staffer within a Geneva based NGO (within a cancer NGO) for one year, but with a view to extending the duration of this projected placement, to have someone based within Geneva to work towards achieving a WHA Resolution.

If quoting, please include this Disclaimer: This is an unofficial transcript. They may be errors and omissions. Please rely on this section of the video (Video: http://www.ustream.tv/recorded/92813513 Section: 01:09:17 in from start).
 
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Snowdrop

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Quoting S Chowdhury:

we may have completely opposing views, but we can agree that something needs to change; we don't know how; we don't know what this might look like - but we could talk together and find a way to do that.
In other words: "The BPS model of ME is starting to be seen for what it is--a treatment protocol that serves a convenient agenda for our political masters at NHS. While you may not agree with the BPS viewpoint we'd like your help in including us in the tent with you so that we have some credibility going into the future. An international alliance would help us to achieve that."

There is at least agreement that something needs to change. Anyone who does not have political motives toward ME knows that change needs to be to nuking BPS into vapour and getting on with bio research.

ETA: Also, just a note for everyone like me who has trouble following things: The quoted video is from a week ago that SC made the statement (I believe) so, Nov 20thish.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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ETA: Also, just a note for everyone like me who has trouble following things: The quoted video is from a week ago that SC made the statement (I believe) so, Nov 20thish.
The "joint letter" in the name of the "International Alliance" was posted on November 9. As AndyPR has reported, the announcement containing a copy of the letter has since been edited to remove the list of "current members" at the end - however, the intro text remains unedited, with refs to:

"Bringing together M.E. advocates and charity representatives from six countries, the M.E./CFS International Alliance has written jointly"

and

"International Alliance’s letter"

and

"on behalf of the M.E./CFS International Alliance"

The video is one of several from the livestream of Action for ME's Annual Meeting and AGM that was held on November 18 - ten days after the "joint letter" had been posted.
 
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A.B.

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I don't want a closet BPS apologist like Sonya Chowdhury leading a global ME/CFS organization.

Some people need to wake up and face the facts. The BPS model is dead. Stop trying to keep it alive. BPS based interventions have consistently failed to yield any meaningful results, not only do they not cure patients, they don't even produce objective improvement and are therefore useless for "pragmatic management" or whatever you would like to call it. Discredited in theory and in practice, the BPS model is dead.
 
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Anne

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Its really important that Carol Head and Jen Brea are made aware of the history as I'd be stunned if either of them would support Sonya Chowdry if they were aware of the big picture. Sonya Chowdry using the "International Alliance" to voice concern about Shorter, was most likely a way in, to start gaining credibility....
I agree, it's really important that SMCI (Solve), Jen Brea/MEAction and the other listed organizations are made aware of the very problematic stance of Action for ME, with its historical and current support of biopsychosocial researchers, its refusal to conclude that PACE as well as the other CBT/GET trials have massive methodological problems and that there is no evidence base at all for CBT/GET for ME/CFS defined by strict criteria such as the Canadian Consensus Criteria (CCC). They are supporting research by Esther Crawley, who continually mixes up ME/CFS with general chronic fatigue, who does research on GET and CBT for kids as well as on the very controversial mind-control method Lighning Process, and who just recently made a number of incorrect statements in media. As I understand it Action for ME also hasn't endorsed strict criteria for ME/CFS, such as CCC.

I probably missed a few things, help me out if you can.

@JenB , I'm sure you already know all this. Could you assure us that MEAction will not be collaborating with AfME?

I will be writing to Zaher Nahle, with whom I've had previous email contact - I think it's good if SMCI hears this from several supporters.

What about the Canadian organization, FM-CFS Canada? Can someone contact them and make sure they are aware of the above and ask for a comment from them? @Kati @Old Bones @ScottTriGuy (not sure if I'm tagging the right people here)

And Emerge Australia? @taniaaust1 @Sasha (not sure if I'm tagging the right people here either...)

And the Spanish orgs? Anyone?

I'm also concerned that Open Medicine Foundation and other US orgs are not aware of the problems with AfME and also with MEGA. Could anyone write to them about MEGA and AfME? @Ben Howell , have you read this thread and the MEGA threads?

If these orgs want international collaboration, then as has been mentioned the EMEA would be a natural place to start. (http://www.euro-me.org/about.htm) EMEA and its members are all unambiguous in their rejection of the BPS model and their endorsement of strict criteria (CCC or ICC).
 
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taniaaust1

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The BPS model is dead. Stop trying to keep it alive. BPS based interventions have consistently failed to yield any meaningful results, not only do they not cure patients, they don't even produce objective improvement and are therefore useless for "pragmatic management" or whatever you would like to call it. Discredited in theory and in practice, the BPS model is dead.
agree.

I want to see an International ME association/alliance. I don't like the "CFS" in it. While we keep accepting the CFS term it means there will be involvement of people who don't meet even the Canadian consensus guidelines and meet just "chronic fatigue" illness.

I think to rapidly move forward we need to break completely from the CFS including that name. Seeing we are in the age of computers and internet, those who have been wrongly diagnosed with CFS instead of ME, most will soon learn they have ME.
 

taniaaust1

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I don't think this has anything to do with EMERG (European ME Research Group). There seems to be a reference to Emerge Australia, which is a support group I think.
I have no idea if this has to do with EMERGE or not but EMERGE in Australia is working on the ME/CFS stuff at a politician level to and working with members of parliament. EMERGE is mentioned by a MP in a parliament session.. where he asks why are they left being the ones trying to help ME/CFS and why aren't they getting funding. So EMERGE may be involved in this new group.
 

taniaaust1

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@AndyPR apologies as the quote function seems to be eluding me.

You said, “First, Emily explicitly provided her email in order that folks who want to can contact her to ask questions, I would suggest you send her your query. Personally, I think you are reading more into the reply than there actually is”

I agree, it is very likely I am reading too much into the statement (albeit contradictory). Clearly the SMCI as they say have been contacted by AfME but as yet, nothing has been formalised. While I guess they agree in principle to the idea reading between the lines they seem rather caught off guard (to me). But this is yet more imaginings on my part and yes, I could well email Emily but you have already done that.

Your reading of the second sentence was that ‘we’ pertained to the entire ME community, I say in context it reads to me as the ‘alliance’. Could be either, I won’t argue the toss. My point being is that it’s all so vague and we deserve more robust statements in the first instance. Don’t get me wrong, I am aware this may have taken SMCI by surprise and as I’ve said, I support their recent activities but still…is it too much to expect clear cut statements. Especially where AfME are involved.

I lament the fact that the ME community is so often subjected to vague non committal statements. I think we deserve more from our charities. Please note again, this is no comment of the current activities of SMCI which I am very much enthusiastic and in support of, just saying.
I thought her statement was good, she said exactly where they were at at this point of time ..
 

NexusOwl

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I have no direct contact with these associations but I've received some complaints about one of them.

They have been asking for kids with ME without saying what they want them for recently.
 

NexusOwl

Spanish advocate
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@Gamboa

However, the good news is that Invest in ME Research (IiMER) has been working with Mella and Fluge from the start (and including other researchers working on rituximab in Germany, Spain, Sweden, for example). The UK trial is planned to take place in Norwich (the base for the Invest in ME Research Centre of Excellence for ME). Dr. Fluge and colleagues will visit Norwich in January 2017. The IiMER researchers have been to Bergen previously and PhD student working on the related B-cell research has been there this week. :)
@Jo Best Can you give me some more info about the research groups working with rituximab in Spain? I didn't know anything like this was happening around here.
 

Jo Best

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I will see what I can find @NexusOwl but @Jonathan Edwards will know more than me (in fact I think it was from one of his comments on PR that I originally quoted the involvement of those countries). :) The cooperative working has been facilitated over the years by the Invest in ME Conference events (including the Biomedical Research into ME Colloquium) and since 2015, the new group mentioned above, the European ME Research Group (EMERG).
Here's an informal blog about that while I try to find better info on it.. http://ldifme.org/2015/10/12/emerg-new-era-in-me-research/
 

slysaint

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twitter link:
Intl ME/CFS Alliance
@IMCFA

https://twitter.com/IMCFA


EDIT: the IMCFA is following these accounts plus 2 spanish orgs:

  1. SolveMECFSInitiative @PlzSolveCFS
    Leveraging patient-centered research to cure #MECFS


  2. Emerge Australia @EmergeAus

    Emerge Australia (formerly ME/CFS Victoria) for information, support, advocacy re Mylagic Encephalomyelitis/Chronic Fatigue Syndrome


  3. Action for M.E. @actionforme

    Action for M.E. is the UK's leading charity working to improve the lives of people with M.E.
The two(?) spanish organisations seem to be Catalonian(?). My spanish is very rusty........but Catalan :confused:
I don't like the look of either; as @NexusOwl has already said.
 
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