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

Interesting that it's presumed non-communicable in such a nonchalant way, considering family prevalence and outbreak history.

Correcting the misinfo on ME feels like having to correct the entire OED sometimes

ETA:Interesting to note that bit has been removed at the link now

 

The Open Letter to the new WHO Director-General (CC Dr Svetlana Akselrod, Assistant Director General for Non-Communicable Diseases and Mental Health) had similarly begun:

https://www.surveymonkey.co.uk/r/IAMEletterWHO

"Dear Dr Tedros

Urgent action to address M.E. globally: a neglected NCD

Tomorrow, on 12th May, people across the globe will come together in public spaces, at government buildings, online and in their homes to ask: “Can you see M.E. now?” You can see their films, photographs and stories, shared for this global M.E. Awareness Day event, at www.facebook.com/MEActNet..."


Did none of the IAME/IAFME orgs who signed up to the letter or the orgs that supported the letter query the use of the term "NCD"?

https://www.actionforme.org.uk/uploads/pdfs/iame-letter-dr-tedros-12-may.pdf

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

With support from

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

 

Interesting as well how they are claiming support from #MEAction UK, yet @JenB et al are only now funding raising to find someone to be a full time #MEAction UK person. Can Jen point us in the direction of whichever person is representing #MEAction in the UK at present and therefore, presumably, gave AfME permission to put their name down for this?

 

Forward-ME has recently become a member of the IAME/IAFME.

The organisation members of Forward-ME are

http://www.forward-me.org.uk/LinkedOrganisations.htm

Linked Organisations and Associates

• Countess of Mar (Chairman)
  
  
• Carol Monaghan (MP) Vice Chairman
  
  
• Dr Nigel Speight
  
  
• Dr William Weir
  
  
• Dr Nina Muirhead

These organisations all participate in the meetings convened by Forward-ME and their individual websites can be viewed using the links below.

• ME Association
• ME Research UK
• Action for ME
• The Young ME Sufferers Trust
• reMemberCFS
• Blue Ribbon for awareness of ME
• Neurological Alliance
• ME Trust
• 25% ME Group
• Health Equality for ME #MEAction

Apart from one org (AfME) none of the other orgs that are members of Forward-ME are members of the IAME/IAFME.

So how does that work, in practice, I wonder?

 

Another question to add to Andy's:

How is policy formed within #MEAction?

On a global basis or on a country by country basis, and by whom?

 

I think this is quite an important question that needs clarifying, especially as #MEAction is now a member of Forward-ME and has a rep attending Forward-ME meetings.

If a UK #MEAction rep signs off on a Forward-ME initiative or position, are they signing off in an individual capacity or on behalf of #MEAction UK?

If the latter, is that after consultation with the committee for #MEAction UK or in consultation with the global #MEAction Team?
And is there any prior consultation with the supporters of #MEAction UK?

 

Don't agree it implies they are members.

Their commentary states:

"The letter has the support of organisations (such as Forward-ME) and charities (including ME Research UK)".

Doesn't say they are a member of IAFME.

MERUK are listed on the letter under "Supporters".

https://www.actionforme.org.uk/uploads/pdfs/iame-letter-dr-tedros-12-may.pdf

The letter (which was sent to a number of orgs to ask for their support via a link for the SurveyMonkey site where orgs could read and sign up in support of the letter) ends:

"Yours sincerely

The International Alliance for M.E.

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

With support from

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

 

https://www.actionforme.org.uk/make-a-difference/take-action-now/international-advocacy-for-me/

(...)

Current members of the IAFME are:

• 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

which does not include

Solve ME/CFS Initiative, United States

though they are listed as members on the letter to the WHO D-G.

 

Unexpectedly, I had an encounter with someone from AfME. I won't say more as I don't want to identify this person.

I learned that a goal of the International Alliance for ME is to have the WHO recognize ME as a neglected disease (unsure of wording).

Apparently, the WHO picks 7 neglected diseases every year to focus on. If ME were chosen by WHO as one of the 7 diseases, then they would call on all participating countries to do things like invest in more ME research, count the number with ME, provide better ME diagnosis and clinical care, etc.

Ultimately, this WHO effort would also result in international research collaborations, which AfME thinks is vital. AfME doesn't think ME can be solved by a single country.

That's what I remember from the conversation. Well, that, and never ask a question about PACE or SMILE unless you want to make someone from AfME very angry and stop talking to you.

 

Strange that none of this was mentioned, or at least minuted, in the briefing of Forward-ME. Why the apparent secrecy?

 

In general, this seems like a good idea. Getting ME listed as a 'neglected disease' would be more powerful than all the charity-funded biomedical research we can muster. The reason being that governments have far more resources to contribute than charities. Charities shouldn't be required to pick up the slack left by governmental neglect, and they can't make the same impact governments can.

The biggest thing for the HIV movement wasn't the research charities conducted. It was the advocacy that won hearts and minds, making HIV research and treatment a political priority. Huge levels of funding followed and now there's a one-a-day tablet that prevents HIV like the pill prevents pregnancy. That's a huge game-changer.

Things like the Parliamentary debates in Westminster Hall are vital to getting a solution. If CM's three-hour debate evolves into time in the House of Commons, that could be huge. Working on the WHO would complement that well.

 

It is instructive to analyse the timing behind this encounter. Let us, for the sake of argument, assume that @Webdog had this meeting with the Afme member on 7 June. It may have been earlier. The plans are then sufficiently advanced for the member of Afme, we do not know of what status, to reveal and discuss them with a seemingly random member of the interested public. These plans must have been in preparation for some months. It is hard to imagine that matters develop very quickly.

The meeting of Forward-ME at which Afme's international representative briefed Forward ME, with Afme also represented at the meeting, was on 1 May. It is inconceivable that within the space of 6 weeks matters could have advanced from a state where they cannot be shared with supposed allies and co-members, with whom they are supposed to co-operate, to one where they can be discussed with the public at large.

The next meeting of Forward ME is 10 July. After that one suspects it will be October. This does not suggest that developments will be under the oversight of members, if such they be.

One wonders whether all, or indeed any, members of Forward Me have now been briefed on this.

People are playing games, and it is not to the advantage of anyone but themselves. One might sometimes think that the most important matter is the game.

It is a shame that some people seem unable to see the credibility problem they have and seek to address it.

 

You're assuming Forward-ME members don't communicate outside official meetings. It's very possible that most things were agreed in the time between those official meetings (via email, etc).

 

No. I'm not assuming that at all. I presume that they do. What interests me is that they would not wish to have the matter discussed in public meeting and minuted, so that everyone knows what is happening. What sort of representation is it if the charities, accountable, supposedly to their membership, seem to conceal significant information from public view, for no good reason?

 

A lot of my concerns about this stems from Action for ME still not seeming to realise that more attention on ME can be a bad thing if it's the wrong sort of attention. Until we get PACE universally recognised as debunked, might having ME classed as a neglected disease risk making things worse? AfME helped secure funding for the PACE trial and have still failed to acknowledge how badly wrong they got that, and that makes it impossible to trust their judgement on anything else. They often give the impression of blundering around being 'positive', not taking the time to understand the details, and then leaving other people to clear up their mess.

 

I couldn't agree more. I can see this could be a positive initiative, but given AfME's past form this could easily go very badly wrong on a rather large scale.

The fact they have never really addressed their role in PACE, their involvement with Crawley, close ties with Colin Barton leaves me very wary.

I do not trust AfME. I'm not saying that they could never earn my trust, but they 'd have to work for it. In the meantime I'm very concerned about this initiative because of their involvement and all the secrecy about IAME.

 

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.

 

Like you I wouldn't hold my breath @Andy ! An apology, or even just an acknowledgement, would be very welcome.

For me, the time for that to have most effect is long past - if they had done that and then signed that open letter for the retraction I would have felt that maybe they were mending their ways.

 

Personally I think we are all being wholly unreasonable with all these expectations of good governance. Even reasonable governance would be an improvement.

 

I agree - they're in a uniquely strong position to have a huge impact.

Taking that step would require taking the time to understand the now well documented problems with PACE, and would also need integrity and courage.

@Action for M.E.