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

And Emerge are definitely part of it as well


I'm baffled. Was there a big announcement that we all missed that these orgs had come together to lobby on our behalf? If not, why not? It's not that I'm necessarily against the idea of them doing this, I'm just concerned/worried/puzzled that they feel no need to inform the wider patient population what they are up to.

 

We must all have been ill that day.

 

Following developments, last week, I note that the Forward-ME page for "Linked Organizations" has now been updated to remove the listing for Invest in ME:

Last week, the page had displayed the following:

• ME Association www.MEAssociation.org.uk
• ME Research UK www.meresearch.org.uk
• Action for ME www.actionforme.org.uk
• The Young ME Sufferers Trust www.tymestrust.org
• reMemberCFS www.remembercfs.org.uk
• Blue Ribbon for awareness of ME www.Brame.org
• Neurological Alliance www.neural.org.uk
• ME Trust www.metrust.org.uk
• 25% ME Group www.25megroup.org/
• Invest in ME www.investinme.org
• Health Equality for ME #MEAction

The link for Invest in ME has now been removed and the page lists the following:


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 www.MEAssociation.org.uk
• ME Research UK www.meresearch.org.uk
• Action for ME www.actionforme.org.uk
• The Young ME Sufferers Trust www.tymestrust.org
• reMemberCFS www.remembercfs.org.uk
• Blue Ribbon for awareness of ME www.Brame.org
• Neurological Alliance www.neural.org.uk
• ME Trust www.metrust.org.uk
• 25% ME Group www.25megroup.org/
• Health Equality for ME #MEAction

----------------

So, since the development, last week, it has been acknowledged that Invest in ME have not been involved in Forward-ME since 2014.

And four individuals have been added as "Associates":

Carol Monaghan (MP) has been made Vice Chairman of Forward-ME

plus Dr Nigel Speight, Dr William Weir, and Dr Nina Muirhead.


Note that all four had been CCd into the Countess of Mar's "personal email" to me on May 7, which had also been Ccd to various org reps (21 recipients in addition to myself).

This evidently explains why these four individuals had been Ccd into the letter I received last Monday, though this was not clarified to me at the time.


To return to Sly Saint's question, this raises a number of questions:

Was the decision that Forward-ME would become a member of the IMEA:

1 A unilateral decision taken by the Countess of Mar, as Chair of Forward-ME?
2 A decision taken by the Countess of Mar and her new Vice Chairman, Carol Monaghan MP?

3 Were Forward-ME's member org reps consulted about joining the IMEA and if so, on what basis:

a) as individuals;
b) in consultation with their directors/boards of trustees or management committees;
c) in consultation with their directors/boards of trustees or management committees and following consultation with their memberships (in those cases where a member organization is constituted as a membership organization).

And for me, it also raises the question:

What is the opinion of the Vice Chair and the three "Associates" of the tone, content and purpose of the letter sent to me on May 7, followed by a further letter on May 9?


Suzy Chapman

 

It is worth mentioning that although the language here is of "linked organisations" the Welcome page of the Forward MEwebsite talks of membership.

It also says that members are free to opt into activities. That is not much of a freedom unless they are informed what the activities are.

If there is no constitution, matters must be governed by the complexities of agency law. The chairman may have implied, apparent or ostensible authority to act in the name of all members without consultation. Is that what they want?

Edited for typos

 

Found a statement from WAMES:

International Alliance for ME writes letter to the WHO
WAMES has co-signed a letter from the International Alliance for ME to the Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus



The aim is to persuade the WHO and its Member States to consult with people affected by ME in a transparent and meaningful way, to lead a global public health response to this illness.

This would include supporting increased research and ensuring appropriate education for healthcare professionals.

The International Alliance for ME so far represents patients from the US, Australia, Spain, Pakistan, South Africa, Japan and the UK and will be launching an online presence soon.

Later in May the Alliance will hold a side event at the World Health Assembly (i.e. the decision-making body that determines the policies of the WHO), aimed at raising awareness and understanding of ME among international policy-makers."

http://wames.org.uk/cms-english/201...er-to-the-who-requesting-urgent-action-on-me/

can't find anything from the MEA.

 

MillionsMissing Canada have joined this shadowy organisation, or at least they are supporting the letter.

 

There's a Facebook group. I've joined it. It's public, so any patient can and should join too.

 

Got a link?

 

https://www.facebook.com/groups/IAforME/about/

 

You have to log into FB to see anything at all there (not necessary on a lot of FB pages). I'm not on FB so can't see anything.

 

I think that may mean that their particular event under the banner had started.. like our ME Action event etc

 

To be honest, there are a fair number of posts but there is nothing of actual substance other than their description, and even that is pretty vague,

 

@Emily Taylor , could you perhaps please provide us with some narrative about this group from a Solve point of view? Unfortunately Solve didn't respond to my Facebook message enquiry about this.

 

It looks a big bus -so who is driving it?

 

Any insight @Dx Revision Watch ?

 

Well, at the moment it looks like AfME are and everybody else involved are sat meekly in their seats, just nodding their heads and looking pleased with themselves that they are "involved" in international advocacy.

 

The "International Alliance for M.E." (IAME) is an Action for M.E. initiative.

It was conceived last year out of a number of informal teleconferences with international organizations.

https://www.actionforme.org.uk/uplo...ed-briefing-international-advocacy-040518.pdf

"Action for M.E.’s Head of International Advocacy for M.E. (see Appendix 1) will facilitate the IAME coordination and implement agreed actions."

"Appendix 1: Alexandra’s role and background

"Action for M.E. has commissioned this international advocacy work through the Union for International Cancer Control (UICC), a formal partner of World Health Organisation (WHO). To achieve our ambitious goals, Alexandra Heumber, based in Geneva, has, in effect, been seconded to lead this piece of work as Action for M.E.’s Head of International Advocacy (the public announcement can be read here), notably by coordinating the IAME for joint actions when appropriate..."​

This year's WHA assembly (WHA71) is taking place between 21-26 May.

There is a side event on Tuesday, 22 May:

http://g2h2.org/posts/event/wha71-sideevents/

18:30 hrs, Union for International Cancer Control
M.E. is a neglected NCD: not preventable, not treatable. What do we need to do?

Organizer: International Alliance for M.E.
Announcement received via e-mail
Contact/enquiries: E-mail



NCD = Non-communicable Disease


Declaration: Dx Revision Watch is not an organization. Dx Revision Watch owner, Suzy Chapman, has no affiliations to the IAME initiative.


Edited to insert: Note that although WHO plans to take the ICD-11 MMS to this year's World Health Assembly (WHA71), WHO will not be seeking endorsement of ICD-11. Presentation for WHA endorsement is currently scheduled for May 2019.

 

I don't have trust in them, I'm sorry.

Thanks for all the info here!

 

I hope that before any other patient groups join up with Action for ME on this, they will ask about what Action for ME is doing to ensure that the problems with the PACE trial are not just brushed under the carpet by the UK research establishment.

 

One can test the seriousness of this project.

Has there been agreement between the international members as to the likely costs budget needed, and the division of those costs between members? If not, is Afme picking up the bill in return for the use of the names of the others?

How often would it be expected that there would be face to face meetings with officials at Court? One does not gain the impression that they welcome representations.

It would not surprise if, if they were aware of them, officials might be pleased with recent developments with Forward ME.