M.E. highlighted at the 71st World Health Assembly

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.

 

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.