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

Correct me if I misunderstand, A4ME is then represented more than once on IAFME, via their own position and their membership of Forward ME, no?

If that is the case, A4ME should relinquish direct membership. Or, at a minimum, the MEA should join themselves.

Given profound concerns regarding the scientific and ethical probity/competence of A4ME, who at MEA should be flagged to review this thread?

A4ME PR statements post-PACE humiliation are actually practical examples of why they must be viewed with suspicion on an ongoing basis. I'll finish writing about that more practically once I can.
 
InfiniteRubix said:
Correct me if I misunderstand, A4ME is then represented more than once on IAFME, via their own position and their membership of Forward ME, no?

If that is the case, A4ME should relinquish direct membership. Or, at a minimum, the MEA should join themselves.

Given profound concerns regarding the scientific and ethical probity/competence of A4ME, who at MEA should be flagged to review this thread?

A4ME PR statements post-PACE humiliation are actually practical examples of why they must be viewed with suspicion on an ongoing basis. I'll finish writing about that more practically once I can.
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I wanted to point a condescendingly obvious point. I have no illusions about the practicalities of running charities as going concerns that function organisationally. But, I highlight this because there are those who would dismiss us on that basis, that we do not understand what is involved.

If I were A4ME, I would be hoping to shift perceptions in MEA on that basis. Assuming worst case assumptions about them, which their conduct does not seek to disprove, they will now be moving to some form of Plan B. Yes, that theory assume there are specific unwritten motives...

I will evnetuallky get to putting up that mai thatl I never get to finish to you all for opinions :(
 
Sly Saint said:
Not able to watch as I get 'player error'.

It's only had 88 views and no comments.
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Starts for me (I still haven't watched it). I've edited my post above to give the URL, which Alvin has given above, in case watching it on the Vimeo site helps in the future.
 
Is it looking good organisation?

I read the blog which they seem to have instead of a website and it lost me when they said they would be advocating to WHO "over the next few years " or something similar. They also had a definition of advocacy that sounded like how AFME work here, just working with people I would like to see challenged. If you really believe in increased biomedical research funds, why not organise lobbying of those in charge of the purse strings in your own country.? The people you have had meetings with every three months for years who despite this think it's acceptable to spend a further two years dithering on MEGA funding whilst doing nothing to set up quick and effective general research funding call like other countries.

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

"
In this context, advocacy means engaging with policy-makers to show them the challenges facing people with M.E., listening to their feedback about how we can work together to change this, and asking them to take a lead on doing so.

Our aim is that, over the next few years, the World Health Organisation (WHO) and its Member States consult with people affected by M.E., in a transparent and meaningful way, to lead a global public health response to this illness, through the adoption of a formal resolution at the World Health Assembly (the WHO’s supreme decision-making body). We want to see this include accelerated biomedical research, and appropriate medical education for professionals working with M.E. patients.

Sonya Chowdhury, Chief Executive, Action for M.E. says:

“International advocacy has brought about much-needed change in other illness fields, such as cancer and diabetes. The urgent need for appropriate biomedical care and support for people with M.E. cannot be understated. That we have the opportunity to drive this forward, targeting decision-makers at the highest level, is hugely exciting. It’s a big step for the charity, and our Board of Trustees has carefully considered this considerable investment, which will be regularly reviewed to ensure it delivers benefit for people with M.E.
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Action for ME and Sonya Chowdury, former AFME head, would seem to be principals, judging from the correspondence. Perhaps someone in UK can do a bit of due diligence. What is BACME? One reason to be in Switzerland is the UN agencies like WHO. A better one is to use funds on deposit in a Swiss Bank without the fuss and muss of traversing national borders. There are prominent BPS researchers who have earned money from a major Swiss insurance company. The elder would have earned megabucks. I mean mega SFrancs. The younger is only just getting started, but should be nicely ahead. This would be illegal for US citizens but not necessarily for citizens of the UK and Continental European nations. I am not informed about EU or UK tax law, except that the US taxes all its citizens no matter where they reside or earn, while the EU and UK are not quite so severe on expat income.
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Dolphin said:
Maybe a bit off-topic for the thread but I would have liked a diagnosis of CFS over nothing during the 5.5 years before I was diagnosed. Having lots of vague and sometimes shifting symptoms meant I got little support.
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Years ago trial proved med personnel took ME seriously but CFS much less so. That was a real published peer-reviewed trial.
 
deboruth said:
Action for ME and Sonya Chowdury, former AFME head,
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Former head? She's still listed as the Chief Executive on their website.

deboruth said:
What is BACME?
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The British Association of professionals who treat people with ME. Their treatment advice is very CBT/GET based. Not good.

As far as I know IAFME was set up by and is funded by AfME, who invited other organisations to join.
 
Sean said:
Without wanting to get anybody's hopes up, it does seem there is a broad change starting to come through in the UK.

Have certain 'players' in this decades long tragi-farce been read the riot act in private about raising their scientific and ethical standards?
NOT LIKELY Those "players" are the establishment unless May and cabinet or Corbyn and back bench decide to throw political capital at something just because it is the right thing to do. And the media jump in wholesale against the SMC side. Well, the Magna Carta did get signed.
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Trish said:
Former head? She's still listed as the Chief Executive on their website.


The British Association of professionals who treat people with ME. Their treatment advice is very CBT/GET based. Not good.

As far as I know IAFME was set up by and is funded by AfME, who invited other organisations to join.
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Whoops. I meant to make it former and possibly still head. Good catch Trish.
 
Hutan said:
It's interesting, but membership of an organisation doesn't mean that you agree with everything the organisation signs up to.

Dr Ros Vallings, medical advisor to ANZMES, believes that people with ME are excitable and Type A personalities, and yet ANZMES signed this IAFME statement that says, among other things, that there is no evidence that personality predisposes someone to the illness or perpetuates it.
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Scientists, journalists and basically all professionals outside the clergy should not be allowed to "believe" anything in relation to their professions. Hypothesize, research, trial (not by unblinded uncontrolled self-report) and subject to review. Amen.
 
Merged thread

from IAFME Facebook page

IAFME - International Alliance for ME
19 hrs ·
Dear followers, as administrator of the FB Page of IAFME, I wanted to personally say “Au revoir” to you, as I do not any longer work for IAFME. Also, this FB page will no longer be active. If you wish to follow IAFME FB, register to the FB Group of IAFME.

It has been an amazing experience for me to work so closely with ME patients and to raise awareness at international level about a such misunderstood and neglected disease .

I am optimist, I am convinced that one day the magnitude of the disease will be better understood and tackle and patients will receive appropriate care and treatment, thanks to all the people that in spite of their conditions raise their voices, thanks to some brillant advocates, and thanks to countries who handle as best as they can the challenges of this disease and lead the path for changes.

I will keep involved in public health/patient advocacy, so we will perhaps meet again in different settings.

Wishing you all the best and Bravo for all the work you are all doing on behalf of your community.

All the very best,

Alexandra Heumber
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anyone have any more info?
 
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