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

Action for M.E. said:
As we say here, we are extremely resistant to any move attempting to reclassify M.E. as a "medically unexplained symptom."

I emailed the Countess of Mar last week about the IAPT roll-out and it is on the agenda for our Forward ME meeting tomorrow.

The aim of the IAPT-LTC programme is to ensure that those with long term (physical) conditions (eg. diabetes) have access to psychological therapy, alongside their physical treatment, for comorbid anxiety and depression. This is a positive step given that access to mental health services for this group has been very poor up to now.

However, the guidance being issued (examples here and here) makes it clear that M.E. and/or CFS should be considered as a purely psychological MUS and treated as such.

This needs to be challenged, and we will work with Forward ME to do this. M.E. is not MUS with no organic cause: it is recognised by WHO as neurological and there is mounting evidence of biological abnormalities in patients.

To quote the advocate who sent me these examples: "MUS should not, in any case, imply no organic cause, just insufficient knowledge. Absence of evidence is not evidence of absence. A sicker patient does not need more psychological therapy, they need treatment for their underlying condition." [My bold]

The work we are undertaking to clarify proposed changes around the ICD-10 continues - again, we are working with Forward ME on this.

While the classification of M.E. and/or CFS at WHO level is of course relevant to our international advocacy work, it is only part of it. You can read more about our international advocacy work here, which includes our Millions Missing event in Geneva on 12 May, and a side event at the World Health Assembly - to raise awareness of M.E. and its impact, with a short screening of Unrest - at the end of the month.
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So, AfME need to publicly condemn Esther Crawley and bring up all the issues with her on the public record and that will help the WHO and the people in Geneva get a grasp of the kind of issues we are up against.

Will you do that?
 
@Action for M.E.

i appreciate your answering questions on this forum. i wonder if you would be so kind as to answer an absolutely direct question, absolutely directly?

"do you /both/ [1] regard m.e. as an ordinary organic disease and [2] have an unbendable policy of acting according to that?" you either both 1 and 2 or you do not.

i do not mean to be harsh at all.

however, i feel that your recent response is written such that many readers would strongly /infer/ the above. [but it does not state it.]

we know from experience that there are people who imply things and, because they do not state them, give themselves weasel room. they give the wrong impression to their audience. this suits their purposes. as you know [or should know], we have had enough of that.

therefore, i want no weasel room from your answer whatsoever. an example of weasel room is referring to who classification and "mounting evidence". that allows you to still not both 1 and 2 while still influencing the audience to infer that you both 1 and 2.

my question still leaves too much weasel room, in that you might interpret "ordinary organic disease" differently from us. however, i do not have the health resources at this time to qualify it further. we'll have to deal with that after you provide your answer.

if this has been unambiguously answered elsewhere on the forum, with no weasel room, then please feel free to link to that. however, please make sure that it answers the exact question asked, with no weasel room.

please do not use a page on your website as an answer.

thank you.
 
Action for M.E. said:
As we say here, we are extremely resistant to any move attempting to reclassify M.E. as a "medically unexplained symptom."

I emailed the Countess of Mar last week about the IAPT roll-out and it is on the agenda for our Forward ME meeting tomorrow.

The aim of the IAPT-LTC programme is to ensure that those with long term (physical) conditions (eg. diabetes) have access to psychological therapy, alongside their physical treatment, for comorbid anxiety and depression. This is a positive step given that access to mental health services for this group has been very poor up to now.

However, the guidance being issued (examples here and here) makes it clear that M.E. and/or CFS should be considered as a purely psychological MUS and treated as such.

This needs to be challenged, and we will work with Forward ME to do this. M.E. is not MUS with no organic cause: it is recognised by WHO as neurological and there is mounting evidence of biological abnormalities in patients.

To quote the advocate who sent me these examples: "MUS should not, in any case, imply no organic cause, just insufficient knowledge. Absence of evidence is not evidence of absence. A sicker patient does not need more psychological therapy, they need treatment for their underlying condition." [My bold]

The work we are undertaking to clarify proposed changes around the ICD-10 continues - again, we are working with Forward ME on this.

While the classification of M.E. and/or CFS at WHO level is of course relevant to our international advocacy work, it is only part of it. You can read more about our international advocacy work here, which includes our Millions Missing event in Geneva on 12 May, and a side event at the World Health Assembly - to raise awareness of M.E. and its impact, with a short screening of Unrest - at the end of the month.
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Thanks for your response. It is appreciated.

Unfortunately, Forward ME were not really up to speed with the implications of changes - it is very complex, as highlighted by @Dx Revision Watch .

Hopefully the meeting will generate a strategy and not simply another letter.

Letters work well for recording things at a set point in time, for explanations and conveying responses- however challenge and change for something of this scale and agenda require a multi pronged , systemic campaign.
 
Action for M.E. said:
To quote the advocate who sent me these examples: "MUS should not, in any case, imply no organic cause, just insufficient knowledge. Absence of evidence is not evidence of absence. A sicker patient does not need more psychological therapy, they need treatment for their underlying condition.
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I'm sorry but you should not have to be told these things by an advocate; as 'the biggest ME charity in the UK' you should know/have known them long ago and acted accordingly. By 'going along' with the whole PACE CBT/GET stance you have only helped to reinforce the psychosocial agenda.
 
Samuel said:
@Action for M.E.

i appreciate your answering questions on this forum. i wonder if you would be so kind as to answer an absolutely direct question, absolutely directly?

"do you /both/ [1] regard m.e. as an ordinary organic disease and [2] have an unbendable policy of acting according to that?" you either both 1 and 2 or you do not
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I really would like an answer to that. Very good question.
 
Thanks for the update. I suspect that we have all learned something from this sorry tale.

Reverting to the subject of Afme advocacy in Geneva, the question that will naturally arise is to what extent is Afme strategy independent of Forward-ME? Do these developments mean that Afme will be using its funds to create a presence in Geneva, where any advocacy it undertakes may be based on partial and incomplete information.
 
Merged thread

This thread was split from:

https://www.s4me.info/threads/afme-...-millionsmissing-contribution-should-be.3489/

to provide IAME it's own thread.


IAME (International Alliance for M.E.)
IAME, based in Geneva, is a collaboration between M.E. organisations across the world. Through a coordinated, inclusive and worldwide advocacy movement along with the current mobilisation of the M.E community, the IAME aims to get a coordinated and appropriate public health response to M.E. from the World Health Organisation (WHO) and its Member States. IAME offers a formal consultation channel to WHO and its Member States.
https://www.facebook.com/groups/IAforME/about/

Got to that through this Facebook post from AfME
 
Last edited by a moderator:
January 15, 2018

Action for M.E. is delighted to announce the launch of our international advocacy project. Our aim is that, as a result, the World Health Organisation (WHO) and its member states – including the UK – take action to address the biomedical healthcare needs of people with M.E.

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.”

Sitting at the heart of our international advocacy work is the ethical principle that access to biomedical care must not be restricted for anyone who has a significant possibility of needing it.
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https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

Doesn't mention what other ME organisations are involved.
 
Japan ME Association seems to be one
On Saturday, May 12, 2018, Japan ME Association will participate in the global #MillionsMissing protest as part of the International Alliance for ME’s Visibility Event at Place Des Nations in Geneva, Switzerland, the location of the World Health Organization (WHO).
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https://mecfsjapan.com/2018/05/11/millionsmissing/

I can remember that last year AfME claimed that Solve ME were part of it, I contacted Solve and they didn't know anything about it.
 
It looks like the facebook page for IAME was set up on 23rd April this year. I can't find a website for them. So they launched an 'International' Organisation in January this year that has no members apart from AfME and no website.

I remember they tried to set up such an organisation 2 years ago and it vanished pretty quickly after listing some organisations as members who knew nothing about it. There's a discussion of it on PR.

This does look like another attempt at empire building by AfME.

They would do better to spend their money on getting their own house in order, for example stopping using psychologist Hazel O'Dowd as their adviser to lead on producing materials for doctors and patients.
 
The IAME members are listed on our international advocacy page, and you can see pictures, shoes and stories shared at the IAME #MillionsMissing protest in Geneva today at https://www.facebook.com/groups/IAforME and on Twitter @IAforME.

IAME doesn't have its own website yet, but as the collaboration develops this is something that it will discuss. As @Trish mentions, the IAME was set up two years ago but this is its first event. It will host a second event at the World Health Assembly in Geneva on 22 May - @Andy has shared the flier for this further up the thread.

Clare Ogden
Head of Communications and Engagement
Action for M.E.
 
The slow drip of information continues..

The International Alliance for M.E. (IAME), based in Geneva, is a collaboration between M.E. organisations across the world, including Action for M.E. and Forward ME, led by the Countess of Mar.

Following its #MillionsMissing protest at the Place de Nations in Geneva - you can see images from this on Facebook and Twitter - the IAME has written to the Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus, to ask for a meeting.
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https://www.actionforme.org.uk/news/iame-letter-to-the-who-for-me-awareness-day/
 
From the letter the members apparently 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
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
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I've sent a message to Solve to ask if they did agree after all to be involved.
 
Action for M.E. said:
IAME doesn't have its own website yet, but as the collaboration develops this is something that it will discuss. As @Trish mentions, the IAME was set up two years ago but this is its first event.
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I appreciate you replying, but I can't see any organisations listed on this page. https://www.actionforme.org.uk/news/international-m.e.-advocacy-our-latest-project/

Is there another page somewhere?

Andy said:
From the letter the members apparently are
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What letter, @Andy? I'm getting very confused here.
 
Thanks, @Cinders66, I agree it's a good letter.

It would be helpful for pwME to know more of what this organisation plans to do on our behalf.

It seems strange that there is no written documentation of aims, plans, etc. available to pwME to read. I'm still not clear whether it's an organisation, or a project by AfME to take a few actions at international level and get other organisations to sign letters.

Are there meetings, a committee with representatives from all the organisations, an agreed agenda etc? I do understand it's early days and hope it achieves some positive outcomes, and I don't mean to sound hostile, I'm just genuinely puzzled.
 
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