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

there still isn't much on their website......
no resources files whatsoever
https://iafme.org/resources

maybe slight disagreements re content? given AfMEs leaflets, am not surprised.

Alexandra Heumber still named as contact on the website
https://iafme.org/privacy-policy

Didn't Sonia Chowdrey say she was taking a bit more of a back seat at AfME to concentrate on this IAFME initiative (last years agm)?

in list who we are :
"Forward ME (a House of Lors-led collaboration of ten ME charities) | United Kingdom"

(typo in original)
https://iafme.org/who-we-are

Wonder if all will be revealed tomorrow at their agm.
 
Is this the same organisation as IAFME? I can't keep track. There are too many acronyms in this world for my poor brain :confused:

https://worldmealliance.org/about-us/
Our previous name was the International Alliance for ME. We decided to update this name, our logo and our branding to move our alliance forwards, and ensure we could build on our unique position and strengths. We still operate the same way, with member organisations from across the world.
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We are seeking a formal consultation channel with the WHO to represent the millions of people affected by ME and bring forth greater technical input into the design and delivery of health and other services to respond to their needs.
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The IAME were seeking to establish a consultation channel with the WHO, since Alex H was first installed in Geneva. My understanding is that formal letters from the IAME to WHO Director General, Dr Tedros "we hear you" Ghebreyesus, were ignored by WHO.

The IAME requested a meeting with Dr Robert Jakob, in Geneva, but were fobbed of with a meeting with Dr Tarun Dua (she of the November 2019 "CFS, ME should be deleted from Diseases of the nervous system chapter and relocated under Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system" proposal).

My advice was don't meet with her (and she had already made it clear that she would not be prepared to discuss the coding issues that existed at that point, anyway) and that they should hold out for a meeting with Dr Jakob and another senior WHO official. But they went ahead and met with Dua, anyway.
 
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Amw66 said:
Was it a fixed term appointment / is funding her salary dependent on multiple inputs ?
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My understanding is that she was on a two year contract for which AfME had secured funding. I think she quit before the two years was up and further years' funding was being sought. She already worked in Geneva with NGOs.
 
This is of no consequence and perhaps it is a sound representational image - but I hate that header photo*. Can't we for once be represented as being active despite the pain (or whatever) - and not perpetually passive ?

*apologies to the subject who is very striking and as a photo it is a great piece of work.
 
Sly Saint said:
there are several of them listed as 'founding member'; I took this to mean founding members of the original IAFME.
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Ah, OK. That's what comes of trying to do two things at once.
I've just spoken to NICE re my non responded to and now overdue FOI re the guideline sign-off dates. I will update on this in the long guideline thread and delete the post above.
 
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First World ME Day and theme launched by alliance members

"The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME). Through collective action, we will step closer to our goal of a world without ME.

World ME Day will build on the incredible efforts of advocates around events, such as ME Awareness Week and Chronic Immunological and Neurological Diseases (CIND) Awareness Day. By focusing on a single day and collaborating across many organisations, we aim to maximise our collective power.

The theme for the first year of World ME Day is #LearnFromME."

https://worldmealliance.org/2022/02/first-world-me-day-and-theme-launched-by-alliance-members/
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This post has been copied to this thread:
ME Awareness Day / Week / Month, May 2022
 
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European ME Coalition joins the World ME Alliance

"We are excited to announce that the European ME Coalition (EMEC) is joining our Alliance. This effective organisation has wielded the European Union’s petitions system to build awareness of ME in this important international setting.

Founded in 2018 by a group of patients and carers, they have engaged thousands as they work their way into the halls of power."

https://worldmealliance.org/2022/04/european-me-coalition-joins-the-world-me-alliance/
 
We “do not endorse the Lightning Process” say World ME Alliance members

The World ME Alliance and its members have worked closely over the past few months to reach a collective position on the Lightning Process.

The Lightning Process is a commercial training programme that is promoted by practitioners as a cure or treatment for ME without due evidence. Additionally, there are reports of people with ME experiencing a worsening of their symptoms and functioning after undertaking the programme.

Some member organisations are experiencing great difficulty with misinformation in their countries, and therefore asked the Alliance for support in reaching an evidence-based collective position.

https://worldmealliance.org/2022/08...htning-process-say-world-me-alliance-members/

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Andy said:
We “do not endorse the Lightning Process” say World ME Alliance members

The World ME Alliance and its members have worked closely over the past few months to reach a collective position on the Lightning Process.

The Lightning Process is a commercial training programme that is promoted by practitioners as a cure or treatment for ME without due evidence. Additionally, there are reports of people with ME experiencing a worsening of their symptoms and functioning after undertaking the programme.

Some member organisations are experiencing great difficulty with misinformation in their countries, and therefore asked the Alliance for support in reaching an evidence-based collective position.

https://worldmealliance.org/2022/08...htning-process-say-world-me-alliance-members/
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Hmmm... curious timing. Two days ago ads from local LP (and derivatives) sellers started swamping my FB feed. Coincidence?

Have used the 'report this ad' function, unfortunately it doesn't allow for any text input to explain the reason for the complaint. I don't expect FB will take any notice but at least the annoying ads in my feed seem to have stopped for now.
 
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