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

Was it a fixed term appointment / is funding her salary dependent on multiple inputs ?

 

Now Heumber Perry and artistic career taking off
https://artplace.co/artist-works.php?artistId=336411&artist=Gilbert BADAF

Perhaps a change in priorities
Perhaps a fixed term contract
Perhaps wages funding ended

 

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

https://worldmealliance.org/about-us/

 

@Ravn said 'Is this the same organisation as IAFME? I can't keep track... '

I so, so agree.

 

https://twitter.com/user/status/1445302436856569858

 

This bit of the website is confusing:


"The World ME Alliance calls upon WHO and its Member States to:

• Formally engage with the IAFME and its members at the national level in order to address ME patients’ barriers."

from https://worldmealliance.org/what-we-do/

@Andy @Gecko

Edit: website now changed

 

I may be involved in quite a few things but not this one, sorry.

 

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.

 

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.

 

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.

 

this one is quite apt tho:

What does MESS stand for?
MESS

Myalgic Encephalomyelitis Support Services

https://www.abbreviations.com/MESS

 

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/
__________

This post has been copied to this thread:
ME Awareness Day / Week / Month, May 2022

 

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/

 

Create your own custom poster

https://worldmealliance.org/worldmeday/custom-poster/

 

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/

 

Is "not endorsing" a sufficient sign of disapprobation?

It is the sort of thing one says whilst sitting securely on a fence.

 

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.