United Kingdom: ME Association news

Health for ME was the name taken by this MEA project - Project Manager Russell Fleming - platform Elaros showing the trade's MEA app and the commandeered Suffolk co-production, maybe the original model. I am still waiting for the MEA to explain and make stern provisos on the use of their branded app, according to the industry standard for registered medical device softwares.

Karren Winters-Cavalot wrote the article linked above, and as "Ren" directed the H4ME Team, after a year of news and science writing assisted by Dr Shepherd. The list of those articles - given under her author name - is not yet linked to her H4ME article(s).

Her Health and Social Care Annual Report 2025 was provided in this thread on page 24, with Binkie4's request that we review this outline of the MEA's aims, agenda and its ME/CFS/LC service evaluation?

"focused on improving the quality of life for those affected by ME/CFS. We will do this by providing support and information; funding research to find biomedical markers and treatments and educating, influencing, and informing a broad eco-system that includes media, politicians, educators, health and social care providers and the commercial sector. This has always been and continues to be our focus, and we are grateful for the support we receive in realising these goals.
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I was sure they must also "influence" NHS commissioners in pursuit of their stated aim to help existing services and BACME people renew otherwise decommissioned contracts and "fill the vaccuum". Their lookalike H4ME name is only noticable on the logo and signing off at the end of this 19 page report:

"We extend our sincere thanks to all individuals who participated in our pilot project..... You will find some of this information included in the report ... We look forward to engaging with many more of you as we move into our 2nd year, working together to improve ME/CFS/LC services

The Healthcare team | Healthcare 4 ME | Email: health@meassociation.org.uk
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Please do correct me if I got this wrong. I don't know the projection for what MEA investments in the Tyson Rehab Academy might yield. I look forward to engaging too. Traction is a wondrous thing when you can get it.
 
From MEAs Facebook page

Hi all, I'm an MA journalism student at City St George's. I'm investigating the impact that misunderstandings about ME/CFS are still having today. Dr Charles Shepherd told me he knows of people who were recently recommended Graded Exercise Therapy by doctors despite the changes in the 2021 NICE Guideline on ME/CFS.
I'd be really interested in speaking to anyone who has experienced this to potentially include them as case studies in my piece (you can be anonymous!). It would involve a casual interview/conversation with me next week. The article will go towards my Masters, but I'm also hoping to pitch it to other publications after for wider exposure on the issue.
Please email: townendevie@gmail.com
#MECFS #MyalgicEncephalomyeltis #GETgone #GET
 
Amw66 said:
From MEAs Facebook page

Hi all, I'm an MA journalism student at City St George's. I'm investigating the impact that misunderstandings about ME/CFS are still having today. Dr Charles Shepherd told me he knows of people who were recently recommended Graded Exercise Therapy by doctors despite the changes in the 2021 NICE Guideline on ME/CFS.
I'd be really interested in speaking to anyone who has experienced this to potentially include them as case studies in my piece (you can be anonymous!). It would involve a casual interview/conversation with me next week. The article will go towards my Masters, but I'm also hoping to pitch it to other publications after for wider exposure on the issue.
Please email: townendevie@gmail.com
#MECFS #MyalgicEncephalomyeltis #GETgone #GET
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Send them “the letter” with the BACMe guide
 
MrMagoo said:
Send them “the letter” with the BACMe guide
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an open letter to bacme re me/cfs guide to therapy 2025

I can't find this student journalist's thread here. Which forum might it be posted in?

Somewhere, there is a thread for recruiting research students, and researchers, to announce and consult on their own research investigations (but I can't find it) - ah, its here: https://www.s4me.info/forums/recruitment-into-current-me-cfs-research-studies.129/.

Is there a thread for investigative journalists to liaise likewise?

It is very good and professional when investigators ask to consult people here on the provisions, provisos and protocols for an effective, high standard when collecting and re-presenting info from people.

For example: in journalism, research, healthcare, social care, commissioning and procurement, and the economy,

As this often happens fruitifully, it is surprising that the MEA cannot participate nor follow suit

Relevant discussion of surveys arose in a particular student context, here, on convalescing rest.

Edit - this last link now works
 
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bicentennial said:
Relevant discussion of surveys arose in a particular student context, here, on convalescing rest.
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I don't think our MEA representation is interested in openly and inclusively consulting its community as powerfully claimed. It is not just that the org is still apearing to shun its own community, here. It is also claiming charitable (and then state) subsidy to shyly "inform":

- a Scottish government and every single NHS commssion on what its mysterious sample population said. There was enough problem with a shy org "informing" an Irish Government

The current publicity being established for adoption (as if NICE-compliant), is even carefully crafted to produce the popular initial impression that - all exercise progams are vetoed.

The MEA is not in my view, representing the local communities it claims to represent, on their communal prinicples and recognition of convalescing. It appears the MEA would prefer to represent the opportunity costed to be expedient, pragmatic, and practical.

With an oven-ready PROMS tool pre-planned to make up for all those years failing to present clinical data as available to untrammeled - highly subsidised - experimental therapists

However this can change any time the MEA realises there is a better option in the pipeline

(This was my 2nd MEA News post tonight, on this matter.

Edit:

- to replace a quote from the 1st post (linking to the S4ME discussion of BACME's "guide" discussion)

- replaced with a quote from the 1st post - linking to the S4ME discussion of representation by a student surveying the community view on convalescing rest
 
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