United Kingdom: Action for ME (AfME) news

[hotblack]

Harvest your DNA & biological data to later profit health insurance firms who’ll be denying you or your relatives current & future coverage.

Quite possibly that’ll be the least of it in terms of eugenics.

There is no evidence of this. We need the NHS to work with academia and industry to develop treatments for our condition and that of others.

Maybe if they received several emails from interested UK participants it might prompt them to think about it.

Agree, emailing them is a great idea.

 

[Kitty]

We need the NHS to work with academia and industry to develop treatments for our condition and that of others.

We also need to make them aware of the severity of disability in ME/CFS and the numbers affected, a picture which is almost certainly not captured via GP records. Studies like this have detailed questionnaires where participants are likely to be able to report it in their own terms.

There's also the fact that eventually the study hopes to offer individual feedback to people whose genetic screening reveals things they might need to know or act on, if they want to know. Among other things that should reveal what genetic conditions causing treatable disease or preventable deaths are least likely to be picked up until very late in the day, which is really important for future preventive screening programmes.

Studies like this are always a two-edged sword and I'd look into it in more detail before deciding to take part, but at first sight it looks if there are good arguments for doing so.

 

[OrganicChilli]

https://www.thescottishsun.co.uk/tv/8288579/celebrity-catchphrase-in-tears-mark-bonnar-win/

Mark Bonnar still supports AfME (might contain spoilers): https://www.bbc.co.uk/mediacentre/articles/2025/the-celebrity-traitors

I wonder if he has a personal connection?

 

[Lou B Lou]

Action for ME's most recent Parliamentary Champion (Green MP Sian Berry) asked the Secretary of State for Health (on the 20th October):

''To ask the Secretary of State for Health and Social Care, if he will hold discussions with the British Association of Clinicians in ME/CFS (BACME) on the geographical availability of regional specialist services for ME/CFS; and if he will undertake a mapping exercise to list the areas that (a) are and (b) are not covered.'

Post in thread 'UK House of Lords/ House of Commons - relevant people and questions'

Apr 9, 2025

Siân Berry Green, Brighton Pavilion
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 28 March 2025 to Question 40020 on Chronic Fatigue Syndrome: Health Services, whether he has had discussions with the British Association of Clinicians in ME/CFS on the myalgic encephalomyelitis/chronic fatigue syndrome delivery plan; and whether that plan will establish more NHS specialist ME/CFS services.

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• Tao Fogger

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We don't know who briefed Sian Berry on that Parliamentary Question. But AFME must clarify what their official charity position is re BACME and it's involvement in the NHS clinics and what services they promote.

Siân Berry MP joins our Parliamentary Champions network

Siân Berry MP joins Action for ME as a Parliamentary Champion, highlighting the need for policies that reflect the realities of ME and support those affected.

www.actionforme.org.uk

More discussion of this on the UK House of Lords/House of Commons: Relevant people and questions thread

 

[Hutan]

AfME Facebook:

Overlapping Illness Alliance parliamentary drop-in update

Over 50 MPs, Peers, and their colleagues attended the Overlapping Illness Alliance's drop-in event in Parliament yesterday!

AfME is part of the Overlapping Illness Alliance - more on that thread.

 

[Kitty]

AfME is part of the Overlapping Illness Alliance

I'm not sure that's the best idea they've ever had. All it's likely to do is dilute messages, and align AfME with people whose output might undermine their credibility.