United Kingdom: Action for ME (AfME) news

Ash said:
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.
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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.
Kitty said:
Maybe if they received several emails from interested UK participants it might prompt them to think about it.
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Agree, emailing them is a great idea.
 
hotblack said:
We need the NHS to work with academia and industry to develop treatments for our condition and that of others.
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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.
 
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.'

Tao Fogger

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

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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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.


www.actionforme.org.uk

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 www.actionforme.org.uk


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

The recording from the LOCOME Research Project webinar is now available!

A collaboration between PrecisionLife, Action for ME and the University of Edinburgh, the LOCOME Project aimed to improve understanding of the biological mechanisms that underpin ME/CFS and long Covid.

Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME.

The webinar, which took place on December 5, shared the project findings and discussed the next steps.


You can learn more about these findings, alongside watch presentations and discussions from PrecisionLife, Action for ME and PPI representatives, by watching the recording on our YouTube channel



#MECFS #MyalgicE #MyalgicEncephalomyelitis #pwME
 
From Facebook:

New self-advocacy resource now available: Impact Statement Template.

This new resource, developed by our Adults Advocacy Service in collaboration with their steering group, aims to support people with ME to communicate how ME impacts them and what adjustments would best support them.

The Impact Statement Template includes instructions on how to complete it, as well as examples that you can edit.

Download this new resource on our website

https://www.actionforme.org.uk/resource/impact-statement-template/

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
 
Dolphin said:
From Facebook:

New self-advocacy resource now available: Impact Statement Template.

This new resource, developed by our Adults Advocacy Service in collaboration with their steering group, aims to support people with ME to communicate how ME impacts them and what adjustments would best support them.

The Impact Statement Template includes instructions on how to complete it, as well as examples that you can edit.

Download this new resource on our website

https://www.actionforme.org.uk/resource/impact-statement-template/

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
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This could be quite helpful, though I no longer use Word and wish we could have a Google Docs version of stuff like this.

EDIT: I opened it in Google Docs and it seems the formatting is preserved.
 
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From Facebook:

We're pleased to welcome Gregory Stafford MP as our newest Parliamentary Champion and member of the APPG on ME!

Following our meeting, and speaking on the announcement, Greg said:

"I am pleased to become a Parliamentary Champion for Action for ME and to support efforts to strengthen the UK’s response to this complex and often misunderstood illness.

The UK has a strong reputation for medical research and innovation. However, at a time when biomedical and genetic research is opening up new avenues of understanding, it is important that the UK actively contributes and maintains ambition in this field. Building research capacity and encouraging collaboration across institutions will be essential to ensure the UK keeps pace with developments internationally.

The Delivery Plan published last year represents a step forward, but its impact will depend on effective implementation. I look forward to working with Action for ME and colleagues across Parliament to help ensure that its commitments are delivered fully and in a timely manner."

We'd like to thank Greg for his ongoing commitment to the ME community and for already working with us to table some written questions, highlighting the urgent need for improved care and support for those with severe and very severe ME

Meet our other Champions

www.actionforme.org.uk

Parliamentary Champions

Find out more on how our network of Parliamentary Champions help us raise vital awareness of ME within Parliament.
www.actionforme.org.uk www.actionforme.org.uk

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
 
Dolphin said:
The Delivery Plan published last year represents a step forward, but its impact will depend on effective implementation. I look forward to working with Action for ME and colleagues across Parliament to help ensure that its commitments are delivered fully and in a timely manner.
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This makes me wonder if Mr Stafford actually has much idea about the delivery plan and the fact that so far it seems to have delivered nothing and promises more of the same. This sounds awfully like a minister's response to a parliamentary question.
 
The champions might go into back-rooms to ask confidentially what is happening with the 5 research hubs revealed by the Senned motion, as ME Research UK explained here:

Senedd Cymru/Welsh Parliament debate on ME – 10 December 2025

ME Research UK said:
However, Mr Price also asked for an amendment at the end of point 4 namely to:

Mr Price said:
develop a strategic approach to research by supporting Wales to host one of the

five proposed UK hubs

for collaborative translational research into pathological mechanisms that cause ME, long COVID and related post-acute infection conditions.”
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What is striking is the proposed 5 hubs proposal which appears new.

It was not in the action points of the ME/CFS Delivery Plan.

Is this movement to recogise the call by researchers, patients and charities (including ME Research UK) for a new co-ordinated and better funded research landscape?

Certainly, Mr Price hoped a hub would be based in Wales. The Minister’s response does hold out hope

The Minister said:
Adam Price and others importantly referred to the significance of research, and I agree with him and with others who have referred to it.

I’ve asked my officials to reach out to our research partners in the UK to better understand what the specific proposals are for funding and establishing the UK hubs that have been referred to.

This will enable us to engage with our research community to explore and take advantage of those potential opportunities,

and a meeting between my officials and Professor David Price is scheduled in the coming weeks.
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- and if it is still under wraps then obtain the redacted version so no more people fret and fritter away their efforts unnecessarily in the belief there is no such thing in the pipeline.

That puts a champion in the typical, invidious position under a gob-smacking obligation to stride across divisions keeping secrets from people they speak with and speak for who depend on them.

An independent, trusted enquirer might better examine - confidentially - the danger of exposing half-baked works in progress. Who could Sonya C ask to enquire?

Ps I was sure it said seven hubs, but currently only five.

Edit: pps I am not clear what Professor David Price does. The Minister was succinct enough to clearly differentiate him from Adam Price.
 
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