United Kingdom: Action for ME (AfME) news

https://www.actionforme.org.uk/gcoe-2025-webinar/

Genetics Centre of Excellence: update on recent research
9 May 2025


We’re hosting a webinar to share the latest updates from research linked to our Genetics Centre of Excellence.

Don't miss this chance to hear directly from the scientists leading important discoveries and to participate in an engaging Q&A session with patient and public representatives.

Date: Thursday 6 June

Time: 2pm to 3pm

The session will be chaired by our Chief Executive, Sonya Chowdhury. It will include two presentations followed by a Q&A with scientists and Public and Patient Involvement representatives.





The 6th June is a Friday.
Can anyone clarify the date of the webinar? @Andy.
 
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Binkie4 said:
https://www.actionforme.org.uk/gcoe-2025-webinar/

Genetics Centre of Excellence: update on recent research
9 May 2025


We’re hosting a webinar to share the latest updates from research linked to our Genetics Centre of Excellence.

Don't miss this chance to hear directly from the scientists leading important discoveries and to participate in an engaging Q&A session with patient and public representatives.

Date: Thursday 6 June

Time: 2pm to 3pm

The session will be chaired by our Chief Executive, Sonya Chowdhury. It will include two presentations followed by a Q&A with scientists and Public and Patient Involvement representatives.





The 6th June is a Friday.
Can anyone clarify the date of the webinar? @Andy.
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Will be interesting to hear an update on the Ryback blood project and PrecisionLife, but I suppose no DecodeME update at this webinar means we won't be getting results before 6th June...

Playing the waiting game is hard.
 
This Friday we have the webinar with updates from Audrey Ryback and the PrecisionLife team, AfMe appear to be accepting questions in advance, I wondered if anyone had sent any in or maybe we could come up with some together?
 
www.actionforme.org.uk

The UK Government sets out its Spending Review - our response - Action for ME

Earlier today, the Chancellor set out the Spending Review and we are encouraged to hear the Chancellor’s plans to invest in the...
www.actionforme.org.uk www.actionforme.org.uk

The UK Government sets out its Spending Review - our response​

11 June 2025



Earlier today, the Chancellor set out the Spending Review and we are encouraged to hear the Chancellor’s plans to invest in the NHS. It is clear that this investment is needed, alongside a greater understanding of ME amongst healthcare professionals.

However, the Government’s proposed welfare reforms pose serious risks to people affected by ME. The views and experiences of the community, as part of the Green Paper consultation, must be listened to and acted on to prevent vital support being taken away from those who need it.

Furthermore, the Chancellor confirmed that annual funding for research and development will rise to £22 billion by the end of the spending review, representing a record level of public investment in UK R&D.

Biomedical research into ME is urgently needed to understand the disease, develop diagnostic tests and find treatments. We are calling on the Government to take urgent action to ensure a strategic approach for research into ME and associated post-infectious illnesses, including long Covid.

We will continue to work closely with our Parliamentary Champions and the APPG on ME to ensure that your voices are heard.
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The issues highlighted are being discussed in other threads but thought people would like to see what AfME posted.
 
From Facebook:
❌ PIP cuts will be devastating for people with #ME and #LongCovid.

Our new briefing shows these reforms will push people further from work, deepen poverty, and worsen health.

We’re calling on MPs to oppose this!

Read the briefing and write to your MP using our guide (link to write to your MP is at the bottom of the page)

https://www.longcovid.org/impact/news/new-briefing-pip-cuts

In collaboration with:

Long Covid Support
Action for ME
Thereforme
ME Local Network

#TakingThePIP #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LongCovid

 
They say that there are 1.3M with ME/CFS in the UK, and that 50 % with LC have ME/CFS. The flaws with those estimates have been discussed elsewhere, and it’s not a great look on the messengers.

They also say that ME/CFS and LC are «multisystemic, fluctuating, energy-limiting conditions», and that pwME/CFS have very low FC and QoL.

Other than that, their argument is mostly that PIP helps people function better by enabling them to better overcome the limitations imposed by their disability, and that removing it will likely decrease hours worked by the people that rely on it. There’s also something about what PIP is and isn’t, but I’m don’t have any knowledge about that.

They cite a government paper that says that every £1 spent on disability gains a return of £1.48 in «value». I have not read the paper, but I suspect it includes a lot of immaterial value, i.e. value for the recipients, but not cash in the coffers of the government. I suspect the politicians might only care about the latter, so this particular argument should probably be more nuanced (e.g. also looking at value generated by the additional work being enabled, in relation to the point above).

I also suspect that mixing ME/CFS and LC is muddying things, and that pwME/CFS might have benefited from making a standalone argument.

They make nice use of the surveys and the answers to illustrate how the changes might impact individuals.
 
Yann04 said:
I get that this is criticised because we have no idea how physiologically accurate it is.

But I think it’s a pretty accurate descriptor in a non-biological, purely descriptive of patient experience sense.
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I agree that it’s a fairly good description of the experience if you have to sum it up in two words. And we do say that «people with ME/CFS have limited energy…» in the factsheet.

But when you pair it with «multisystemic» I think that it might be perceived as a medical description.
 
hotblack said:
Furthermore, the Chancellor confirmed that annual funding for research and development will rise to £22 billion by the end of the spending review, representing a record level of public investment in UK R&D.
Click to expand...
Note that most of this wouldn’t be for medical research. I think sometimes people can forget about all the other R&D expenditure. Think for example about all the academic schools and departments in a university.
 
From an email from AfME, latest fundraising campaign.
Like you, we know that significant change is needed for people with ME, and it is needed now.

At Action for ME, we know that change doesn’t just happen – it has to be made. That’s why, this year we are running a Summer Appeal and hoping to raise £25,000 to fund vital change for people affected by ME.

With your help, we can achieve:

  • Changes to our scientific understanding of ME, through more high-quality research.
  • Changes to the help and support available to adults, children and their loved ones.
  • Changes in attitudes towards ME – including those of politicians, health and social care professionals and educators.
Donate or share this campaign between 20th - 30th June to bring much-needed change for people with ME.
Click to expand...
www.actionforme.org.uk

Donate to our Summer Appeal - Action for ME

Donate today to help us raise £25,000 by the 30th June, and create much-needed change for people with ME. With your help,...
www.actionforme.org.uk www.actionforme.org.uk
 
I think the fundraising campaign would be much more effective if it headlined something specific that will be done. There is a lot of talk of 'change', but change can be good or bad.
Changes to the help and support available to adults, children and their loved ones
Click to expand...
AfME says 'we know change doesn't just happen - it has to be made'. From what I hear on the forum about the disability support assessments, there are likely to be changes to the help and support of people with ME/CFS in the UK even if AfME goes on a summer holiday. It's just that those changes may well not be for the better.

That vague campaign would not make me want to donate. If instead it told me about some young researcher who wants to investigate something interesting, or it told me that they were going run workshops for social workers on what ME/CFS is, with people with ME/CFS and their carers involved in talking with the social workers about their experiences, I think that would be a lot more effective. Frankly, even if they said that it was to fund the salaries and training costs of a new staff member to man the AfME helpline, or to fund the updating of their information resources, that would be more compelling than 'fund us to make change'.

Actually, if you click through, you can find more detail - a relatively long list of things the relatively small amount of money will be spent on. And, a lot of them are still vague:
  • Providing information, support and resources to anyone affected by ME
  • Reducing the isolation experienced by young people and adults with ME through access to our peer support services,
  • Providing Advocacy support to adults with ME, ensuring their human rights are respected by professionals involved in their care/support
  • Offering healthcare bursaries to people with ME so that they can continue to access ME-informed doctors, physiotherapists and counsellors
  • Accelerating much-needed breakthrough ME research through our Genetics Centre of Excellence
  • Inspiring the next generation of ME researchers through our Future Leaders network
  • Educating healthcare and education professionals on the reality of living with ME
  • Growing our Parliamentary Champion’s network to increase awareness and understanding within Parliament, amplifying the voices of people affected by ME.
I'd prefer they just picked a few and told us how things will work. For example 'educating healthcare and education professionals on the reality of living with ME' - what does that mean, especially if they only have about 1/8th of 25,000 pounds to do it?
They could just say 'We need 15,000 pounds to help fund the next stage of DecodeME and 10,000 pounds to offer scholarships to young researchers working on ME/CFS. Can you help?'
 
From Facebook:

We’re excited to announce our new research project ‘PRIME’ which will create infrastructure for ME research in the UK.

Starting in October 2025 PRIME is funded by the Medical Research Council. It’s a 4 year project between Action for ME, Edinburgh University and the Genetics Centre of Excellence.

What Will PRIME do?

Coordinate and engage researchers by creating at least 15 new research collaborations.

Strengthen International Research Networks by forming two global groups (consortias), one with a focus on genetics and the other on molecular biomarkers.

Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers) so that any research is created and shaped with lived experience at it’s centre.

PRIME is an exciting project but it’s just the beginning. We urgently need sustained public funding to make up for the neglect in research over the last decade.

Read more about PRIME on our website

www.actionforme.org.uk

New Research Project: PRIME – Building Infrastructure for Patients, Researchers and Industry for ME/CFS - Action for ME

New research project: PRIME - Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis (ME/CFS).
www.actionforme.org.uk www.actionforme.org.uk

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

 
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