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.
 
Last edited by a moderator:
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.
 
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