United Kingdom: Action for ME (AfME) news

Action for ME:
The recording from our 2025 Annual General Meeting (AGM) is now available to view on our YouTube channel!



And, in case you missed it, you can also find a copy of our most recent Annual Report & Accounts in the 'Resources' section of our website.

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
 
Action for ME:
Good news!

We’re happy to share that our Learn about ME project has been awarded £33,366 of funding from the Scottish government to continue for another year.

Since 2020, Learn about ME has helped healthcare professionals in Scotland build confidence in recognising and supporting people with ME, signposting to Learna’s free CPD-accredited learning module on ME, developed by Dr Nina Muirhead. Over 1,600 professionals have completed the module so far, and thousands more have engaged with Learn about ME podcasts and webinars.

With this new funding we will:

✅ Work with Dr Nina Muirhead, the ME Association and ME Action Scotland to update the CPD module with the latest research and information

✅ Create new podcasts and webinars

✅ Develop resources on ME and related conditions

Our aim is to help more professionals understand ME, improving early recognition, treatment and care.

Read the full response to Alex Cole-Hamilton's question https://tinyurl.com/4f66ub79
 
Moved posts

I don’t know if we have a specific Action for ME thread, but I have not been able to find it. However I came across on Facebook their announcement that they have appointed Sir Jeremy Hunt as their latest Parliamentary Champion.

See

In the comments under the post this unsurprisingly has been greeted with incredulity, given how unpopular he was when Secretary of State for Health. What is happening with the UK ME/CFS charities?
 
Last edited by a moderator:
Peter T said:
I don’t know if we have a specific Action for ME thread, but I have not been able to find it. However I came across on Facebook their announcement that they have appointed Sir Jeremy Hunt as their latest Parliamentary Champion.

See

In the comments under the post this unsurprisingly has been greeted with incredulity, given how unpopular he was when Secretary of State for Health. What is happening with the UK ME/CFS charities?
Click to expand...

At the risk of being political, whilst he was problematic as Health Secretary as a politician he is very solid, and I actually think this is both interesting and quite good. I’m not really in a position to explain why, so let’s see what happens.
 
Peter T said:
In the comments under the post this unsurprisingly has been greeted with incredulity, given how unpopular he was when Secretary of State for Health. What is happening with the UK ME/CFS charities?
Click to expand...
Whatever people may think of Jeremy Hunt’s politics, he is an influential politician and I think it is useful to have as many politicians on our side as possible – providing they get the messaging right. If Jeremy Hunt, a former chancellor of the exchequer who supported cuts to public spending is calling for increased funding for strategic research that would add considerable weight to our argument.

I remember that Hunt once had a letter in the Times about ME/CFS on the same day as me. I wonder if like Javid he has a personal connection to someone with ME/CFS.
 
Yeah, I think it's a great appointment. He's very bright and well-connected, and this isn't about party politics anyway. Not even a serving health secretary can tell doctors how to treat people or run their services, but politicians both in and out of power can influence opinion and culture, which is what's needed as much as anything.

GPs could offer domiciliary services to people with severe ME/CFS now, without any change of policy in Whitehall. It's a different kind of pressure and chain of consequences that's needed—say, finding a local board whose chair is open to after-dinner persuasion. If a model for service provision were developed and it got political 'likes', another board needing brownie points might see it's a low-cost way to push up their rankings. Once they came face to face with patients they never normally saw from one year end to the next, they'd begin to understand how badly those people are impacted by the lack of provision. Then we might start to see change.
 
Peter T said:
Moved posts

I don’t know if we have a specific Action for ME thread, but I have not been able to find it. However I came across on Facebook their announcement that they have appointed Sir Jeremy Hunt as their latest Parliamentary Champion.

See

In the comments under the post this unsurprisingly has been greeted with incredulity, given how unpopular he was when Secretary of State for Health. What is happening with the UK ME/CFS charities?
Click to expand...

A fellow mum with a daughter with ME/CFS has him as her constituency MP, raised issues and found him helpful.
 
Action for ME have responded to the predominantly negative comments on their Facebook page

Thank you for your comments. We can hear the strength of feeling here and we wanted to take the opportunity to explain our position here.

Sir Jeremy Hunt has over a decade’s worth of experience at the top of government, including as Chancellor, Health Secretary, and Chair of the Health and Social Care Select Committee. He has a deep understanding of the health system and the Treasury and can provide us with important insights we can use to further our campaign.

As more people become aware of ME and political support for our campaigns grow, it is natural that we will draw upon expertise from people of all parties. We must be a broad church to maximise our reach. What matters most is that they take action to improve the lives of people with ME in their role as Parliamentary Champion and we deliver the best results possible for those living with ME, and we will keep doing everything we can to ensure that governments of all colours do more to support those living with ME. That is, and will always be, our primary objective.

Please note we have turned off comments for the weekend as we are unable to monitor or engage in the discussion. We will be back in again on Monday.
Click to expand...
 
I can understand the negative feelings some have given all the history. I’ll be honest, my first reaction was more ‘wtf’ than anything.

But others here raise some really good points. And I want to echo that it’s important we get senior and influential people from across all political wings on side. That is a good thing.

Huge credit to Sonya and AfME for this. Can you think of anyone else getting John McDonnell and Jeremy Hunt on the same side of an issue?

They’ve just announced Siân Berry too. On top of people like Jess Phillips, this is not an insignificant list.
 
hotblack said:
I can understand the negative feelings some have given all the history. I’ll be honest, my first reaction was more ‘wtf’ than anything.

But others here raise some really good points. And I want to echo that it’s important we get senior and influential people from across all political wings on side. That is a good thing.

Huge credit to Sonya and AfME for this. Can you think of anyone else getting John McDonnell and Jeremy Hunt on the same side of an issue?

They’ve just announced Siân Berry too. On top of people like Jess Phillips, this is not an insignificant list.
Click to expand...
Yes I’m glad there have been good “food for thought” points to make people think twice.
He is, of course, most remembered for cutting Dr’s pay and unprecedented strikes as a result of his policy. On the face of it he would seem like the enemy of healthcare.
As I say, I believe he will be a good champion and others have been able to make better specific points about his usefulness.
I believe there are “good politicians” in every party, they’re good at what they do and can work well cross-party, I think he is one of these types. The fact he’s no longer in government and is in opposition makes me more comfortable with it, as I’m not a Tory.
 
MrMagoo said:
He is, of course, most remembered for cutting Dr’s pay and unprecedented strikes as a result of his policy. On the face of it he would seem like the enemy of healthcare.
Click to expand...

True, yet he was really good on the Health & Social Care select committee.

When it comes to factors that hamper people's ability to achieve what they believe is right, being in government is probably 20 percentage points ahead of the next thing on the list.
 
Jonathan Edwards said:
Apity they are still talking about ME when it comes to education.
Click to expand...
It is reflecting patient will. Patients have fought a long and hard battle to get m.e put alongside Chronic Fatigue syndrome after years of seeing
CFS scorned & most would rather it replace CFS entirely. I was just saying to my mum today it was crazy to use a name based around chronic fatigue, when my carer (who cycles 5 miles to get to mine, cycles 5 miles back, and is then going to take her children swimming) claims her joint disorder causes “chronic fatigue” also. We are allowing an immediate misapprehension about our disease - an illness that at best significantly limits & at worst can decimate. Also, I don’t think people’s chances trying to stand on a street corner with a collection tin for an illness called CFS is as good as if it had any other less trivialising name. This should warn us how detrimental keeping the name CFS is, especially when we are left to fund all our own research.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom