hotblack
Senior Member (Voting Rights)
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.
Agree, emailing them is a great idea.
United Kingdom: Action for ME (AfME) news
- Thread starter Andy
- Start date
Kitty
Senior Member (Voting Rights)
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
Senior Member (Voting Rights)
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
Senior Member (Voting Rights)
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.'
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.
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
More discussion of this on the UK House of Lords/House of Commons: Relevant people and questions thread
''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.'
Siân Berry Green, Brighton PavilionTo 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.
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
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AfME is part of the Overlapping Illness Alliance - more on that thread.
Kitty
Senior Member (Voting Rights)
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.
Dolphin
Senior Member (Voting Rights)
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
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
Dolphin
Senior Member (Voting Rights)
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
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
InitialConditions
Senior Member (Voting Rights)
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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Dolphin
Senior Member (Voting Rights)
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
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
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
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
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
Jonathan Edwards
Senior Member (Voting Rights)
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.