InitialConditions
Senior Member (Voting Rights)
I assume #MEAction Scotland will be folded into the new charity?
United Kingdom: News from #MEAction Network UK
- Thread starter MSEsperanza
- Start date
Their details are listed on the Charity Commission website:
https://register-of-charities.chari...rityDetailsPortlet_organisationNumber=5213556
Some quotes
https://register-of-charities.chari...rityDetailsPortlet_organisationNumber=5213556
Some quotes
Sly Saint
Senior Member (Voting Rights)
Homepage - MEAction UK
meaction.org.uk
Dolphin
Senior Member (Voting Rights)
From Facebook:
In mid December last year, #MEActionUK emailed NHS England regarding the web page on ME/CFS on the NHS UK website (see link below). Although the page was recently updated - on 28th May 2024 - it currently contains misleading information which does not align with the NICE guideline NG206 on ME/CFS.
This webpage is an important source of information for people looking for information on ME/CFS, particularly journalists and others in the media who continue to quote the incorrect information it contains, for example 'The most common symptom is extreme tiredness'. #MEActionUK asked NHS England to edit it in order that it reflects the latest guideline, while noting that some aspects of the NICE guideline for ME/CFS (2021) HAVE been incorporated into the web page.
Just before Christmas, NHS England replied saying that our request would be added to their backlog for a member of the website team to pick up when there is capacity. They will notify us when this has happened. #MEActionUK will keep in contact with NHS England and keep you updated on any progress.
bit.ly
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
In mid December last year, #MEActionUK emailed NHS England regarding the web page on ME/CFS on the NHS UK website (see link below). Although the page was recently updated - on 28th May 2024 - it currently contains misleading information which does not align with the NICE guideline NG206 on ME/CFS.
This webpage is an important source of information for people looking for information on ME/CFS, particularly journalists and others in the media who continue to quote the incorrect information it contains, for example 'The most common symptom is extreme tiredness'. #MEActionUK asked NHS England to edit it in order that it reflects the latest guideline, while noting that some aspects of the NICE guideline for ME/CFS (2021) HAVE been incorporated into the web page.
Just before Christmas, NHS England replied saying that our request would be added to their backlog for a member of the website team to pick up when there is capacity. They will notify us when this has happened. #MEActionUK will keep in contact with NHS England and keep you updated on any progress.
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)
Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.
bit.ly
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
do you know whether it was mid- Dec 2025 they mean (or Dec 2024) ?From Facebook:
In mid December last year, #MEActionUK emailed NHS England regarding the web page on ME/CFS on the NHS UK website (see link below). Although the page was recently updated - on 28th May 2024 - it currently contains misleading information which does not align with the NICE guideline NG206 on ME/CFS.
This webpage is an important source of information for people looking for information on ME/CFS, particularly journalists and others in the media who continue to quote the incorrect information it contains, for example 'The most common symptom is extreme tiredness'. #MEActionUK asked NHS England to edit it in order that it reflects the latest guideline, while noting that some aspects of the NICE guideline for ME/CFS (2021) HAVE been incorporated into the web page.
Just before Christmas, NHS England replied saying that our request would be added to their backlog for a member of the website team to pick up when there is capacity. They will notify us when this has happened. #MEActionUK will keep in contact with NHS England and keep you updated on any progress.
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)
Read about myalgic encephalomyelitis (chronic fatigue syndrome or ME/CFS). It’s a long-term condition with a wide range of symptoms including extreme tiredness.
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
- slightly thrown by the last year in relation to 'recently updated in May 2024', and the NHS England replying just before Christmas which could mean they replied in a week or two.
Dolphin
Senior Member (Voting Rights)
From Facebook:
!
Take part in our survey and help advance a diagnostic blood test for ME/CFS
MEAction UK is working with the research team at the University of East Anglia (UEA) Medical School to assist in developing a research application to be submitted to the Medical Research Council (MRC). To help them secure funding we just need approximately five to ten minutes of your time to complete this questionnaire.
To complete the questionnaire and for more information read our news article:
#MyalgicEncephalomyelitis #MEBloodTest
!
Take part in our survey and help advance a diagnostic blood test for ME/CFS
MEAction UK is working with the research team at the University of East Anglia (UEA) Medical School to assist in developing a research application to be submitted to the Medical Research Council (MRC). To help them secure funding we just need approximately five to ten minutes of your time to complete this questionnaire.
To complete the questionnaire and for more information read our news article:
#MyalgicEncephalomyelitis #MEBloodTest
Nightsong
Senior Member (Voting Rights)
The following went out today to an ME Action mailing list; they are campaigning for a specific service for very severe patients.
What troubles me is that there is no acknowledgement that the existing "services" are, to use the modern political argot, "not fit for purpose" - that the existing NHS provision ranges between largely useless and very severely harmful. If the NHS were to commission such a service at the present time they would likely turn to BACME & to the existing psychobehavioural / rehabilitationist clinics - or, even worse, to some liaison psychiatry based approach like that of NICPM.
Without first campaigning for a change in the type of provision that is currently offered; without a wholesale change in NHS policy on ME/CFS - we could end up empowering those who are very much part of the problem, in precisely the same manner as occurred with the Norwegian National Competence Centre.
What troubles me is that there is no acknowledgement that the existing "services" are, to use the modern political argot, "not fit for purpose" - that the existing NHS provision ranges between largely useless and very severely harmful. If the NHS were to commission such a service at the present time they would likely turn to BACME & to the existing psychobehavioural / rehabilitationist clinics - or, even worse, to some liaison psychiatry based approach like that of NICPM.
Without first campaigning for a change in the type of provision that is currently offered; without a wholesale change in NHS policy on ME/CFS - we could end up empowering those who are very much part of the problem, in precisely the same manner as occurred with the Norwegian National Competence Centre.
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Post moved from World ME Day 2026 (May 12th)
Is there a page for the different areas or are they all to be discussed here? I note there is a page for the US campaign then a link thru to see if it is eg UK or global etc.
The UK page: https://www.meaction.net/millionsmissing26-uk
has a para for the UK and then the rest is for Scotland
It seems the main MEACtion UK campaign is to ask pwme to lobby their MP. With a sheet telling them how to get in touch with their MP. For those who already do and so know about this the main additional info that makes it more 'specific' ie to the campaign only seems to be the suggestions of what MEAction says you might bring up?
Which seems to be covered by the following:
Can I ask where this was agreed and who decides this is what they were positioned to ask for (as they had the detail) eg 'a service for the very severe', but also where the idea we should all be asking for a virtual ward system came from?
I'm guessing we don't just want to lobby the ICB for there to be 'something' in relation to that and all of the description of it seems to be generic to illnesses. ie monitoring is all very well but NO if it is a case of them using this suggestion to put those most severe on the medical equivalent of behavioural monitoring thru apps and wearables.
How much time has been spent making sure there is a central document that means noone is 'just writing this' and then ICB being left to it? Is there said document?
Are they aware of the risk of making things a lot worse for those who are most severe by doing 'something' in a rushed or ill-thought-through way?
Sorry but I get very frustrated by the iterative own-goals we leave governments to take someone's words and be able to do something which would be terrible for patients under the guise of 'they asked for it' because that ask was left to be done whatever way someone likes.
SO I want to know what is going on? Where has this come from? How much time was spent on it? How many of those directly involved with those very severe, currently (not just people thinking/assuming they know what they need) and ongoing, and listening properly to those who are severe and very severe speaking for themselves and giving them the space and 'seeking to understand' was this based on? Or which medical / experts were involved to check it is an ask that wouldn't backfire or didn't need to be caveated etc?
Is there a page for the different areas or are they all to be discussed here? I note there is a page for the US campaign then a link thru to see if it is eg UK or global etc.
The UK page: https://www.meaction.net/millionsmissing26-uk
has a para for the UK and then the rest is for Scotland
It seems the main MEACtion UK campaign is to ask pwme to lobby their MP. With a sheet telling them how to get in touch with their MP. For those who already do and so know about this the main additional info that makes it more 'specific' ie to the campaign only seems to be the suggestions of what MEAction says you might bring up?
Which seems to be covered by the following:
Can I ask where this was agreed and who decides this is what they were positioned to ask for (as they had the detail) eg 'a service for the very severe', but also where the idea we should all be asking for a virtual ward system came from?
I'm guessing we don't just want to lobby the ICB for there to be 'something' in relation to that and all of the description of it seems to be generic to illnesses. ie monitoring is all very well but NO if it is a case of them using this suggestion to put those most severe on the medical equivalent of behavioural monitoring thru apps and wearables.
How much time has been spent making sure there is a central document that means noone is 'just writing this' and then ICB being left to it? Is there said document?
Are they aware of the risk of making things a lot worse for those who are most severe by doing 'something' in a rushed or ill-thought-through way?
Sorry but I get very frustrated by the iterative own-goals we leave governments to take someone's words and be able to do something which would be terrible for patients under the guise of 'they asked for it' because that ask was left to be done whatever way someone likes.
SO I want to know what is going on? Where has this come from? How much time was spent on it? How many of those directly involved with those very severe, currently (not just people thinking/assuming they know what they need) and ongoing, and listening properly to those who are severe and very severe speaking for themselves and giving them the space and 'seeking to understand' was this based on? Or which medical / experts were involved to check it is an ask that wouldn't backfire or didn't need to be caveated etc?
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Dolphin
Senior Member (Voting Rights)
From Facebook
In our 2024-2025 Annual Report we detail our campaigns, education, parliamentary and eduction work with #MEAction UK leading our campaigning in England and Wales and #MEAction Scotland focussing on campaigning and advocacy in Scotland.
Read the full report here https://meaction.org.uk/media/annual-report-digital-6/Annual Report (digital) (6).pdf
#MyalgicEncephalomyelitis #MyalgicE
In our 2024-2025 Annual Report we detail our campaigns, education, parliamentary and eduction work with #MEAction UK leading our campaigning in England and Wales and #MEAction Scotland focussing on campaigning and advocacy in Scotland.
Read the full report here https://meaction.org.uk/media/annual-report-digital-6/Annual Report (digital) (6).pdf
#MyalgicEncephalomyelitis #MyalgicE
Dolphin
Senior Member (Voting Rights)
From Facebook
MEAction UK are delighted to welcome our new trustees. Follow the link to learn more.
#pwME #MyalgicEncephalomyelitis
MEAction UK are delighted to welcome our new trustees. Follow the link to learn more.
#pwME #MyalgicEncephalomyelitis
Chandelier
Senior Member (Voting Rights)
#MEAction and Writers Guild Initiative Workshop
#MEAction is excited to partner with the Writers Guild Initiative (WGI) again to offer a virtual creative writing workshop series for people living with ME or Long COVID. These workshops are designed to give participants space to explore their creativity, strengthen their writing skills, and...
www.meaction.net
Chandelier
Senior Member (Voting Rights)
From Bluesky:
www.meaction.net
Content note: Suicide prevention..
Changing the narrative on suicide requires systemic change.
It's about shifting froma culture of silence and stigma to one of openness, understanding, and support.
Resources:
CRISIS RESOURCES | #MEAction
Living with ME can be extremely difficult. #MEAction strives to create spaces of support.
www.meaction.net
