UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care
- Thread starter OrganicChilli
- Start date
MrMagoo
Senior Member (Voting Rights)
Justice For ME
They have added some personal profiles on their fundraising page:-
Catherine Hale, Naomi Bem, Madeleine Wallner, Galen Warden, Sarah Boothby
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Beth
Established Member (Voting Rights)
Seen on bluesky a post asking for severe/very severe to fill out a form, time sensitive call for evidence, but can’t find any other info about what it’s for or why, can’t post the link because I’ve already forgetten the forum rules for social media posts, if any one else can it’s Sarah boothbys account
Yann04
Senior Member (Voting Rights)
MrMagoo
Senior Member (Voting Rights)
An update via email today
Our claim is supported by fresh evidence from people with severe/very severe ME, all living in the same fear of NHS ignorance of how to safely manage PEM (post exertional malaise) in England and Wales.
We also cite a number of Regulation 28 Reports on the prevention of future deaths from ME/CFS.
The former Minister, Ashely Dalton, published the Plan for ME in July 2022 with these words,
"I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed."
Politicians do nothing for their reputations when such words are backed by inaction.
Thank you for your continued support. Please share this update with people you know, especially anyone without direct experience of the illness, and help us raise awareness of this injustice. We could not do any of this without you.
On Friday 1 May our lawyers issued our second letter before claim. Our challenge is in direct response to the Government's announcement on 24 March that it would not begin to consider NHS provision for severe/very severe ME before April 2027. We are challenging this as a failure to protect people with severe/very severe ME from the NHS neglect under Articles 2, 3 and 14 in the Human Rights Act (1998).
Our claim is supported by fresh evidence from people with severe/very severe ME, all living in the same fear of NHS ignorance of how to safely manage PEM (post exertional malaise) in England and Wales.
Thanks to everyone who responded to the call. It was a big ask with very little time for replies due to the urgency of our claim. The responses were hard to read but demonstrated how widely these horrors are felt. An underestimated 100,000 people are at risk, without including everyone meeting ME diagnostic criteria following Covid infections.
We also cite a number of Regulation 28 Reports on the prevention of future deaths from ME/CFS.
The former Minister, Ashely Dalton, published the Plan for ME in July 2022 with these words,
"I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed."
Politicians do nothing for their reputations when such words are backed by inaction.
Government has until 12pm on 15 May 2026 to show what they will do under the new Minister, Sharon Hodgson.
Thank you for your continued support. Please share this update with people you know, especially anyone without direct experience of the illness, and help us raise awareness of this injustice. We could not do any of this without you.