UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care
- Thread starter OrganicChilli
- Start date
Sasha
Senior Member (Voting Rights)
Thanks for the updates, Binkie4 - rest well, and good luck with your hospital appointment.
Binkie4
Senior Member (Voting Rights)
Update 2
#JusticeforME
£8398 raised
Sept. 8, 2025
Our next update will be on case(s) progress. Meanwhile, a couple of details on the campaign.
Thanks to everyone who let us know they were confused by the title on the #Justice4ME home page when it launched. The campaign is for a specialist NHS service for everyone living with ME, including family carers, regardless of the severity or duration of the illness. We think this includes NHS employees working with everyone living with ME too - but until they join us that's just a guess.
We have changed the title to reflect this distinction but please come back to us with more feedback if you think we can improve on it.
Also, people have reported having had difficulties with sharing the fundraising page. We have tested this with both a computer and a smartphone but could not find the issue. CrowdJustice will be pleased to help if the problem persisits. Please contact them direct at support@crowdjustice.com. If you can screenshot the issue it may help describe it to them better.
Everyone living with ME knows the only way to survive it is to pace. Everything. All the time. Day in, day out. Year in, year out. August was an over-excited month for us in the UK, with the Final Delivery Plan being published by government late in July and the Decode ME findings being published a couple of weeks later. Add to the emotion of these historic moments a very long hot summer and you can guarantee ME symptoms will increase. We are thinking of you all; we are here for you all, and for nobody else.
With #Justice4ME there is no rush to keep up; we know our case(s) need time. Some of our contributors are not well enough to complete what they have started. That is OK. We will be here when they have enough energy spare to come back.
Without you too, we are nothing. Just join us when you can, give as much as you can afford, and share our campaign with everyone you know.
Justice4me.uk will take you directly to the giving page.
#JusticeforME
£8398 raised
Sept. 8, 2025
Keep on sharing, please keep on giving
We are over halfway to our stretch target, thank you for these donations!!Our next update will be on case(s) progress. Meanwhile, a couple of details on the campaign.
Thanks to everyone who let us know they were confused by the title on the #Justice4ME home page when it launched. The campaign is for a specialist NHS service for everyone living with ME, including family carers, regardless of the severity or duration of the illness. We think this includes NHS employees working with everyone living with ME too - but until they join us that's just a guess.
We have changed the title to reflect this distinction but please come back to us with more feedback if you think we can improve on it.
Also, people have reported having had difficulties with sharing the fundraising page. We have tested this with both a computer and a smartphone but could not find the issue. CrowdJustice will be pleased to help if the problem persisits. Please contact them direct at support@crowdjustice.com. If you can screenshot the issue it may help describe it to them better.
Everyone living with ME knows the only way to survive it is to pace. Everything. All the time. Day in, day out. Year in, year out. August was an over-excited month for us in the UK, with the Final Delivery Plan being published by government late in July and the Decode ME findings being published a couple of weeks later. Add to the emotion of these historic moments a very long hot summer and you can guarantee ME symptoms will increase. We are thinking of you all; we are here for you all, and for nobody else.
With #Justice4ME there is no rush to keep up; we know our case(s) need time. Some of our contributors are not well enough to complete what they have started. That is OK. We will be here when they have enough energy spare to come back.
Without you too, we are nothing. Just join us when you can, give as much as you can afford, and share our campaign with everyone you know.
Justice4me.uk will take you directly to the giving page.
Sly Saint
Senior Member (Voting Rights)
why didn't they use the #Justice4ME hashtag?
Binkie4
Senior Member (Voting Rights)
NHS care for ME now
by #JusticeforMELegal campaign
Lawyers: Rook Irwin Sweeney LLP
United Kingdom
#JusticeforME
Case Owner
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
£8614 raised
It's going up more slowly now and I'm conscious that 12 days to go isn't a lot, but don't know about last-minute surges etc with this sort of thing.
I think I'm understanding the conundrum with regard keeping strategy or individual cases from showing a hand or putting anyone in a difficult situation.
But I'm not even sure of that, I'm tired and so don't know what is just me getting confused and not putting pieces together that are out there and others understand when they read these things to be sure I've got the right end of the stick of what this is.
Is there an even more private option for discussing this so someone can explain what we sort of know any better?, I'm worried even discussing it as I don't know what 'guesses' or questions might in themselves blow it for this confidentiality and I'm almost scared to ask things in case I'm the one who should have known not to mention x or y , even if I think I'm being careful.
I think I'm understanding the conundrum with regard keeping strategy or individual cases from showing a hand or putting anyone in a difficult situation.
But I'm not even sure of that, I'm tired and so don't know what is just me getting confused and not putting pieces together that are out there and others understand when they read these things to be sure I've got the right end of the stick of what this is.
Is there an even more private option for discussing this so someone can explain what we sort of know any better?, I'm worried even discussing it as I don't know what 'guesses' or questions might in themselves blow it for this confidentiality and I'm almost scared to ask things in case I'm the one who should have known not to mention x or y , even if I think I'm being careful.
I don’t understand what The vagueness that is deterring me from donating is driven by. I don’t need to know sensitive individual case studies in order to be told a clear vision & who is leading it etc. Afaics the strongest case is regarding what appears to be the ongoing plan to offer nothing within the nhs services for severe ME
Binkie4
Senior Member (Voting Rights)
I have donated but agree that I would like more clarity about this campaign. I am hoping that more will be clear when the next update is published. Update 2 said
"Our next update will be on case(s) progress. Meanwhile, a couple of details on the campaign.
Thanks to everyone who let us know they were confused by the title on the #Justice4ME home page when it launched.
The campaign is for a specialist NHS service for everyone living with ME, including family carers, regardless of the severity or duration of the illness.
We think this includes NHS employees working with everyone living with ME too - but until they join us that's just a guess."
I would like to know what the lawyers' opinion is. I am presuming that this will be included in the phrase "case(s) progress" but maybe it won't.
I'm also not clear what the statement "includes NHS employees working with everyone living with ME" means. Anyone who supports it can join the campaign ( I should think) but why a special mention for NHS employees?
My own clarity of thinking is still very poor and slow: brain fog is worse but I don't have a clear idea of where this is going. Maybe others have a clearer idea?
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I can’t see how they have Sarah and Whitney’s endorsement for something vague?
V.R.T.
Senior Member (Voting Rights)
This is needlessly vague and plays into the BPS people's hands. 'Oh we already have a specialist NHS service of bullshit and stealth GET no need to worry.'
We need a specialist physician led service with home visits and trained nurses to do blood draws and the like.
Why on earth could they not just clearly state that? It's incredibly simple.
A campaign like this is very necessary but I haven't contributed yet because I don't quite understand what I'm giving money to.
Nightsong
Senior Member (Voting Rights)
I have some concerns about this campaign.
Firstly, there is a complete lack of any clarity as to who is behind it. I understand, perhaps more than most, the reasons why some pwME would not wish to publicly engage in advocacy under their real names; but, equally, if you are going to be asking for serious sums of money from seriously unwell people to engage in a course of action that could affect, collectively, all of our lives, I do not think it is too much to ask for at least one person to step forward as a publicly identified representative of the campaign, and to take responsibility for it. If this does go to court the identities of those involved are, in any event, likely to be made a matter of public record.
The campaign is apparently "for a specialist NHS service". Run by whom, and on what lines? If the NHS were to commission one at present they would probably turn to either BACME or one of the even more hardline psychobehaviouralists.
In the 1990s there was a small number of physicians interested in ME/CFS. Then came the campaigning for NHS services - resulting in the 2002 CMO report, which recommended the setting up of "biopsychosocial" services - and now we have no serious interested physicians and a whole network of utterly dreadful clinics run by psychologists and physiotherapists on psychosomatic or rehabilitationist lines, who have all thoroughly entrenched themselves. No national charity or advocacy organisation is against these "services", and both AfME and MEA are actively working with them. What makes these campaigners so sure that a "specialist" service would be any better?
I would love to see a service that provided compassionate supportive care, included domiciliary care for the most severe, and worked with serious researchers, but I do not think this is a likely outcome of such a campaign at the present time.
Firstly, there is a complete lack of any clarity as to who is behind it. I understand, perhaps more than most, the reasons why some pwME would not wish to publicly engage in advocacy under their real names; but, equally, if you are going to be asking for serious sums of money from seriously unwell people to engage in a course of action that could affect, collectively, all of our lives, I do not think it is too much to ask for at least one person to step forward as a publicly identified representative of the campaign, and to take responsibility for it. If this does go to court the identities of those involved are, in any event, likely to be made a matter of public record.
The campaign is apparently "for a specialist NHS service". Run by whom, and on what lines? If the NHS were to commission one at present they would probably turn to either BACME or one of the even more hardline psychobehaviouralists.
In the 1990s there was a small number of physicians interested in ME/CFS. Then came the campaigning for NHS services - resulting in the 2002 CMO report, which recommended the setting up of "biopsychosocial" services - and now we have no serious interested physicians and a whole network of utterly dreadful clinics run by psychologists and physiotherapists on psychosomatic or rehabilitationist lines, who have all thoroughly entrenched themselves. No national charity or advocacy organisation is against these "services", and both AfME and MEA are actively working with them. What makes these campaigners so sure that a "specialist" service would be any better?
I would love to see a service that provided compassionate supportive care, included domiciliary care for the most severe, and worked with serious researchers, but I do not think this is a likely outcome of such a campaign at the present time.
Agreed. The ‘what’ the service is has always been an issue and certain things which could be improvements come with greater risk also and because of that need to be pushed for with transparency and clarity of how such concerns are being taken seriously.
Chandelier
Senior Member (Voting Rights)
Sarah Boothby via BlueSky:
Page by sarah boothby | @swastrosarah.bsky.social
(long!) justice4me.uk update: sent to donors yesterday: "Having taken legal advice, thanks to your donations, we have instructed our lawyers to proceed with a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to 1/10
skywriter.blue
V.R.T.
Senior Member (Voting Rights)
Maybe it's brain fog but I still don't understand what the specific demands of this legal challenge are. I want to support it but I can't if they aren't clearer about what kind of service they are pushing for. I feel uncomfortable giving my money to any campaign that might inadvertantly further empower BACME by asking for the sort of things we critique on here all the time.
MrMagoo
Senior Member (Voting Rights)
They are mounting legal challenges on areas of the ME Delivery Plan where such challenge is possible, I thought?
Binkie4
Senior Member (Voting Rights)
19
hours to go
£10,080
Update 3
#JusticeforME
Sept. 26, 2025
We doubt this vulnerability is what was intended in the drafting of the Plan. We know people with ME/cfs have had cross party political support for decades. We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will be resolved without a court hearing being necessary. People living with ME, and the NHS staff trying their best to deliver safe clinical care without clear, succinct, safe clinical guidance to follow, deserve nothing less.
If the reply from DHSC to our letter is not satisfactory, and the inconsistencies we have identified in the Final Delivery Plan persist, we must apply for Judical Review by 21 Octoberat the latest.
At this stage, we cannot share with you the advice we have been given but we will explain everything the very first chance we get. Sorry if that's frustrating; it is for us! If the case does come to court the legal arguments will be made public that way but we hope the DHSC will make the changes needed sooner. The changes needed are not huge, they are efficient, and they will not cost the NHS more money than is already being wasted on catastrophic mismanagement of ME.
This is a first step, made possible only by your generosity and the long history of injustice that got us here. We are honoroued by so many of you sharing your time, comments and money with us. We could not have got so far without you. We rely on your feedback on social media to be sure the aims of #Justice4ME reach the widest audience possible.
More updates will follow in the coming weeks, including additional endorsements and images on our homepage. Meanwhile, please keep on sharing our campaign with everyoneyou know, however unlikely! Since we met the initial fundraising target in our launch week, the campaign to raise the final third for this first phase will continue throughout October.
Thank you, thank you, thank you for helping make #Justice4ME a serious proposition. Let's have our NHS knowing what to do about ME without doubts, indecision or delays - all over the UK, please.
hours to go
£10,080
Update 3
#JusticeforME
Sept. 26, 2025
KC advice recieved and - thanks to you - instructions given
We have now taken legal advice, thanks to your donations, and instructed our lawyers to proceed with sending a letter before claim to the Department of Health and Social Care (DHSC). This does not mean there will be a claim (an application to the court for Judicial Review of the Final Delivery Plan for ME/cfs) it means there are inconsistencies within the Plan that make it vulnerable to legal challenge.We doubt this vulnerability is what was intended in the drafting of the Plan. We know people with ME/cfs have had cross party political support for decades. We know hundreds of people contributed their knowledge, lived experience and expertise to developing the Plan, so we hope these snags will be resolved without a court hearing being necessary. People living with ME, and the NHS staff trying their best to deliver safe clinical care without clear, succinct, safe clinical guidance to follow, deserve nothing less.
If the reply from DHSC to our letter is not satisfactory, and the inconsistencies we have identified in the Final Delivery Plan persist, we must apply for Judical Review by 21 Octoberat the latest.
At this stage, we cannot share with you the advice we have been given but we will explain everything the very first chance we get. Sorry if that's frustrating; it is for us! If the case does come to court the legal arguments will be made public that way but we hope the DHSC will make the changes needed sooner. The changes needed are not huge, they are efficient, and they will not cost the NHS more money than is already being wasted on catastrophic mismanagement of ME.
This is a first step, made possible only by your generosity and the long history of injustice that got us here. We are honoroued by so many of you sharing your time, comments and money with us. We could not have got so far without you. We rely on your feedback on social media to be sure the aims of #Justice4ME reach the widest audience possible.
More updates will follow in the coming weeks, including additional endorsements and images on our homepage. Meanwhile, please keep on sharing our campaign with everyoneyou know, however unlikely! Since we met the initial fundraising target in our launch week, the campaign to raise the final third for this first phase will continue throughout October.
Thank you, thank you, thank you for helping make #Justice4ME a serious proposition. Let's have our NHS knowing what to do about ME without doubts, indecision or delays - all over the UK, please.
Binkie4
Senior Member (Voting Rights)
Things are going to have to move pretty quickly if Judicial Review has to be applied for before 21 st Oct at latest, if the reply from the DHSC is unsatisfactory.
Can a reply from the DHSC be relied on before that date? How many working days are the DHSC allowed in which to send a reply? What happens if a reply isn't received before then in time to allow a reply (ed by the campaign) by 21 st?
Can anyone enlarge on the implications of the legal process outlined?
I wonder what the requested changes are and what inconsistencies in law have been identified within the Plan.
Can a reply from the DHSC be relied on before that date? How many working days are the DHSC allowed in which to send a reply? What happens if a reply isn't received before then in time to allow a reply (ed by the campaign) by 21 st?
Can anyone enlarge on the implications of the legal process outlined?
I wonder what the requested changes are and what inconsistencies in law have been identified within the Plan.
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