UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care

OrganicChilli

OrganicChilli

Senior Member (Voting Rights)
A fundraiser for "Medical care for ME now".

We urgently need your support to make sure the specialist health and care services needed by everyone living with ME (Myalgic Encephalomyelitis) are provided without delay.

After three years of consultation, the Government’s Final Delivery Plan for ME/cfs, published in July 2025, made no commitment to the specialist health service needed.
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Endorsed by Sarah Boothby on Bluesky:

 
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From https://www.crowdjustice.com/case/justice4me/

"We urgently need your support to make sure the specialist health and care services needed by everyone living with ME (Myalgic Encephalomyelitis) are provided without delay.

After three years of consultation, the Government’s Final Delivery Plan for ME/cfs, published in July 2025, made no commitment to the specialist health service needed,

“NHS England also remains committed to working with a wide range of patients, patient groups and other stakeholders in the development of its commissioning of specialised services. Ultimately, prescribing a specialised service will be a ministerial decision and subject to funding availability.”

https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan

Stating that funding and services will be contingent on a political decision, yet again kicks people living with ME where it hurts:

  • People are dying from ME without a specialist service

  • Hospitals are clueless about how to safely manage ME patients without a specialist service

  • Families are giving up their lives and livelihoods to provide the highly skilled nursing care required without a specialist service

We are not asking for anything not already offered to other people with chronic health conditions – and we never asked to be here, doing this, either. Now that we are here, please help fund our legal challenge. Donate what you can afford, so we can get expert legal advice on how to fight back.

You can see who our lawyers are at the top of this page.

Our case(s) identities are strictly private and confidential. Their details must not be disclosed anywhere by anybody but themselves. We will keep you regularly updated on progress and publish everything we can.

We know this is not going to be easy and that bringing this action is going to be costly. We also know that many people living with ME have been waiting for an opportunity to donate to a fund that will proactively represent them and nobody else. We trust this is it.

We are raising £6K to get the case(s) opened with a target of £15K to keep all of it moving forward. There will be more fundraisers to follow.

We are completely independent of the ME organisations. We hope they will support us financially (for the benefit of their members) – donations can be anonymous, unless you choose to publicise them. Crowd Justice is giving us the lowest possible level of donation at £5, so if you can only afford to donate once, please join us. There are over a million people living with ME in England alone. Everyone deserves to have a chance to participate in paid employment, complete their studies, raise a family, and contribute socially without being punished by illness. Together we can make a Plan for ME that finally delivers the safe, knowledgeable medical care needed as the first priority."

I wonder what exactly the desired "specialist health and care services" are meant to provide, and who is meant to staff them.
 
Andy said:
I wonder what exactly the desired "specialist health and care services" are meant to provide, and who is meant to staff them.
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I agree we need to know what is desired, given the confusion in this area. I'm not sure whether we can reasonably expect to know who would staff our ideal service at this point - presumably when a new kind of service is set up, people come forward and get interviewed?
 
"From https://www.crowdjustice.com/case/justice4me/

"We urgently need your support to make sure the specialist health and care services needed by everyone living with ME (Myalgic Encephalomyelitis) are provided without delay.

After three years of consultation, the Government’s Final Delivery Plan for ME/cfs, published in July 2025, made no commitment to the specialist health service needed,

“NHS England also remains committed to working with a wide range of patients, patient groups and other stakeholders in the development of its commissioning of specialised services. Ultimately, prescribing a specialised service will be a ministerial decision and subject to funding availability.”

https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan" posted by @Andy

I took it to mean that the fundraiser was to raise money to challenge the final delivery plan that was put forward because of its total in adequacy. Correct me if I've interpreted it wrongly.
Then presumably the staff in post (edit: and new staff where required) would be expected to carry out the terms of a (hopefully revised) plan with extra training if needed. A legal challenge will be expensive so the initial £6 000 aim is only a starting point. I wonder what the lawyers are advising.
The details of the proposed specialised service don't seem to be there. That still seems to need to be developed. I wonder if they are intending to just get the current final delivery plan taken down with an instruction to ? ? Secretary of State to do it again in line with the Nice guidelines. They are calling attention to what Nice recommended which has not been provided. From the crowd justice statement.....see below. £2900 already raised.


"NICE recommends a specialist service.

[1] NICE (last revised May 2025) 'Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)' https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/"
 
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Jonathan Edwards said:
I still cannot access the site. I would not advise donating without more details.

The one thing I can do is provide my services free to advise on what the clinical realities are. I would be very happy to offer advice to those ivolved but so far I have no way to communicate.
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That would be wonderful.
If anyone is in touch with this group, can they point out the need for a contact point?

The case owner is by #Justice for ME.
There are several endorsements from well known figures eg Anil. Whitney Dafoe, Jenny Jaques.

Would you be willing to endorse @Jonathan Edwards if we could find out more?

The wider the group involved, the more traction we might get. I wonder who the case owner is.

edit: donations now at £3055. Some interesting names. Now £3280
 
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Jonathan Edwards said:
I still cannot access the site. I would not advise donating without more details.

The one thing I can do is provide my services free to advise on what the clinical realities are. I would be very happy to offer advice to those ivolved but so far I have no way to communicate.
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Thank you, @Jonathan Edwards - it would be fantastic to have a legal campaign for this guided by your expert knowledge. I can access the site but can see no way to identify the people who have created the page. Their lawyers are identified, however - they are Rook Irwin Sweeney LLP. So it may be that the best way to offer your help is to contact the campaigners via these lawyers, who have a contact page here.

Alternatively, there's a long piece in support on the site by Sarah Boothby, Maeve Boothby O’Neill's mother, who says, 'As Maeve’s mother, I unreservedly endorse the initiative being taken by Justice for ME.' So she may also be a route for contact if you already know her.

[Edited to add: Sarah Boothby's piece is part of the description of the project so the campaigners must have been in direct touch with her to get it.]
 
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Judging from the examples given in the fundraising document they are focused particularly on very severe ME/CFS, including those with feeding problems and on hospital care.

I think it's an important aspect of ME/CFS care in the UK that is most urgent to be addressed by government and that they failed to raise to urgent in the delivery plan, and the NHS failed, as far as I know, to respond with any urgent or appropriate action following the coroners' report on Maeve Boothby O'Neil.

I have no idea whether this particular campaign and its planned legal action is well run, but I support its intentions.
 
I could not understand exactly what they wanted. I personally want severe ME (housebound or worse) to Get the same support & medical care that other advanced & / or serious conditions do. I also think allowing the medical profession to essentially opt out of caring by leaving it to "ten minutes" /"I have no training or interest" GPs, fuels the research disinterest , especially for the severely affected.

Whilst I think meeting very severe needs should be the priority, I don’t support a framework where it's accepted that it is “GP/or OT management only for the mild-moderate”, severe ME is redefined as bedbound (as per the NHS e module) & the nhs is *only* targeted re. the small % of the most severe getting medical input or fuller support in critical circumstances, to stiffen up the vague commitment in the DHSC delivery plan.
 
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In this forum we have the makings of consensus on the pre-requisite specification for provisions required, to be inclusive for a seamless "experience", as one may get a bit better or a lot worse.

So I think each patient needs one clinic to monitor their case throughout. If necessary then til death do us part.

I would trust Sarah Boothby and all the other parents to agree, and agree we need consensus.

But monitoring, engagement, feedback and adjustments need doing in the old-fashioned way.

In real-time. Not in the virtual reality inhabited by demented, dementing staff, who got lost in it

Not by algorithms. Not by the market-planned A.I to chat, answer, read and summarise, when all clinicians are timed out, systematically. Not by laborious apps either. So I must have the choice.
Cinders66 said:
I could not understand exactly what they wanted.

I personally want severe ME (housebound or worse) to Get the same support & medical care that other advanced & / or serious conditions do.

I also think allowing the medical profession to essentially opt out of caring by leaving it to "ten minutes" /"I have no training or interest" GPs, fuels the research disinterest , especially for the severely affected.

Whilst I think meeting very severe needs should be the priority,

I don’t support a framework where it's accepted that:

it is “GP/or OT management only
for the mild-moderate”,

severe ME is redefined as bedbound (as per the NHS e module) &

the nhs is *only* targeted re. the small % of the most severe getting medical input or fuller support in critical circumstances,

to stiffen up the vague commitment in the DHSC delivery plan.
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Ah so, as I thought, some NHS e-module is being mistaken for an advisory on the Guideline; in which case NICE ordained that it must be provided by secondary (hospital) level doctors. Was it?

I also bolded the impact on research because its hard to get my head around that observation and retain it. On a 5th read, I twigged that this also relates to the secondary level criteria.

Will this justice fund-raiser have secondary level doctors on board, to advise on the Guideline and help model its proposed implementation, so the judiciary can make a duly informed choice?

Give them the best evidence there is. Paul Chrisp (NICE) said it completely resolved a disagreable anomaly; in the most rigorous procedure we have for processing the evidence; done & dusted.

I gather that the outsourced CIinical Knowledge Summary does not altgether make the grade. So can plaintiffs, lawyers, expert witness and judiciary return to the source. Then return it to us?

Cinders66 said:
I could not understand exactly what they wanted.

I personally want severe ME (housebound or worse) to Get the same support & medical care that other advanced & / or serious conditions do.

I also think allowing the medical profession to essentially opt out of caring by leaving it to "ten minutes" /"I have no training or interest" GPs, fuels the research disinterest , especially for the severely affected.

Whilst I think meeting very severe needs should be the priority,

I don’t support a framework where it's accepted that:

it is “GP/or OT management only
for the mild-moderate”,

severe ME is redefined as bedbound (as per the NHS e module) &

the nhs is *only* targeted re. the small % of the most severe getting medical input or fuller support in critical circumstances,

to stiffen up the vague commitment in the DHSC delivery plan.
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Amount raised £6165 of £15,000 stretch target from 166 pledges


Case Update no 1 from #Justicefor ME

Wow! What an incredibly active weekend!!​

#Justice4ME is in only day three of its first call out for funding and has already raised 97% of the £6,000 target. These funds are essential to retaining our solicitors, who are not allowed to give advice without first being retained. Stats below.

Bottomless thanks to all those living with ME who have donated so generously and unreservedly from their extremely limited resources!! We are all hoping you will soon recover from the PEM (post exertional malaise) that is likely to have been stirred from a weekend of emotional exertion from participating.

All those donating who do not live with ME, please take a moment to read the comments. They describe as well as anything else why this action is necessary.


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Further information from Case report 1.

I shall be off the forum to rest completely for a while to recover from PEM. Hospital appointment at end of week. So I'll be unable to keep close eye on campaign. Can another member report any developments?
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