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

“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.“

As a long timer, this to me looks an extremely optimistic and even naive take. Referring to the decision to omit severe ME from the plan entirely & put the development of very severe care - whether that’s full care or access to nutrition support only - as something that needs more time & i think depending on political will/ money, as “a snag” when in my view it’s part of a consistent drive to continue to largely manage & frame m.e as a fatigue disorder, on the cheap without medical input or the support comparable neurological conditions get. Edited to add All that requires money. And the core message from the DHSC plan was they don’t want to put any money into that.

The context is important and the fact that even in recent history, nhs England did nothing to review m.e services or implement marginal improvements via NICE 21, & all the defensive replies to the coroners report revealing the establishment mindset, don’t paint them in a pretty or well meaning light.
 
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I still feel confused. The nature of the required changes to services for pwme seems to have altered

The description in the early statement said
Binkie4 said:
“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.”
Click to expand...

Now from update 3
Binkie4 said:
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.
Click to expand...

These are very different. I agree with @Cinders that minimal changes in the light of the history of services for pwme are unlikely to be well meaning.

edit: I can see the need not to reveal a full hand all at once but it is frustrating and confusing especially when we don't know who is behind the campaign.

edit: SEE POST #43 and #44 immediately following
 
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I looked up more about the current step " letter before claim". I don't know if it is a required step in the proposed ' Justice for ME' campaign but there are other key purposes listed in the AI overview below eg create a record.

AI Overview


A letter before claim (LBC), also known as a letter before action or pre-action letter, is a formal document sent before starting court proceedings to inform a potential defendant about a legal dispute. Its purpose is to encourage settlement, promote transparency, and encourage alternative dispute resolution, often by outlining the facts, the legal basis for the claim, the remedy sought, and a deadline for a response. It is a required step under pre-action protocols in many civil cases, including debt collection and breach of contract disputes.

Key purposes of a Letter Before Claim:
    • Encourage Settlement:
      It provides the recipient with a formal opportunity to settle the dispute without the need for costly and time-consuming court action.
    • Promote Transparency:
      The letter details the basis of the claim, ensuring that both parties understand the facts and legal grounds involved.
    • Facilitate Alternative Dispute Resolution (ADR):
      It can encourage parties to consider ADR methods, such as mediation or arbitration, to find a resolution.
    • Meet Legal Requirements:
      In England, sending an LBC is a core requirement of pre-action conduct and protocols, demonstrating compliance with legal obligations before a claim is issued.
    • Create a Record:
      The LBC serves as an important record of communication between the parties, which can be valuable if court proceedings do proceed.
Essential elements of a Letter Before Claim:
    • Identification of Parties:
      Clear identification of the claimant (the sender) and the defendant (the recipient).
    • Factual Basis of the Claim:
      A concise explanation of the events and facts that form the basis of the dispute.
    • Legal Grounds:
      A reference to the relevant laws, contracts, or legal duties that have allegedly been breached.
    • Remedy Sought:
      A clear statement of what the claimant is asking for, such as a specific sum of money or other action.
    • Deadline for Response:
      A specified timeframe for the defendant to reply to the letter.
    • Consequences of Inaction:
      A statement outlining the potential consequences if the defendant fails to respond or settle the matter.
 
As a non lawyer, I wonder if this procedure is being followed as a strategy to show that all options are being considered to resolve the dispute without court action, for example

"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 would explain the seeming change in aims of the campaign referred to in post #42, and the sense that Judicial Review of Delivery Plan may be where we are heading.
 
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Cinders66 said:
“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.“

As a long timer, this to me looks an extremely optimistic and even naive take. Referring to the decision to omit severe ME from the plan entirely & put the development of very severe care - whether that’s full care or access to nutrition support only - as something that needs more time & i think depending on political will/ money, as “a snag” when in my view it’s part of a consistent drive to continue to largely manage & frame m.e as a fatigue disorder, on the cheap without medical input or the support comparable neurological conditions get. Edited to add All that requires money. And the core message from the DHSC plan was they don’t want to put any money into that.

The context is important and the fact that even in recent history, nhs England did nothing to review m.e services or implement marginal improvements via NICE 21, & all the defensive replies to the coroners report revealing the establishment mindset, don’t paint them in a pretty or well meaning light.
Click to expand...
I think that what’s going on legally means that language will be very moderate. This isn’t being written as a call to activism, it’s a legal challenge. They clearly want the DHSC to acquiesce rather than go through a judicial review. I can understand their approach.
Personally I’m very tempted to plonk myself outside the Labour conference with a sign saying “why doesn’t the NHS have any beds for ME” when Wes Streeting is about.
 
Cinders66 said:
“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.“

As a long timer, this to me looks an extremely optimistic and even naive take. Referring to the decision to omit severe ME from the plan entirely & put the development of very severe care - whether that’s full care or access to nutrition support only - as something that needs more time & i think depending on political will/ money, as “a snag” when in my view it’s part of a consistent drive to continue to largely manage & frame m.e as a fatigue disorder, on the cheap without medical input or the support comparable neurological conditions get. Edited to add All that requires money. And the core message from the DHSC plan was they don’t want to put any money into that.

The context is important and the fact that even in recent history, nhs England did nothing to review m.e services or implement marginal improvements via NICE 21, & all the defensive replies to the coroners report revealing the establishment mindset, don’t paint them in a pretty or well meaning light.
Click to expand...
Indeed. At some point early on someone and then many signed off on what many who were in the know were saying which was that it needed to start with, and then grow from, something that accommodated the most severe and therefore understood ME/CFS because it finally was looking at the spectrum by seeing what happened when those less severe were eg pushed through GET and not given support like adjustments and medical care for other conditions eg the consequences of pretending 'it is just fatigue'.

Because what the clinicians helping the mild and moderate needed was to understand the illness, what it became and how people ended up more severe in order to be able to make sure they significantly changed their knowledge and current approach by being informed by that

As soon as anyone said there was any other starting point than beginning with very severe and severe in order that it was being treated as ME/CFS and a medical condition then it was being hoodwinked into the usual 'we will get to it later in the never, never'. And to treat those milder as if there was never any risk of it getting worse, whatever they did etc.

I feel frustrated that pwme are not being informed when this decision was taken or people were nudged into this order of tackling subjects by whoever was in charge (and ergo they were making the decision), and by who. Because it is very relevant to know this as it was where history repeated itself and is a mistake that keeps being made.

I can see all the nonsense cliche excuses, from having worked in other workplaces with fallacies like 'not start with the hard stuff' or 'what we have most data on' instead of 'what are the data gaps we need to fill the most' and 'what are the most important learning areas' and 'what is the part most urgenly in need of developing and getting right, that will inform the other areas'. Basically the 'too hard box' excuse. But of course they have nothing of worth with the old clinics anyway so... I'd like to know what the assumptions were that sent things off-kilter so these lessons can be avoided from repeating.
 
I have debated whether or not I should post this but, given some earlier comments in this thread, it seems appropriate that I add my recent experience here.

I became aware of the JusticeforME group during August. I was invited to become more involved at the beginning of September. I was not involved from the beginning. If I had been, I would have advised against proceeding with the course of action described on their website.

After some reflection, I decided to see if I could contribute anything useful to the group (I am a lawyer, for those who don't know me). However, the group's organisation and constitution were opaque and my concerns increased over the following few weeks. I was told my input was welcome but, for the most part, events suggested otherwise, despite my attempts to be supportive, as far as possible.

I learnt a certain amount about what was happening but I can't say I knew everything by a long stretch. I would like to be more specific but confidentiality was requested and I have to respect that - although there does seem to be some confusion within the group about the difference between confidentiality and secrecy, as sometimes happens.

Two days ago (7 October 2025), I finally withdrew from any involvement from the group. My concerns continued to increase and were not being addressed.

I'm sure this group was created with the best of intentions but that must be followed up with appropriate leadership and governance. As we know only too well in the ME community, sometimes this is lacking.

Everyone must make their own decision about whether or not to support this cause. It may be that it achieves great things and I wish the group members well. However, my limited experience with it was not entirely reassuring.
 
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