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#Justice4ME Campaign Update No. 3
Quote from Sarah Boothby on Social Media
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 October at 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 everyone you 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.
#JusticeforME
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Justice For ME Campaign Launched
Please share – A very important campaign was launched on the evening of 29th August 2025 to help provide legal support for targeting improvements in medical care, thereby benefiting everyone with ME or Long Covid induced illness.
“Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness”
Find history, campaign details information and endorsements available on on the Crowd Justice site via the following link: justice4me.uk
Update 31/08/2025 – On a public facing Facebook comment, where some were discussing the nature of the campaign and potential legal cases, in answer to a question raised by an ME patient, Sarah Boothby (one of the endorsers of the campaign and mother of Maeve Boothby O’Neill, who tragically died from ME in October 2021 aged only 27) shared her understanding of what she believes #JusticeForME is intending (my bold, for emphasis, below):
“It is a case against the government, for neglecting to deliver a specialist health service in its Final Delivery Plan for ME/cfs.
Without Consultant led NHS specialist services everyone with #ME in England is denied access to the disability rights other medical conditions are given as granted and, if/when they need hospital treatment, no provision is made for the specialist nursing care demanded by the nature of the illness (hypersensitivies to all sensory stimuli that increase with #PEM). This automatically triggers the worst PEM ever – adding years of the most horrible symptoms to an already horrible illness. The campaign is to stop this neglect.”
As of this evening (31/08/2025), the campaign has astonishingly already received over £5,000 in pledges of first target of £6,000 within 48 hours of launch, with 28 days still remaining.
Full details and donations via the link here, taking you to Crowd Justice: justice4me.uk
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All 72 Liberal Democrat MPs back resourcing of ME/CFS Delivery Plan
Tessa Munt, officer of the APPG for ME, announced that 100% Liberal Democrat MPs have now signed a letter urging Wes Streeting and Ashley Dalton to back the ME/CFS Delivery Plan with the funding required to properly implement it.
Tessa Munt – “I’m so delighted that all 72 LibDem MPs signed this letter to @wesstreeting @AshleyDalton_MP asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay”
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Trial By Error: A 2015 Letter from the Countess of Mar to Suzanne O’Sullivan
Commentary TBA. Full article linked below:
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Petition – Protect Disabled people who cannot work from planned cuts to benefits
Note: Content below copied from Petition.parliament.uk
https://petition.parliament.uk/petitions/721547
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Petition – STOP the new 4 point PIP rule -Change.org
Note: Content below copied from Change.org
https://www.change.org/p/stop-the-new-4-point-pip-rule
The Issue
I am a chronically ill Independent PIP Consultant with the goal of providing the kind of support and awareness I WISH was available when I first became chronically ill (I was 29 years old, I am now 47).
I am entitled to and do claim PIP myself; this funding changed my life. The Government’s recent decision to introduce a new rule is threatening this lifeline for those who have fought through the invasive, degrading assessment process and finally won. They/we depend on this support.
They are saying you now need a MINIMUM score of 4 points in at least ONE daily living activity to keep/get the daily living funding from 2026 (new claims and on reviews). This change WILL deny access to the daily living component to those who are genuinely in need but cannot score the 4 points in a single activity. We know through our experiences the way the scores are allocated rarely match our daily life, many should have had 4 points but do not get this result.
The Government must reconsider this change. We MUST protect the most vulnerable among us and ensure their dignity through compassionate support. Therefore, we need to urge our Government to reassess this new rule.
We need 100,000 signatures and then this (legally) must be discussed in parliament. I am not trying to be our spokesperson but I am trying to unite us. We need to raise our voices so loudly that activists and specialists can continue fighting on our behalf. This is how we help ourselves and those that cannot fight for themselves.
Remember, YOU, your family, friends, neighbours and co-workers CAN all sign this petition
It is NOT acceptable to target a vulnerable community WE MUST SPEAK UP and be HEARD
Please, sign this petition now, please sign for the chronically ill, sign for fairness, and sign for justice.
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Petition – Build your response to the government’s consultation on benefits – Sense
Note: Content below copied from action.sense.org.uk
https://action.sense.org.uk/page/169317
The government is proposing making changes to the benefits system. This tool helps you write a response to their consultation. It is designed for disabled people and their families.
The government’s changes are complicated, so we’ve broken things down into four main proposals. Here’s how it works:
- We’ll ask a question or two about each proposal and suggest some things to think about in your answer. You don’t have to respond to every question.
- We’ll compile all your answers into one response.
- Copy this response into an email to send to the Department of Work and Pensions.
This should take about 20 minutes to complete. While that might seem like a lot of time, it’s much more effective to take the time to write a consultation response that is tailored to you.
Continue to complete the form here: https://action.sense.org.uk/page/169317