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Justice For ME Campaign Launched

BySteve

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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    Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    BySteve

    Extracts from full Mayo Clinic Article Originally published in October 2023. Selected text and images only included below see full article link at end of page

    Extract – Figure 2 shows typical PEM presentations

    Publication / Authors

    Concise review for clinicians Volume 98, Issue 10, p1544-1551, October 2023: Stephanie L. Grach, MD, Jaime Seltzer, MS, Tony Y. Chon, MD, Ravindra Ganesh, MD, MBBS

    Extract – Abstract

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease
    often preceded by infection. There has been increased interest in ME/CFS recently
    because of its significant overlap with the post-COVID syndrome (long COVID or post-acute
    sequelae of COVID), with several studies estimating that half of patients with post-COVID
    syndrome fulfill ME/CFS criteria. Our concise review describes a generalist approach to
    ME/CFS, including diagnosis, evaluation, and management strategies.
    (c) 2023 THE AUTHORS. Published by Elsevier Inc on behalf of Mayo Foundation for Medical Education and Research. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/) n Mayo Clin Proc. 2023;98(10):1544-1551

    Read More “Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
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    #Justice4ME Campaign Update No. 3

    BySteve

    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

  • |

    Doctors As Patients

    BySteve

    YouTube Movie has been released exposing the experience of five doctors living with ME, Long Covid, Lyme Disease and other related conditions. The video is not primarily narrated in English, but has English Subtitles.

    “Five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide! They speak candidly about their experiences with illness, what they were taught (or not taught) in medical school, and how that shaped their own treatment decisions—sometimes even leading to harm. They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare. It’s raw, honest, and incredibly insightful—for medical professionals, researchers, politicians, and patients alike.”

  • | |

    All 72 Liberal Democrat MPs back resourcing of ME/CFS Delivery Plan

    BySteve

    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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