Very Severe ME

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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

  • Will I keep getting my Personal Independence Payments?

    BySteve

    I was reminded today of this moving, beautiful and anonymously written article by Maeve Boothby O’Neill at the age of 21, who was struggling with severe ME, just four years before she died from the condition. I would be upset if the content became lost, so have taken the liberty of duplicating it below.

    Eight years later, as of 6th June 2025 it is still present on the website here, where you can also see comments from others about the post:

    https://www.lrb.co.uk/blog/2017/june/will-i-keep-getting-my-personal-independence-payments

    2 June 2017

    Will I keep getting my Personal Independence Payments?

    Anonymous

    I’m angry. I’m so angry it woke me up this morning. And I’m angry about being angry because I can’t channel the anger into anything productive because I can’t do anything productive. I am powerless to stop being ill and I am powerless to stop being angry.

    Being disabled is infuriating. Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do. I have been sick for almost half my life, and housebound for the last four years. But that’s not the reason I’m angry.

    At some point in the near future an agent from Atos will be reviewing ‘how [my] health condition or disability affects [my] daily life’ so that a ‘decision-maker’ at the Department for Work and Pensions can say whether or not I’m still entitled to Personal Independence Payments. It’s not enough for my doctors to write letters saying that I have a chronic condition and there’s been no meaningful change since the time of my claim 28 months ago. The date of the appointment has been changed four times in four weeks, sometimes with less than seven days’ notice, presumably because disabled people don’t have lives of their own. Exactly what kind of ‘independence’ did they have in mind?

    I would like to ask the Atos agent if s/he likes her/his job, whether s/he does anything else besides interrogate disabled people, and why s/he thinks a 21-year-old would lie about not having been well enough to see anyone but their care workers, health professionals and mother since 2015, but I won’t. The DWP’s letters are aggressive, in an understated way, with the result that I don’t feel secure asking the Atos agent questions or even putting my name to this piece.

    Most conventions and laws and declarations on human rights agree that I have a right to life, and a right to be as healthy as I’m biologically capable of being. Supposedly, I also have a right to keep my life private. These rights are qualified in this country by a mean and punitive government that would prefer it if unemployed people and displaced people and disabled people didn’t exist – supposedly with the mandate of public opinion. I’m not ‘sleeping off a life on benefits’ (if only: being disabled is tiring but also physically painful, and it’s hard to sleep when you’re in pain) but perhaps my Tory-voting neighbours think that I’m stealing from them. They earn enough to pay tax and I’m sick enough to claim benefits. Actually, welfare. It isn’t a perk. Welfare payments are what you claim to keep you housed, warm, clothed, fed, safe, alive.

    PIP is meant to compensate disabled people for the added financial cost of living in a world that doesn’t make room for them. If I ever get to see the Atos agent, s/he will ask me several pages of questions about how my life is affected. The Atos agent will come to my home because I’m too unwell to go to the private health centre s/he uses – that isn’t sufficient evidence of how I’m affected, because I could be faking. To access my right to this welfare payment I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful. Having abased myself, I will, I hope, continue to receive the playing-field-levelling amount of £76.90 per week.

    https://www.lrb.co.uk/blog/2017/june/will-i-keep-getting-my-personal-independence-payments

    Anonymous-_-Will-I-keep-getting-my-Personal-Independence-Payments_
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    Bateman Horne Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions

    BySteve

    Released as version 1.0 today, a new and outstandingly comprehensive reference guide for both Doctors and Health Care Workers. The reference guide we needed 20 years ago! This certainly feels like an essential training reference:

    “A Roadmap to Better Care:
    Clinical Care Guide for ME/CFS, Long COVID &
    Infection-Associated Chronic Conditions

    Developed by the OMF-supported Medical Education Resource Center (MERC) at Bateman Horne Center, this resource offers a practical path forward—one grounded in clinical expertise, research, and the lived experience of patients”

    https://batemanhornecenter.org/clinical_roadmap

    Clinical-Care-Guide-First-Edition-2025-1

    Direct link to download the guide PDF