Delivery Plan

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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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    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”

  • #ThereForME publishes first UK Ecosystem report for ME and Long Covid

    The #ThereForME team have published the first version of their UK Ecosystem Report for ME and Long Covid, created in collaboration with CrunchME. This report maps out key stakeholders and initiatives across the UK, aiming to inform advocacy efforts, policymakers, and potential funders of research and care.

    The report tracks active and future ME/CFS research projects within the UK. Following each overview slide like the one below, are detailed additional slides showing the technical nature of the work and interventions being trialled.

    Following slides go in to show research projects for Long Covid within the UK, Clinics and Clinicians, Biotech resource, and forthcoming conferences.

    The full UK ecosystem report for ME and Long Covid can be found here

    Everything about the #TherForME campaign can be found on the TherForME website

  • #ThereForME Launches “Fund The Plan” Appeal

    Today, #ThereForME launched a campaign to strike back at the Government asking them to #FundThePlan.

    People with ME were invited to produce a short video appealing to Wes Streeting (Secretary of State for Health ) and Ashley Dalton (recently appointed Under-Secretary of State / Department of Health and Social Care)to allocate new funding to the long awaited UK Delivery Plan for ME

    Read More “#ThereForME Launches “Fund The Plan” Appeal”