GP

  • | | | | |

    #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

  • | | |

    Professor Deepa Mann-Kler Director & Producer – Introduces the Discover M.E. Film

    BySteve

    Professor Deepa Mann-Kler Director & Producer introduces an award winning 6-minute, animated video that shares the voices of, and the insights into, the lives of 6 people living with Myalgic Encephalomyelitis in Northern Ireland. It places the viewer into real life scenarios that are normally never seen, heard or experienced. This narrows the gap between an individual’s preconceived beliefs and real personal experience. It can be viewed via a 3D, virtual reality headset for maximum experience (directly arranged by contacting the Charity), or as a normal 2D video via this YouTube link.

    Produced between Hope 4 ME & Fibro Northern Ireland, Silverink, and Neon. To date, it has won 4 international short film awards.

    Discover M.E. Film (no Introduction)

    To just watch the video without the introduction, please click below:

  • | | | |

    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

  • |

    Reflect, Collaborate and Listen

    ByAdmin

    ‘Reflect, Collaborate and Listen’ looks at why doctors don’t listen and the urgent need to rebalance the power dynamic in the patient – doctor relationship.

    Dr Rageshri Dhairyawan

    See the full article here in the Lancet – It is free to download (after registration, which is very straightforward).

  • |

    Why Doctors don’t Reflect, collaborate, and listen

    ByAdmin

    Dr Rageshri Dhairyawan writes “Reflect, Collaborate and Listen” which examines why doctors don’t listen, and the urgent need to rebalance the power dynamic in the patient – doctor relationship.”

    See the full article here in the Lancet – It is free to download (after registration, which is quite easy).

    The abstract continues: “Anxieties about malingering or feigned illness are at least a thousand years old in the West”, argued public health ethicist Daniel S Goldberg in a paper on the history of “malingerers”. He gives several examples including Arnau de Vilanova who in the 13th century was so worried that patients were fooling him, by passing off other people’s urine samples as their own, that he wrote 19 pieces of advice for other physicians to spot the fraudulent. In this way, Goldberg shows how physicians have doubted the testimonies of patients for a very long time.