| | |

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:

Similar Posts

  • | | | |

    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

  • |

    The Latest Research on Mitochondrial Dysfunction in Long Covid & ME/CFS | With Prof. Klaus Wirth

    BySteve

    Gez Medinger talks with Prof. Klaus Wirth about his research into Mitochondrial Dysfunction, particularly in relation to intramuscular sodium levels. He reassures us that intramuscular sodium levels are not influenced by additional salt intake typically used to increase blood volume, for those suffering from orthostatic intolerance or POTS.

    Part 2 looks at use of a potential new drug, referred to as MDC002:

  • Norwegian study shows – ME patients rarely return to work

    BySteve

    What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?

    A Norwegian study has shown that patients diagnosed with ME typically decline permanently in terms of their earning capabilities, as illustrated below by the drop in their average wage income over a period starting 9 years before diagnosis in 2016, until 9 years later in 2025. Less than 6% maintained an income of at least median wages after diagnosis.

    Nine years before diagnosis, the men earned slightly less than their controls. Wages in the men’s groups then started falling sharply towards Y0 and continued falling in the first year after (Y1). They then fell more gradually towards Y9. The women’s average wages 9 years before diagnosis were slightly below their female controls. The wages fell more sharply between 2 years before and 1 year after diagnosis, where they stabilized at a low level.

    Fig. 3. Comparing group average wages for men and women 18–67 years old, diagnosed with G93.3, from 9 years before until 9 years after diagnosis (N = 6249) using 2009–2018 data to simulate values for the control group (N = 2739).

    Read More “Norwegian study shows – ME patients rarely return to work”

  • The Greatest Medical Scandal

    BySteve

    Excerpts from this incredibly accurate and revealing article by George Monbiot, originally published 12 March 2024

    https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services

    ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

    George Monbiot

    George Monbiot

    From harmful ‘therapies’ to social services referrals, the notion that this illness is psychosomatic is having devastating effects

    You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

    George Monbiot

    “It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness”

    “Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.”

    “ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviour.”

  • |

    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.”

  • | | | | |

    #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

Leave a Reply