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Today in Focus – Living with Long Covid when the world has moved on

Helen Pidd discusses what life is like during and after Long Covid. Emma Gore-Lloyd shares her continuing journey in search of a cure for her partner James, whilst Georgina tells her story of how she got better.

Podcast from the Guardian article: https://www.theguardian.com/news/audio/2025/mar/25/inside-the-mystery-of-long-covid-recovery-podcast

You can also listen directly below:

YouTube links are provided here when available as well as Spotify, as they don’t currently require a subscription to watch / listen. Listening via Spotify makes it easier to listen whilst doing something else on your browser or phone.

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  • #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

  • | | | |

    Bateman Horne Clinical Care Guide for ME/CFS, Long COVID & Infection-Associated Chronic Conditions

    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

    Direct link to download the guide PDF

  • The Greatest Medical Scandal

    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.”

  • | | | | |

    #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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