• Welcome to ME Hub

    ByAdmin

    Helping People with ME and similar conditions (Fibromyalgia, Long Covid) find everything they need to help understand and manage these debilitating conditions

    Take a browse through the menus, or use the simple search facility

  • | | | | |

    #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:

  • |

    Justice For ME Campaign Launched

    BySteve

    Please share – A very important campaign was launched on the evening of 29th August 2025 to help provide legal support for targeting improvements in medical care, thereby benefiting everyone with ME or Long Covid induced illness.

    “Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness”

    Find history, campaign details information and endorsements available on on the Crowd Justice site via the following link: justice4me.uk

    Update 31/08/2025 – On a public facing Facebook comment, where some were discussing the nature of the campaign and potential legal cases, in answer to a question raised by an ME patient, Sarah Boothby (one of the endorsers of the campaign and mother of Maeve Boothby O’Neill, who tragically died from ME in October 2021 aged only 27) shared her understanding of what she believes #JusticeForME is intending (my bold, for emphasis, below):

    “It is a case against the government, for neglecting to deliver a specialist health service in its Final Delivery Plan for ME/cfs.

    Without Consultant led NHS specialist services everyone with #ME in England is denied access to the disability rights other medical conditions are given as granted and, if/when they need hospital treatment, no provision is made for the specialist nursing care demanded by the nature of the illness (hypersensitivies to all sensory stimuli that increase with #PEM). This automatically triggers the worst PEM ever – adding years of the most horrible symptoms to an already horrible illness. The campaign is to stop this neglect.”

    As of this evening (31/08/2025), the campaign has astonishingly already received over £5,000 in pledges of first target of £6,000 within 48 hours of launch, with 28 days still remaining.

    Full details and donations via the link here, taking you to Crowd Justice: justice4me.uk

  • |

    Vagus Nerve Stimulation – Nurosym, Gammacore, Pulsetto and Sensate reviewed and compared

    BySteve

    A comprehensive overview of four VNS devices (though one doesn’t actually perform Vagus Nerve stimulation at all) by Health Scientific Institute.

    These devices have become popular, but they can also be very expensive, once monthly subscriptions are considered.

    People with ME and Long Covid should also take care to choose a device with a variable stimulation level, else stimulation given can cause unwanted side effects or unexpected increase of symptoms.

    Scientific Comparison of the 4 Vagus Nerve Stimulators – Nurosym, Gammacore, Pulsetto, Sensate

  • 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_
  • |

    First Update From Dianna (Physics Girl)

    BySteve

    Dianna Cowern, also known as “The Physics Girl” after her massively successful YouTube channel, wants people to know about the disease ME/CFS. In May 2025, Dianna Cowern updates us on her journey and recovery following a Covid infection in Autumn of 2023. Dianna reveals that she’s made progress and beginning to be able to enjoy some limited activities. Whilst she is recovering, she parallels the continued severe suffering of her friend Tobias Schweikert who lives in Germany, reminding us that so much more needs to be done worldwide for those who continue to suffer, with no end in sight.

    Kyle (Dianna’s Husband): “It’s been over two years of being sick essentially approaching two years of like bed bound her quality of life is unimaginably low right now still she can’t get out of bed she can’t clean herself she can’t take a shower she can’t…”

    Derek Muller (Veritasium): “I think the thing that’s shocking to me as well is like this lack of ability to have anything really to occupy your mind right like it’s not like she can’t really read or audio books or movies.”

  • | |

    Sheffield ME / Physios for ME Online Talk – 20th May 2025 at 14:15

    BySteve

    Between 14:15 and 15:15, Dr Michelle Bull who is a Chartered Physiotherapist and NHS Transformation Manager with extensive experience supporting people with ME and Long Covid will be speaking on the subject: “Using national and international best practice to improve services locally with special mention of physiotherapy“

    Michelle is co-founder of Physios for ME and co-author of A Physiotherapist’s Guide to Understanding and Managing ME/CFS. Michelle holds a Doctorate in health research and is actively involved in research exploring treatment options for this patient group. She currently leads the Frailty Academy at Royal Surrey NHS Foundation Trust and is passionate about improving care through evidence-based practice, education, and system transformation.

    A recording of this excellent session is now available below: