This week, we’re celebrating the amazing work that has been done in recent weeks by other researchers, advocates and organisations.

Research ramping up

We’ve had a feeling recently that research has been picking up. As we highlighted in our last update, this has been largely driven by charities and individual researchers, rather than ambitious government funding. Nonetheless, it’s exciting to feel a sense of momentum following the release of groundbreaking findings from DecodeME last summer.

In late February, Action for ME, the Schmidt Initiative for Long COVID, and the Complex Disorders Alliance (CODA) announced the launch of Sequence ME & Long Covid. The study will be the world’s largest long-read, whole-genome study of any disease, building on DecodeME and with $250,000 already secured for its first phase. Just days later, Solve M.E. announced their latest round of ME/CFS Catalyst Awards, funding two pioneering studies led respectively by Professor Carmen Scheibenbogen and Drs. Liisa Selin, Roshan Kumar and Ayano Kohlgruber. The studies aim to explore new treatment options, and uncover key biological drivers of ME and Long Covid.

It’s not us just noticing how research has picked up. BBC Radio 4’s Inside Health got in on the action, airing a programme which asked the seemingly eternal question: Is the tide turning on ME research? A couple of weeks later, BBC News also covered a symposium convened at Winchester Cathedral by the ME/CFS Alliance, bringing together leading scientists and researchers into the causes of ME/CFS, Long Covid and post infectious disease to discuss the way forward. #ThereForME volunteer Jonah Weisz was present, alongside our ambassador Dr Binita Kane.

Marking Long Covid awareness day

Over the weekend, we cheered on advocates and organisations getting stuck in for Long Covid Awareness Day. Ahead of the day itself, advocate (and #ThereForME Advent calendar star) Fran Haddock spoke to BBC Look North about how people are, in Fran’s hardhitting words ‘still getting sick long-term, like me - with no treatment or cure and not knowing what my future holds’.

Long Covid Kids were also active in the run-up to Long Covid Awareness Day, running a campaign through which over 1,000 people across the UK wrote to their elected representatives, calling for greater recognition of Long Covid in children and young people. Amplifying the campaign’s calls, last Friday a special ITV News report focused on the heartbreaking stories of families whose lives had been ‘flipped around’ by Long Covid.

Meanwhile, our friends at Long Covid Advocacy marked Long Covid Awareness day with two gifts for the community: a template medical binder and an interview with Long Covid leading light Professor David Putrino. Thank you, Long Covid Advocacy!

We’ll leave you with images from #LitForLongCovid, with images spreading across social media on Sunday of landmarks from around the world lit up in teal for Long Covid awareness. From Cardiff Castle to Whitby Town Hall, via Niagara Falls, the photos were a poignant reminder of the global long-term impact of the pandemic six years on, too often hidden from sight.

#ThereForME is taking a break

With capacity limited - and, a long-awaited and much-needed HQ holiday on the cards - we’ll be taking a break from our Substack until late April. We’ll keep you posted when we’re back. And, importantly, we’re looking to you all to help us keep the pressure up while we’re on a short hiatus (in case you were looking for some tips, here’s #ThereForMP Tessa’s two cents on how to do so).

We’ll see you next time.

I want to start by thanking all in the ME community who have encouraged me in my fight for proper provision for the estimated 1.35 million people living with ME nationwide. Whether you have raised the need for appropriate care, investment in research, fair treatment in the welfare system, or acknowledgement of the challenges young people with ME face, I appreciate all your messages and I’m sorry that I don’t always manage to provide a direct response.

I’m grateful to #ThereForME for the invitation to share some thoughts with you. In the 19 months since I took up my seat in Parliament, and since #ThereForME launched, we’ve repeatedly challenged the desperate situation facing those living with ME. Sadly, despite this, there has been too little change.

There must be change for ME

When I stood for election as MP, it was with a real sense that there were still so many issues facing people in my constituency where I could make a difference. ME is one of those and I was up for taking this on. I have heard from people in so many desperate situations – often caused by systemic failings. It’s as if there’s a collective inability across the board to appreciate and respond to the needs of those with ME. This cannot continue.

I wrote at Christmas that the decades-long neglect of people with ME is a great injustice. I’m still reeling at the numbers: best estimates are that 1.35 million in the UK live with ME or ME-like symptoms. Add in one or two family members or close friends who are affected by each situation and upwards of four million people in our country are personally touched by ME. Sadly, too many people with ME are sick for years, even decades, unable to live their lives – lives that once held so much promise. A member of the online community, @Hopefullizzy, captured this so powerfully and courageously in her post on the 17th anniversary of becoming unwell. I continue to marvel at how Lizzy and many others share their stories to such effect.

We are all so much poorer for ME: for the loss of years of healthy life, the demands and stress of long-term care, and the wider impact on our communities, country and economy. And yet, a government that emphasises its focus on the economy so often doesn’t seem to have looked at how much ME is costing us. Alarmingly, a Minister recently quoted a cost of £3.3 billion per year. However, this calculation relates to 2014-5, and doesn’t take into account the increase in numbers post-COVID or the high economic inflation of the 2020s. Current estimates of the cost are upwards of £22 billion per year. Compared with other health conditions, that’s huge. Last year’s Final Delivery Plan didn’t even consider the cost.

We need action from government

As a recent #ThereForME post brought home, the government is not invested in ME. The Final Delivery Plan lacked ambition. Furthermore, since its launch there’s been paltry progress in the few areas where it offered something potentially substantive. On care, a suggested draft service specification for mild and moderate ME (which Integrated Care Boards will be encouraged to use) has only just been shared for consultation. There is still nothing for those with severe ME. On specialised services for those with very severe ME, the Department has merely ‘commenced discussions.’

How about investment in research that could bring diagnostics and treatment to improve people’s lives and enable them to contribute more to our society and economy? Two of the Plan’s three announcements recycled previous commitments, whilst the third was limited to research grants of up to £200,000 (which will take years to have an effect). More worryingly, the government line remains that bids for ME must be in open competition with those for other diseases, for which research may be well established. This is not a level playing field and special cases have been made for other conditions, For example, the £50m over five years awarded to motor neurone disease. Or the £50m call, just weeks before the Delivery Plan’s launch, to build capacity to research cardiovascular disease.

There is something deeply unjust in the way that ME is treated. It is not good for our country when such a significant group is continually marginalised. I will keep pushing – currently I’m arranging a face-to-face meeting with Sharon Hodgson, the incoming minister with responsibility for ME. A new Minister may bring new opportunities.

How you can help bring about change

We need your voice and your words to form a part of the collective story. Here are my thoughts and suggestions.

Don’t give up: For many in the ME community, long years of illness have been accompanied by equally long years of indifference, gaslighting and the abuse of treating ME as a psychological condition. If I can say one thing to you in the face of this, it is this: please don’t give up. Many campaigns against injustice have only seen change after decades, succeeding simply by continuing until the external context has changed in their favour.

Take encouragement – many Parliamentarians are supportive: Since the 2024 general election, many MPs have acted on ME.

• 71 Liberal Democrat colleagues co-signed my letter to Secretary of State for Health and Social Care Wes Streeting.

• Nearly 40 MPs have submitted Parliamentary Questions on ME, some on multiple occasions.

• 32 MPs have signed up to be part of the APPG on ME.

• 26 MPs attended the Westminster Hall Debate in November 2025.

This support comes from across parties and includes at least 30 Labour MPs. There are also numerous colleagues in the House of Lords who are keen to help.

Encourage your MP to be #ThereForME: We know that the government will change course under pressure. But for that to happen for people affected by ME, there need to be more MPs talking about their situations. It was striking how many MPs who attended the Westminster Hall Debate spoke of their constituents’ experiences. Many people affected by ME had written and urged their MPs to go. Here’s how you can help:

• If you can, follow the social media of the various ME organisations and respond to their prompts for MPs to attend events.

• If you are able to write, keep it succinct whilst relating to your experience. MPs receive hundreds of emails each day and even a compelling message may slip through. Don’t be afraid to try again.

• If possible, speak to your MP. I typically hold three face-to-face surgeries across my constituency each week and commit to accommodating those who can’t attend through online calls and visits. Not all MPs are accessible but ask for a meeting and request accommodations if you need them. If you do get an opportunity, prepare well: work out what you want to get across, and what you want from the MP. Don’t be shy to take a supporter. MPs are human beings but face many demands from all directions, so a brief and moving story will often be more effective than a long tale that will leave you exhausted.

• If the above feels beyond your energy limits, encourage someone close to you to reach out. Some of the people who have influenced me most about ME are parents who are desperate for their children’s lives to improve.

• If you have a local ME group, consider approaching your MP together. In my constituency, Somerset NHS Fatigue Service organised for me to meet with members of peer support groups. That was very helpful, especially as members supported each other in the process.

Time for change

Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side. The next election looks tight and many MPs fear losing their seats; the results of the Gorton and Denton by-election will exacerbate this. So, talk numbers to your MP. The sheer magnitude of people affected may well be a wake-up call, not to mention the wider impact on the economy and the health service. We have the numbers, the stories and the potential support in parliament to make the difference.

I will be part of that, but I need many more colleagues across the house fired up and ready to play their part too. See what you can do to encourage that. If possible, make your story, however hard it may be to share, part of the change.

Improving care for severe and very severe ME

As we highlighted when the Final Delivery Plan was published, it contains few concrete solutions. Severe ME was notably absent from plans to improve NHS provision, while the plan committed only to “explore” whether a specialised service should be prescribed for very severe ME.

Six months on, there’s still no clarity on how the NHS plans to handle those with severe or very severe ME, which remain absent from a new service specification in development for mild and moderate ME (an NHS England template which local integrated care boards will be encouraged to use when commissioning services). To date, this new specification has been the only significant activity in terms of service improvements.

Regarding very severe ME, the Department of Health and Social Care has “commenced discussions with NHS England on how best to take forward” the plan’s action to explore specialised service provision. While the Department claims to be “taking specific steps to ensure that patients with severe and very severe ME/CFS are not overlooked”, there has been little concrete action to reassure those affected that this is more than empty words.

This matters because, as raised by Tessa Munt MP (the new Chair of the APPG on ME), patients are suffering - and indeed, lives are at risk - while the Department prevaricates. Despite Ashley Dalton’s promise six months ago to make avoidable deaths of people with ME “never events”, in practice nothing has changed since, nor is there any sign that it is likely to. Tessa raised the case of Savannah Victora-May in London’s Queen Elizabeth Hospital, whose condition has deteriorated rapidly, leaving her unable to eat or drink. Savannah’s case was covered in The Times yesterday, which highlighted failures to follow the 2021 NICE Guideline and fears that Savannah may die without proper care.

While we’re an optimistic campaign which always tries to look for the rays of hope, we’re giving the plan’s impact in this area a shameful 0/5.

Boosting education and training

The public consultation which informed the Final Delivery Plan called for training on ME to be made mandatory. Unfortunately, this didn’t make it into the plan. Instead, a series of optional NHS e-learnings became the cornerstone of efforts to educate professionals across health and social care, combat misperceptions and address stigma.

We’ll start with the positive. Six months on, all of the planned e-learnings have been published, including a module on severe ME. The downside? A recent Freedom of Information request (kudos to @Lucibee.bsky.social) revealed that to date uptake has been, to put it mildly, disappointing. So far:

• 371 people, including 227 working in the NHS, have completed the introductory module (released in May 2024)

• 101 people, including 74 in the NHS, have completed a module focused on community care (released in January 2025)

• Less than 50 people, including 33 in the NHS, have completed the most recent module on severe ME (released in September 2025)

For the data crunchers out there, that’s 11 NHS workers per month completing the introductory e-learning and 7 per month undertaking training on severe ME. With close to 800,000 professionally qualified clinical staff and GPs in the NHS in England, that’s a mere 5,942 years until all of them have completed their introductory training on ME. To give you an idea of what better looks like: in its first year, the Oliver McGowan Mandatory Training on learning disability and autism was completed by close to three quarters of a million.

We’re giving this one a feeble 1/5.

Accelerating research

While the Final Delivery Plan acknowledged the need to expand ME research, it offered little concrete new funding. Key in moving this ambition forwards was a “showcase event” for post-acute infection conditions research, including ME and long COVID, which aimed to discuss recent evidence and “recognise the importance” of research in these areas.

The event was held last November, with a summary published recently. Presentations spanned Professors Altmann, Banerjee, Sivan and Ponting, who between them highlighted the challenges posed by lack of biomarkers, inequalities in care and key genetic signals. Afterwards, roundtable discussions covered themes including attracting new researchers to the field, persistent funding challenges and the need to enhance collaboration.

So far so good. However, the key marker of success in this area was always going to be not the event itself, but whether it led to a change in the scale of funding. So far, no new significant funding has materialised.

Notably, however, charities and researchers have since shown they intend to move ahead regardless of the slow pace of government action. In December, the ME Association announced it would be investing £1.1 million into the Rosetta Stone study, led by Professors Danny Altmann and Rosemary Boyton and colleagues at Imperial College London. The study will focus on the immunological profiles of ME and Long Covid, aiming to learn about underlying mechanisms through analysis of shared pathways.

Elsewhere, the ME/CFS alliance recently announced an event in Winchester in early March, bringing together eminent researchers from the UK and around the world to discuss the next strategic steps for ME research.

We’re giving this one a 2/5, but with a nod to the researchers and campaigners who have been doing the heavy lifting. We’re hoping to soon see the UK government following suit (your regular reminder here that the German government recently officially launched its ten-year initiative to tackle post-infectious diseases like ME, to the tune of 500 million Euros).

Looking ahead

It’s important to say here that change happens slowly, particularly in organisational behemoths like the NHS (or, as the saying goes: slowly, slowly and then all at once). Nonetheless, looking back, the scorecard from the first six months of the Delivery Plan is pretty disappointing.

Of course, people with ME are used to a slow pace of change and - particularly for those who’ve been in this much longer than we have - seeing the same debates repeated through the generations (does this early 90s clip from Adam, AKA Broken Battery, feel familiar?)

We’ll say it again, as we always do: people with ME deserve so much better. Here’s hoping the next six months of the Delivery Plan bring more for us to celebrate.

We’ll see you next time.

For over a year now I’ve been struggling to secure NHS Continuing Healthcare (CHC) funding for my husband James. It’s been a gruelling process, emblematic of the many challenges people with ME face accessing support and ultimately getting the condition taken seriously by the NHS. Today I’m sharing our story, and why I think this is an issue that deserves decision-makers’ attention.

Our story

As regular readers of our Substack will know, my husband James developed ME following a Covid infection in 2022. His deterioration was rapid. Within a year he declined from being in near perfect health to spending 99% of his time in bed, in a darkened room, barely able to speak, chew or swallow. Today, close to four years on, he is totally bedbound. On a bad day (and there are plenty of them) he can hardly manage even non-verbal communication. His health is a constant source of stress, particularly the ongoing threat of malnutrition.

James needs someone on call 24/7 to help him meet his very basic needs. Given my own health difficulties – not to mention the fact that, aside from James’ disability benefits, my job is our only source of income – the only sustainable option has been to involve paid carers. Without them I’d be providing 24/7 care on my own with no respite.

Despite the severity of James’ needs, we’ve had to finance all of his care privately. James was assessed as ineligible for social care funding due to jointly owning a flat, which we could no longer live in due to his disability, but that we were for a long time unable to sell. Over the past two years we’ve spent tens of thousands of pounds on James’ care: his monthly care costs are currently twice our rent. It was my search for a way to cover these spiralling costs that eventually led me to apply for CHC funding. A simple solution it was not.

CHC funding

As the NHS puts it, CHC funding applies where “long-term complex health needs qualify for free health and social care arranged and funded solely by the NHS”. It is designed for those whose needs are particularly complex, intense and unpredictable. It can cover nursing, as well as the costs of wider care for patients meeting the CHC criteria.

In my opinion, it is an absolute no-brainer that people with very severe ME should – in almost every circumstance I can think of – qualify for CHC funding. Caring for someone with very severe ME involves managing risks and high levels of need across many of the CHC domains, from malnutrition and the risk of pressure sores to extreme challenges with mobility and communication.

Beyond this, the cardinal symptom of post exertional malaise (PEM) introduces high levels of complexity and intensity to all care interactions. When crashes can be triggered by things as innocuous as noise, smells or movement in a patient’s room, or minimal levels of touch, care is not easy to provide and in itself introduces significant risks. Such crashes can often be unpredictable, seeming to come out of nowhere, leading to a worsening of symptoms, an escalation of needs, a recalibration of care routines, and sometimes the need for emergency support. It is for this exact reason that the 2021 NICE Guideline recommends to “risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks”. Clearly, this does not imply standard risk management or care planning.

Our CHC battle

When I first came across CHC funding it felt like the perfect fit. James was finally assessed last March. I provided reams of evidence and sat with the multi-disciplinary team for hours explaining what caring for James involved. Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected.

To put it mildly, the experience has been bruising. It has also left me thinking: in a context where the NHS is not equipped to provide James with any meaningful medical treatment, isn’t covering the costs of the care he needs to avoid further deterioration the very least they could do? Why is this one simple thing that could make our lives easier seemingly so hard for the NHS?

Some of the issues we have faced speak to wider challenges with CHC funding. A report last year from the Nuffield Trust found that the number of people found eligible for CHC had fallen over time, describing “concerns that financial pressures are playing a key role in the operation of CHC, with all parts of the system facing significant pressure to keep costs down”.

But there is no doubt in my mind that systemic failures in NHS care for people with ME also played a role. We started off the process at a disadvantage since, unlike most CHC applicants, we didn’t have an NHS specialist in our corner to provide evidence. Given a system where specialist NHS care for people with severe ME is “non-existent”, James is supported by a private specialist. Their detailed letter wasn’t referenced once in our Care Board’s rationale for refusing our appeal. Meanwhile, a low number of NHS interactions was used to evidence a lack of needs.

In my view, a lack of knowledge about ME has also been influential; in particular, a lack of understanding that PEM can lead to long-term deterioration (and has done on several occasions, in James’ case). This means that the risks involved in his care and the level of complexity have not been recognised, and nor has the extent of his limitations. Most difficult to read in our most recent rejection was a persistent framing of James’ needs as preferences: that he prefers not to verbalise and that he does not like having people in his room with him. Would they say someone with a severe nut allergy does not like peanut butter? That an asthmatic prefers not to breathe?

The bigger picture

I know that we are not alone in experiencing challenges with CHC funding. In our recent small survey of 17 carers for people with very severe ME, just four reported that the person they cared for was receiving support from a CHC-funded carer, and none received support from NHS-funded nursing. Almost as many (three respondents) reported covering the costs of carers from their private finances.

Let me be blunt: everything about how the NHS handles ME is broken. From the perspective of a patient and carer, everything is on fire. Achieving safe and meaningful NHS treatment for ME is a complex (and necessary) long-term goal. But don’t we need some quick solutions? Couldn’t easier access to CHC funding for those very severely affected be a much-needed quick win while we get on with the rest? I was surprised to find that the government’s Final Delivery Plan for ME doesn’t mention it once.

So, what next? This is an issue I’m keen to focus on in the coming months (if you’ve had similar challenges, we’re keen to hear from you). On a personal level, the fight goes on as we continue with our appeal to the next stage. I’ve recently managed to sell our flat, meaning that social care funding for James’ care may soon kick in. This may soften the personal impact, but it won’t cancel out how the NHS has, time and time again, proved unable to do the absolute minimum for patients with very severe ME.

In many ways, it’s been a painful reminder. The experiences James and I have had with CHC funding are exactly why we founded #ThereForME. They’ve also left me with a renewed sense of conviction: that we won’t stop fighting until the needs of people with ME – particularly those severely affected – are better recognised, understood and met.

Today, we’re bringing you the latest updates from Westminster, as well as our favourite recent spots from the research world and wider Substack community. If you’re feeling the January blues, you’re not alone. We hope there’s some news in here which might help lift your spirits.

What’s happening in Westminster?

Last week, friend of #ThereForME and fierce champion for people with ME Tessa Munt was appointed as the new Chair of the APPG on ME. Jo Platt, who stood down as Chair, will remain as Vice Chair and will be a key link to the APPG on Long Covid (which she also chairs). A big thanks to Jo for her tenure as Chair and congratulations to Tessa on her new appointment! We’re looking forward to continuing to work with Tessa in her new role.

Elsewhere in Whitehall, DHSC is due to convene a meeting in February to discuss a new NHS template service specification for mild and moderate ME. The new service specification is part of the Final Delivery Plan for ME, which states that the specification will “fully take into account NICE guidelines on ME/CFS” and will “be disseminated to all integrated care boards (ICBs) to inform their commissioning decisions and support quality of local service provision to match local needs”. Dr Binita Kane will be representing #ThereForME as part of the discussion.

Though we’re pleased to see Delivery Plan actions on mild and moderate ME moving forwards, the question remains: why are the needs of the sickest patients being neglected? With patients across the UK facing life-threatening complications and all too common patient safety concerns, the case for urgent action to improve care for these groups couldn’t be clearer. A couple of weeks ago, a question raised in parliament by Labour MP Rachael Maskell confirmed that discussions between DHSC and NHS England on the potential commissioning of a specialised service for very severe ME remain ongoing. A recent question from Jo Platt MP elicited a remark from Health Minister Ashley Dalton that DHSC is “taking specific steps to ensure that patients with severe and very severe ME/CFS are not overlooked”. As always, we’ll be working to hold DHSC to account on this one.

Recent progress in research

On the research side, we were pleased to see that ME Research UK has awarded funding to Prof. Chris Ponting at the University of Edinburgh for a new study investigating the use of blood-based markers to help in the diagnosis of ME/CFS.

The researchers plan to measure the levels of around 1,100 proteins in plasma samples from people with ME/CFS and control subjects, and use machine learning to classify the participants based on their diagnosis. The study builds on the team’s previous research, which identified over two hundred proteins whose blood levels differed significantly between people with ME and controls.

Across the pond, we spotted some promising recent findings from Todd Davenport and colleagues, who published a preprint from a study comparing physiologic responses in people living with ME and Long Covid using two-day cardiopulmonary exercise testing (CPET). Both groups showed a similar failure to recover after exertion, with a lack of meaningful differences between the two groups suggesting a shared bioenergetic pathophysiology. Interestingly, the study found that females showed more pronounced post-exertional abnormalities than males, and that the severe functional impairment shown in both groups was not explained by deconditioning.

A new substack on the block!

We were delighted to spot that former #ThereForME guest blogger Nick Benton has started a Substack of his very own. Nick’s substack, which he’s aiming to publish fortnightly, shares his experiences of ME. His latest blog post details the crash that left him bedbound for 18 months. If you’re looking for a new Substack to add to your collection, this one comes as a recommended read.

We’ll see you next week.

In October 2025, Action for ME launched their Big Survey for adults and young people living with ME in the UK. The 52 questions explore a wide range of experiences, from access to NHS healthcare to the financial impact of ME. Every question was developed alongside people with lived experience of ME and Long Covid and shaped by community feedback.

Working with Action for ME on the Big Survey, I’ve been struck by the important role that large-scale, charity-led surveys like this can play in building a clearer picture of what life with ME is really like – and in providing evidence that can drive change. In this post, I explain why projects like this are so valuable, and how you can get involved.

Why surveys like this matter

Research funding for ME is scandalously limited. In this context, projects like the Big Survey become even more vital, both for charities and researchers.

For Action for ME, findings from the Big Survey shape their organisational strategy and inform all aspects of their work pressing government, policy makers and the NHS for meaningful change for people with ME. Its value is reflected in the fact that Action for ME repeat the Big Survey roughly every five years. This means that it provides an up-to-date, evidence-based picture of life with ME. Previous Big Surveys have played a key role in shaping developments in ME policy and practice. Action for ME used the data gathered in the last Big Survey (2019) to respond to the National Institute for Health and Care Excellence (NICE) as part of the consultation to develop the 2021 NICE guideline.

For researchers like me, there is little in the way of high-quality, peer-reviewed research on ME to draw from. In its absence, large-scale charity-led surveys like this can help dispel myths and prejudices that still circulate around this illness. For example, some of the clinicians I worked with last year strongly believed that people with so-called ‘medically unexplained’ illnesses (a category into which ME is often pulled) were ‘frequent attenders’ of healthcare services. I was able to share that, actually, over half of Big Survey respondents in 2019 were not currently in contact with any NHS healthcare professional about their ME. It didn’t matter that these findings hadn’t been published in a peer-reviewed article: what mattered was being able to tell a story that contradicted widely held assumptions, and the Big Survey data provided a powerful way of doing this.

What’s different about the 2025 Big Survey

The 2025 Big Survey has been designed to fill critical gaps in our understanding of ME – such as who is able (and who is not able) to access NHS preventative health screenings. To our knowledge, this will be the first time that this information will be gathered, even though the ME community has been aware of these issues and their impacts for many years. Asking these questions will allow us to bring this knowledge into the open, and to share it with academic researchers and policy makers.

We also included questions on the financial cost of ME. Of course, creating an official estimate of the economic impact of ME is beyond the scope of this kind of project. However, having data that give an indication of these costs will be incredibly useful for Action for ME, as well as for ME researchers (for example, in supporting funding applications).

This year, Action for ME’s Research Team are working closely with Dr Audrey Ryback, from the University of Edinburgh, who will use the Big Survey data to study age of ME onset, triggers, and heritability. This means that the Big Survey will directly feed into, and inform, ongoing biomedical research. We are so excited to be working with Audrey, and to see what she can uncover within the data.

Another major difference is that this year’s Big Survey has been produced in collaboration with Durham University’s Institute for Medical Humanities, where researchers use methods from across the arts, humanities and social sciences to bring to light experiences of illness that are marginalised, unacknowledged, or invisible. In 2023, researchers from the Institute were awarded a large grant from Wellcome to establish the Discovery Research Platform for Medical Humanities, which aims to bring these hidden experiences to the forefront of health research. In 2026, I will be funded through this grant to analyse the Big Survey data and produce publications through which the impact of ME can be shared more widely with the academic community as well as with policy makers.

This collaboration has also enabled us, for the first time, to gain approval from a university ethics committee so that we can publish the results of the 2025 Big Survey in an academic journal. This means that the experiences captured by this charity-led survey can contribute to peer-reviewed evidence, giving them greater visibility, credibility, and influence within the academic community.

One of the Big Survey’s key strengths is the space it gives people to share, in their own words, how ME affects their lives. Analysing these free-text responses takes time and care, but this kind of qualitative analysis produces rich and powerful insights that are ideally suited to help people working in research, healthcare and policy understand what living with ME actually looks and feels like. Having the time, through this collaboration, to do this kind of analysis will ensure that we can make the most of the data we are entrusted with, and that the energy people put into sharing their stories is not wasted.

A call to action

We have already had over 3000 responses to the Big Survey, and we are so grateful to everyone who’s already had their say. There’s still time to join them: the Big Survey is open until 27 January.

If you have ME or Long Covid and you’ve not taken part yet, we’d love to hear from you. The main survey is aimed at adults in the UK, who live with ME or who experience ME symptoms as part of their Long Covid. There is a separate, shorter survey for children and young people (aged 17 and under) and their parents/guardians.

We recognise that completing the Big Survey can be a huge undertaking for people with ME. The online survey will save your progress, allowing you to pause and return to it later. We also have a version you can print, fill out, and either scan or post back to us.

However you fill it out, you don’t have to answer every question: you can skip questions or whole sections. Every piece of information that you are able to give us is valuable. For those with severe or very severe ME, someone else is welcome to fill out the survey on your behalf – and we may be able to offer telephone support (please see the FAQs on Action for ME’s Big Survey webpage for more information).

With this year’s Big Survey, we’re aiming for our biggest response yet, so that we can create the biggest impact. You can help make this a reality, so that charities, researchers and clinicians have the data they need to be #ThereforME.

Acknowledgements

Katharine would like to thank the Foundation for the Sociology of Health and Illness, who are funding her current programme of postdoctoral work, through a Mildred Blaxter fellowship. In addition, the Big Survey work has been supported by the Discovery Research Platform for Medical Humanities at the Institute for Medical Humanities, Durham University which is funded by Wellcome under grant reference 226798/Z/22/Z.

We are hugely thankful to have worked with a brilliant Patient and Public Involvement Group throughout the 2025 Big Survey, whose expertise has been both instrumental and invaluable to the project. We are also grateful to Dr Harriet A. Carroll and the members of the Science for ME forum, whose feedback shaped the final version of the survey.

Join us as we open our last round of doors!

December 17

Behind door number 17 is George Monbiot. George is a well-known journalist who has focused on ME and uncovering the reality of the “greatest medical scandal of the 21st Century”. George was nominated by Carole B, who expressed her gratitude for his work:

“Dear George, Your writing, your videos and your interest in the plight of ME sufferers is unsurpassed. You have all the facts coupled with understanding and humanity that makes us all feel really seen and safer with your backing. Thank you. ”

December 18

Behind door 18 is Alice, the founder of Smile for ME, a charity that sends personalised presents (“Smiles”) to people with ME and their carers. Alice was nominated by Team SalShirl, who left this message:

“Alice, Thank you for bringing so many smiles to people with M.E. 😊 Your generosity, compassion and kindness shines through your beautifully chosen gifts. Thank you for everything you bring to the M.E community through Smile for ME. X💙🩵x”

December 19

Behind door number 19 is Joan McParland MBE! Joan is the founder and coordinator of Hope 4 ME & Fibro Northern Ireland, an all-volunteer, patient-led charity for people with ME, Fibromyalgia, and Covid-induced ME in Northern Ireland. Joan was nominated by Rebecca:

“Joan, You are an inspiration to me & many ME sufferers across NI & beyond. You’ve founded an amazing charity in Hope 4 ME & Fibro NI & campaigned tirelessly for decades to raise awareness despite living with ME yourself. Lots of love, Rebecca”

December 20

Behind door number 20 is Dr Jo Greer. Jo is a friend of #ThereForME and the founder of the Red Leaf Creative Collaborative, a group of creatives that shares artistic expressions of hope for people with ME. Jo was nominated by Shirley (and everyone at The Red Leaf Creative Collaborative), who left her this message:

“Thank you Jo for all your work through The Red Tree and M.E , for the awareness and inspiration it provides, creating hope, solidarity, strength and a driving force for action “one red leaf at a time” 🍂 ”

Recently, the Red Leaf Creative Collaborative decorated a tree in Chester Cathedral’s Christmas Tree Festival, covering a Christmas tree with red leaves to raise awareness of the challenges facing people with ME.

December 21

Behind door number 21 is Dr Binita Kane! Dr Kane is the founder and clinical lead of the Long Covid Clinic, and a consultant with a special interest in ME and Long Covid. She is also a long-standing friend of the campaign, as a #ThereForME Ambassador and fierce advocate for people with ME. Dr Kane was nominated by Alexis, who thanked her for her work:

“Your advocacy and care have made the world of difference to my experience of having ME, while your compassion and skill continue to improve the lives of so many people with ME and Long Covid. Thank you for all that you do for the community.”

December 22

Behind door number 22 is Sir Ed Davey and The Lib Dems!

This year the LibDems have been key players championing the need for improved support for people with ME in parliament. You may remember that earlier this year, Tessa Munt MP sent a letter to Wes Streeting calling on the government to back the Delivery Plan for the ME with the resources it deserved. The letter was signed by all 72 Lib Dem MPs: an incredible show of support and solidarity.

Jonah Weisz, a member of our very own #ThereForME team, nominated the entire Lib Dem parliamentary party, and Ed Davey as their leader, for their amazing support throughout 2025:

“Thank you Ed Davey & the Lib Dems for being #ThereForME! We were overwhelmed, but not surprised, to see how quickly all 72 MPs signed Tessa Munt’s letter on the Delivery Plan. Thank you, Sir Ed, for encouraging a supportive culture that has enabled the party to stand so firmly with people with ME.”

We look forward to continuing our work with the Lib Dems in 2025!

December 23

Behind door number 23 is the formidable Jenny Wilson. Jenny is a long-standing advocate for people with ME and plays a pivotal role organising Dr Weir’s clinic. You may remember that we kicked off our 2025 Advent Calendar with a reflection from Jenny. Jenny was nominated by Phoebe, who left her this message:

“No one will believe the RESISTANCE; the quiet front, the charming little lady who goes nowhere, writes and speaks beautifully, belying a force of nature ten thousand hearts strong. Linking, doctoring, remembering, writing, saving hearts with ME.”

December 24

Finally, behind our very last door of our advent calendar is Rosie Barrett!

Rosie is a carer to her sister Alice and advocate for people with ME. Recently, she wrote for our blog about lessons from her experience caring for Alice. She was also featured by BBC Spotlight earlier in the year championing our #FundThePlan campaign. Rosie was nominated by Lauren:

“You are a carer for your sister, Alice, & you still find time to be an incredible advocate for her & the ME community. You have spoken on the news, you have started petitions & you have raised awareness of ME charities. Thank you ❤️”

Thank you for everything you do, Rosie!

It’s a wrap!

And that’s our advent calendar done for 2025! A huge thanks to everyone who shared nominations with us and to all of our advent calendar stars for everything they do. It’s been an absolute pleasure to celebrate all of the people out there who are doing an amazing job being #ThereForME.

We know that for many of you Christmas is a difficult time. So, today we’re sending all of our love and solidarity out to the community. We hope many of you will be able to find small ways to celebrate, even if this looks different to how it used to. And, as always, we’ll be thinking of the many people lying in dark rooms over the next few days, unable to spend the time with their loved ones. Please know you are not forgotten.

We’ll be off next week to catch our breath before getting back to it in the new year. Until then, we’ll see you in 2026.

Over the past couple of weeks we’ve been opening the doors of our advent calendar every morning on our social media (Instagram, Facebook, Twitter/X and Bluesky). For those who prefer to take their advent calendar in stages, we’ve got a weekly roundup for you here on our Substack.

All of our advent calendar stars have been nominated by the community for being #ThereForME throughout 2025.

December 10

Behind our tenth door is Dr Sally Witcher. Sally is the founder of Inclusive New Normal, a social enterprise aiming to drive forward learning from the pandemic, towards a safe, inclusive new normal.

Sally was nominated by Michiel who left this message:

“Dear Sally, Thank you for representing pandemic disabled people at Inclusive New Normal, inc. those with Long Covid and ME. Your invaluable experience and connections have made sure our voices are heard by the Scottish government & ADP review! 🩵”

A special thanks to Sally for sending us this glorious festive snap!

December 11

Behind door number 11 is the DecodeME team. Earlier this year the team, based at the University of Edinburgh, released groundbreaking research findings, revealing distinct genetic signals in people with ME.

The DecodeME study brought hope this year to people with ME across the UK. The findings are a major step forwards, pointing to clear avenues for future research. The DecodeME team was nominated by Michael:

“Dear Chris Ponting & the DecodeME team, Your DecodeME findings are a huge scientific and emotional milestone for people with ME. Thank you for driving research and hope — we’re grateful you’re #ThereForME.”

December 12

Behind door 12 is Rowan Wyatt, who was nominated by his partner Keren:

“Dear Rowan, you have loved and taken care of me through all the downs and downs (there haven’t been many ups) of this illness. More than that, seen past it for who I really am. You mean the absolute world to me and I love you. Thank you, Keren xx ”

December 13

Behind our thirteenth door is Jan Russell. Jan is the Chair of the Welsh Association of ME and CFS Support (WAMES), a charity working to give a national voice to people with ME in Wales, their carers and families. Jan was nominated by Dee Montague-Coast in recognition of WAMES’ stellar work:

“Diolch o galon for all you and WAMES do for people living with ME across Wales! We’d be lost without you, and we wouldn’t have ME in the NHS Wales Women’s Health Plan without the work of your tiny but mighty charity. Thank you all for everything.”

Jan’s nomination provides an opportunity to share recent news from Wales, where last week the Senedd, led by Adam Price MS, debated severe and very severe ME. The discussions reflected a strong call for the Welsh Government to ensure that the Adferiad-funded ME services are making provision appropriate to the needs of patients with severe and very severe ME. You can watch the debate here via Adam (AKA Broken Battery).

December 14

Behind door number 14 is Marlene! Marlene was nominated by her son Gav, who lives with ME. Gav wanted to thank his mum for all of her care and support in 2025:

“Mum - thank you for supporting me unconditionally, for looking after my pets and for cleaning my house when I couldn’t. Your unwavering support when I was finding it hard to shine makes you being my Mum sublime. X”

December 15

Behind door number 15 is the fabulous Nicky Proctor! Nicky is an advocate for people with ME, who has provided invaluable help as a volunteer to various ME organisations (including #ThereForME). We’re delighted to have this opportunity to celebrate Nicky’s hard work.

Nicky was nominated by Odette and the York ME Community, who left her this message:

“Nicky, you’re a supreme advocate for pwME - continuously striving to educate, inform & instigate change across every sector & level, be it friend/peer groups to healthcare providers & their management plus local MPs. You are amazing in every way.”

In case you missed her, earlier this year Nicky was featured on the Guardian’s Science Weekly podcast, where she discussed her experiences with ME and her participation in the DecodeME study.

December 16

Finally, behind door number 16 is the one and only Fran Haddock. Fran lives with severe ME and is a tireless advocate for the community (you can follow her on Instagram). Fran was nominated by Wren:

“Dear Fran, Through absolutely everything, I’ve been amazed at your constant effort to show up for your friends and your community. You care more than anybody I’ve ever met, and you motivate me to be so much braver, kinder and louder. Love you xx”

Thanks for being #ThereForME, Fran!

December 17

You’ll have to wait! We’ll be back next Wednesday with our final round of advent calendar stars.

Or, if you have social media and aren’t following us already, you can follow along daily on Instagram, Twitter/X, Bluesky and Facebook. Keep your eyes peeled at 9am tomorrow for our next advent calendar reveal.

We’ll see you next time.

We’ve been opening the doors of our advent calendar every morning on our social media (Instagram, Facebook, Twitter/X and Bluesky). However, for those who prefer to take their advent calendar at a slower pace, we’ve got a weekly roundup to share with you today. All of our advent calendar stars have been nominated by the community for being #ThereForME in different ways throughout 2025.

December 3

Behind door number three is Alexis Gilbert, a prolific advocate for people with ME and Long Covid. Earlier this year, his story was featured by BBC Yorkshire.

Alexis was nominated by Becky Williams, who shared this message:

“Alexis, not only are you a fantastic friend and support, but your dedication to advocate for this community is amazing. Please never underestimate what you do for so many people, we are forever grateful. Lots of love, Becky 💙 ”

December 4

Behind door number four is Anna Redshaw, the founder of the ‘Blue Sunday’ Tea Party For ME.

Blue Sunday is an annual event organised in aid of various ME charities. Anna was nominated by Charlotte for her tireless work for the community:

“Anna has been a wonderful online friend to many people with ME. She has also spent so much precious energy on growing her tea party for ME and has raised thousands for ME charities over the past decade. She is an inspiration. We love Ray Butterlumps!”

December 5

Behind our fifth door is Tony White, who was nominated by his partner Tracey D for his invaluable support over the years. Tracey shared this message with her nomination:

“Tony, I honestly can’t express just how grateful I am to have you by my side, and for everything you do and have done for me. Life with M.E. is more than difficult, and I know I can be, too — so thank you for your ongoing patience, care and love. Xx”

December 6

Behind door number six is Pauline White, our second healthcare worker of the advent calendar! We often talk about the need to improve NHS services for people with ME. So, it’s brilliant to take a moment to celebrate the NHS staff out there who are already getting it right.

Pauline is the CHC matron for East Devon. She was nominated by Debbie and the Barrett family for all of her work supporting Alice, who lives with very severe ME:

“Pauline

You totally support us in caring for Alice. You listen to us and take action. You go above and beyond educating other health professionals and advocating for people with ME.

Thank you

The Barretts”

December 7

Behind door number seven is Karin Hilton, nominated by her friend Lisa who is affected by ME. Lisa left this message with her nomination:

“Karin, you are my greatest cheerleader, researcher, shoulder, listener, occasional personal chef and all-round best friend. Without you I wouldn’t be where I am today, fought to be heard and gone after the things that make me happy. Thank you xx”

December 8

Behind our eighth door is our first #ThereForMP of the advent calendar, Sarah Gibson!

Sarah is the LibDem MP for Chippenham and was nominated by her constituent Tess for listening to her concerns:

“Sarah,

Thank you for always listening when I email you about Myalgic Encephalomyelitis.

I know you are trying your very best to help and to bring about positive change for your constituents with ME.”

December 9

Today’s advent calendar star, behind door number nine, is Frank Docherty.

Frank was nominated by his wife Susan for his incredible support since she developed ME:

“Francis, Thank you for all you do for me, especially since ME changed our lives. Thank you for your endless patience, for every cancelled plan, every meal, every chore. You show what “in sickness and in health” truly means. I’m so lucky to have you.”

Thanks for being #ThereForME, Frank!

December 10

You’ll have to wait! We’ll be back next Tuesday with our next round of advent calendar stars.

Or, if you have social media and aren’t following us already, you can find us on Instagram, Twitter/X, Bluesky and Facebook. Keep your eyes peeled at 9am tomorrow for our next advent calendar reveal.

We’ll see you next time.

To recap, each day throughout December we’ll be celebrating someone who has been #ThereForME, based on nominations from the community. We’ll be opening the doors of our advent calendar every day on social media. You can follow along on Instagram, Facebook, Twitter/X and Bluesky. Or, if you prefer to take your advent calendar at a slower pace, we’ll be sharing each week’s calendar stars every Tuesday right here on our Substack with all the doors we’ve opened in the previous week.

In our first update, we’re sharing our first two advent calendar stars and the Christmas messages from those who nominated them.

December 1

Kicking off our advent calendar, behind door number one is Sue. Sue was nominated by her mum, Sarah, for her amazing support.

Here’s the message Sarah left with her nomination:

“Sooz, you listen to me and send caring messages of support, which means so much. It keeps me going. You’re like a breath of fresh air.

This year you also fundraised a lot of money for M.E Research. I appreciate you so much. Lots and lots of love, Mum”

Thanks for being #ThereForME, Sue!

December 2

Behind door number two is Melanie De Luca, who works as a physio with Action for ME. Mel was nominated by Lizzy, who shared this message:

Mel,

You are such an incredible support to me, and so many others with M.E too.

It’s such a relief to know you understand and will help however you can, and I appreciate it so much.

It’s made this time a lot less scary and lonely.

Thank you, Lizzy x

A special thank you to Mel, both for sending a snap wearing a fabulous Christmas jumper and for being our first #ThereForME healthcare worker of the advent calendar!

December 3

You’ll have to wait! We’ll be back in your inbox next Tuesday with the next round of doors. Or, if you have social media and aren’t following us already, you can find us on Instagram, Twitter/X, Bluesky and Facebook. Keep your eyes peeled at 9am tomorrow for our next advent calendar star.

We’ll see you next time.

This year, each day throughout December we’ll be celebrating someone who has been #ThereForME, based on nominations from the community. We know that support for people with ME isn’t anywhere near as good as it should be - and we’re working hard to change that. But this Christmas we wanted to take a moment to celebrate those out there in the UK who are in our corner. So, a big thank you for helping us find our 2025 Advent Calendar Stars!

We’ll be opening the doors of our advent calendar every day on social media. You can follow along on Instagram, Facebook, Twitter/X and Bluesky. Or, if you prefer to take your advent calendar at a slower pace, we’ll be sharing each week’s calendar stars every Tuesday right here on our Substack.

Before we begin, today we’re sharing below a very special advent reflection, penned by the formidable Jenny Wilson. We’ll see you next time.

Advent Reflection for the ME Community

Advent is a season of hope, peace, joy, and love - a time to prepare for the coming of the Saviour, Jesus Christ. Yet for those of us with ME, Advent and Christmas often bring other emotions too: sorrow, isolation, and the sharp reminder of all we cannot do. While others gather to celebrate, many of us remain in darkened rooms, unable to tolerate light, noise, or company. It is then that the loneliness of illness feels most acute and can feel overwhelming.

And yet, Advent is precisely about light shining in darkness, and hope being born when all seems lost.

As a fifty-year veteran of ME, I have witnessed two parallel stories unfold. One is the steady progress of science, gradually uncovering some of the biological roots of this devastating disease during the last quarter of the 20^th century. The other is a darker story - of denial, distortion, and stigma, as powerful voices from 1988 onwards sought to redefine ME as merely psychological, and bury the research and knowledge gained. This falsehood caused profound harm: patients were abandoned, disbelieved, and sometimes destroyed by the very systems meant to protect them, while parents endured false accusations of fabricated or induced illness (FII).

But now, the truth is coming to the fore again, and the knowledge, long buried, is being regained. A new generation of scientists is rediscovering the evidence; silenced voices are being heard. For the first time, there is genuine, evidence-based hope - of biomarkers, of understanding, of treatments to come. Though some still cling to the old dogma, the medical darkness is giving way to dawn.

This Christmas, as we await the coming of Christ - the Light of the World - we also wait for the healing of truth and compassion. The hope of Advent is not naïve; it is forged in endurance and kept alive by faith.

Let us hold fast to that hope - that soon, light will shine fully into this darkest of medical chapters, and no one with ME or Long Covid will be left unseen, unheard, or disbelieved again.

With love to all in the community,

Jenny

Westminster Hall debates are a key way for backbench MPs to raise an issue and receive a government response. They take place away from the House of Commons main chamber and provide a way for MPs to engage on issues they care about.

Last week’s debate was tabled by Tessa Munt, a prolific champion of people with ME in parliament. Here are our five key takeaways and why we’re feeling (cautiously) optimistic.

#1 - MPs turned out in force

Westminster Hall debates cover an array of topics and attendance can be sparse. So we were extremely encouraged to count 24 MPs speaking or attempting to intervene during the 60 minute session.

This was a brilliant turnout, especially for an end-of-day slot after the close of government business. A huge thank you to all of you who wrote to your MPs: it worked! For the parliamentary nerds out there, this was a marked increase from last year’s Westminster Hall debate for World ME Day, where just 10 MPs spoke. Not only was turnout strong, but many MPs shared powerful interventions detailing their constituents’ experiences.

“I want to quickly mention one of those 25% of people with ME who are severely affected: my constituent Alice. She cannot leave her room, and is scared to call for treatment in case she has to go into hospital.” Jayne Kirkham (Labour, MP for Truro and Falmouth)

“Sarah Lewis was my constituent. I have here the prevention of future deaths report that was issued after the inquest. She took her own life, but was severely ill with ME. One thing that comes through very strongly is that she did not feel she was believed or taken seriously.” Kerry McCarthy (Labour, MP for Bristol East)

“One of my constituents, Nick, has ME and has described feeling as though he is stuck in a well without anyone to pull him out.” Tom Morrison (LibDem, MP for Cheadle)

We hope that the debate has sent a clear message to the government that this is an issue an increasing number of MPs are following closely and, crucially, hearing from their constituents about.

#2 - There’s a clear cross-party consensus that the government needs to go further

It was also encouraging to see cross-party consensus that the government needs to go much further in taking action to create meaningful change in the lives of people with ME.

Many MPs referenced the Final Delivery Plan for ME in their interventions, outlining ways in which it had fallen short. Funding was a prominent topic in the debate, with MPs across the house highlighting the need for more ambitious research funding.

“The ME delivery plan is fantastic, and a lot of people agree with it, but, importantly, there has been a lack of delivery.” Dr Luke Evans (Conservative shadow health minister, MP for Hinckley and Bosworth)

“I remain deeply concerned that the [delivery] plan falls short of delivering the meaningful change that is urgently needed by people living with those conditions.” Helen Maguire (LibDem spokesperson for primary care, MP for Epsom and Ewell)

“If the delivery plan felt threadbare, that is because no substantive new funding was attached to it. Before the plan was published, all 72 Lib Dem MPs signed a letter expressing our concerns about the anticipated lack of funding, which of course came to pass.” - Tessa Munt (LibDem, MP for Wells and Mendip Hills)

“Perhaps the Minister can reassure my constituents in Scarborough and Whitby that there is a future in which the ringfenced funding granted for research into other illnesses can be extended to ME.” Alison Hume (Labour, MP for Scarborough and Whitby)

#3 - Severe and very severe ME are finally getting airtime

We were also pleased to see severe and very severe ME finally getting some real airtime in parliament.

Severe ME was referenced 32 times during the debate, including during a significant section of Tessa Munt’s speech focused on patient safety risks for the most severely affected and a lack of government action to address these concerns. Tessa referenced the letter sent by over 200 healthcare workers last September for World Patient Safety Day calling for immediate action to save lives and the fact that these clinicians did not even receive a response.

Earlier in the day we organised a briefing with #ThereForME Ambassador Dr Binita Kane for Tessa Munt and chair of the APPG, Jo Platt, focused on malnutrition in very severe ME. In her remarks, Tessa spoke about one of the cases covered in our briefing:

“[Dr Binita Kane] told me about the case of a 25-year-old woman, a medical student, who developed severe ME after a viral infection in 2018. The young woman has been in an acute NHS hospital bed for 17 months with nutritional failure and has deteriorated to the point that palliative care is being instituted. Her family is being prepared for the worst—it is dreadful.

She has been disadvantaged not because of the individual clinical decisions, but because she suffers from a condition for which there is no safe or established service model. There have been multiple missed opportunities to prevent her condition progressing to this stage.”

It was heartening to later see Jo Platt confirming the APPG’s support for the commissioning of specialised NHS services for severe and very severe ME. Jo also highlighted the need for immediate action to improve patient safety while long-term solutions are under development and pushed the government for a meeting to discuss solutions.

“Patients are dying from nutritional failure because there is no commissioned service for severe ME. Some spend hundreds of pounds in hospital on private care without a proper pathway. Lives are at risk now and we cannot wait for long-term provision while patients suffer.

That is why, alongside the APPG, I am calling for the commissioning of specialised NHS services for severe and very severe ME with expertise in nutritional failure, and I would welcome the chance to meet the Government to discuss immediate solutions that can save lives today.”

#4 - The argument for research funding has been bolstered by German funding and DecodeME

With impeccable timing, less than a week before the debate the German government announced that they were putting an eye-watering 500 million Euros into research over the next decade to understand the causes of post-infectious diseases and to develop treatments. The announcement explicitly included ME and Long Covid, which were described as one of the greatest public health challenges of the 21st century.

We weren’t the only ones to notice. It was fantastic seeing MPs referencing Germany’s funding as a gold standard for ambition. Between this and DecodeME’s recent findings, the argument for putting real money into ME research is feeling more compelling than ever.

“DecodeME has shown the brilliance of UK science, but funding remains far too limited. Germany has pledged €500 million to research with the aim of curing ME by the next decade. We need to be just as ambitious.” Jo Platt (Labour, MP for Leigh and Atherton and chair of the APPG on ME)

“Greater funding and support for research are also vital. Germany has pledged €500 million to research ME and find a cure for it. It is time that this country also stepped up and showed the same ambition.” Adam Dance (LibDem, MP for Yeovil)

“The University of Edinburgh’s DecodeME project has been a notable exception [...] [which] gives us a solid and compelling foundation for future research. Can the Minister explain what plans are in place for future funding to capitalise on this research?” Tessa Munt (LibDem, MP for Wells and Mendip Hills)

“The real cause for hope is Edinburgh University’s DecodeME study, which the chief executive of Action for ME, Sonya Chowdhury, described to me as being like a treasure hunt map with eight crosses where there is a genetic code that matches ME, but where we then have to go and dig up that treasure. That is what is now waiting to happen, and why funding is so important.” Jeremy Hunt (Conservative, MP for Godalming and Ash)

#5 DHSC rhetoric is getting stronger on how people with ME are being failed

Finally, parliamentary convention sets aside time in a Westminster Hall debate for a government minister to respond to the issues raised. Ashley Dalton, Parliamentary Under-Secretary of State for Public Health and Prevention, represented the Department of Health and Social Care (DHSC). Promisingly, Dalton began her remarks by confirming that she would be happy to meet with both Tessa Munt and Jo Platt to discuss issues raised in the debate.

In her intervention, Dalton trotted out many of the usual government lines, which, in response to the many powerful stories raised by MPs, felt a little hollow. Maybe we’re optimists, but we did, however, note a strengthening in the government’s rhetoric.

Policy change is a slow process and understanding whether it’s in motion is often a case of reading between the lines. In her remarks Dalton pointed to the need to “ensure that every person living with ME/CFS is treated with dignity and compassion” and outlined ambitions for “equitable, evidence-based services”. Beyond that, she referenced the “urgent need for reform” and remarked that “we cannot and will not not allow such failings to continue”. She finished her intervention with the following commitment:

“ME/CFS has been overlooked for far too long. We are determined to change that. To everyone living with ME/CFS and to your families and carers, I say this: we hear you; we value you; we believe you; and we are committed to making the system work better for you and with you.”

Of course, as we’ve said time and time again, what really matters is not words but action. But we’re certainly intrigued to see Dalton saying (some of) the right words, coupled with Tessa Munt soon afterwards expressing intent to hold Dalton’s “feet to the fire”. We’re right there with you, Tessa.

We’ll see you next time.

Today’s guest post is from Yanto Evans. Yanto has been living with Long Covid since April 2020. His background is in Finance and Economics. He lives in Wales and is also a Trustee for the Long Covid Support charity. A Welsh language version is available below.

Ask most people in Wales right now and they’d say Covid-19 is no longer anything to worry about. Government officials commonly refer to the Covid pandemic in the past tense. Once a staple of every daily news feed, any efforts to record community cases have long fallen by the wayside. Even when it comes to Long Covid, long-term sequelae resulting from Covid infections are often blamed on the vaccine – despite many developing the condition well before the first vaccine was even administered.

In December 2024, during a debate on Long Covid in the Senedd (Welsh Parliament), the Welsh Cabinet Secretary for Health and Social Care, Jeremy Miles, proclaimed the population was developing ‘natural immunity’ to Covid-19. This is misleading and dangerous. Numerous studies have shown repeat Covid infections actually increase the risks of long-term harm.

While there is no longer the same focus on Covid infections, the limited data that are available suggest Covid remains a tangible threat. I wrote to Jeremy Miles to request a meeting to address serious concerns. That request was unfortunately declined. What follows is a summary of the findings from recent and ongoing research.

Long Covid in Wales

According to the Office for National Statistics (ONS), mortality rates in Wales have still not recovered to pre-pandemic levels.

Deaths in Wales 2013–2024

Indeed – according to the National Survey for Wales – the general health of people in Wales is at its worst since records began.

In June 2021, the Welsh Government launched the Adferiad programme (Welsh for ‘Recovery’) of services to support those with Long Covid. As of March 2023, annual funding was increased to £8.3 million divided among the seven Health Boards and its remit was extended to support those with other chronic conditions, including ME. These services, by definition, aren’t clinics, and most are not able to prescribe medications. Instead, responsibility lies with each health board to determine those services it feels are appropriate. There is no overarching strategy regarding how best to diagnose or treat patients.

In January 2022, the then First Minister Mark Drakeford dismissed any notion of a specialist clinic in Wales. His preference was that primary care clinicians should be equipped to respond to patients within the community where possible. In January of this year, patients under the Cwm Taf Morgannwg Health Board received news that their local service was closing. This is despite the health board being in receipt of funding from the Welsh Government for that very purpose. The reason given for its closure cited low referral numbers. In a Freedom of Information request, it was determined that, of the £1.1 million of funding it received, less than half was spent on Long Covid patients. The remaining funding was redirected to other unrelated services within the health board.

In conversations with Long Covid patients in the area, they say that many GPs have little understanding of Long Covid. Similarly to ME, some patients claim their symptoms are still being dismissed or ignored. Where patients asked to be referred to their local Adferiad service, many GPs were unaware such a service existed. Consequently, patients recall being referred to a succession of specialists that had proven unproductive. A closer examination of GP referrals in recent years reveals a steep rise compared to pre-pandemic times. Referrals in the Betsi Cadwaladr Health Board have more than doubled, while in the Aneurin Bevan Health Board they’ve almost tripled.

Wales GP referrals 2010–2011 and 2021–2024

Impacts for the workforce and education

Due to continued exposure to airborne viruses (including SARS-CoV-2, which causes Covid-19), absence rates among healthcare workers have risen significantly since the start of the pandemic. This is demonstrated by recent data published by NHS Wales. Absence rates in NHS Wales – the nation’s largest employer – are now averaging 6.5% compared with the 2% UK national average. That equates to 1 in 15 NHS workers off sick every day.

Four key reasons for sickness 2018/19 to 2022/23

When it comes to children, initial theories suggested they were at minimal risk following a Covid-19 infection. However, subsequent papers have dismissed that notion; a recent study in the US suggested that Long Covid may have become the most common chronic condition in children, with more affected by it than by asthma.

Meanwhile, school absenteeism in Wales has still not recovered to pre-pandemic levels. The main reason attributed to these absences is illness.

Percentage of half-day sessions absent from school of secondary school-age pupils

Given the declining health of the workforce, it stands to reason this is impacting the Welsh economy. According to ONS data, more than 30,000 have become economically inactive due to long-term sickness since 2020.

Number of economically inactive people in Wales due to long-term sickness

There are currently no efforts to count those living with Long Covid (or indeed ME) in Wales. In the last Winter Covid Infection Study by the ONS in March 2024, Wales opted not to take part. Among the reasons that the Welsh government gave was that incidence was based on self-reporting of symptoms and misclassification by participants was possible. With a current lack of a diagnostic test, there is simply no alternative other than to count self-reported cases.

Research into the impact of chronic illnesses on the Welsh economy is sorely missing, yet consider the introduction of the 20mph speed limit in September 2023. In the face of fierce opposition, the Welsh government defended spending £32 million on its roll-out by claiming it served to ‘protect lives’, prevent co-morbidities and would save NHS Wales £92 million per year. In a 12-month period leading up to June 2023, the number of fatalities caused by road accidents was 89. By contrast, official figures for deaths caused by Covid-19 (which is likely to be an undercount) came to 1,486. This statistic alone indicates the profound impact that Covid-19, and indeed Long Covid, is likely to be having on NHS Wales and the wider economy.

‘Yma o hyd’

So, what now for those in Wales with Long Covid or ME? As attention turns towards the Senedd elections in May next year, there seems to be little appetite within government to prioritise the unfolding health crisis. A Special Purpose Committee set up to examine the role of the Welsh government’s response to the Covid pandemic was dissolved earlier this year. This followed a withdrawal from the committee of the Welsh Conservative party following Labour’s refusal to support witnesses providing evidence under oath. Meanwhile, Jeremy Miles has already declared his intention to step away from politics altogether at the next election.

‘Yma o hyd’ is a phrase embedded within Welsh culture. Pronounced ‘um-ah oh heed’, it means ‘still here’. Taken from a song by the musician and campaigner Dafydd Iwan, it serves as a reminder to his compatriots of the country’s long, tumultuous history and the resilience shown in the face of foreign invaders. Its chorus rings out with the rallying call – ‘Er gwaethaf pawb a phopeth, ry’n ni yma o hyd’, which translates as, ‘In spite of everyone and everything, we are still here’. In my eyes, it’s symbolic of the plight of so many, both here in Wales and further afield, whose lives have been devastated by Long Covid and ME.

Mae post gwadd heddiw yn dod gan Yanto Evans. Mae Yanto wedi bod yn byw gyda Covid Hir ers Ebrill 2020. Ei gefndir yw mewn Cyllid ac Economi. Mae’n byw yng Nghymru ac mae hefyd yn Ymddiriedolwr ar gyfer yr elusen, Long Covid Support. Mae fersiwn Cymraeg ar gael isod.

Gofynnwch i’r rhan fwyaf o bobl yng Nghymru ar hyn o bryd a byddent yn dweud nad oes unrhyw rheswm i boeni am Covid-19 mwyach. Mae swyddogion y llywodraeth yn cyfeirio’n aml at y pandemig Covid yn y gorffennol. Unwaith y prif bwnc mewn pob datganiad newyddion dyddiol, mae unrhyw ymdrechion i gofnodi achosion cymunedol wedi stopio. Hyd yn oed pan ddaw at Covid Hir, mae canlyniadau hirdymor o heintiau Covid yn aml yn cael eu bai ar y brechlyn – er gwaethaf y manylion o lawer yn datblygu’r cyflwr yn llawer cyn i’r brechlyn cyntaf gael ei roi.

Ym mis Rhagfyr 2024, yn ystod dadl am Covid Hir yn y Senedd, cyhoeddodd Ysgrifennydd Cabinet Cymru dros Iechyd a Gofal Cymdeithasol, Jeremy Miles, fod y boblogaeth yn datblygu ‘immunedd naturiol’ rhag Covid-19. Mae hyn yn gamarweiniol ac yn beryglus. Mae nifer o astudiaethau wedi dangos bod heintiau Covid ailadroddus yn cynyddu gwirioneddol y risg o niwed hirdymor.

Er nad oes yr un ffocws ar heintiau Covid mwyach, mae’r data cyfyngedig sydd ar gael yn awgrymu bod Covid yn dal i fod yn bygythiad ymarferol. Ysgrifennais at Jeremy Miles i ofyn am gyfarfod er mwyn ymdrin â phryderon difrifol. Gwrthodwyd y cais hwn yn anffodus. Y canlynol yw crynodeb o’r canfyddiadau o ymchwil ddiweddar a pharhaus.

Covid Hir yng Nghymru

Yn ôl Swyddfa Ystadegau Gwladol (SYG), nid yw cyfraddau marwolaeth yng Nghymru wedi adfer i lefelau cyn-pandemig eto.

Farwolaethau yng Nghymru 2013–2024

Yn wir – yn ôl Arolwg Cenedlaethol Cymru – mae iechyd cyffredinol pobl yng Nghymru ar ei waethaf ers i gofnodion ddechrau.

Ym mis Mehefin 2021, lansiodd Llywodraeth Cymru raglen Adferiad o wasanaethau i gefnogi’r rheini gyda Covid Hir. Hyd at Fawrth 2023, cynnyddodd ariannu blynyddol i £8.3 miliwn wedi’i rannu rhwng y saith Bwrdd Iechyd ac estynnwyd ei gylch gorchwyl i gefnogi’r rheini gyda chyflyrau cronig eraill, gan gynnwys ME. Nid clinigau yw’r gwasanaethau hyn, wrth eu diffiniad, ac nid yw’r mwyafrif yn gallu rhagnodi meddyginiaethau. Yn lle hynny, mae’r cyfrifoldeb gyda phob bwrdd iechyd i benderfynu pa wasanaethau y mae’n teimlo sydd yn addas. Nid oes strategaeth gyffredinol ynghylch y ffordd orau o ddiagnosio neu drin cleifion.

Ym mis Ionawr 2022, gwrthododd y Prif Weinidog ar y pryd Mark Drakeford unrhyw syniad o glinig arbenigol yng Nghymru. Ei ffefryn oedd y dylai clinigwyr gofal sylfaenol fod wedi’u harfogi i ymateb i gleifion o fewn y gymuned lle bo modd. Ym mis Ionawr eleni, derbyniodd cleifion o dan Bwrdd Iechyd Cwm Taf Morgannwg newyddion bod eu gwasanaeth lleol yn cau. Mae hyn er gwaethaf bod y bwrdd iechyd yn derbyn cyllid gan Lywodraeth Cymru at y diben hwnnw. Y rheswm a roddwyd am ei gau oedd nifer isel o gyfeiriadau. Mewn cais Rhyddid Gwybodaeth, penderfynwyd, o’r £1.1 miliwn o gyllid a dderbyniodd, y treuliodd llai na hanner ar gleifion Covid Hir. Ailgyfeiriwyd y cyllid aros i wasanaethau eraill nad oeddent yn gysylltiedig o fewn y bwrdd iechyd.

Mewn sgyrsiau gyda chleifion Covid Hir yn yr ardal, maent yn dweud bod llawer o Meddygon Teulu yn deall ychydig am Covid Hir. Yn debyg i ME, mae rhai cleifion yn honni bod eu symptomau yn dal i gael eu hanwybyddu neu eu gwrthod. Pan ofynnodd cleifion i gael eu cyfeirio at eu gwasanaeth Adferiad lleol, nid oedd llawer o Feddygon Teulu yn ymwybodol bod gwasanaeth o’r fath yn bodoli. Yn sgil hynny, mae cleifion yn cofio cael eu cyfeirio at gyfres o arbenigwyr a brofodd fod yn anfoddhaol. Mae archwiliad agosach o gyfeiriadau Meddygon Teulu yn y blynyddoedd diweddar yn datgelu cynnydd sydyn o gymharu â’r amseroedd cyn argyfwng y pandemig. Mae cyfeiriadau yn Bwrdd Iechyd Betsi Cadwaladr wedi mwy na dyblu, tra bod cyfeiriadau yn Bwrdd Iechyd Aneurin Bevan bron i drydeddau.

Cyfeiriadau Meddygon Teulu Cymru 2010–2011 a 2021–2024

Effaith ar y gweithlu a addysg

Oherwydd ymdreiddiad parhaus i firysau yn yr awyr (gan gynnwys SARS-CoV-2, sy’n achosi Covid-19), mae cyfraddau absenoldeb ymysg gweithwyr gofal iechyd wedi cynyddu’n sylweddol ers dechrau’r pandemig. Dengys data diweddar a gyhoeddwyd gan GIG Cymru hyn. Mae cyfraddau absenoldeb yn GIG Cymru – cyflogwr mwyaf y genedl – bellach yn cyfartalu 6.5% o gymharu â chyfartaledd cenedlaethol y DU o 2%. Mae hynny’n 1 o bob 15 gweithiwr GIG ar salwch bob dydd.

Pedwar rheswm allweddol dros salwch 2018/19 i 2022/23

Pan ddaw i blant, awgrymodd damcaniaethau cychwynnol eu bod mewn perygl isel ar ôl haint Covid-19. Fodd bynnag, mae papurau diweddarach wedi gwrthod y cysyniad hwnnw; awgrymodd astudiaeth ddiweddar yn yr UD y gallai Covid Hir fod wedi dod yn yr cyflwr cronig mwyaf cyffredin ymhlith plant, gyda mwy yn cael ei effeithio ganddo na chan asthma.

Yn y cyfamser, nid yw absenoldeb ysgolion yng Nghymru wedi adfer i lefelau cyn-pandemig eto. Prif reswm a roddir am y rhai hyn yw salwch.

Canran o sesiynau hanner diwrnod wedi colli ysgol gan ddisgyblion oed ysgol uwchradd

O gofio iechyd dirywiol y gweithlu, mae’n rhesymegol bod hyn yn effeithio ar economi Cymru. Yn ôl data ONS, mae mwy na 30,000 wedi dod yn anweithgar yn economaidd oherwydd salwch hirdymor ers 2020.

Nifer y bobl sydd yn economaidd anweithgar yng Nghymru oherwydd salwch hirdymor

Ar hyn o bryd nid oes unrhyw ymdrechion i gyfrif y rhai sy’n byw gyda Covid Hir (neu ME) yng Nghymru. Yn Astudiaeth Haer Cymdeithasol Covid y Gaeaf diwethaf gan yr ONS ym mis Mawrth 2024, dewisodd Cymru beidio â chymryd rhan. Ymhlith y rhesymau a roddodd llywodraeth Cymru oedd bod achosion yn seiliedig ar hunan-adrodd ar symptomau ac y gellid cam-ddosbarthu gan y cyfranogwyr. Heb brawf diagnosis presennol, nid oes dim dewis arall ond cyfrif yr achosion a adroddwyd yn hunan.

Mae ymchwil i effaith afiechydon cronig ar economi Cymru yn amlwg yn brin, ond ystyriwch gyflwyno’r terfyn cyflymder 20mph ym mis Medi 2023. Yn wyneb gwrthwynebiad ffyrnig, amddiffynnodd llywodraeth Cymru wario £32 miliwn ar ei gyflwyniad gan honni ei fod yn ‘diogelu bywydau’, atal anafiadau a byddai’n arbed £92 miliwn i’r GIG Cymru y flwyddyn. Mewn cyfnod o 12 mis cyn mis Mehefin 2023, y nifer o farwolaethau a achoswyd gan ddamweiniau ffyrdd oedd 89. Yn groes, ffigurau swyddogol ar gyfer marwolaethau a achoswyd gan Covid-19 (sydd yn debygol o fod yn gyfrif isel) oedd 1,486. Mae’r ystadegyn hwnnw’n unig yn dangos y dylanwad dwfn y mae Covid-19, a hefyd Covid Hir, yn debygol o fod yn ei chael ar GIG Cymru a’r economi ehangach.

‘Yma o hyd’

Felly, beth erbyn hyn i’r rheini yng Nghymru â Covid Hir neu ME? Wrth i’r sylw droi at etholiadau’r Senedd ym mis Mai y flwyddyn nesaf, ymddengys nad oes llawer o awydd yn y llywodraeth i roi blaenoriaeth i’r argyfwng iechyd sy’n datblygu. Daeth Pwyllgor Diben Arbennig a sefydlwyd i archwilio rôl ymateb llywodraeth Cymru i’r pandemig Covid i ben yn gynharach eleni. Dilynwyd hyn gan dynnu’n ôl o’r pwyllgor gan Blaid Geidwadol Cymru ar ôl i Lafur wrthod cefnogi tystion yn darparu tystiolaeth o dan addo. Yn y cyfamser, mae Jeremy Miles eisoes wedi datgan ei fwriad i adael gwleidyddiaeth yn llwyr yn yr etholiad nesaf.

‘Yma o hyd’ yw ymadrodd wedi’i osod o fewn diwylliant Cymreig. Yn deillio o gân gan y cerddor a’r ymgyrchydd Dafydd Iwan, mae’n gwasanaethu fel atgof i’w gyd-Gymry o hanes hir a chythryblus y wlad a’r ymwrthedd a ddangoswyd wynebwr goblygiadau tramor. Mae ei chorws yn canu gyda’r alwad uno – ‘Er gwaethaf pawb a phopeth, ry’n ni yma o hyd’. Ym marn i, mae’n eiconig o drasiedi cymaint, yma yng Nghymru ac ymhellach, lle mae eu bywydau wedi cael eu dinistrio gan Covid Hir a ME.

In a break from our usual schedule, we wanted to let you know about a Westminster Hall Debate, focused on government support for ME, which will be taking place next Wednesday 19 November from 16:30-17:30. And we need your help!

The debate has been tabled by Lib Dem #ThereForMP extraordinaire Tessa Munt. Westminster Hall debates are a key way for backbench MPs to raise an issue and receive a government response. They take place away from the House of Commons main chamber and provide a way for MPs to engage on issues they care about. A packed Westminster Hall debate can be a strong sign to the government about levels of parliamentary support on an issue. And with the recent Final Delivery Plan publication, there’s no time like the present to talk about what comes next.

You can help by writing to your MP to let them know about the debate and ask them to speak on your behalf. We’ve got a template here that you can use to write to your MP - although the more you can personalise it, the more likely it is that your MP will take notice.

Let’s pack Westminster Hall!

ME has sat in the shadows of our healthcare system for decades. It is debilitating, poorly understood, and too often dismissed. People living with ME face long waits for diagnosis, a lack of specialist services, and uncertainty about how and where they can access support.

After years of tireless work from campaigners, the UK government has finally published a Delivery Plan for ME. It aims to boost research, improve education, and address failures in the health system. These goals are welcome, but the plan lacks dedicated funding and clear leadership – we still do not know who will have oversight of implementing this plan. Without new investment and clear targets, the plan risks being little more than warm words. I have been pushing the government to ensure that we see real action.

More disappointingly, for my constituents in North East Fife, the Scottish government has shown no inclination to publish a Scottish equivalent to the plan. Instead, ministers say they are engaging with health boards to raise awareness of existing guidance, and that funding for ME and Long Covid will be channelled through NHS budgets. I was pleased to see that the Scottish Government committed £4.5 million annually to Long Covid, ME and other similar conditions, which was clarified in a Parliamentary Question asked by my colleague, and leader of the Scottish Liberal Democrats, Alex Cole-Hamilton. However, I share the frustration of organisations such as Long Covid Scotland and Long Covid Kids over long delays in allocating these funds to services.

Challenges in Scotland and North East Fife

A lack of ownership from the Scottish government has resulted in the disparity and service failures that my constituents have come to know all too well following the passing of Keith Anderson two years ago. He was the sole specialist nurse in Scotland, and his clinic offered dedicated support for people with ME across the region. At the time of his passing, NHS Fife pledged to recruit a new specialist nurse but have so far been unsuccessful. The inability to recruit and fill this role has left my constituents with nowhere to turn. Indeed, there are currently no specialist doctors and nurses across the whole of Scotland. It has shone a light on existing services and, in particular, the gaps in them, highlighting long wait times, stretched resources and funding challenges.

Despite not being able to fill this role, NHS Fife has responded positively to the idea of digital platforms for remote care. This is particularly important for those with severe ME who are housebound and cannot easily attend appointments. These steps matter, but progress is slow, and for many patients in Fife, meaningful access to specialist care remains out of reach. I am calling for the Scottish government to urgently roll out its Digital Front Door pathway and will continue to hold ministers to account in this regard.

However, the picture across Scotland is uneven – a recent health board survey showed that only NHS Fife and NHS Lothian ever offered a specialist pathway for ME patients, and as of 2023, only NHS Lothian’s pathway was active. In most areas, support remains patchy, informal, or simply non-existent.

With that said, I am somewhat reassured by the Scottish government’s recent adoption of the 2021 NICE Guideline, although a version tailored to Scotland would be more suitable. This is a step in the right direction and shows a commitment to both patient voice and stricter safeguarding. However, Scotland has a long way to go if it is to honour these guidelines, especially without a body of specialist doctors and nurses.

Putting research and government leadership at the heart of policy discussions

One of the most significant barriers to progress is of course the lack of research on ME. Without robust evidence, we cannot improve treatment, build specialist capacity, or give patients hope for the future. In Scotland, the Chief Medical Officer has acknowledged that more research is needed, and there have been discussions with UK government counterparts about joint working. However, low levels of funding discourage new or larger projects, and training opportunities for health professionals remain limited. If Scotland wants to be serious about improving ME care, research must improve and be at the heart of future discussions.

In the absence of strong government leadership, charities and campaigners have stepped up. Action for ME, the ME Association, and the #ThereForME campaign have all played vital roles in raising awareness, providing resources, and supporting patients.

I have been proud to work with these organisations and am honoured to be writing this piece for #ThereForME, but we must acknowledge that it should not fall solely on charities to fill the gaps left by government.

What needs to change

So, what should the Scottish government do?

First, there must be much more investment in research. Without it, we cannot hope to understand causes, develop treatments, or improve services. Funding streams should be ring-fenced and substantial enough to attract high-quality applications.

Second, training must be improved across all sectors. GPs, nurses, and other healthcare professionals need to be supported so that they have access to continual, accessible training opportunities to recognise and manage ME. This is particularly urgent given that the conditions overlap with Long Covid.

Third, the government must urgently expand access to specialist care. That means supporting health boards to recruit and retain specialists as well as encouraging multidisciplinary approaches. Digital care should be developed to reach those who cannot travel.

Finally, there needs to be long-term planning. Piecemeal initiatives and short-term pilots will not deliver the systemic change required. Both the UK and Scottish governments must set out clear action plans, backed by funding, with accountability built in.

For too long, ME has been underfunded, under-researched, and poorly understood. Patients deserve better. I will continue to press NHS Fife, the Scottish government, and the UK government to step up. Until they do, I will keep listening to patients, working with charities, and holding those in power to account. For those living with ME in Fife and across Scotland, meaningful change cannot come soon enough.

#ThereForME Advent Calendar - thanks for your nominations!

First of all, a huge thanks to everyone who submitted nominations for our 2025 #ThereForME advent calendar, which this year will be celebrating 24 people who have been #ThereForME as selected by you!

Nominations are now officially closed and our HQ team is hard at work reviewing your suggestions. While December is often a hard time for those living with ME, our advent calendar is giving us something to look forward to.

Action for ME’s 2025 Big Survey

Here’s a reminder that Action for ME recently launched their 2025 Big Survey. You can access it here.

Action for ME runs their Big Survey every five years, aiming to build an evidence-based picture of what life with ME is like. This year’s survey will generate insights into the real-life impact of ME - from finances and employment, to access to services, and beyond. Developed in collaboration with Durham University’s Institute for Medical Humanities, the survey will be analysed by Dr Katharine Cheston alongside Action for ME’s research team. Anonymised survey data will also be shared with Dr Audrey Ryback, at the University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.

There is no obligation to complete every question, and respondents can pause at any time. The survey will be open until 27 January 2026 (more information is available here).

UK and international research

Earlier this year, we collaborated with CrunchME to produce a report mapping the growing UK ecosystem working to solve ME and Long Covid. That report is now available in an insta-friendly format and it’s well worth taking a look.

It’s a busy time internationally for conferences focused on ME and Long Covid. A shoutout to Elisa on Twitter/X who spotted six research conferences taking place in October and November alone - from Canada to Portugal!

Steps forward?

Closer to home, we recently attended a meeting organised by ForwardME with the Department of Health and Social Care (DHSC) with the aim of discussing next steps in the Final Delivery Plan for ME. Karen and a few other #ThereForME volunteers presented on behalf of various ForwardME working groups which are focused on different parts of the Delivery Plan, including attitudes and education, and severe and very severe ME. Together with other ForwardME representatives, we highlighted gaps in the Delivery Plan and actions we would like to see the DHSC take to address them.

Top of our list is immediate action to address the patient safety risks facing those with very severe ME. It’s been over a year since over 200 healthcare workers, led by Dr Binita Kane, wrote to Wes Streeting highlighting patient safety concerns relating to NHS care for ME. Not only did they receive no response, but over the past year little has changed. While we continue to advocate for longer-term solutions, the need for patient safety requires urgent and immediate action.

We’re also looking forward to joining an NIHR and MRC joint showcase event on 6th November for research on post-acute infection conditions. The event is part of the Delivery Plan for ME, and aims to stimulate further research. Of course, the true indicator of its success will be not the event itself but whether it leads to much needed progress that accelerates research.

In fact, across the board, here’s your regular reminder that what really matters is not the meetings, talk and words - but whether they lead to action.

We’ll see you next week.

Today’s guest post is from Rosie Barrett. Rosie, 31, is a full-time carer for her younger sister, Alice. She moved back to her parents’ house when Alice first became bedbound in 2022. Rosie made a #FundThePlan video earlier this year and has given TV interviews to help raise awareness. Her blog today echoes many of the themes from our previous collaboration with Patient Safety Learning which focused on the challenges faced by people with ME when accessing healthcare.

My sister Alice has very severe Myalgic Encephalomyelitis (ME), along with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). She has lived with ME for around six years, but the last three have been devastating – she is now completely bedbound, has an indwelling catheter and is PEG-fed (through a feeding tube into her stomach). For a while, she also received IV fluids at home through a PICC line: this is a line that can be in place longer-term, allowing treatments to be delivered directly into the vein. But that stopped after the line broke. The risks of travelling to hospital for a new one were simply too great.

Before ME, Alice had no health issues. She was thriving – she’d just graduated from Newcastle University, moved to Bristol and got her first job. She was active, optimistic and excited for the future. ME took all of that from her. Eventually, she had to move back home because she could no longer care for herself.

Hospital admission

In February 2023, Alice was hospitalised. Swallowing became too much for her due to the energy involved and she was unable to take on enough calories. She became malnourished and needed lifesaving nutrition. Alice agreed to be hospitalised reluctantly. She knew she needed help but also knew how damaging a hospital environment would be for her symptoms. She faced two battles: the first for her physical survival, the second against the environment itself.

Hospitals are simply not set up for someone with ME: beeping machines, vibrating trolleys in the corridors, bright overhead lighting, strong smells from perfumes and cleaning products, noisy conversations from other patients and staff, weekly fire alarm testing, observations and interactions with medical staff (even though we were lucky and the nursing staff tried their best).

Her poor toleration of and sensitivity to sound (hyperacusis), light (photophobia), and movement (allodynia) made every moment a fresh trauma. Each sensory assault triggered post-exertional malaise (PEM), the hallmark symptom of ME – a worsening of symptoms following even minor physical or mental activity. Her baseline deteriorated rapidly. Her neurological symptoms worsened. After a three-month admission she left the hospital with the PEG tube she needed but with significantly more limited functionality than when she went in.

Hospitals must do better

Hospitals should be places of healing – but for people with severe ME, they are often sources of harm.

The NHS urgently needs to create sensory-safe spaces. These aren’t ‘nice-to-haves’ – they are essential for people with ME and others with complex neurological conditions. The one-size-fits-all approach to hospital care simply does not work for patients like Alice.

Too often, people with ME avoid hospitals altogether — only going in life-or-death situations — knowing full well that admission will likely make them worse. Accessibility is about more than ramps and lifts. It’s also about reducing sensory and environmental harm.

Adaptations that are needed include:

• ME-specific or sensory-sensitive wards

• Side rooms with blackout blinds and dimmable lights

• Soundproofing or vibration-reducing flooring

• Fragrance-free policies

• Staff trained to speak quietly, to limit physical touch, and to understand PEM

• Reduced and adapted interactions tailored to the patient’s needs

• Space for family members and known carers to stay with the patient, as they are best placed to provide daily care for their person with ME in a way that doesn’t exacerbate symptoms

Home

When Alice came home after her hospital stay, she was unable to go back upstairs to her bedroom. The stairs have a bend in them and sitting her up – even briefly – wasn’t an option due to severe POTS. So we set up the sitting room downstairs as her new room. We’ve done everything we can to adapt the room to her extreme sensory needs.

Everyone I know who supports someone with severe/very severe ME has their own set of ‘tricks’ to reduce harm. Here are some of ours:

Light:

• Blackout curtains, taped down to block every sliver of light

• A heavy curtain over the door to stop light spilling in when we enter

Smell and MCAS-related sensitivities:

• The curtain also helps prevent smells from entering

• We cook with all windows open and avoid strong-smelling foods (especially garlic)

• We’ve eliminated all scented products from the house: cleaning sprays, detergents, shampoos. We only use products that are unscented and that don’t trigger Alice’s MCAS symptoms

Sound:

• Soundproof foam on her door and over the fireplace (to minimise the noise of wind down the chimney)

• Ear plugs

• White noise to help block out background noises

• We try to be as quiet as possible around the house

• Communicating with Alice using limited words, abbreviations, and hand signals

This level of adaptation might sound extreme, even hard to imagine. But for people with very severe ME, every sound, smell and beam of light can make them worse. Every detail matters. These sensitivities must be better understood – by families, by the public, and most importantly, by health professionals.

Thinking differently

ME forces you to think differently, to problem-solve, to compromise, to reimagine daily life in a way most people will never have to. It also highlights how ill-equipped our health and social care systems are for patients with complex, poorly understood conditions.

It’s not just hospitals that need to change. Community care must evolve too. We need:

• Sensory-safe spaces in GP surgeries

• Home-based or virtual care options

• Training for NHS community teams on sensory overload and PEM

• Policies that treat environmental triggers as accessibility issues, not just patient preferences

Before Alice was in hospital, we had difficulties with health professionals in the community. Now, however, we are lucky that the few health professionals that do have direct involvement with Alice take measures to accommodate her needs. They change into unscented scrubs and make a conscious effort to not use any scented products on the day of their visit. They are happy for us to be Alice’s advocates to minimise any unneeded interaction with her. They see Alice in dimmed light. If they need to speak to Alice, they either pass a message to her through us or they make sure to speak quietly and carefully to her.

What being #ThereForME really means

It’s not enough for the NHS to have a one-size-fits-all model for ME – it is essential that it is flexible enough to accommodate patients’ individual care needs. Until then, people with ME will continue to suffer needlessly, and potentially deteriorate, when trying to access healthcare. Indeed, many will avoid it entirely.

It’s a dilemma no one should have to face: whether or not to access much-needed medical care, when without adequate adaptations that care puts them at risk of further harm.

Following on from last year’s successful advent calendar, we’ll be back this year with a new advent calendar - but with a twist. We are asking you to share your nominations of people who have been #ThereForME this year.

This could be someone who has been there in some way for you personally, in person or online, or more generally for the cause. This might be a friend (irl or online), family member, someone in the ME community, a carer, a healthcare worker, a researcher, a journalist, an MP, or someone else in public life - anyone you’d like to thank for being #ThereForME! We’re hoping to include a full range in the advent calendar.

To nominate someone, please fill in this short form.

Nominations will close on October 26th. If your nomination is selected, we will get in touch to let you know and to request further details from you if needed. We’ll get in touch with all nominees in order to obtain their consent to feature them, request a photo, and ask their social media handles.

We launched our callout for nominations at the weekend - and a huge thank you to everyone who has shared their nominations so far. We’re looking forward to many more!

We’ll see you next week.

#ThereForME updates

Back in #ThereForME HQ we’ve been focusing on getting our house in order and planning for what comes next. Our first priority is raising awareness in parliament about the challenges facing very severely affected patients and the need for appropriate NHS care provision.

While you may have noticed we’ve moved away from weekly updates on our Substack, we remain committed to keeping you informed with regular posts about the developments that matter most to our community. We’ve also got some great guest posts lined up that we look forward to sharing with you!

What’s happening in Westminster?

So what’s been going on in the world of Westminster? With the party conference season in full swing, the short answer is: not a whole lot. On 10th September, shortly before the recess for Conference season began, the All-Party Parliamentary Group on ME met to launch their inquiry into severe ME. Attendees heard directly from people with lived experience about the devastating impact of severe ME. Full minutes and presentations from the meeting are now available. The APPG will meet again on 23rd October to discuss next steps.

We were delighted that #ThereForME volunteer Jonah Weisz was able to bring some advocacy messages (and snazzy #ThereForME tote bags) to the Lib Dems’ party conference. Elsewhere, the Department of Health and Social Care (DHSC) has been moving ahead with parts of the Delivery Plan, including a new NHS service specification for mild and moderate ME, and the planned public awareness campaign. We’ve let DHSC know we are happy to support and hope to provide input as these plans progress.

Long Covid advocacy overseas

Recent data confirmed what many in our community already knew: Long Covid isn’t going away. Research tracking millions of people showed that incidence rates remain stubbornly high across multiple studies, with no decrease over time. In cohorts of 3.8 and 1.9 million adults selected using two distinct sets criteria, the story is consistent. he same pattern is demonstrated in children. It is clear this isn’t a problem that will solve itself. Enter advocates.

As we look to the future, we’ve been taking inspiration from some of the Long Covid advocacy making waves outside the UK. It’s been encouraging to see various policy discussions taking place and burgeoning interest from policymakers.

In the US, the Department of Health and Human Services (HHS) convened two roundtables on Long Covid in September, one centered on patient experiences, the other on research, bringing together clinicians, researchers, advocates and government officials. Health Secretary Robert F. Kennedy Jr. described the meetings as “the start of a sustained national effort,” noting that he hears daily from those affected and that the condition impacts his own family. Leaders from the FDA, NIH, and ARPA-H also pledged to elevate Long Covid as a priority, while Kennedy announced a new “Long Covid Consortium” to coordinate work across agencies.

HHS said it will launch a public awareness and education campaign aimed at patients, clinicians, and employers and develop an open-source medical resource platform to share clinical guidance and best practices. The Agency for Healthcare Research and Quality separately announced new grants to support multidisciplinary Long Covid clinics, with funding of up to $1 million annually for up to five years.

Both roundtables highlighted Long Covid as a serious public health challenge, with participants stressing the importance of listening to patient voices. Yet advocates noted what was absent: no major new federal research funding was announced, and little in the way of direct financial or practical support for people living with the disease. The consortium’s structure and funding remain unclear, raising questions about how it will differ from or complement existing initiatives.

Over in Brussels, Gez Medinger addressed the European Parliament at an event on Long Covid, emphasising that this is a problem affecting not just individuals but entire societies due to its scale. He highlighted how the issue remains invisible to decision-makers and pointed to research showing that people with Long Covid experience worse quality of life than those with advanced cancer.

Medinger discussed the challenges posed by the condition’s heterogeneous presentation, the need to stratify patient populations for treatment, and the risks of reinfection. His key message: we need the same political will that drove the acute COVID response then to address Long Covid now.

As the fight continues at home and abroad, we’ll keep pushing for the action our community deserves.

We’'ll see you next time.

Our regular readers will know that this is an issue we’ve been following with interest. People with very severe ME have a shockingly poor quality of life. Yet at present there are no specialist NHS services anywhere in the country equipped to meet their needs. Is that set to change? So far, the government’s answer is a solid ‘wait and see’.

We believe that people with the greatest experience supporting people with ME — that is, the family and friends caring for them, and the clinicians supporting them — should be at the heart of the government’s decision making. So, over the past couple of weeks we’ve surveyed some carers and clinicians for their thoughts on whether a service should be commissioned, and if so what it should look like. Here’s what we’ve heard so far.

About our survey

Our sample is intentionally small. Given the variety of ME scales, we wanted to be certain that all respondents had experience supporting those with very severe ME as per the 2021 NICE Guideline, i.e. “People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.” This meant that we distributed the survey through our networks rather than sharing it openly online. While the sample isn’t huge, we’re confident we’ve captured relevant perspectives. This process highlighted that a clear and consistently applied definition will be needed to provide a threshold for eligibility for a standalone service for very severe ME.

In total, 27 people responded to our survey: 17 carers and 10 clinicians. All but two were based in England. While the Delivery Plan focuses on England, we accepted responses from those across the UK, given the importance of developing a shared UK-wide approach.

Who is supporting these patients now?

First, we asked carers to identify which professionals provided regular support to the person they cared for. The most common responses were private specialists or an NHS GP, followed by NHS community teams. Notably, less than half were regularly supported by NHS teams in the community, despite an extremely high level of needs. Some commented that the support received in the community or from their GP was not especially meaningful. Unsurprisingly, given the lack of services, no respondents noted regular support from an NHS specialist clinic, and two respondents said that they were not receiving any regular medical support at all.

The responses made clear the huge responsibility that currently rests on the shoulders of family and friends caring for their loved ones. On average, the carers were providing 144 hours of unpaid care per week. Some spoke about providing 24/7 care for years with few or no breaks. A little less than half were receiving support from paid carers, with a small number reporting that this was covered by NHS Continuing Healthcare or council funding. Some were covering care costs from their own private finances.

Should the Health Secretary commission a service for very severe ME?

We asked both clinicians and carers whether the health secretary should commission a service for very severe ME. The answer was a unanimous “yes”, with a common reason being the complete lack of specialised NHS support for this group of patients.

Many felt that a specialist service was crucial in order to minimise potential harms. Clinicians and carers spoke about recent preventable deaths, patients’ traumatic experiences in hospitals, and cases of deterioration due to harmful advice or late interventions. Some commented that GPs — many of whom want to help their patients — have nowhere within the NHS to turn for specialist advice.

Some also noted that privilege currently plays a role in determining patient outcomes, explaining that an NHS service is needed because not everyone can afford private care (currently the only form of specialist support), nor does everyone have friends or family able to care for them.

“There is currently nothing! Ever since my daughter became fully housebound nine years ago there has been no specialist overviewing her condition or medical care. This lack of knowledge, service and pathway led to a very dangerous decline in her condition when she lost the ability to swallow, was admitted to hospital as an emergency and subjected to a torturous 13 week [hospital] stay, which eventually led to a J-tube being inserted.” - Carer for a patient with very severe ME

“Those with very severe ME are among the most overlooked and dismissed people in society. The suffering is needless and preventable. Solutions to this rely on recognising the nature and scale of the problem, measuring what is important and having the political will to make the necessary changes.” - Carer for a patient with very severe ME

“These patients are incredibly sick, and when they reach out for expert care and a care pathway on the NHS - it simply just does not exist. And young people have died because of it. Also the lack of education and training in post viral disease in the UK means patients [...] often report feeling neglected, dismissed, disbelieved and gaslighted. Often they are given the wrong advice which can and does result in a deterioration in their condition.” - NHS clinician

Building trust

While the call for a specialist NHS service for very severe ME was unanimous, when asked if they would be likely to use such as a service, all but one of the carers we consulted responded “it depends”. It was clear from the responses that previous experiences of NHS care have led to mistrust in its safety and quality. Most said they would be unsure about accessing a specialist service due to the risk of inappropriate care causing harm to their loved one. Factors that would encourage carers to access specialist care included being provided with clear information about who was involved in the service, including their level of knowledge and experience, and what the service could offer.

Many felt it should be made clear that the service was taking a biomedical approach, building on the latest research and evidence, and was not informed by psychosocial perspectives. Two respondents specifically noted that a service run by BACME clinicians (who are associated with existing approaches) was unlikely to be trusted. Another suggested collaboration with clinicians who are already supporting patients (and trusted by them), particularly those working in the private sector, in the design and delivery of the service.

“It depends on how good and suitable the service is they set up and what they can offer. Patients that have very severe ME are extremely vulnerable so if the service isn't suitable it could be life threatening.” - Carer for a patient with very severe ME

“I would only seek assistance if I was 100% confident that the service was appropriate for the very severe. The risk of harm through inappropriate services is substantial.” - Carer for a patient with very severe ME

“I would need to feel confident that the assistance would be appropriately skilled, supportive and ultimately likely to be of benefit.” - Carer for a patient with very severe ME

For some, wider action on ME throughout the NHS and across government — such as the training of healthcare workers and an apology for previous approaches — would play a role in building trust in specialist services. For others, the service ‘doing a good job’ and generating positive feedback from users would help to build confidence. Both carers and clinicians felt that a clear approach of listening to and respecting both patients and carers was critical to building trust in any specialist service.

“Once trust is lost it is exceptionally difficult to rebuild. Burnt child shies the fire…I would require to see evidence not only of the specific services commissioned, including level of expertise from support staff but very much also consistent evidence from others of lived, positive personal experiences with such services. In short, it would take a lot!” - Carer for a patient with very severe ME

“By doing a good job! Demonstrating thorough knowledge of the condition, listening to patients and their carers, accommodating their needs eg doing home visits, seeking specialist advice where necessary, treating any coexisting medical conditions and coordinating a team around the patient providing holistic care.” - NHS clinician

“There is a small group of long term physicians and new emerging physicians that this patient community DO trust and having us involved in an advisory capacity either routinely or via a Martha’s Law request would help build trust in the patient/carer community.” - Private clinician

“Make it abundantly clear the model of ME the service is informed by. Have a strong patient and carer advisory panel that has a voice in the planning. Make an unreserved public apology for the very many thousands of lives that have been ruined by the previous psychologically based paradigm.” - Carer for a patient with very severe ME

What would support from this service look like?

We also asked the carers and clinicians what kind of support the service should provide if it were commissioned. Some suggestions received unanimous support: access to medication for symptom management, access to off-label and emerging treatments, coordination with GP and community teams, emergency support (for example, virtual wards and coordination of hospital care), support with nutrition and hydration, and treatment of common co-morbidities such as POTS and MCAS.

Other suggestions receiving near unanimous approval included access to specialist nursing, remote at-home tests and investigations, support with Continuing Healthcare funding, information and advice for carers, and participation in research and clinical trials. Most backed the idea of offering referrals to specialist clinicians, with suggestions including gastroenterology, neurology, cardiology, haematology and pain clinics. However, it was highlighted that specialists should be appropriately informed about very severe ME in advance of consultations and prepared to make necessary adjustments.

Noticeably, the types of support that respondents had most mixed opinions about reflected what is currently available from existing NHS ME/CFS clinics (which typically do not treat very severe patients). This included advice for managing symptoms, support with welfare benefits, occupational therapy, psychological support and physiotherapy (with the latter two the least commonly selected). Support for these forms of support was more qualified than other options, particularly among carers. For example, some felt these could be valuable if delivered by clinicians with appropriate knowledge, while others cautioned about the potential for interventions to be unhelpful or even harmful.

“In some cases, psychological support and physio will be relevant due to comorbidities or secondary issues but unlikely to be appropriate for the very severe - other than in a consultative capacity.” - Carer for a patient with very severe ME

“People with very severe ME are too ill to benefit from some of the interventions, eg OT, physiotherapy, advice re pacing etc. They are too ill to interact with healthcare professionals.” - Carer for a patient with very severe ME

“Physios who understand very severe ME can offer appropriate support to help patients avoid bed sores and contractures.” - Carer for a patient with very severe ME

Carers and clinicians also shared their own ideas for what could be offered. Some spoke about assistance for carers such as mental health support. Others prioritised provision of home IV saline. There were recommendations for specific at-home testing, including remote sleep studies and alternative forms of testing (such as urine, saliva and stool tests) for patients for where drawing blood is difficult or hard to tolerate due to sensitivities. While some stressed the need for the service to have some capacity for in-patient care, others pointed to the need primarily for local and community support. They recognised that, except in life-threatening emergencies, most patients will be best supported from home. Other suggestions included at-home dental visits, home care packages and support with home adaptations. Some also pointed to the need for coordination between primary and secondary care, and across multi-disciplinary teams.

“[It] needs to be joined up between primary and secondary care. Need nursing teams to visit patients at home and take bloods, perform limited tests like pulse, BP [blood pressure], NASA lean test.” - NHS clinician

“Referral to specialists following up to date science on ME and comorbidities. Specialists in neurology, gastroenterology, rheumatology, immunology, autonomic dysfunction that are interested in the latest scientific evidence and are prepared to hold MDT meetings to discuss the best way forward for each patient.” - Carer for a patient with very severe ME

What next?

We hope this can be the start of a conversation about an NHS service for very severe ME. Crucially, we think this needs to focus not just on whether a service is commissioned, but also what a good service would look like and how it can build trust among one of the most neglected groups of patients in the country. Getting this right will be challenging, but the potential gains for patients and their carers are enormous.

If you’re a carer for someone with very severe ME, or a clinician with experience treating very severe ME patients, who we haven’t already consulted: we’d love to hear your views. Reach out to us as we continue this conversation. This is something we’re keen to do more in-depth research on to ensure our advocacy with decision-makers is rooted in relevant lived experience.

We’ll see you next time.