Burnout has been the recurring theme in every collaborative CEO/founder meeting I’ve sat in on over the past month or so (or the “third sector”, “VCSE”, “nonprofit world”… whatever we’re calling it this week). Not as a passing comment, but as a steady undercurrent. You can hear it in the tone of voices, in the pauses, in the slightly-too-long silences after someone asks, “How are things going?”

On paper, these are resilient, experienced people doing meaningful work for a wide range of different causes. In reality, many of them are exhausted and out of ideas. Funding is tightening, the political landscape surrounding their particular cause feels increasingly unstable, and there’s a growing sense that lived experience is still not being listened to in the way we’ve all been pushing for. It’s a lot, and it’s happening across the board, not just in one pocket of the sector. I don’t feel separate from that, I recognise it.

One of the things I think people often misunderstand about ME Foggy Dog is what my day-to-day work actually looks like. From the outside, it’s easy to assume that it’s mostly about raising awareness of Myalgic Encephalomyelitis (M.E), creating social media content, and being visible within the community. Yes, that all still exists from our time as a social media-driven brand (2014-18), but it’s not where most of my time or energy goes anymore. The real work, the time-consuming and draining work, is about reaching outside our bubble for maximum social impact.

It’s about trying to build something that is sustainable in the long term. Something that isn’t entirely dependent on short-term funding or the unpredictability of goodwill (volunteering or donations). That means thinking like a social enterprise, not just a community-led initiative. It means constantly looking for funding opportunities, those little “life rafts” that keep us moving forward  (that sole trader social enterprises, such as ME Foggy Dog are rarely eligible for!) and trying to connect with audiences, partners, and decision-makers who aren’t already immersed in the M.E world. That kind of work is often invisible, and it’s neverendingly relentless. You don’t ever really “finish” it.

Then there’s the social media side of things, which has changed beyond recognition since ME Foggy Dog first started in 2014. Back then, it made sense to be a social media-driven brand. It was effective, manageable, and importantly for me at the time, it aligned with my career. I ran my own social media marketing company for a short time after leaving full-time employment, so that space felt like home. These days, it’s a completely different landscape. Algorithms have shifted and social media is all the poorer for it, public behaviour has altered, and the expectations around content have changed. There are organisations and individuals doing absolutely brilliant, highly engaging work online, far better than what I’m now able to produce, but they often have the time and/or teams to do that. To operate at that level now would be a dedicated job in itself. Not a sideline, not something you dip into between other tasks. That’s simply not something I can do.

Because alongside everything else, I’m also managing an energy-limiting condition. I can work for up to about 16 hours per week, and over time I’ve become very good at making those hours count. I can prioritise quickly, work efficiently, and get through a lot in a short space of time. But there is always, without fail, a long list of things left undone at the end of the day, and most of those things are the unglamorous, non-public-facing parts of running a social enterprise. Governance, finance, strategy, compliance, partnerships… all of the behind-the-scenes work that keeps things afloat. Remember, I’m doing all of that across two social enterprises.

Even writing it down, seeing it written down,  I can see why people might worry that I’m doing too much. It’s something I’m very aware of myself. But one of the things I’m incredibly grateful for is that I’m not managing this in isolation. My Directors, Team Stripy, are very clear: my health is not an afterthought, it’s a central factor in everything we do. They’ve said to me more than once that without me, there is no Stripy. Which is both flattering and slightly terrifying at the same time. But it does mean that every decision we make includes a check against what is realistically sustainable for me. If something isn’t M.E-friendly, it doesn’t matter how successful it’s been for another organisation, it’s not a good fit for us. It forces a level of creativity and honesty that you don’t always see elsewhere. We even explicitly factor my health into our SWOT analyses. It sits there, very clearly, as a risk. Not because anyone is being pessimistic, but because it’s the reality we’re working within, and ignoring that reality would be far more risky in the long run.

That said, the threat of burnout has still been quietly building in the background for a while. Not suddenly, not dramatically, but in that slow, creeping way that’s easy to miss until you take a step back. Since around 2020, there’s been a noticeable increase in “extra everything”. Extra projects, extra collaborations, extra issues that feel urgent, important, and impossible to ignore. Working in this space, it’s very hard not to get pulled into those things. When you see problems affecting your community, the instinct is to help, to fix, to respond. But those one-off responses often evolve into long-term commitments, and before you know it, you’re juggling something that has grown far beyond its original scope. It becomes another ongoing demand on time and energy, gradually shifting your focus away from your core purpose.

For both social enterprises, that core purpose is clear: to improve the lives of people living with M.E.

Over the past 9 months or so, I’ve been stripping things back. Stepping away from projects where I can, being more selective about collaborations, and asking some quite blunt questions about what we’re doing and why we’re doing it. It’s a bit of a “back to basics” approach. Less reacting, more focusing time and energy. Less being pulled into every new issue, more protecting the limited energy I have for the work that really matters. Hearing other CEOs talk about growing numbers of people leaving the sector altogether has definitely sharpened that thinking. These are people who care deeply about what they do, and if they’re reaching the point where walking away feels like the only sustainable option, then something isn’t working at a much bigger, systemic level.

All of which is why, as I sit here finishing up work for the week, I feel an overwhelming sense of relief knowing that I’m about to take a proper break. Not just a change of pace, but an intentional switch-off from everything work-related. The kind where you step away mentally, as well as physically. That rush of relief is probably the clearest sign that I need it. So for the next week or so, I’m planning to do something quite radical (for me, anyway): turn myself off, and then, hopefully, turn myself back on again afterwards in a slightly better state than I am now. I haven’t done this since last August (Norfolk Broads holiday!) and it feels long overdue.

If there’s one thing that all of this keeps bringing me back to, it’s that sustainability isn’t just about organisations, funding models, or business plans. It’s about people. If the people at the centre of these organisations burn out, then everything else becomes irrelevant.

So this is me, taking own advice for once… and stepping away before my battery runs completely flat.

Love Sally

and Foggy (OBVIOUSLY) xx

The post Burnout, and Turning Myself Off and On Again first appeared on ME Foggy Dog.

I heard the initial concerns about copyright and IP and wrongly believed there were laws in place that could protect businesses and creatives from copyright/IP violations. I also believed that, as long as I didn’t ask for anything to be created ‘in the style of’ So and So, I wasn’t stealing anyone’s work. I now know that I was completely wrong and that theft of creative output is a genuine concern, whether done deliberately or not, and whether the creative objects or not. Away from A.I., I have been the ‘victim’ of copyright theft; I could literally hear my own voice when reading M.E.-specific content from a very large public organisation who had engaged with my work. I know how hurtful that feels and would never intentionally do that to anyone else.

I dallied with creating artwork using A.I. for a short period of time around 2024, I haven’t created artwork using AI since 2025. Here’s that bit of the story….

I had the idea to create BED for Severe ME 6 weeks before the original first awareness day, 8th August 2024 (it’s now held on Oct 29th every year). I knew I would need original artwork to increase engagement, I also knew I wanted to sell badges as a revenue stream (50/50 split of profits going to 2 M.E. charities,) – the imagery needed to be GOOD but also timely. I needed to have finished artwork within 10 days. My first stop, as always was my friends who are artists. These awesome people have previously offered to create imagery either pro-bono or at low cost, something I am always grateful for as I am only too aware of the true value of their creativity, but we are a micro-entity social enterprise with very little money! All 3 of these awesome artistic friends were busy with other work; it should be noted that 2 of them directed me towards A.I. for a quick turnaround. I contacted a local graphic designer who has created designs and imagery for me before, I gave him a detailed brief, and paid him for an hour’s work (out of my own money – not ME Foggy Dog funds) – around £35. Unfortunately, although he had stuck to the brief it wasn’t what I had pictured in my mind. I knew I couldn’t afford to keep paying for different drafts so I thanked him and, did as my artist friends suggested and looked for a good A.I. site specifically for artwork. I found Nightcafe, a great site that offers the first few attempts for free but then it becomes a ‘credits’/subscription service.

As you can see from the images and prompts below, I learned I had to be more descriptive to get better results.

First prompt: ‘Basic light blue fabric sleep mask covers eyes in a darkened room’ – I figured I’d keep it broad to see what A.I. came up with first.

‘Close up on head, chronically sick woman head on pillow, they are wearing a blue sleep eyemask and noise cancellation headphones’ (5th prompt)

‘Sad, lonely, chronically sick person in bed in a dark room’ (10th)

‘Sad and lonely chronically sick woman in pyjamas laid on their bed’ (13th)  – far too realistic! Looks like a photo, something I didn’t want.

‘Sad and lonely chronically sick middle aged woman in pyjamas wearing an sleep mask. She is laid on her bed propped up on pillows.’ (15th)

157 attempts later…. (yes, I had to pay for credits for ‘evolves’ (re-dos)) and I finally saw what had been in my mind’s eye. 157 attempts meant I had to go through a lot of dinosaurs instead of humans, 7 fingered people, eye masks with eye holes (um….yeah because they would block out light!), and three-eared humans, to get to the end result I wanted.

‘Sad and lonely haggard chronically sick middle aged woman in pyjamas wearing a sleep mask. She’s asleep.’. Hurrah!! The word ‘Haggard’ was added, 10 more ‘evolves’ were made and – mission accomplished!

I decided I needed more images to reflect the diverse nature of our disease, and so to create the other 5 images in the series, I simply had to change the age/sex/ethnicity in the prompt. Even then it took another 30-odd ‘evolves’ to get the whole series.  This would not have been possible, in such a small space of time, away from A.I.. I didn’t want to use photographs of real people as I didn’t want to have to pick one person to be the ‘poster’ person for M.E. It also would have taken a long time to get volunteers/photos organised. Remember, I had 6 weeks to get everything created, uploaded to the website, badges printed and sold, donation pages sorted…etc etc.. I also didn’t want the image to look like a photograph, I didn’t want it to look like a real person. It is not based on any one, real individual – you can tell that from the prompts I used.

I have received low level backlash for using A.I. to create this artwork, I hope this blog provides an explanation as to why I did that in 2024/25. I also received praise from other corners of our community for using such visually striking images for the Bed for Severe M.E. campaign. These people asked what platform I used and are now using it in their own work. I should say that, these images are the permanent official BED for Severe M.E. promotional images and I won’t be replacing them any time soon, if ever. However, I see this as a learning exercise and it has helped to shape my current viewpoint on A.I.. I created maybe 10 A.I. images for M.E. work over the space of those 9 months nearly 2 years ago. I’d prefer to not create more AI artistic content in future, because of the concerns laid out in this blog. However, if I am ever in a situation similar to the BED for Severe M.E. 6 week turnaround scenario again, who knows. I have deadlines and M.E. funds to raise. Taking the moral high ground requires a healthy bank balance, unfortunately. Never say never, I have no idea what the future holds.

I have found it interesting that I received a small backlash for using A.I. to create artwork but am regularly encouraged by our community to use it for accessibility reasons such as creating transcripts, adding CCs to videos, or using translation services so people living with M.E. have greater access to my output. I wonder why we are outraged at some people potentially being at risk of losing their jobs, income, but not others? I paid hundreds of pounds to have a human translate English content into Welsh in 2023 because I wanted to be 100% sure of quality. But in 2026, there are very good AI translation services. In 2023, I was able to pay for this service because of grant funding, however, would I be as inclined if I were on a virtually non-existent budget? I believe budgetary restraints are adding to the drive towards A.I. being the way forward, it has certainly historically been a driver for me.

I should clarify that after playing around with A.I. for around 9 months on various projects, my eyes started to be opened as to the negative flipside of the convenience. I think A.I. has immense potential as a disability aid, it opens up the possibilities for those of us who need extra help with written tasks, or getting organised at the touch of a button. But, many of the uses of A.I.in the wider population seem to be vanity projects and pointless. There have been arguments made recently by tech giants, that the reluctance to embrace A.I.is similar to when the internet first came about. It’s claimed that people are scared of the unknown. I disagree, I think people are realising the negatives massively outweigh the positives. If A.I .can’t exist without harming the planet, at what point do we say no?

I was relieved to see that Erin Brockovich (I’m sure you’ve all seen or heard about the film of the same name) has started to tackle the impact of A.I. data centres in the US with her website – AI Data Center Reporting. The key concerns she is tackling can be seen in this screenshot from the website homepage-

The post Is the A.I. ‘Race’ Worth It? first appeared on ME Foggy Dog.

I want to be clear at the outset about what this piece is, and what it is not. Who Gets a Seat at the Table? Lobbying and Access in the UK is not a commentary on global politics, international relations, or any particular social issue. Like most people, I hold strong opinions in my private life, but they are not relevant here. This is instead a reflection on how lobbying and access to government operate within the UK, and on who is permitted to operate in those spaces, and who is not.  What follows is about process rather than ideology, access rather than allegiance, and observations drawn from my experience over the past six months working alongside the voluntary, community and social enterprise sector, particularly organisations representing people with complex, long‑term conditions. What has struck me most during this period is not overt resistance or hostility from government, but a quieter and more difficult dynamic to articulate: the sense that some voices are treated as inherently legitimate within policy‑making spaces, while others are cautiously, ever so politely, kept at a distance.

This became especially clear to me during discussions with the Department for Work and Pensions, when I, along with other VCSE leads, was told very plainly that the Department does not work with lobbying organisations. The explanation given was impartiality, engagement with lobby groups was said to risk bias, or at least the perception of bias, and therefore something the Department was obliged to avoid. At the time, this reasoning seemed fair enough. Civil servants are bound by codes of conduct that emphasise objectivity and neutrality, and departments are understandably alert to reputational as well as procedural risk.

The difficulty arose later, once I began to reflect more carefully on how influence actually operates in the UK.

Lobbying, in practice, is happening all the time. It occurs through parliamentary groups, briefings, policy papers and informal networks of expertise and familiarity. It is widely understood that many MPs, peers and ministers are members of organised advocacy or “friends of” groups, which are woven into the fabric of Westminster life. These groups convene discussions, shape narratives, frame both problems and solutions, and often help determine which issues are seen as credible or urgent. None of this is illegal, and much of it is arguably necessary in a system where no decision‑maker can be an expert in everything.

What is harder to reconcile is how this reality sits alongside a firm refusal to engage with certain other forms of organised advocacy. If patient organisations or VCSE groups representing those experiencing harm are characterised as “lobbyists” whose involvement would introduce bias, while other organised interests are engaged with routinely under different labels, then the issue is clearly not lobbying itself. It is the categorisation of who is seen as a legitimate contributor to policy formation, and who is not.

From within the VCSE sector, particularly in patient advocacy, engagement with government rarely feels strategic or polished. It is often reactive, driven by urgency rather than long‑term planning, and rooted in attempts to explain how policy plays out in lived reality. People come forward because systems are not working, because guidance does not align with experience, or because harm is occurring quietly and repeatedly in places that rarely attract sustained attention. These organisations are not generally seeking advantage or preferential treatment; they are trying to prevent damage, often with very limited resources and under considerable emotional strain.

Yet they are frequently treated as though their closeness to affected communities makes them problematic contributors rather than essential ones. Their input is framed as partial rather than evidential, as something to be managed rather than understood. Time and again, engagement is deflected into formal consultations that arrive late in the process, or into correspondence that is acknowledged but has little visible impact.

What troubles me most is how familiar this pattern feels when set against recent UK history. The Post Office Horizon scandal did not occur because nobody raised concerns. The contaminated blood tragedy did not persist because there was no advocacy. Long‑running failures in disability assessments, regulation, housing safety and environmental protection were not invisible; for years, they were articulated by those most affected. In each case, the problem was not the absence of voices, but the absence of sustained access to power at a point when intervention could still have prevented devastating harm.

By the time those voices were finally taken seriously, the damage was already embedded, and the response inevitably took the form of inquiries, apologies and retrospective reform.

This leads to an uncomfortable question that many people in the VCSE sector ask quietly, often among themselves: is access, in practice, shaped by resource? Not in the crude sense of bribery or explicit “pay‑to‑play” arrangements, but in subtler and more consequential ways, the ability to employ policy specialists, to navigate the language and rhythms of Whitehall, to sustain relationships over time, and to remain present even when an issue is no longer politically urgent. Well‑resourced organisations can afford to play that long game; many patient groups simply cannot.

If this observation sounds cynical, it may be because it points to a structural imbalance rather than individual intent. Systems can reproduce inequity without anyone actively choosing it, simply by privileging certain forms of professionalism, familiarity and endurance over others.

This is not an argument against lobbying, nor a criticism of any particular organisation or cause. It is, instead, a question of equity and consistency. If government departments decline to engage with patient or VCSE organisations on the grounds that they represent bias, while simultaneously drawing on the insight and influence of other organised interests, then the system is not neutral. It is selective, and selectivity, however well‑intentioned, has consequences.

So what could change? Not radical overhaul, but a change in approach. There is room to distinguish more clearly between campaigning and evidence, and to recognise that lived experience is not a contaminant but a form of intelligence. There is scope for departments to establish formal, protected routes for VCSE and patient input that are routine rather than exceptional, and that operate upstream of crisis rather than only in response to it. There is also value in being more honest about how influence actually works, and in acknowledging that refusing to engage with some groups does not level the playing field, but instead entrenches the advantage of those already fluent in policy environments.

Above all, there is an opportunity to treat early warning voices not as reputational risks to be managed, but as assets to good governance. Listening earlier is almost always less costly, financially, politically and morally, than dealing later with the aftermath of preventable failure.

What has stayed with me over these months is not anger, but a persistent frustration tinged with sadness. Many of the people trying to be heard are already exhausted, by illness, by bureaucracy, and by systems that seem only partially capable of seeing them. We speak often, as a country, about lessons learned, but lessons only matter if we are prepared to change who we listen to, and when.

The real question is not whether lobbying exists in the UK. It plainly does. The question is whose voices are able to travel far enough, early enough, to make a difference.

Sally

The post Who Gets a Seat at the Table? Lobbying and Access in the UK first appeared on ME Foggy Dog.

This blog is an informal write‑up of my recent trip to watch a Northampton Saints rugby match. It’s taken me a full week to have enough energy to write it, which probably tells you everything you need to know before you start reading.

Before anything else, I need to be clear that I rested as much as possible for five days before the trip. I knew the energy demand would be far beyond my usual limits. For those unfamiliar with M.E., even being a passenger in a car requires energy. This trip involved a four–to–five-hour round drive on motorways and dual carriageways, so I knew it would be a lot before even reaching the stadium.

Thankfully, Foggy’s Chauffeur (my Dad) was also attending and was more than happy to take on driving duties. I am physically unable to drive that far and still be functioning when I arrive at my destination!

Back in January, I decided to mark my 50th birthday (in October 2026) with a “birthday year” focused on doing things I love. Many of these are things I haven’t been able to do for at least six years, due to a combination of the pandemic, the cost-of-living crisis, and a worsening of my M.E. I also no longer have the friendship circle I had a decade ago, and I didn’t want a party that I’d have to organise myself. Instead, I chose to spread out a series of experiences, some I haven’t done in years, others I’d always wanted to do.

One of those was attending a Northampton Saints match at Franklin’s Gardens, something I hadn’t managed for well over a decade.

When I saw an advert for the Good Friday match against Castres Olympique, I asked my Mum and Dad if they fancied going, and things snowballed from there. In the end, Mum decided not to come. The hotel wasn’t accessible (no lift and no ground-floor rooms), and we knew there would be walking involved from the car parks to the stadium, something she struggles with due to mobility issues. She stayed home to dog‑sit Maggie instead. I’m not sure how Maggie felt about being denied a deluxe stay at the kennels, but she seemed perfectly content!

The trip also doubled as a chance to catch up with family, including my cousin, who joined us at the match. The afternoon before kick-off was essentially “Operation Rest As Much As Possible” until we left for the stadium around 6.30pm for an 8.00pm start.

We were extremely lucky that a friend of my cousin, and a season ticket holder, was also going. He kindly drove us from Towcester to Northampton and knew exactly where and when to park to make things as easy as possible. It’s worth noting here that I was the only person under 68 in the car, so age, as well as accessibility, played a big part in how the evening unfolded.

Accessibility and Inaccessibility Issues

Unfortunately, several aspects of the matchday experience highlighted significant accessibility problems:

• Digital-only entry
  Stadium access relied on QR codes on phones. When our friend’s phone had issues, he had to trek to the ticket office to sort it out, making us all late getting inside. Paper tickets need to remain an option, or at the very least, ticket desks should be positioned close to entrances.
• Fan zone (what I like to call ‘The Pen’, I felt like cattle)Having the fan zone immediately inside the gates felt like a serious design flaw. Mobile bars, queues of people, and extremely loud music from the entertainment tent created a bottleneck that everyone had to pass through to reach the stadium/their seats. It was packed, noisy, and didn’t feel safe. I could hear people shouting because they’d lost family members in the crowd, some of them children.I understand the motivation to create atmosphere and appeal to younger fans, but placing it here risks alienating others. Long COVID now affects many people, and those of us with chronic or energy-limiting illnesses might manage the main event occasionally, but these additional sensory and physical barriers make attending much harder. Quiet spaces and seating would be far more inclusive than forcing people through loud, crowded areas simply to reach their seats.
• Blocked walkways inside the stadium
  Once inside, we encountered further queues caused by player engagement activities with young fans. While this is a lovely idea, placing it next to a narrow (around five-foot-wide) walkway created a serious obstruction. People stopped to watch, crowds built up, and eventually our group had to climb over rows of seating to get around the blockage.The oldest member of our group was 76. A 76‑year‑old should not need to climb over seating to reach an aisle. This felt like an entirely avoidable health and safety issue. Could these engagements take place in a tunnel or designated space rather than blocking a main route?

What made this more frustrating was finding older guidance from Franklin’s Gardens (post-refurbishment) acknowledging that walkways can be a problem and asking fans to help keep them clear. If this is a known issue, why create blockages through organised activities before kick‑off?

While Franklin’s Gardens has excellent wheelchair provisions, other disabilities and mobility or energy-limiting conditions appear not to have been seriously considered. Wearing my M.E. advocacy hat, I would strongly suggest:

• Designated rest and quiet areas, ideally with sound damping (would benefit people with a wide-range of conditions)
• Reducing the amount of standing and walking required to attend (seating outside the stadium would be good!)

I’m not naïve, I know noise, crowds and busyness add to the match-day atmosphere. But they are also excluding increasing numbers of people from attending at all. With Long COVID still rising, this affects existing season ticket holders and potential future fans alike. Ultimately, that impacts the club financially too.

One final point: our driver insisted we leave five minutes before the end. I wasn’t thrilled, especially if the match was close, but he explained that post‑match press activity often blocks walkways and traps crowds inside the stadium. For me, that kind of delay would have made getting back to the hotel, and resting, significantly harder.

Again, this feels avoidable. Could the press area be moved somewhere that doesn’t obstruct walkways and exiting? After a match, when people may also be tired or have had a drink or four, impelling them to clamber over seating to leave is an accident waiting to happen.

Despite all of this, I had a fantastic time. I overindulged in fun, noise, and alcohol (and paid for it badly the next day, I’m alcohol intolerant but temporarily forgot that fact). The experience showed me that attending a match is something I can manage as an occasional treat, but it’s not realistic on a regular basis. That’s a real shame, but until venues become genuinely friendly to people with energy‑impaired conditions, I’ll have to remain an armchair supporter.

Oh, and Saints won!

There’s another match on tonight, and I’ll be watching it from the comfort of my sofa while still recovering from last week’s adventure.

I’d be more than happy to talk to Saints management about practical ways they could improve inclusion for people with energy‑limiting illnesses.

Sally

The post Rugby as an Energy‑Limited Fan: My Northampton Saints Matchday Experience first appeared on ME Foggy Dog.

In the space of a week, two separate political decisions have shaken confidence in the UK’s commitment to providing stable, compassionate, and evidence‑based healthcare. One affects people with very severe M.E./C.F.S., who have once again seen promised specialist care pushed into the distant future. The other concerns the sudden withdrawal of specialist training posts for resident doctors during ongoing industrial action. Although these issues emerged independently, and in that order, they reveal a single, deeply troubling pattern: political manoeuvring is repeatedly being allowed to override the health and wellbeing of the public.

From ME Foggy Dog’s perspective, these decisions look less like strategic planning and more like a series of reactive, inconsistent choices that leave vulnerable people and essential clinicians caught in the crossfire.

The first shock came when MEAction UK reported that the Department of Health and Social Care had paused plans to commission specialist care for very severe M.E./C.F.S. until at least April 2027. This pause was not prompted by new clinical evidence or a reassessment of need. Instead, it stemmed from administrative upheaval, shifting responsibilities between integrated care boards and the planned abolition of NHS England. The Final Delivery Plan had relied on NHS England oversight, but with that structure disappearing, no interim solution has been offered. As a result, those with the most severe form of ME/CFS, people who are bedbound, tube‑fed, or unable to tolerate light or sound, are once again left without the specialist care the Government had already agreed was essential. For a community that has endured decades of neglect, disbelief, and systemic failure, this delay is not just disappointing; it is dangerous. It reinforces the long‑standing pattern in which M.E./C.F.S. services are deprioritised the moment political or organisational pressures arise.

Shortly after this, the medical workforce was hit with its own destabilising announcement. According to reporting from LBC, the Government withdrew 1,000 promised specialist training posts for resident doctors after the BMA did not cancel planned strike action. These training posts were not a token gesture. They were a response to a well‑documented shortage of specialists across the NHS,  a shortage the Government itself had repeatedly acknowledged. To revoke them because negotiations did not unfold as hoped is an extraordinary decision that places political leverage above public health.  The consequences extend far beyond the doctors directly affected. Every patient waiting for treatment, every service struggling to recruit, and every community already feeling the strain of an overstretched NHS will feel the impact. From the outside, it is difficult not to interpret this as punitive politics rather than responsible leadership.

Although these events unfolded separately, ME Foggy Dog sees them as part of the same pattern. In both cases, the Government publicly recognised the need for specialist roles and services. In both cases, commitments were made, and in both cases, those commitments were withdrawn not because the need had changed, but because political circumstances shifted.

This is what makes these decisions so concerning. They suggest that essential healthcare provision, whether for training future specialists or caring for the most severely ill, is vulnerable to political winds rather than anchored in long‑term planning, compassion, or evidence. From the outside, the inconsistency appears vindictive and nonsensical, as though the needs of patients and clinicians are secondary to the desire to appear firm or uncompromising.

The NHS and wider medical profession have undeniably let down the M.E./C.F.S. community for many decades. The lack of biomedical research, the absence of specialist services, and the persistence of outdated narratives have caused profound harm. Yet despite this history, we fully recognise that doctors, nurses, and specialist clinicians are essential to building the future we need. They are integral to progress, to rebuilding trust, and to delivering the care that has been missing for far too long. That is precisely why these political decisions are so damaging. Undermining the medical workforce harms everyone,  including those with M.E./C.F.S. who are already fighting for recognition and support. Delaying specialist M.E./C.F.S. services prolongs suffering and deepens the crisis faced by the most severely affected.

This is the question that lingers: if the Government agrees that specialist roles are needed, why are they being withdrawn, delayed, or used as leverage? What purpose does this serve? Whether the motivation is budgetary, political, or simply performative, the outcome is the same: patients are left without care, clinicians are left without support, and the public is left wondering whether their health is truly a priority. The UK cannot continue down this path. Healthcare planning cannot be dictated by political bluster. Specialist training posts should not be bargaining chips. Essential services for very severe M.E./C.F.S. should not be paused because of administrative reshuffling. The public deserves better, and so do the clinicians who keep the system running.

ME Foggy Dog urges the Government to restore the promised training posts, provide an interim, actionable, plan for very severe M.E./C.F.S. care, and commit to consistent, patient‑centred decision‑making. The health of the nation should never be subject to political gamesmanship. It is time for leadership that recognises this and acts accordingly.

The post Political Decisions Are Undermining UK Healthcare first appeared on ME Foggy Dog.

Dear Secretary of State for Health and Social care, and Minister for Public Health and Prevention,

Across the UK and internationally, clinicians and patient communities are observing a deeply concerning trend: individuals who experience multiple viral infections within a short period are increasingly developing long‑term, debilitating conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S.). One recent case involved a person who contracted seven  viral infections (more than 4 different viruses) in six months, with M.E./C.F.S. symptoms appearing only days after the seventh. Whether this was the cumulative effect of repeated immune stress or something specific to that final infection remains unclear, but the pattern itself is becoming impossible to overlook.

COVID‑19 continues to circulate widely, and reinfections have become a normal part of daily life. Each infection carries a risk of immune disruption, and immune dysregulation increases susceptibility to further infections. Repeated infections within short intervals are no longer rare, and this cycle is accelerating the number of people developing post‑viral chronic illnesses, particularly M.E./C.F.S., for which there are no known cures or approved treatments.

A growing body of peer‑reviewed research has shown that SARS‑CoV‑2 can cause long‑lasting immune abnormalities, including T‑cell exhaustion, reduced naïve T‑cell populations, persistent inflammatory signalling, disrupted interferon responses, and evidence of viral persistence in tissues. These findings have been documented in leading journals such as Nature, Cell, Immunity, and The Lancet (see links at the bottom of this open letter). While the long‑term consequences are still being studied, the direction of evidence is clear: COVID‑19 leaves many individuals more vulnerable to subsequent infections, and those infections are more likely to have severe or long‑lasting consequences.

Research comparing M.E./C.F.S. and Long COVID has identified strikingly similar biological features, including impaired energy metabolism, autonomic nervous system dysfunction, neuroinflammation, abnormal cytokine profiles, and post‑exertional symptom exacerbation (or Post Exertional Malaise). This overlap suggests that COVID‑19 is acting as a mass triggering event for M.E./C.F.S.‑like illness, both directly and indirectly.

The UK is already experiencing the consequences.; workforce participation has declined, long‑term sickness rates have risen, disability claims continue to increase, and shortages in skilled labour are becoming more pronounced. The NHS and social care systems are under growing pressure. Long COVID alone has removed an estimated hundreds of thousands of people from the workforce, and the secondary wave, those developing M.E./C.F.S. following repeated infections, adds an additional and largely unmeasured burden. If this trend continues, the economic consequences will be long‑lasting and severe.

Despite mounting evidence, current policy approaches still assume that reinfections are low risk, that repeated viral exposure is acceptable, and that long term consequences are minimal. This assumption is no longer supported by emerging data. The absence of a coordinated national strategy to reduce transmission, improve indoor air quality, or support research into post‑viral illness leaves the UK vulnerable to escalating health and economic costs.

There are clear steps that could mitigate this growing burden: Improving ventilation and air filtration in public buildings, schools, and workplaces would reduce transmission of airborne viruses. Promoting high‑quality masks in healthcare and other high risk settings would protect both staff and patients. Public health messaging should reflect current scientific understanding of reinfection risks. Increased funding for M.E./C.F.S. and Long COVID research, expansion of specialist clinics, and support for biomedical investigation into post‑viral illness mechanisms are urgently needed. Protecting the workforce through flexible policies, reasonable adjustments, and employer guidance would help retain skilled workers. Finally, repeated infections must be recognised as a systemic risk and incorporated into national health security planning, including monitoring and reporting reinfection rates and long term outcomes.

Our population’s immune resilience has been repeatedly challenged over the past six years. Many people now experience colds and flu more severely, recover more slowly, and are more susceptible to additional infections. For some, it has become a form of Russian Roulette, never knowing which infection may lead to a life‑altering chronic illness.

The question is no longer whether this will affect the UK’s health and economy. It already has. The question now is whether policymakers will act decisively, or allow the burden to grow until it becomes unmanageable.

Yours sincerely,

Sally Callow

Person living with M.E since 2006, M.E. campaigner since 2014, and Founder of social enterprises ME Foggy Dog and Stripy Lightbulb CIC.

Open letter also emailed to both the Secretary of State and Minister for Public Health and Prevention.

Peer‑Reviewed Research on Long‑Lasting Immune Abnormalities After SARS‑CoV‑2 Infection

Immunity – “Immune imprinting, breadth of variant recognition, and SARS‑CoV‑2 reinfection” (2022)
https://pubmed.ncbi.nlm.nih.gov/35148837/

Nature – “Longitudinal analyses reveal immunological misfiring in severe COVID‑19” (2020)
https://www.nature.com/articles/s41586-020-2588-y

Nature Immunology – “SARS‑CoV‑2 infection induces long‑lived bone marrow plasma cells in humans” (2021)
https://www.nature.com/articles/s41586-021-03647-4

Nature – “Immunological dysfunction persists for 8 months following initial mild‑to‑moderate SARS‑CoV‑2 infection” (2021)
https://www.nature.com/articles/s41590-021-01113-x

Cell – “Longitudinal immune profiling reveals distinct immune response patterns in COVID‑19” (2020)
https://www.cell.com/cell/fulltext/S0092-8674(20)30610-3

Nature – “SARS‑CoV‑2 infection and persistence throughout the human body and brain” (2022)
https://www.nature.com/articles/s41586-022-05542-y

Frontiers in Aging Neuroscience – Intestinal barrier compromise, viral persistence, and immune dysregulation converge on neurological sequelae in Long COVID (2026)

https://pmc.ncbi.nlm.nih.gov/articles/PMC12864456/

The Lancet – “Long COVID: pathophysiology and mechanism” (2023)
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)00355-4/fulltext

Nature Communications – “SARS‑CoV‑2 infection induces long‑term immune dysregulation” (2023)
https://www.nature.com/articles/s41467-023-38129-0

The post The Emerging Public Health and Economic Threat of Repeated Viral Infections and M.E./C.F.S. : Open Letter to Wes Streeting and Sharon Hodgson MP first appeared on ME Foggy Dog.

For us, “Cyberchondria” isn’t a quirky new buzzword, it’s a rebranding of the same old stigma that has harmed people with M.E. for generations.

People with M.E. often spend years, sometimes decades, seeking answers. Many never receive a diagnosis at all. Those who do frequently endure endless rounds of tests, contradictory explanations, clinicians who have never been trained in M.E. dismissal of symptoms as stress, anxiety, or “just being run down”.

The UK’s ME/CFS Delivery Plan openly acknowledged what patients have known for years, most healthcare professionals receive little to no education on M.E. (something I have been tackling with Stripy Lightbulb CIC since 2018)

When M.E. patients turn to the internet: AI, patient forums, charity websites, research summaries, lived‑experience blogs, it’s not because they’re irrational or anxious. It’s because they’re trying to fill a knowledge gap that the healthcare system created.

In many cases, the internet genuinely does contain more accurate, up‑to‑date information on M.E. than the average GP has been taught.

That’s not “cyberchondria”, that’s the survival instinct of people experiencing poor care.

M.E. has long been entangled with medical misogyny. Historically, women reporting complex, poorly understood symptoms were branded with terms like “Hysteria”, “Hypochondria”(sound familiar?!), “Somatisation”, “Anxiety-driven illness”.

These labels weren’t just inaccurate, they were weaponised to silence patients and avoid investigating their symptoms properly.  So when a new term like “Cyberchondria” emerges, aimed disproportionately at people who have been dismissed for years, it’s hard not to see the pattern.

How is this any different from calling patients hysterical?  It’s simply updated language for the same old disbelief.

M.E. is frequently misdiagnosed as Depression,  Anxiety,  Burnout, Fibromyalgia,  Long COVID and “Medically unexplained symptoms”. Patients are often told their symptoms are psychological long before anyone considers a biomedical explanation. Many are left to research their own symptoms because no one else is doing it for them.  Then, when they do research, they’re labelled cyberchondriacs.

It’s a trap with no exit.

One of the most troubling developments is the suggestion that people labelled as “Cyberchondriacs” should be offered Cognitive Behavioural Therapy (CBT) to reduce their “health anxiety.” Reminder, CBT is something our community has fought very hard against for years and NICE has now said CBT should not be recommended as a ‘treatment’ for M.E. My concern is that a person will be told they have “Cyberchondria” and to do CBT, delaying the M.E. diagnosis even further.  CBT could make their symptoms worsen significantly before they have even had the chance to obtain an accurate diagnosis.

This “Cyberchondria” framing does two harmful things:

1. It shifts attention away from the symptoms that drove the person online in the first place.
Instead of asking “Why did this patient feel unheard or unsupported?” the system asks “How do we stop them Googling?”

2. It encourages clinicians to ignore or minimise physical symptoms.
If a patient is pre‑labelled as anxious, their reports of pain, fatigue, neurological issues, or post‑exertional malaise are more likely to be dismissed.

For the M.E. community, this is painfully familiar, we’ve been here before.

CBT is not inherently harmful to the wider population but using it as a tool to redirect attention away from biomedical symptoms is a step backwards. It risks reinforcing the very attitudes the ME/CFS Delivery Plan is trying to dismantle.

People with M.E. don’t turn to the internet because they’re irrationally worried. They turn to the internet because their symptoms are real,  their experiences are dismissed, their clinicians lack training, their diagnostic journey is long and lonely, their condition is poorly understood, and their community has been historically disbelieved

If the healthcare system provided timely, accurate, compassionate care, patients wouldn’t need to do their own research.

“Cyberchondria” isn’t the problem, the problem is a system that leaves patients with no other option.

The M.E. community deserves better than recycled labels and psychological explanations for biomedical symptoms. We deserve clinicians who are educated, curious, and willing to listen. We deserve a system that recognises the harm caused by decades of dismissal and works to rebuild trust, not undermine it further.

If healthcare professionals want to reduce “Cyberchondria,” the solution is simple. Give patients accurate information, timely diagnosis, and respectful care. The Googling and AI questions will take care of themselves.

The post Cyberchondria, A New Label for an Old Problem in M.E. Care first appeared on ME Foggy Dog.

The UK Government’s 2026 shift toward non‑pharmacological treatments (NPTs) and expanded social prescribing is being promoted as a move toward “personalised care,” but for people with Myalgic Encephalomyelitis  (M.E), this policy change carries serious and often overlooked risks. This blog explores why the M.E community is uniquely vulnerable in this new landscape, and why urgent safeguards, training, and harm‑reporting systems are essential.

While this policy shift may sound positive on the surface, it poses significant risks to people with M.E,  because the very workforce delivering these interventions is not trained in M.E (not medically qualified) or post‑exertional malaise (PEM).

This is not solely our opinion, this is acknowledged by the UK Government itself.                            

The Department of Health and Social Care’s own ME/CFS Delivery Plan states that:

“Better education of professionals” is at the forefront of a government plan to improve the lives of patients with ME/CFS.

It also confirms that new training is needed because current understanding is inadequate:

The plan aims to “increase understanding and ensure signs are not missed” to help combat stigma faced by people with ME/CFS.

This is the Government openly admitting that:

• Healthcare professionals are not adequately trained
• M.E signs are being missed
• Stigma persists due to lack of knowledge
• Education is a priority because it is currently insufficient

Yet despite this, the Government is expanding NPTs and social prescribing without first fixing the training gap OR creating a system to report harms from NPTs.

This is a recipe for harm.

The UK Government is rapidly scaling up:

• Social prescribing
• Community wellbeing activities
• Exercise‑based programmes
• Lifestyle interventions
• Psychological therapies
• Nature, arts, and volunteering schemes

But social prescribers, link workers, and community providers still receive no mandatory M.E/PEM training (this issue will also impact at least half of those living with Long COVID who also experience PEM – they may or may not have a M.E diagnosis)

This creates a high‑risk environment:

NPTs often involve exertion (physical and mental)

For people with M.E, exertion can trigger post‑exertional malaise (PEM), the core, disabling symptom of the disease.

Providers may unknowingly recommend harmful activities

Without training, they may encourage:

• Graded exercise
• “Building stamina”
• Nature walks
• Volunteering
• Group activities
• Mind‑body programmes

All of which can cause long‑term deterioration.

NPTs are incorrectly assumed to be “low risk”. For M.E, they are not low risk,  they can be catastrophic.

The Government’s strategy aims to reduce reliance on medication and shift toward “low‑cost, community‑based” alternatives.  For M.E, this is harmful because it:

– Reinforces the false belief that M.E is a “wellbeing” issue, if policymakers see M.E as something treatable through activity or lifestyle changes, it undermines recognition of M.E as a serious biomedical disease.

– Diverts funding away from biomedical research, when NPTs are framed as the solution, investment in:

• Immunology
• Neurology
• Metabolic research
• PEM mechanisms
• Biomarkers

…becomes even harder to secure.

– Embeds outdated narratives, the more M.E is pushed into community settings, the more it risks being misclassified as:

• A behavioural issue
• A motivational problem
• A social isolation challenge

This reverses years of advocacy progress.

– Reduces clinical engagement, less contact with clinicians means fewer opportunities for:

• Diagnosis
• Data collection
• Research participation
• Specialist referral

This widens the research gap.

Why this matters for the Shake It UP Campaign

As NPTs expand, harms will increase,  not because providers are malicious, but because they are untrained.

Right now (despite M.E. Foggy Dog campaigning on this issue since 2021):

• There is no national reporting system for harms caused by NPTs
• There is no requirement for link workers to record adverse outcomes
• There is no mechanism for M.E patients to report deterioration
• There is no dataset informing policymakers of risks

This means the Government is making national policy without understanding its consequences.

We need a reporting system because:

• PEM‑triggering activities can cause long‑term or permanent deterioration
• NPT harms are currently invisible in NHS data
• Policymakers assume NPTs are “safe”
• The M.E community becomes collateral damage
• Future policy will be shaped by incomplete evidence

If the Government wants to expand NPTs nationally, it must also commit to tracking harms nationally.

What We’re Calling For

The key ask of Shake It UP-

– A national reporting system for harms from NPTs. 

If NPTs are rolled out at scale, harms must be measured at scale.

We also ask for assurances on –

– Recognition that M.E requires biomedical research

NPT expansion must not replace scientific investment.

– Policy that acknowledges M.E as a complex biomedical disease

Not a wellbeing issue or a lifestyle problem.

–  Inclusion of M.E experts and patients in policy design

Nothing about us without us.

– Mandatory M.E/ PEM training for all social prescribers and link workers (though these are not medically trained HCPs so this is unlikely to come to fruition)

No training = unsafe care.

The Government’s 2026 shift toward non‑pharmacological treatments may reshape care across the UK, but without M.E‑specific training, safeguards, and proper oversight, it risks exposing our community to avoidable harm. As long as social prescribers and community providers remain untrained in M.E and PEM, people with M.E will continue to face unsafe recommendations, worsening health, and a system that assumes these interventions are “low risk” simply because no one is measuring the consequences.

If the DHSC wants to build policy around NPTs, it must also commit to collecting the data that shows how these interventions affect people with complex, energy‑limiting conditions. Without a national mechanism to record harms, policymakers are making decisions in the dark, and the M.E community pays the price.

Shake It UP exists to make sure that doesn’t happen. We will keep pushing for transparent harm‑reporting systems, and for evidence‑based policy that recognises M.E as the serious biomedical disease it is. Our message remains clear: the M.E community must be understood, respected, and protected in every decision that shapes the future of care.

The post Shake It UP: Exposing the Risks of the UK Government’s 2026 Non‑Pharmacological Treatment Strategy for M.E first appeared on ME Foggy Dog.

The post Back to Basics: 2026 is the Year of Focus For M.E. Foggy Dog first appeared on ME Foggy Dog.

For those of you who have been long-time Foggy Followers, you’ll know that my ongoing struggle with weight has been a recurring theme over the last seven-ish years, primarily due to an increasingly necessary sedentary lifestyle that has allowed the pounds to slowly but surely accumulate. This was mainly because my M.E. has slowly worsened over that time and my energy envelope has been getting smaller and smaller.  While I have managed to ‘successfully’ diet several times, losing around 7-14lbs each time, the weight inevitably crept back on, beginning to severely impact my self-confidence and self-esteem. Combined with Perimenopause-related shape change and weight gain (acknowledged by my GP) I felt the need to do something more drastic – such as changing my behaviour with food. Growing increasingly frustrated with conventional methods, I began actively searching for different, non-exercise-based weight loss solutions about three months ago, which is how, in August, an advert for a Neuro-Linguistic Programming (NLP)-based weight loss program popped up on my Facebook feed. This blog IS NOT AN ADVERT and as such I will not name the specific programme or identifiers. I also want to acknowledge personal choice and responsibility. If other people with M.E. choose to sign up to this weightloss programme, that is their own personal choice, but I want to make sure they know the risks specific to M.E. and Post Exertional Malaise.

The easiest way for me to highlight this issue is to post the emails I have now sent to various organisations with my concerns. These emails are below.

Email to XXX, the NLP provider.

Hi XXX team,

I just wanted to drop you a note as a current user who’s had a really positive experience with your NLP programme, but also has a few concerns I hope you’ll take seriously.

I’ve been using XXX for just over two months now, and I’ve lost about a stone without really trying. It’s been brilliant in terms of retraining my brain around food and habits, so thank you for that!

However, I’ve noticed something important. As you know, the programme is nudging my subconscious to increase my movement, which, for most people, is great. But I live with M.E, and for me, increased activity can be dangerous. I crashed hard during the first two weeks because I didn’t realise I was doing too much. When I say ‘too much’ I mean doing the washing up when I already felt tired, climbing a flight of stairs when I didn’t have enough energy. I’m not talking about doing an exercise class or 3 mile hike. Now I actively resist the urge to move more, even when my body feels like it wants to, because I know the energy I do (and don’t) have. It is really difficult to resist by the way!

Full disclosure – I run two social enterprises for the benefit of the M.E. community and have been a M.E. campaigner for over a decade.

Here’s where my concern deepens. I heard X talking about NICE running a clinical trial involving XXX alongside Mountjaro users, to help change behaviour and mindset so people can maintain weight loss after coming off the jabs. That makes sense in theory, but I’m worried about what happens if XXX becomes widely recommended through the NHS, especially to people with M.E. Newly diagnosed people will not know about PEM and the risks of increased activity.

There are already quite a few pwME in the XXX Facebook group saying they simply exercise/move as much as their body wants them to. The problem I have with that is that the subconscious won’t know why we have to restrict energy usage. I’ve had M.E. for nearly 20 years, I would love to go hiking or go to a gym but I know the physical consequences would be too bad. I know the risks and still got caught out, so I worry about how many others might be harmed if this isn’t flagged properly. The subconscious encouragement to forget ‘learned behaviours’ like exercise avoidance is powerful, but there’s a reason those behaviours were learned in the first place, specifically with M.E.

Post-Exertional Malaise (PEM) is the defining characteristic of Myalgic Encephalomyelitis (M.E.) and is the reason people living with the disease have to be very careful about energy usage (physical, emotional, cognitive) – here is more info on what PEM is – https://www.s4me.info/docs/PEM_Factsheet.pdf  I fully appreciate that X isn’t a medical professional – I’m not either, that’s why I am supplying the link/info.

Best wishes,
Sally

This was the response from XXX

Hi there Sally,

Thank you for your email.

I sincerely appreciate you sharing your experience and concerns with us.

The (brand name) are designed to nudge you to make healthy choices for your own body, and not push yourself further than is healthy for you, and this includes with movement.

It’s really helpful to hear the experiences of our (brand name), and I will pass your experience onto our team so we can improve our programme.

Regarding our clinical trials, these aren’t being conducted with NICE, but instead a university based in the UK. Once our clinical trials are completed, NICE can then decide whether XXX should be prescribed by the NHS.

Again, we sincerely appreciate you sharing your XXX journey with us, and most importantly your experience of XXX as someone with M.E.

 

READER: It also needs to be said that the vast majority of people who meet M.E. diagnostic criteria are not diagnosed. There is a large chunk of people who won’t know that increased activity (not solely exercise) may have negative consequences. The caveat should be generic and not M.E-specific. Such as ‘if you find you feel increasingly unwell when your activity increases please pause or restrict how much you are moving’ (or something like that!). If we ONLY stick to actual diagnoses too many will be missed. No point saying ‘consult your GP’…how many would know enough about M.E./ PEM?

Then I contacted NICE (no reply received yet)

Dear NICE team,

I’m writing as someone with lived experience of M.E (19 years) and as a current user of XXX, the NLP-based weight loss programme that I understand is now being trialled alongside Mountjaro as part of a NICE initiative. I want to share my personal experience and raise concerns about the potential risks this programme may pose to people with M.E, especially if it goes on to become widely recommended through the NHS.

I’ve been using XXX for over two months and, on the surface, it’s been very effective,  I’ve lost around a stone without consciously trying, and I can see how it’s helping to retrain my brain around food and habits. However, I quickly noticed the programme subtly encouraging my subconscious to increase physical activity. I crashed badly during the first two weeks because I wasn’t aware I was doing too much. Now, I actively resist the urge to move more, even when my body feels like it wants to, because I know the energy I do (and don’t) have. This is where the problem lies. XXX’s NLP approach seems to override “learned behaviours” like exercise avoidance, which, in the case of M.E, are not maladaptive but protective.

NICE’s own guidelines for ME/CFS (2021) explicitly state that graded exercise therapy should not be offered, and that people with M.E should be supported to stay within their energy limits. Encouraging increased activity through subconscious suggestion risks bypassing the conscious pacing strategies that are essential for managing M.E safely.

Full disclosure – I run two social enterprises for the benefit of the M.E. community and have been a M.E. campaigner for over a decade.

To be clear, I acknowledge that this XXX NLP is not specifically targeting people living with M.E. I would suggest that under-diagnosis is an issue for the M.E. community and that brings with it associated risks. I’m deeply concerned that if XXX is adopted more broadly within the NHS, it may be recommended to people with M.E. without adequate safeguards. I’ve seen multiple posts in the XXX Facebook support group from others with M.E. who are pleased to be increasing their activity, unaware of the potential harm. I know the risks and still got caught out.

I’m not writing this as a campaigner, but as an individual trying to lose weight safely. I would be grateful to know who within NICE is overseeing this trial, and whether there is a process for raising concerns about the inclusion of vulnerable groups like pwME. I’d also like to understand how NICE plans to ensure that behavioural interventions like NLP are aligned with its own ME/CFS guidelines. At the very least, a caveat on the risks to specific patient groups is needed.

Thank you for taking the time to read this. I hope my experience can help inform a more nuanced approach to behavioural support in weight management, one that recognises the complexity of conditions like M.E.

Best wishes,
Sally Callow

I then emailed the NICE email to the Mayor and CEO of the ICB supporting this trial in their region with this additional sentence –

I also wish to express concern about the lack of transparency around the XXX/Mounjaro trial. I am currently trying to find more information, and would appreciate any details you can share, or the opportunity to discuss further to ensure people with M.E. are not inadvertently put at greater risk.

I received a confirmation email a few weeks ago and was advised this has now been given to the correct people/departments.

Reader, I need to make a few things 100% clear.

• On day one of starting XXX, I knew it would be encouraging me to do more. I thought, because I know my energy limits, that wouldn’t be an issue. I was wrong.
• XXX does not target pwME with their advertising.
• XXX deliberately says that people with any conditions who shouldn’t/can’t exercise should still try to ‘move more’ even if it is 1 minute more than the previous day/week (GET anyone?!) ‘Any increase is good’ (paraphrasing but it is said repeatedly in coaching videos)
• I have now seen 15+ pwME and people with a ‘chronic fatigue’ or CFS diagnosis posting in the support group. I get the impression most don’t know about PEM and associated risks IF they have M.E. But, I am in that group as an individual NOT an M.E. campaigner. The group is also very heavily moderated as it is all about ‘positive psychology’, I wouldn’t get very far if I did post my concerns! Which Is why I have been sending private emails for a few months and reaching out to external agencies.
• I DID crash badly for the first 2 weeks. I thought it was after-effect of my holiday, but with hindsight I was able to see that my activity had increased substantially without me thinking about it. In the 6 years we have had our dog Maggie, I have only once taken her for a walk after lunchtime (because I rarely have the energy in the pm), but in the first 2 months of XXX I took her out 7  times after 3pm because I ‘fancied some fresh air’ and wanted to stretch my legs. I also restarted doing my ironing – I usually ask Foggy’s Chauffeur to do it for me or I wear it crumpled! I  have also rediscovered my love of baking and cooking. Not because I am looking forward to eating the end results but because I want to DO MORE. I had thought it was all because of the positive psychology side of XXX and maybe I had been in a bit of a slump. But 3 weeks in, I realised it was the subconscious urging for me to do more. This is where I believe the danger lies. Prior to AUgust 2025, I didn’t do much baking/cooking for pleasure as I found it exhausting – that’s the point I’m making here.
• I would not touch NLP for M.E with a bargepole as M.E is not a behavioural issue but a biological disease. In many people, eating and food habits are behavioural (what, time, amount) and I believe are often down to learned behaviour and that’s why I started this programme in the first place.
• There is the argument that NLP is snake oil and doesn’t work. There are plenty of people in the FB support group unhappy that they haven’t lost any weight in 3 months. But I need to say that it has worked for me – I am an N=1. Though, historically, I have proven myself susceptible to hypnotherapy and I see NLP as similar. Power of suggestion and repetition, and all that works on me.

I am continuing on XXX and will be for the foreseeable future. I had wanted to keep my weightloss ‘journey’ private but feel this is too big an issue to not speak out about potential issues. However, I won’t be posting about future weightloss as that is a private matter. XXX has definitely helped me to change my eating habits, I now only eat when I am hungry, and XXX has shut down what they call ‘food noise’. I just wish it wasn’t so blooming hard to resist the urge to move more.

The post NLP Weight Loss and M.E.: Unpacking the Risks of ‘Moving More’ with Post-Exertional Malaise first appeared on ME Foggy Dog.