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.

Hello!

Many of you will have seen recently that I have been doing a work/health balance audit; a month ago I deliberately stepped back from long-running M.E. work projects, projects that have been very brick wall-like and relentless in impacting my energy, and exited some collaborative NHS-related work groups (unpaid) to free up some time and energy to concentrate on my own projects.  In recent weeks, I have turned my attention to ME Foggy Dog’s online presence; specifically, our social media output. There are multiple reasons why but my conclusion is that something needs to urgently change before the impact on my health (the risk has been growing for a while) significantly ramps up. As of October 2025, I was managing (Twitter, Instagram, Facebook, YouTube, Bluesky, Linkedin (company page), and 3 months ago TikTok recent joined our collective of ‘socials’), seven different social media channels. It has become unmanageable. The reasons why I have been doing this are laid out below.

For almost eight years, I’ve held steady around 10,000 followers across all socials. That sounds great, right? A huge community! Except when you look at the reality, it’s mostly an illusion. I’ve been quietly deleting long-time inactive  and bot follower accounts for ages, and the truth is, the consistent, frequent engagement comes from the same amazing 500 people who have been algorithm-selected to see my content.  You know who you are, and you’re the reason I love this community. However, it no longer makes sense for my status quo to continue. Spending vast amounts of energy generating unique content for so many different channels, channels that already have limited engagement, is a massive waste of precious energy. My current system of ‘content distribution’ is neuro-exhausting. I kept adding channels to ensure reach, but every single platform demands a different format, differences in content character length, a vertical video for Instagram, a short clip for X, a long post for Facebook, a professionally worded summary for LinkedIn. The need to reformat and maintain seven separate presences is utterly exhausting, and it has a terrible energy ROI for someone managing a chronic illness. It’s an endless, multi-format treadmill that drains energy I simply don’t have. This is the moment I finally listen to my own body and my own advice where social media output is concerned. I have concluded the answer isn’t to work harder; it’s to work smarter and less.

If there’s one piece of advice I always give, it’s this: Put your energy and health first, sound advice I wasn’t following myself. ‘Do as I say, don’t do what I do’ is no more.

Spending hours creating content just to reach a very small, already loyal core group across a dozen different channels is nonsensical. In M.E terms, the energy ROI is close to zero. It’s a lot of work for an effect I could achieve with a single, simple email (remember that bit, I get back to that further down!).

Truthfully, I’ve fallen out of love with social media. Not with the community, but with the platforms themselves. What once felt like a vibrant, connected space has become fragmented and noisy. This is the part that makes me genuinely sad. I deeply miss the vibrant, connected online M.E. community we had between 2014 and 2020. Back then, it felt like a home,; a place to share, learn, and support without having to fight an algorithm just to see each other’s posts. Now? We are scattered. The platforms have changed (not for the better in my opinion), the noise has increased, we can no longer find each other easily, and that sense of cohesive community is long gone.

Long time Foggy Followers will know ME Foggy Dog started out as a social media driven fundraiser ‘brand’. To do this, I paid for social media marketing training. I literally learned how to use Twitter (I hadn’t used Twitter personally and had no clue how to use it in 2014!) and how to use Facebook as a ‘business page’. I used the training services of Tarryn Hunt (thoroughly recommend!), a local self-employed social media marketing and business expert. This knowledge was immensely helpful when I launched ME Foggy Dog and I am thinking of doing similar again now. Twitter (now (but never) X) and Facebook have changed so much over the past 11 years, they would likely be unrecognisable if placed side by side in a lineup! In 2016, I also launched my own social media marketing company so I know I am fully capable of creating effective and impactful social media content. The problem in recent years has been limited time and energy to learn the latest algorithm and strategy changes of each platform or put the effort into creative posts. That will hopefully change now I am freeing up some time and energy. I want to be consistently good on 4 channels, not ‘ok’ on 7.

Audit conclusion:  I’m making some serious cuts. Starting now, I am officially closing down ME Foggy Dog’s Bluesky and Instagram channels at the end of the week. Our TikTok page was shut down two days ago. Thank you to all who have followed ME Foggy Dog on those channels, your support has helped shape our work and I will always be grateful.

This isn’t an easy decision, but it’s 100% necessary. I’m focusing on my health, and frankly, my health budget no longer covers chasing algorithms and our M.E. community across multiple platforms as part of a much wider workload.

The very best, most reliable way to stay in the loop, the place where you’ll get the news directly without the algorithm deciding if you’re worthy, is to sign up for our newsletter.   It’s simple, low-energy, and it’s the most direct line of communication we have. Our newsletters haven’t been overly regular until now because it felt like an extension of mass duplication and poor use of my limited energy. However, reduced social media channels means this becomes a good alternative. I figure virtually everyone has at least one email address and if you support ME Foggy Dog and want to keep up to date with our latest news, why wouldn’t you sign up FOR FREE?!  The plan right now is to put out fortnightly newsletters that summarise our work activities and important updates.  Stay in the loop! Sign up in our footer.

This isn’t about disappearing; it’s about shifting my focus so I can keep showing up in a meaningful, sustainable way. Thank you, as always, for your understanding and continued support!

Sally

and Foggy (OBVIOUSLY!)

The post From Seven Platforms to Four: A Health-First Social Media Reset first appeared on ME Foggy Dog.

Foggy Followers! 

Halloween is creeping up, and we’ve brewed up something special for the M.E. community that doesn’t require broomsticks, bonfires, or bouncing off the walls with energy we don’t have.

Introducing… Halloween Storytime with Foggy’s P.A.! 🧙‍♀️📖

We know that joining in with seasonal fun can be tricky when you live with M.E., energy is in short supply. That’s why this event is designed to be as easy and accessible as possible. You can tune in from your bed, sofa, or wherever you’re most comfy. Dress up spookily if you fancy it (or not, your PJs totally count as costumes in our book).

Foggy’s P.A. will be reading aloud from Toby and the Silver Blood Witches, a brilliant book written by fellow pwME Sally Doherty. With a reading age of 9–11, it’s just spooky enough to feel Halloween-y, but not so scary it’ll make your heart race like you’ve just climbed Everest. No fright night here, just a gentle, magical story with witches, mystery, and a sprinkle of eerie fun.

💜 Why It’s Perfect for Us

We know we’re asking a lot of the community during this week, October 29th is BED Day for Severe M.E., and it’s a time for campaigning, and awareness. But Halloween Storytime is a little win. It’s a chance to feel part of something joyful, without needing to use up precious energy.

You can lay back and listen, or join in with the fun if you’re able. No pressure, no expectations, just a lovely moment to share together.

So grab your blanket, your pumpkin socks, or your foggy foghorn (optional), and let’s make Halloween a celebration that includes all of us.

🎧 Tune in. Chill out. Let the witches do the work.

Love,
Foggy and his P.A. Sally 💙🦴

The post 🎃 Halloween Storytime: A Spooky Treat You Can Enjoy from Bed! 🛌👻 first appeared on ME Foggy Dog.