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.

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.

This isn’t mere speculation, it’s happening now. In a House of Commons debate on 1 July 2025, Conservative MP Helen Whately explicitly endorsed returning to face-to-face assessments, saying:

“They support replacing remote or online assessments for claimants with face‑to‑face assessments, that simple change alone could dramatically reduce the number of new claimants.”

Meanwhile, Work and Pensions Secretary Liz Kendall confirmed the government is moving in that direction. Speaking in Parliament just days earlier, she stated:

“In talking about a two‑tier welfare system…they [Tories] ended [remote assessments], and…we are going back to face‑to‑face assessments.”

For campaigners and disabled people, these are not abstract policy shifts, they are declarations of intent that threaten the accessibility gains made during the pandemic.

For someone with Myalgic Encephalomyelitis (M.E.), a condition characterised by post-exertional malaise (PEM), a severe worsening of symptoms after even minimal exertion, and debilitating exhaustion, a virtual assessment can be the difference between participating in a crucial part of their benefit claim and triggering a week-long crash. The energy required to prepare for, travel to, and endure a face-to-face assessment can be monumental, often leading to a significant deterioration in health. This isn’t just an inconvenience; it’s a direct and detrimental impact on a person’s wellbeing. Failing to attend an assessment, even due to a severe flare-up of a health condition, can result in a claimant’s benefits being stopped, leaving them with no choice but to push through the pain and risk their health. It is, quite literally, a system that punishes people for being too ill to comply with it.

Under the Equality Act 2010, there is a legal duty to provide ‘reasonable adjustments’ for disabled people. Retaining virtual and telephone assessments is not only a reasonable adjustment; it is a necessary one. When attending an assessment in person will foreseeably cause a significant worsening of a claimant’s health, forcing them to do so is not only unreasonable but discriminatory.

Beyond the immediate health impacts, there is a deep-seated and cynical reason why many disabled people fear a return to face-to-face assessments. Anecdotally, and increasingly backed by data, is the suspicion that the very act of attending an in-person assessment is used as evidence against a claimant. The logic is as perverse as it is simplistic: if you can manage to walk into the assessment centre and down the corridor, your mobility issues can’t be that severe. This crude “informal observation” fails to capture the reality: the excruciating pain, the necessarily slow pace, the reliance on mobility aids or companions, or the subsequent crash that made that single journey possible.

Recent data backs up these concerns, according to published figures referenced in the House of Commons debates, claimants undergoing face-to-face PIP assessments are nearly a quarter less likely to receive an award compared to those assessed remotely. The difference in success rates, up to 13% lower for in-person assessments, is more than statistical background noise. It reflects a systemic bias against those whose disabilities make attendance a burden and whose efforts to comply are turned against them. The move to roll back these accessible options is part of a broader, troubling narrative that frames the benefits system through suspicion rather than support. The belief that tougher assessments will “dramatically reduce” claims, as Whately suggested, betrays a policy approach driven more by numbers than justice.

The Department for Work and Pensions (DWP) itself has acknowledged the existence and disabling effects of conditions like M.E., including the phenomenon of post-exertional malaise. It is an unforgivable contradiction to simultaneously recognise that exertion worsens symptoms, and then insist on an assessment process that demands precisely that exertion.

Let us be clear: the solution is not to abolish face-to-face assessments entirely. For some, they are the most appropriate and effective method. The key is choice. Claimants, in consultation with their medical professionals, must have the autonomy to select the assessment format that best suits their health and circumstances. The pandemic forced a long-overdue change, one that finally levelled the playing field for many disabled people. To now strip away this accessibility would be a callous and regressive step. We urge the government to listen to disabled voices, to uphold its legal obligations under the Equality Act, and to commit to a system rooted in flexibility, fairness, and trust.

Remote assessments should not be a temporary accommodation. They should be a permanent option, because accessibility is not a luxury; it’s a right.

✊ Call to Action: Demand Choice in PIP Assessments (BEFORE the 3rd reading on Wednesday please)

Disabled people should not be forced into assessments that risk their health. If you’re outraged by what you’ve read, don’t stay silent:

• Write to your MP today. Demand they support retaining remote PIP assessments as a permanent option and uphold disabled people’s rights under the Equality Act.
• Remind them: Accessibility is not optional. It is the law.
•  Share your story if you’ve been affected. Firsthand accounts are powerful, speak out on social media, tag your MP, and use the hashtag #EqualityActNow #WelfareBill

🔗 Find your MP and email them

Together, we can push back against policies that threaten hard-won accessibility and demand a welfare system that supports, not penalises, the people it serves.

Sources: House of Commons debate, 1 July 2025 (Hansard); Guardian Politics Live, 30 June–1 July 2025; Big Issue (1 July 2025); Benefits and Work, 2025

The post The Fight for Fairer Assessments: Why Remote PIP Reviews Must Remain first appeared on ME Foggy Dog.

The comments which are the focus of this blog are below –

‘”bound” it’s not 1972. You can simply say those not able to attend in person, you don’t need to use offence, outdated language to police the Good Crip boundary.’

I commented in reply –

‘It’s the language used by those with lived experience so it is not the wrong language.’

Their reply –

‘What absolute bollocks. You can use any language you choose to describe YOUR lived experience, you don’t get to impose YOUR choice of language over the top of the hard bloody work disability activists and researchers have done on correcting ableist, offensive language.

If you want to describe yourself as ‘house-bound’ you are welcome to, that doesn’t make it acceptable for journos to completely ignore professional writing standards that don’t reinforce stigma, which this dreadful line does.

The swift and vehement condemnation of my comment as ‘absolute bollocks’ and stating that house-or-bedbound was ‘ableist, offensive language’ by a self-described disability rights lawyer, academic, and employer of disabled people highlights a disconnect. While I, as ME Foggy Dog, unequivocally supports the invaluable work of disability activists in dismantling harmful language, and phrases like ‘wheelchair-bound’ are indeed unacceptable, it’s crucial to understand why, for many within the chronically sick community, ‘house-or-bedbound’ is not only not offensive, but an accurate and necessary descriptor of their reality.

The social model of disability rightly emphasises that disability is not an inherent flaw in an individual, but rather a consequence of societal barriers. For many disabled people, these barriers manifest as inaccessible infrastructure, discriminatory attitudes, and lack of reasonable adjustments. The fight against language that reinforces these societal failures is paramount. AGREED.

However, for those of us with ELCs, our primary barriers, as a community, are distinct and often overlooked:

• Underfunding of Research: A shocking lack of investment in understanding the biological mechanisms of conditions like M.E. leaves millions without diagnosis, effective treatments, or hope for recovery.
• Lack of Treatments: The direct consequence of underfunding is a significant void in care and treatment options. We are not simply unaccommodated; we are often abandoned by medical science.
• Neglect of Healthcare: From dismissive doctors to inadequate support services, the healthcare system often fails to recognise, validate, or treat our conditions, leaving us to navigate debilitating symptoms with little to no professional guidance.

When we are house-or-bedbound, it is not primarily because a ramp is missing, or a workplace is unwilling to make accommodations (though these are also issues). It is because our bodies are fundamentally, biologically compromised, often to the point of profound and sustained physical collapse. The post-exertional malaise, pain, cognitive dysfunction, and extreme exhaustion are not merely inconveniences; they are deeply incapacitating symptoms that physically restrict us.

‘The Canary’s’ response to this linguistic debate perfectly encapsulates the thoughts of many in our community:

‘For reference [name], this article was written by someone with lived experience of chronic illness. Nearly 50% of the Canary team are chronically ill and disabled. We are all aware of the social model of disability and why language like ‘wheelchair bound’ is unacceptable. However, in this context – particularly for chronically ill disabled people living with ELCs – being confined to your house or bed due to society catastrophically failing you is a restraint, and is certainly not something that should be watered down by using phrases like ‘not able to attend in person’ – as this is downplaying the reality of millions of chronically ill disabled people’s experience.’

I posted this question on social media in the immediate aftermath of this Facebook discussion-

 ‘Is there a different term we use that I am unaware of? Where the term ‘bedbound’ is concerned I take the lead from YOU #pwME . It’s the term so many of you use.

Is this a chronically sick v disabled language issue?’

Here are some of the replies – 

‘Given their life success, they may have a disability that isn’t as necessarily life-limiting as ours. They assume we can’t mean “bedbound” and “housebound” literally, which is erasure. Describing our reality isn’t stigmatizing, but policing our language around it actually is.’  N.C. (Twitter) 

‘Language prohibitions are generally a very bad idea in the disability community. Makes chronic illness look like a culture war issue and an identity stance rather than a biological reality.’  V.V. (Twitter)

‘Bedbound & housebound (with rough % for each) – I use both to check, and describe, my own functionality level.’ M.A. (Facebook)

‘This is just silly. Many wheelchair users who aren’t sick object to ‘wheelchair bound’ because their wheelchair is their aid to mobility & freedom. But being in a bed or a house is nobody’s aid to freedom. Hence bedbound & housebound fine. And accurate for mod/severe MECFS.  A.G. (Twitter)

‘I am predominantly ‘house bound’ and that is the term I use to describe it!’ S.C. (Facebook)

‘I’m ‘house bound’ and openly say it! (One alternative I’ve heard from the US is ‘shut in’ which is 1000% worse!).  J.C. (Twitter)

‘Blimey, I use the term housebound because I pretty much am, and bedbound because a lot of time is spent on my bed. What else can, sorry, should I be using about my own circumstances?’   C.E. (Facebook)

‘I think there is a big difference between disabled and chronically ill that is not understood by many who are not chronically ill.  You can be disabled and not chronically ill but if you are chronically ill you are also disabled. People see disabled individuals achieving things and saying they won’t let their disability stop them which is such a toxic narrative in itself but most definitely can’t be applied to chronic illness/certain disabilities. Chronic illness does stop things, at differing levels for different illnesses but it’s not something that can just be pushed through without having a detrimental effect. It really frustrates me that healthy and disabled people don’t see this difference. C.N. (Facebook)

‘I think there is a little bit of confusion on different types of disabilities. It can be an accurate term for those of us with ME, but not for those who are still able to work as she is describing. I don’t know of any reason why housebound or bedbound isn’t appropriate for ME.’  S (Twitter)

Thank you to all who responded to my question online from within the ELC community.

This is not about imposing our language on others; it’s about accurately reflecting our lived experience. To suggest that ‘not able to attend in person’ is a suitable replacement for ‘house-or-bedbound’ is to profoundly misunderstand the nature of our disability. It sanitises and diminishes the severity of our illness. We are not merely ‘unable to attend’, we are physically restrained by the limitations of our illness, limitations that are exacerbated by a society that has catastrophically failed to provide us with the research, treatments, and understanding we desperately need.

The word ‘bound’ in ‘house-or-bedbound’ in this context isn’t about an external, oppressive force, but about an internal, physiological reality. It speaks to the severe restriction of movement and activity that defines daily life for many with ELCs. It communicates the profound impact of our conditions far more effectively than euphemisms.

While ME Foggy Dog, as a social enterprise, stands in solidarity with the broader disability rights movement and its fight against ableist language, we also ask for nuance and empathy when discussing the unique challenges of ELCs. Our fight is not just for accessibility, but for recognition of the biological underpinnings of our illness, for scientific advancement, and for a healthcare system that does not neglect us.

When individuals in our community, and those who represent us (as is the case with The Canary), use terms like ‘house-or-bedbound,’ it is not to reinforce stigma, but to articulate the stark reality of our lives,  a reality shaped by profound illness and societal neglect. Let us not allow debates about language to overshadow the urgent need for meaningful change in research funding, treatment development, and healthcare provision for the chronically sick community. Our words are not meant to offend; they are meant to be understood.

ps. I have deliberately not shared the link to the original Facebook post as I do not want there to be a pile-on, our community has enough divisiveness to deal with at the moment.

Sally

The post ‘House-or-bedbound’: Accurate Lived Experience, Not Offensive Language first appeared on ME Foggy Dog.

Today, on International M.E. Awareness Day, I am in awe of each and every one of you. I’m writing this, thinking particularly of someone truly remarkable – Shauna.

Shauna, your unwavering love and dedication to Row shines so brightly. To see your strength as you navigate the immense challenges of caring for Row, who has been bedbound with severe M.E. for so many months, is truly humbling. You are a force of nature, not only tending to Row’s every need with such tenderness, but also juggling work and creating the inspiring ’40 for 40′ campaign to raise vital funds for Row’s additional medical needs and crucial M.E. research. Your capacity for love and action seems boundless.

But Shauna, and all of you incredible unpaid carers, please know that you are not unseen. Your tireless efforts, often carried out behind closed doors, are the backbone of care for so many living with M.E. and other chronic illnesses. You are the constant, the advocate, the unwavering source of comfort and support. You navigate complex medical needs, emotional burdens, and often financial strain, all while holding onto hope and fighting for your loved ones.

Your love is demonstrated in the gentle adjustments of pillows, the careful administration of medication, the countless hours spent researching and advocating. It’s in the small victories celebrated and the difficult days weathered with unwavering compassion.

I know words can sometimes feel inadequate in the face of such profound dedication. But please know that your love, your resilience, and your unwavering commitment make an immeasurable difference. You are seen, you are valued, and you are deeply appreciated.

Sending you all the strength, the support, and the love you so selflessly give.

I’m so pleased to call Shauna a friend and hope, one day, I will get to meet Row.

With heartfelt admiration,

Sally

The post Unpaid Carers – International M.E. Awareness Day first appeared on ME Foggy Dog.

Every day, due to the symptom/characteristic of unrefreshing sleep,  people living with M.E. wake up already exhausted, only to be hit by a tsunami wave of hate and disbelief online and in the media. ‘Influencers’, shock jocks, journalists, politicians, and even some healthcare professionals spread harmful rhetoric—claiming M.E. doesn’t exist, that people living with M.E. are lazy or malingerers, or that they just need to try harder.  This constant barrage of negativity is far more impactful than hurtful words; it’s a never-ending relentless attack that drains energy. Every time a person living with M.E has to defend their illness, justify their struggles, or fight for basic rights, it diverts valuable energy that could have been used for essential daily tasks. This is energy theft—taking from people who have so little to begin with.

It’s 2025, and the COVID19 pandemic is still ongoing. Yet the world pretends it’s over. For people with M.E.—many of whom are at high risk or have had their illness worsened by COVID19 infections—this denial is another knife to swerve. Mask wearers are ridiculed, air filtration is ignored, and society has ‘moved on’, leaving behind those who are still vulnerable. Every trip outside is fraught with danger, and many people with M.E. are forced into choosing isolation to avoid a further deterioration of health. This constant stress, unease, and exclusion from society drain even more energy. Society’s refusal to acknowledge reality isn’t just frustrating—it’s physically harmful to those who are most at risk.

If hate speech and pandemic denial are knives, then politicians wield the largest, sharpest blades. They have the power to push for change—to fund research, provide disability support, and make public spaces safer. But instead, they cut funding, deny benefits, and dismiss the needs and rights of the chronically ill.  By ignoring Long COVID and post-viral illnesses like M.E., politicians ensure that more people will develop these conditions without an appropriate safety net. Their policies don’t just make life harder; they actively harm the most vulnerable. Every cruel decision—every budget cut, every denial that COVID19 is airborne,  every ignored plea—steals even more energy from people who are already running on empty.

Unlike the Spoon Theory, which focuses on natural energy limits, the Knives Out Theory shows how society makes energy ‘management’ even harder. Hate, denial, and political neglect aren’t just background noise; they are deliberate assaults on the lives of people with M.E.  The knives are always out for people living with M.E. who are already struggling in a world that refuses to accommodate us. Until society stops throwing knives, the energy stolen by stigma, denial, and neglect will keep pushing people further into the shadows.

Let’s turn it into a ‘game’!

Knives Out: Energy Theft Edition

Objective:
The objective is to maintain limited energy reserves while dodging ‘knives’ that represent hateful comments (online, in print, and in person), denial, and neglect.

Setup:
Player start with a set number of  10 daily ‘energy points’. These points cannot be carried over to the next day.

Game Components:
1. **Energy Points:** Represent the player’s ability to engage in daily life tasks.
2. **Knives** Each knife represents a negative encounter  –  see possible scenarios below.

Possible scenarios:
Social media encounter:  Player sees a negative post on their news feed that drains energy. If they don’t respond to the post –  lose 2 energy points. Responding –  lose 3 energy points.
Visit to see a healthcare professional: – An unsupportive interaction that affects energy levels due to induced stress – lose 4 energy points (long term impact of stress, negativity and stigma).
Going out in public to a non-health related setting: Facing negative societal interactions (COVID19 or disability) eg. tutting, comments, eyerolls, deliberate coughing – lose 2 energy points for each occurrence.

End of the Game:
The game ends when the player runs out of energy points. Please mark the end of YOUR game by posting #KnivesOutImOut on social media and how many instances of negativity you encountered that day.

If a player finishes the day with some energy left, they are considered to have successfully dodged the knives!(How did you do that?! Well done!) Please remember knives are entirely separate to energy management through pacing. This is energy lost entirely due to negativity of the types mentioned in this blog.

I for one will now be responding to any hateful posts or comments from the media and politicians by posting – ‘Thank you for playing ‘Knives Out: Energy Theft Edition’. Maybe it will start to open a few eyes to the physical impact of hateful rhetoric on people living with M.E.

This topic was inspired by an X post by Kelly (@broadwaybabyto) earlier today in which she wrote-

We need a revised “Spoon Theory” that takes into account being chronically ill amidst 2025 chaos The moment you check your news feed you’re out of spoons Most articles are like knives being flung into your cutlery drawer against your will Protecting baseline is hard right now’.

PS. This has given me an idea for a board game, just in case I go forward with this idea in future I am claiming copyright NOW!. ME Foggy Dog 6th February 2025.

PPS. ‘M.E.’ is inclusive of all people who meet the diagnostic criteria for M.E whether diagnosed (or not) or living under the umbrella term of Long COVID.

The post ‘Knives Out Theory’: How Hate, COVID19 Denial, and Neglect Drain the Energy of People with M.E. first appeared on ME Foggy Dog.

You know THOSE people?

THOSE people who say YOLO? (You Only Live Once)

THOSE people who throw caution to the wind and take risks due to the widespread belief that the medical profession can fix everything and get bodies ‘back to normal’ if anything ‘goes wrong’?

What happens when the problem is common but not fixable?

Caught a virus? Take paracetamol and stay hydrated. You’ll be better in a fortnight.

Having surgery? You’ll most likely be better and fully functioning within a few months after participating in physiotherapy.

Getting vaccinated? You might have minor side-effects for 24 hrs but then you’ll be fine.

These 3 things are some of the triggers for Myalgic Encephalomyelitis.

Viruses, surgery, vaccines.

People living with M.E/C.F.S become unwell and start looking to be fixed.

This is when patients face –

– nothing showing up in tests
– disbelief from medics,
– being told there are no treatments or cure
– being told that 5% get better and most will be ill for the rest of their life OR not being told this at all and having their illness downplayed.
– snake oil salesmen promising the world, costing the earth, but M.E-related quality of life and ill health will not improve.
– loss of relationships and friendships due to poor understanding of the disease and stigma.
– loss of employment as employers struggle to understand/support people with Myalgic Encephalomyelitis.
– being denied disability benefits because of the rife deliberate misinformation on the disease.

Individuals living with the disease are worth £1.50 per year to the UK Government. That’s how much funding we were given per patient per year in 2019 (around £450,000). I am currently waiting for responses to Freedom of Information requests asking for information on how much funding M.E was given in years 20/21, 21/22, and 22/23 as this information is not available/impossible to find online.

With that negligible level of funding, M.E will never get a biomarker/diagnostic test, treatment, or cure.

There are now 1.25 million people living with this disease in the UK, an updated global prevalence statistic is near impossible to estimate at the moment due to multiple factors including variable Covid19 rates, and lack of data. However, I believe it is likely that the pre-COVID19 global prevalence of 17-30 million has at least tripled since 2020.

All of the above is why I have reached my limit of putting up with the status quo. If Governments will not take M.E seriously and continually reinforce the brick wall that I have been banging my head against for years, then I will take another route. I will go around the wall.

That’s why I set the Redefining Gravity challenge. Let’s change the narrative –

Redefining Gravity

See redefininggravity.co.uk for all info.

Get in touch if you have the skills, talent, expertise, knowledge, or connections to help with this challenge. Thank you.

Sally

ps. Foggy’s Global Challenge is running at the same time as Redefining Gravity, both campaigns aim to raise as much money as possible in one year. Both JustGiving links and Foggy’s *NEW* Google Maps map can be found on mefoggydog.org

The post Myalgic Encephalomyelitis, YOLO, and Being ‘Unfixable’. first appeared on ME Foggy Dog.

From the outset, I want to make it clear that I consider myself to be in a place of privilege where this cost of living crisis is concerned. I wrote about my own personal financial situation a few years ago, and those circumstances have not changed. I am fortunate to have a good relationship with/live with my ‘elderly’ parents who no longer have a mortgage to worry about.  Whilst we will be impacted by this cost of living crisis, we are not at risk of losing our home and should be able to accumulatively tighten belts to meet the cost of our bills. However, this is a privileged position to be in and I acknowledge that.

I have been directly contacted by four people living with M.E in recent weeks and I have no doubt that UK M.E charities will have been inundated with requests for advice and signposting.

I’m hoping this blog will prove to be helpful to those who are worrying and losing sleep over what is happening now and what is to come in the next 3-6 months.

There is no shame in being in financial hardship

Struggling with money does not come with the add-on that you are bad with money or have made poor life choices. Financial hardship is just 2 pay packets away from the majority of people: redundancy, ill health, carer responsibilities and many other factors all count towards the inability to pay bills and/or feed children. Yet, guilt is a common emotion felt by those who are struggling financially. It’s not your fault – it is usually due to a series of completely unpredictable and uncontrollable events.

We are where we are, so what can we do about it?

In the media, I keep hearing people saying ‘I’ll have to work more to be able to cover bills’ or ‘just increase your income’. How do you do that when you have an energy-limiting disease that means you can only work a restricted number of hours per week or that has possibly made you house or bed bound? In this instance, ‘just increase your income’ means claiming benefits or benefiting from financial schemes set up specifically to help people in need. THAT’S YOU.

To be clear, I have failed twice myself when trying to apply for Personal Independence Payments and I know how traumatic and stressful the whole process is for many people. But, if you are not yet receiving PIP and have a confirmed diagnosis of M.E or M.E/C.F.S, you are entitled to that money. Please apply, there are many organisations ‘out there’ who can help with the application. I’ll list a few helpful organisations at the bottom of this blog. Most applications are turned down initially, but perseverance pays off and many decisions are overturned during the appeal process. Applications can take many months so even if you are not yet struggling I would advise you to pre-empt that extra money will be needed in 6- 12 months’ time. Set the wheels in motion.

There are other pots of cash that you are entitled to, many of which are included in this Scope article – Why disabled people are at the centre of the cost of living crisis

Contact your suppliers – Make the call

Too many of us are too ashamed to phone our gas, electric, water, broadband company to explain that we cannot afford our bills. I’ve been there, it takes balls to make that phone-call. But it is a phone-call you must make. Sticking your fingers in your ears and hiding unopened bills does not make the issue disappear. If you are too sick to make the phone-call, there are organisations who can liaise with these companies on your behalf. One such organisation is Money Buddies, they also have regional affiliated organisations so they will have support available in your area. They have experience of helping disabled people too – they ‘get it’.

Discuss with your suppliers what you can afford to pay, something is often better than nothing and they may be able to come up with a workable payment plan for you.

Cutting back

I’m not going to state the blooming obvious other than to say, you know you may need to cut back on non-essential items. You know what is/is not essential in your life. I know it is much, MUCH, more complicated than simply cancelling Netflix as has been suggested by some ‘commentators’. However, is there any way you can lower your monthly outgoings without impacting your quality of life in terms of heat and food? This is where Money Buddies and similar organisations excel – they help to lower your outgoings by creating a weekly/monthly budget. That said I know that many of you are on the bare bones already. There is nothing is left to cut back. I know that. Where this is the case, I am hoping there are pots of cash available for you to benefit from – as mentioned above.

M.E, cost of living concerns.

Heating

I won’t lie, I am genuinely concerned that M.E patients will be hit particularly hard by this cost of living crisis. M.E patients have difficulties regulating their temperature, we often shiver on warm days. Some of us have to hike the central heating up when we simply cannot warm up, or need to wear/lay underneath LOTS of layers to try and warm up (whilst still having the heating on at a ‘low level’). I worry that many will turn their heating off to save money. I can completely understand why people will do this, but please make sure you have hot water bottles/microwavable wheat bags in the house to keep your body warm when your internal mechanism has gone haywire.

I am particularly concerned about bedbound patients who may be laying static in cold rooms. I think it is obvious that turning the heating off for these severely affected patients will lead to further health complications. If you are bedbound and are reading this, please get in touch with me or M.E charities if you need help/advice/support.

‘Warm banks’

What are they?

I doubt that this new idea will benefit many people living with M.E as you need energy to get to these places and we would need somewhere to recline/lay down not just sit. Also, during a pandemic with many of us choosing to continue to shield and avoid enclosed spaces, it wouldn’t surprise me if minimal M.E patients sought out their local ‘warm bank’. BUT, this is an option for those who choose to/are able to seek warmth outside of their own home. Please remember to take COVID precautions in enclosed spaces. NOTE TO SELF – contact some ‘warm banks’ to see if they have options for those who need to recline/lay down – update to come.

Eating

This is a particularly complex issue (when is it ever uncomplicated with M.E?!) and ranges from those who don’t have the energy to stand and cook a meal, to those who are so sick they cannot ‘eat’ other than through a tube. I know that I personally only eat ‘2 minutes noodles’ on post-exertional malaise days if my parents are away and cannot cook my meals for me. It’s food but not necessarily nutritious! I’m not sure a diet that consists of entirely noodles with flavouring would be considered a good thing by any nutritionists, but it fills the hunger gap as a temporary measure. I often see tweets from people living with M.E about nutritious meals they’ve managed to cook for themselves using very little energy on a strict budget. Perhaps there is a cookbook for M.E patients? I’d love to know so please comment on this blog if you know of one.

UK residents will no doubt have heard of Jack Monroe ‘Bootstrap cook’. Jack is AWESOME and has written extensively about living on a very tight budget and has written cookbooks filled with low-cost recipes. OBVIOUSLY, this is only applicable for M.E patients are are physically able to cook meals (or carers/support/family members). But, Jack offers suggestions re. slow cookers and one-pot meals. All of which would be beneficial for M.E patients trying to keep food costs down whilst keeping an eye on their energy usage (personal and gas/electric). Jack has chronic illnesses and so many of the recipes are appropriate for chronically sick people. Well worth checking out.

Homes

I have been an advocate since 2014, I have seen too many times that a M.E patient has become homeless through no fault of their own. I simply cannot compute how an M.E-affected body reacts to that level of stress, overload, and having no control over the environment they find themselves in. As a community, I want us to do as much as we can to support everyone in need to prevent this from happening on a much larger scale. Please signpost people to the organisations mentioned in this blog and if it is YOU that is struggling please reach out; there is support here and elsewhere.

Suicide

As a community, we know we have a higher than average suicide rate, and that’s outside of a pandemic and cost of living crisis. Please keep an eye on one another (standard practice for our community I know, but we need to ‘double down’ now), remind others that they are not alone and that, one day, we will reach the other side of this crisis. But, I have no doubt that it will be very tough in the months ahead. Specifically in the UK, please call the Samaritans. There is ALWAYS someone on the other end of the phone – call 116 123 (free).

Links:

Debt advice line

Citizen’s Advice

UK Government Cost of Living support for households

NI Direct – Cost of Living Support

MyGov.Scot Cost of Living

Gov.Wales – Cost of Living Help

EntitledTo

Step Change – Debt Charity

MoneyHelper

Please also note that most, if not all, councils have services to support those struggling with the cost of living.

Remember that you are not alone.

Love Sally

and Foggy (obviously) xxx

The post M.E and the UK Cost of Living Crisis first appeared on ME Foggy Dog.

Historically, it has been very clear that many (not all) social workers hold the same opinion about M.E patients. It is easy to guess that this particular social worker would hold the same view about very similar illnesses.  As both illnesses are ‘invisible’ (to those who don’t know what to look for) and the majority of/all tests come back ‘all clear’, it is much easier for social workers to believe the illness is psychosomatic than to contemplate that modern medicine simply isn’t good enough YET to be able to detect these particular diseases.

Within the M.E community, we know that historically and to this day, parents are falsely accused of Fabricated or Induced Illness (formerly Muchausen by Proxy). The Tymes Trust are doing an excellent job in tackling this issue, amongst many others, and are the ‘experts’ in this area. I would suggest that any parents of M.E or Long Covid-affected children contact Tymes Trust if they have any concerns regarding being disbelieved. They may be able to signpost to the most appropriate support if they are unable to help themselves.

As the NHS website states –

Fabricated or induced illness (FII) is a rare form of child abuse. It happens when a parent or carer, usually the child’s biological mother, exaggerates or deliberately causes symptoms of illness in the child.

-FII is also known as “Munchausen’s syndrome by proxy” (not to be confused with Munchausen’s syndrome, where a person pretends to be ill or causes illness or injury to themselves).

-Fabricated or induced illness (FII) covers a wide range of symptoms and behaviours involving parents seeking healthcare for a child. This ranges from extreme neglect (failing to get medical care) to induced illness.

As I have already stated, M.E does not show up in any tests. A parent has no way to prove their child is ill but, as a parent, they KNOW something is not right. This will be exactly the same for the parents of children with Long Covid. I had been hoping that, because Covid19 is ‘new’, that old-style prejudice is being questioned. But I feel this tweet shows that simply and worryingly is not the case.

This blog is not a no-holds-barred bashing of all social workers. It is a bit like how I view the medical profession. When it comes to M.E, the vast majority are as helpful as a chocolate fireguard – but one that additionally harms.  However, they are AWESOME with other areas of healthcare and other diseases. I say that as a skin cancer ‘survivor’ and someone who has broken bones far too many times to mention. I am exceptionally grateful for our NHS, I just wish they would learn about our disease. In my opinion, it is the same with social workers. They play a key role in safeguarding children and protect many from abuse and neglect. However, I do feel that their blatantly poor knowledgebase on M.E harms both the patient and their families. Too many lives have been destroyed by false accusations of abuse and neglect.

Unapologetically BLATANT PROMOTION – Stripy Lightbulb CIC has training for professionals. There are courses for healthcare, business, and education professionals. The ‘best fit’ for social workers would be the healthcare course if they are dealing with adults and education if they have a duty of care over children and young adults. Either course will give a good grounding in this type of viral-onset illness (most, but not all, cases of M.E are viral-onset).

‘There is no training available’ is no longer a valid excuse.

I founded Stripy Lightbulb CIC in September 2018 to tackle our global health crisis with education. I filled a HUGE knowledge gap. Now, the issue is getting professionals to see that there is a need for them to be educated about our poorly understood disease. The e-training is there for anyone who wants it – 24/7.

As MD of Stripy Lightbulb CIC, I will be writing to the relevant Care and Quality Commission and Council to express my concerns about this tweet. It is clear from the tweet that social workers have a duty of care over Long Covid patients, despite it being a fairly new chronic illness, this level of ignorance has to be nipped in the bud before the problem escalates.

I for one can’t understand what social workers think we gain from ‘pretending’ to be sick. As a Foggy Follower tweeted yesterday, in response to my tweet –

Maybe they can get their retraining while being forced to live on the same small ‘benefits’ we have to live on. Ooh but maybe they can spend two years fighting for recognition first and have no income at all until they get to a tribunal just like a lot of pwme.

Being a M.E patient is not ‘easy’, we face stigma and neglect every day. If we could choose which illness to pretend to have, I personally would have chosen one that others didn’t see as hypochondria. I would certainly choose one where there are treatment options and/or a cure. An illness that meant Drs didn’t frequently do eye-rolls and respond with tuts when I say I have M.E would also be great! Why would we CHOOSE an illness that has disbelief and stigma as a side dish?

Love Sally

and Foggy (OBVIOUSLY)

xxxxx

Have you listened to our latest FogPod episode yet? Have a listen!

‘My Journey From ‘Healthy Person to ME Advocate’ 

‘Follow us’ on Spotify! Never miss an episode!

The post Social Workers and M.E first appeared on ME Foggy Dog.

It has struck me recently that this is exactly the same narrative that we are hearing about Covid19 and Long Covid. How many times have we seen social media posts claiming that the virus is a hoax or overstated because they ‘don’t know anyone who has had it’? I don’t wish ill health on anyone but the narrative is only going to change if more and more people get sick.

With my advocacy, I’ve always believed and stated that everyone knows somebody with the disease. M.E is not rare. So, why do so many people not realise, or at least acknowledge, that it exists? It’s not as if our community doesn’t talk about it and raise awareness at every opportunity. The media often publishes a false narrative or downright inaccurate and misleading information but it does mention M.E fairly regularly. How can anyone say they have never heard of M.E (or C.F.S)?

I now believe that society as a whole has become very self-centred and blinkered about anything that doesn’t directly affect them. It’s a sad place to be but it is what it is. Unfortunately, increasing numbers of people are becoming chronically sick as a result of Covid19 and I’ve lost count of the apologetic social media posts sent to our community by people who are newly chronically sick. They are apologising for not previously taking our plight seriously and many have offered to help our cause ‘when they get better’. I’ll take help and support in whichever form it is offered and am grateful that many have now had their own lightbulb moment where chronic and post-viral illnesses are concerned.

It shouldn’t take someone experiencing the hell that is chronic illness to get some empathy and engagement. I was that person prior to 2006 when I first got sick for the second time (I was undiagnosed in my teens). M.E  was something I’d vaguely heard of but hadn’t engaged with. I doubt I am the only M.E patient who can admit to that, we are asking people to do what many of us didn’t do ourselves.

It is so easy to become chronically sick, a simple virus can cause absolute destruction to all systems of a human body. The notion of ‘it won’t happen to me’ is a false belief for so many people. Currently, 1 in 20 people who get Covid19 are becoming Long Haulers. Of those 1 in 20, around 10% are anticipated to develop post-Covid19 M.E/C.F.S. It’s happening, some patients who caught Covid at the start of the year have been given that diagnosis already by their GP. Our community is growing, as MPs like to say, exponentially. Thinking about how many will be joining our community over the next year or so makes me feel uneasy. We simply do not have the infrastructure or knowledgebase for a huge influx of new patients.

Scientists still don’t know why most people recover from viruses but a minority go on to develop M.E. We just don’t know enough about our disease yet. M.E affects people from all walks of life and doesn’t discriminate in terms of age, race, gender, physical fitness, or weight. ‘To those saying ‘it doesn’t affect me’……..how do you know it won’t in future?

It could be you or a loved one, as with the rest of the M.E community, I’ll be here to help and support if you do become part of our community but I’d love it if you could get involved without needing to be personally affected first. We need fit and healthy people to get engaged with our fight to take some of the advocacy load. Sick people are having to fight to have their disease validated and recognised by the medical establishment. We need people who can march and put the hours in. We do as much as we can but, due to having the illness ourselves or caring for loved ones with the disease, our actions are limited.

Get involved – please don’t wait until it DOES affect you!

Love

Sally and Foggy (OBVIOUSLY)

xxxxxxx

The post ‘I Don’t Care, It Doesn’t Affect Me’ first appeared on ME Foggy Dog.