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.

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

The post Your Voice Matters: Why Contacting Your MP NOW is Crucial first appeared on ME Foggy Dog.

I have a fuzzy brain this afternoon and whilst attempting to get a few ideas down on paper (email) to sort M.E. awareness artwork, I used Gemini (AI) to see if I could come up with a prevalence of M.E. in my hometown of Portsmouth. The M.E. Awareness Month poster will be displayed in a local supermarket so I wanted to add a local dimension to it.

The following AI results show what an absolute mess it can be when trying to establish how many people have M.E. or an ‘M.E.’-like illness’ or ‘meet M.E. criteria’. There are far too many ‘these research papers state XYZ but we have to consider mis or under-diagnosis’ or ‘Is M.E-like Long COVID actually M.E?’ (I believe that yes it is. If a person meets M.E criteria they have M.E irrespective of the ‘trigger’.). Now that COVID19 testing has dramatically declined I believe (after having MANY conversations with NHS staff) many have gone from infection to an M.E. diagnosis bypassing Long COVID altogether. This is another variable, we had a period of being able to assume that around 50% of Long COVID cases still sick at the one year point could be included in M.E. prevalence statistics. In April 2025, I strongly believe that many more COVID19-induced cases go straight to M.E and bypass Long COVID. The days of research helping us to understand that the exclusive M.E. ‘club’ gained 9,000 new members (whether diagnosed or not) are long gone.

Take a look at what AI came up with – warning – it’s messy!

My M.E-addled brain wrote this question –

How many people have M.E in Portsmouth UK, if 1.25 million have the disease nationally and the population of Portsmouth stands at 210,300 (ONS). What is the prevalence i.e. 1 in ? have M.E

Here’s the answer!

Based on the national prevalence of 1.25 million people in the UK having M.E. and the population of Portsmouth, we can estimate the number of people with M.E. in Portsmouth.

1. Calculate the prevalence rate:

• Prevalence rate = (Number of people with M.E. in the UK) / (Total UK population)
• While the exact current UK population is dynamic, we can use an approximate figure of 67 million for this calculation.
• Prevalence rate ≈ 1,250,000 / 67,000,000 ≈ 0.0187 or 1.87%

However, it’s important to note that different studies provide varying prevalence rates for M.E. in the UK, ranging from around 0.2% to 0.6% in some more recent estimates, and potentially higher if including long COVID cases with M.E.-like symptoms. The 1.25 million figure you mentioned likely includes those with long COVID experiencing M.E.-like symptoms.

Let’s use the 1.87% prevalence rate based on your figure of 1.25 million for this estimation.

2. Estimate the number of people with M.E. in Portsmouth:

• Population of Portsmouth ≈ 210,300 (based on mid-2023 ONS estimate)
• Estimated number of people with M.E. in Portsmouth = Prevalence rate × Population of Portsmouth
• Estimated number ≈ 0.0187 × 210,300 ≈ 3,932.61

Therefore, based on your figure of 1.25 million nationally, it is estimated that approximately 3,933 people in Portsmouth may have M.E.

3. Calculate the prevalence as 1 in ?:

To find the “1 in ?” prevalence, we take the inverse of the prevalence rate:

• 1 / 0.0187 ≈ 53.48

This suggests that approximately 1 in 53 people in Portsmouth may have M.E., based on the assumption that the national prevalence rate applies uniformly to the local population.

Important Considerations:

• Uniform Distribution: This calculation assumes that the prevalence of M.E. is uniformly distributed across the UK, which may not be entirely accurate. Local environmental factors or other demographic variations could influence the actual prevalence in Portsmouth.
• Diagnostic Rates: The number of diagnosed cases in Portsmouth might be lower due to underdiagnosis or misdiagnosis, a known issue with M.E. nationally.
• Long COVID Impact: The increased prevalence you mentioned includes COVID-19 triggered cases. The distribution of long COVID and subsequent M.E. may vary regionally.
• Varying Prevalence Estimates: As noted earlier, different studies give different national prevalence rates for M.E. If we were to use a lower national prevalence rate (e.g., 0.45% based on some research for ME/CFS specifically, excluding the long COVID overlap in your figure), the estimated number in Portsmouth and the “1 in ?” figure would be significantly lower.

For instance, using a 0.45% prevalence rate:

• Estimated number in Portsmouth ≈ 0.0045 × 210,300 ≈ 946.35 (approximately 946 people)
• “1 in ?” prevalence ≈ 1 / 0.0045 ≈ 222

Therefore, the prevalence could range significantly depending on the actual prevalence rate of M.E. (including long COVID-related cases) in the UK. Your figure of 1.25 million suggests a higher prevalence due to the inclusion of long COVID cases with M.E.-like symptoms.

THIS is why we need a biomarker.

Establishing the prevalence isn’t the most important question to be answered by research in 2025, however, it links to many important statistics that impact the care and research funding we receive.

• If we don’t know the prevalence how can we claim research funding is not equitable with other comparable diseases and how much it is ‘out’?
• If we don’t know the prevalence how can we claim to know how many people in our community will be negatively impacted by the UK Government’s latest PIP debacle?
• If we don’t know the prevalence how can I explain the need for an M.E.-Friendly Hospital Charter to regional health organisations (ICSs / Health Boards / Health and Social Care Trusts) who want to know how many people will benefit? I have been asked ‘how many people have M.E. in our specific region?’ MANY times.
• If we don’t know the prevalence how can we confidently state the economic burden to businesses and subsequently push for improved support for those physically able to work?

These are just a small sample to demonstrate why establishing an accurate prevalence is important in the wider context of M.E. and is particularly important in my world of M.E campaign work.

The cynic in me wonders if the vague, unconfirmed, ‘plucked out of thin air’ image of M.E. suits the Government of the day. It helps to keep us on the back foot. All major UK charities have different prevalence estimates on their websites. There is no consistency, which is surprising given they collaborate in various lobby groups and campaign work.

The 1.25 million estimate was published by the main UK charities in Summer 2023. I had been waiting for an updated prevalence estimate and the second I saw it published I ran with it. The new estimate came 2 weeks after I created this video, I wasn’t too far off the mark. The lack of an updated estimate had been causing me difficulties in conversations with various Government representatives and NHS managers who prefer to have concrete irrefutable data to reinforce what they are being told during online meetings.

Having a biomarker is just one hurdle, we also have to fix:

• Coding on SNOMED (GP level). The Department for Health and Social Care (DHSC) *SHOULD* be able to run software to establish how many people have M.E. in England/UK. However, GPs (and other NHS staff) are incorrectly coding us on electronic medical systems (SNOMED) and so the DHSC is unable to do this and get accurate results. Yes, I have asked DHSC management this question.
• Education levels amongst medical professionals about our disease – surely biomarker testing will only work if the GP knows there is a chance the person in front of them MAY have M.E!

Sorry this blog is fuzzy and waffly, maybe appropriately so as it matches the topic I am raising! People living with M.E. who follow Team Foggy should know ME Foggy Dog is continuing to state ‘1.25 million meet M.E. diagnostic criteria in the UK.’ in all NHS and Government meetings (even though that figure has likely risen since 2023!).

Love

Sally

and Foggy (OBVIOUSLY).

ps. In case you have missed this.

Behind the Scenes: Supporting the Essentials Crowdfunder.

“For over a decade, I’ve poured my heart and soul, and my own personal funds, into building ME Foggy Dog, a social enterprise. It’s been a labour of love, driven by a deep personal commitment to the Myalgic Encephalomyelitis community and cause. I’ve always believed in doing more with less, operating on a shoestring budget to maximize the impact I can make.

However, the reality is that times have changed. I’ve reached a point where self-funding is no longer sustainable, and to continue the work I do, ME Foggy Dog needs your help.”

I’m grateful for any amount pledged, thank you to those who have supported this fundraising project so far.

Pledge funds here 

Thank you.

The post Prevalence of M.E. or ‘M.E.-Like Illness’ 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.

I have posted the response received from Paralympics GB / Every Body Moves on social media in recent weeks but am now actioning the next step.

Response received 7th September 2024.

Dear Sally,

Thank you for taking the time to write to us. We appreciate your concerns and hope that the information contained in our latest blog post outlining some of the background to Every Body Moves goes some way to explaining our name and purpose.

Co-production is fundamental to our programme, so please do reach out if you’d like to know more or be involved in the future.

Very best regards

Barry Lloyd

Programme Manager

ParalympicsGB | Every Body Moves

The blog post mentioned in the reply has the title – ‘A bit of background on our Every Body Moves approach.’  This generic sounding email makes it seem as though Mr Lloyd hadn’t read my ‘open letter’ and sent out a standard response to criticism. However, this was constructive criticism from an organisation that represents part of the disabled community.

Next step

Extracts from the blog –

‘Every Body Moves powered by Toyota is a ParalympicsGB programme designed and co-produced with the disabled community to champion inclusion and empower disabled people to become more active.

The name “Every Body Moves.” Is more than just a title – it’s a purposeful play on words that has been co-produced with the wider disability community to reflect our shared values of inclusivity and empowerment. The name was carefully chosen through extensive collaboration with the disabled community including our lived experience advisory board and the award winning disability-led marketing agency Purple Goat, highlighting our commitment to centring the lived experiences and voices from within the community.’

At the heart of Every Body Moves is the social model of disability, which recognises that it’s society’s barriers, rather than individual bodies, that disable people. We strongly believe that disability is not about what you can or cannot do, but about how society fails to accommodate and celebrate the diverse ways people live and move. That’s why we say, “Every Body Moves,” – because every body, regardless of ability or impairment, moves in its own unique and meaningful way.
We will champion that unapologetically.’

I am wondering if any representatives from the energy limiting conditions community were involved in this collaborative work. Because a heck of a lot of us with this range of conditions do not see this #EveryBodyMoves campaign as inclusive or empowering. No amount of lifting of ‘societal barriers’ would enable us to participate in exercise/increase our exertion. With that in mind, here is the next bit.

Invitation ‘open letter’

Dear Mr Lloyd,

I hope this message finds you well. I wanted to reach out following your response to my correspondence regarding the #EveryBodyMoves campaign and the important conversation that must be had around its inclusivity for all disabled individuals, particularly those living with energy-limiting conditions such as M.E. and Long Covid.

To address these concerns, I would like to propose an online ’roundtable’ discussion (many in this community are still COVID19 cautious). This gathering would allow us to engage directly with individuals experiencing these conditions to better understand their perspectives and identify ways to ensure that the next Paralympic Games are more inclusive (even if only in the form of a public caveat to reduce stigma).

I hope you agree this conversation is important and necessary.  Please feel free to invite others who may also want to participate in this crucial dialogue.

Thank you for considering this opportunity to foster greater inclusivity. I look forward to your response.

Warm regards,

Sally Callow

Founder – ME Foggy Dog

Managing Director – Stripy Lightbulb CIC.

Email sent 18th September 2024, obviously I’ll keep you posted on developments.

Love

Sally

The post Paralympic Games and Greater Inclusivity – A Work In Progress first appeared on ME Foggy Dog.

Subject: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E)

To Secretary of State for Health and Social Care Victoria Atkins MP

I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to address the unique needs of this patient population.

M.E., also sometimes known as Chronic Fatigue Syndrome (CFS), is a debilitating complex neuro-immune condition characterized by post-exertional malaise, extreme neuro-exhaustion, cognitive impairment, and other symptoms that significantly impact daily functioning. For those with severe M.E., the consequences are particularly devastating, often rendering them bedbound and reliant on extensive support for even basic activities.

Despite the severity and prevalence of this illness, there is a glaring absence of specific protocols within the NHS to cater to the complex needs of individuals with severe M.E. Consequently, many patients are left without adequate medical attention, facing significant barriers to accessing appropriate care and support. M.E can sometimes be fatal and patients have died from malnutrition as a direct result of neglect, stigma, and a poor knowledgebase in NHS hospitals. In 2024, medical professionals who understand the complex nature of the disease and who contemplate ‘off label’ treatments are finding themselves at risk of referral to the General Medical Council due to the lack of a NHS protocol.

It is imperative that the NHS recognises the urgent need to address this gap in healthcare provision and take concrete steps towards the creation of a comprehensive protocol tailored specifically to support individuals with severe M.E. This protocol should encompass the following key elements:
1. Specialised Care Pathways: Develop clear and standardized care pathways for individuals with severe M.E., ensuring access to specialist consultations, symptom management, palliative-style care, and home-based support services.
2. Education and Training: Provide comprehensive training for healthcare professionals to increase awareness and understanding of severe M.E., enabling them to deliver appropriate and empathetic care to patients.
3. Research and Innovation: Allocate resources for research into the underlying mechanisms of M.E. and the development of effective treatments, with a focus on addressing the needs of individuals with severe forms of the illness.
4. Patient Involvement: Ensure meaningful involvement of individuals with severe M.E., as well as their caregivers and advocacy groups, in the design and implementation of the protocol to ensure it reflects their needs and preferences.

The creation of an NHS protocol for severe M.E. is not just a matter of healthcare policy; it is a moral imperative to uphold the principles of equity, compassion, and dignity in healthcare delivery. Failure to address this issue perpetuates the suffering and marginalization of a vulnerable patient population, denying them their fundamental right to access quality healthcare.

Therefore, I urge you to prioritize the development and implementation of a dedicated NHS protocol for severe M.E. as a matter of urgency. By taking decisive action, the NHS can demonstrate its commitment to meeting the needs of all patients, regardless of the severity or complexity of their illness.

Thank you for your attention to this critical issue.

I look forward to your prompt response and action on this matter.

For Media Inquiries, Please Contact: Sally Callow, Founder- ME Foggy Dog

Contact – sally@mefoggydog.org

About ME Foggy Dog

We are committed to improving the lives of people living with Myalgic Encephalomyelitis and campaign for better healthcare outcomes for affected individuals. Visit mefoggydog.org to learn more about our work and how you can get involved.

[End of Press Release]

This letter is also open to the public to sign and support. You can sign your name here 

The post Press Release – Open Letter to Secretary of State for Health and Social Care Victoria Atkins MP first appeared on ME Foggy Dog.

Since having COVID19 in March 2020, I have had a  croaky voice that seems to flare on exertion. It’s now my main indicator that post-exertional malaise is on the horizon. My voice starts to ‘go’ about 20 minutes before I start feeling like I am moving in slow motion and my rainbow of symptoms start flaring.

It’s been a long road to getting a referral to a Speech and Language Therapy department at my local hospital. Firstly, Speech and Language won’t accept referrals until an appointment has been had with the Ear, Nose, and Throat Department (ENT) to rule out nodules, etc. ENT won’t accept referrals unless a patient has been on acid reflux medication for 6 weeks to rule out acid reflux as the causal factor. Add to that lengthy waiting lists and this ‘pathway’ has been on going for a year or so.

**Edit**

I should say that during my previous 15 years of having M.E, I’d had different voice issues. I had periods of huskiness and occasionally lost my voice altogether. When this problem started in 2020, I had no idea that some fellow pwME had the exact same problem ie. croaking, because the vast majority of pwME do not post videos of themselves like I do!! I hadn’t heard how other pwME ‘croak’. As this is a new problem for me, I am listening to what the Speech and Language Therapist is telling me though I fully recognise that there could be a ‘M.E-related cause’ that ‘healthy people’ do not experience. It could also be caused by Mast Cell Activation Syndrome (‘Hoarseness can be a ‘symptom’), since having COVID19 I have many ‘traits’ of MCAS so it is a possibility. I am going to participate in this therapy with an open mind and hope that I can improve even a little bit.

I had my first appointment with ENT in January 2022. During this appointment, an abrupt ENT Consultant with limited bedside manner, put (read: forced, pushed) a camera up my nose and down to the top of my throat to see my vocal cords. The camera was in place for 5 seconds before he whipped it out and said ‘there is nothing physically wrong with your vocal cords, I’ll refer you to Speech and Language for some therapy’. After waiting 6 months for the appointment, I was both relieved that my vocal cords were ‘ok’ and annoyed at the speediness of ‘care’. I had my second ENT appointment (for ongoing Eustachian Tube pain and inflammation) 2 weeks ago and this Consultant was awesome. He explained how to breathe through the ‘camera up the nose process’ (I’ve forgotten the name – sorry!) and explained in non-medical jargon what is going on inside my head (grateful!). So if you have had a ‘camera up the nose’ procedure like my first one, I can reassure you that there are ‘less bad’ ways of doing it! Not related to my speech issue, but this second Consultant confirmed that my Eustachian Tube is still inflamed, the surrounding lymph nodes are enlarged/inflamed and suggested treatments (Nasal douches SUCK). None of which was offered in January when the problem was first spotted. I was just told ‘your Eustachian Tube is inflamed’ and it would go away in time.

Back to the speech issue, I had my first Speech and Language Therapy appointment 2 weeks ago. Sam, my therapist, was fabulous. This session was mainly educational and Sam talked me through the ENT/Speech and Language pathway, showed me how the throat and vocal cords work using diagrams, and explained how she MIGHT be able to help. Sam said she couldn’t promise to make my voice ‘better’ and I reassured her that any improvement would be welcome but I wasn’t getting my hopes up!

Sally’s Top Tip

Because I am aware that my voice issues coincide with PEM, and that I always rest before hospital appointments to make sure I am not going through PEM so I can communicate effectively, I KNEW my voice issues would not be present during the Speech and Language Therapy appointment. So, in the week before my appointment, I recorded myself croaking so the therapist could hear what my ‘croakiness’ sounds like.

This is the video I played her AFTER we had recorded me reading a story out loud in my ‘normal voice’ (that was only slightly croaky). She agreed that it was beneficial to hear the problem for herself as she never would have heard it during our sessions.

WATCH – https://youtube.com/shorts/bPSKa2kqhe0

I would recommend recording your voice to any pwME who is referred to Speech and Language Therapy, it saves energy if they can hear the problem rather than you try to explain what it sounds like!

Muscle Tension Dysphonia

Muscle tension dysphonia is a change in the sound or feel of your voice due to excessive muscle tension in and around the voice box. Same believes that I hold a heck of a lot of tension in my throat area. Given that we are in a pandemic living with unusual life stressors on top of the usual day to day tension, I would not be surprised!

I made it clear that my croakiness fluctuates and Sam said that muscle tension Dysphonia is variable and unpredictable and so, although in me it is an indicator of PEM, it fluctuates in non-M.E affected people too.

Read all about Muscle Tension Dysphonia here.

Glottal Fry (Croaky)

I have Glottal Fry! Apparently I have something in common with the Kardashians….though they have it through choice! (Why anyone would deliberately make themselves sound like a frog I HAVE NO IDEA!!)

This extract is from  McKinney, James (1994). The Diagnosis and Correction of Vocal Faults

‘Glottal fry also known as vocal fry is caused by air escaping through the vocal folds which causes small irregular vibration.  This vibration causes the voice to sound slow, low-pitch, “raspy”, and / or “hoarse”.  Many people produce glottal fry toward the end of the day due to overuse of their voice.  Glottal fry may also happen at the end of a long phrase when it feels like most of the air has been depleted.’

I tried to find an article to share but it was all about the Kardashians and choosing to speak like this so I didn’t feel those articles were a good fit!! Please feel free to do your own online searches if you want to know more.

My therapist, Sam, said that Glottal Fry in me =

• Low air flow
• Tension

Causal factors of Glottal Fry can also be:

• Dehydration
• Excessive talking
• Breathing pattern issues

I explained that I have been tested for Diabetes (negative) due to my excessive thirst and have been drinking 4 litres+ every day since March 2020 and my voice ‘goes’ even when I have barely spoken all day, and so it’s not linked to excessive talking. Sam checked my breathing (as did the Long Covid clinic Physio a year ago), I breathe ‘normally’ so it isn’t a breathing issue either.

Sam explained that the voice is a barometer of overall health: physical, emotional, and spiritual. Think of when ‘healthy’ people have had a really long exhausting day, you can tell that they are exhausted by the way they speak softly and sound unusual in terms of volume and pitch – ‘You sound exhausted’.

I have been booked in for 4 further sessions of Speech and Language Therapy, Sam has reassured me that when she says ‘voice exercises’ she means tasks, I won’t be asked to do anything strenuous but we will monitor how much energy these tasks require and adjust accordingly.

I do not like sounding like a frog so am hoping that therapy will help to improve my voice but, as it is linked to my PEM, my optimism is limited. You’ll all be able to hear how I am doing during my Facebook/Instagram Live videos and podcasts – I have been reluctant to record anything ‘professional’ for a while because my voice ‘goes’ fairly quickly. Hopefully, I (and you) will hear some improvement soon!!

Check out the British Voice Association website for more info.

Love

Sally

and Foggy (OBVIOUSLY)

REMINDER

‘Foggy’s A to Z Adventures Around The UK continues! Foggy’ campaign has been paws-ed for a week or so while we wait for a Foggy-sitter to host him on adventures in somewhere beginning with the letter ‘O’ (Town, city, landmark, or event in the UK). Get in touch if you can help! Thank you Contact Sally via mefoggydog@gmail.com.

This campaign has raised £473 so far – please donate here if you haven’t done so already. Foggy is raising funds for M.E biomedical research with Cure ME/MECFS biobank.

The post Speech and Language Therapy For M.E Voice Issues first appeared on ME Foggy Dog.