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.

After months of campaigning, heartfelt advocacy, and the support of 8,909 signatories, ME Foggy Dog and Voices Adfocad have made the difficult decision to close our petition calling for the creation of a dedicated Minister for Disabled People. This campaign was born out of frustration, hope, and a deep belief that disabled people in the UK deserve focused representation at the highest levels of government.

Our petition demanded two key changes:

• The removal of Stephen Timms MP from his dual role as Minister for Social Security and Disability.
• The establishment of a dedicated Minister for Disabled People with cross-government authority and no responsibility for disability employment within the Department for Work and Pensions (DWP).

We believed, and still believe, that disability policy should not be diluted by competing priorities. The current structure, where one minister oversees both social security and disability, creates a conflict of interest. Welfare reform agendas focused on cost-cutting and employment incentives often clash with the nuanced needs of disabled individuals.

Disabled people face barriers that span health, social services, education, transport, and employment. A minister with a singular focus on disability could champion inclusion and accessibility across all departments, as outlined in the government’s own guidance for Lead Ministers for Disability.

We were not alone in our concerns. Organisations like WECIL and countless individuals echoed our call for a role that prioritises disability rights, not just within the DWP but across the entire government.

Despite our efforts, the response from government officials made it clear: this is one immovable object.

Stephen Timms MP responded to our petition with a polite but firm defense of the status quo. He expressed his commitment to disabled people and highlighted the government’s employment support package. Yet, he also stated his belief that the dual role is a “natural fit,” reinforcing the very conflation we sought to dismantle.

An ethics adviser  offered a candid reflection: while the idea of a dedicated minister is admirable, government ministers are bound by collective responsibility. The role, as it stands, isn’t meant to act independently or critically of government policy. That space, they suggested, belongs to advisory boards, not ministers.

We’ve come to accept that this campaign, despite its merit and momentum, has reached a point of diminishing returns. The energy and resources we’ve poured into this fight can now be redirected toward other pressing issues affecting disabled people, issues where change feels more achievable.

This isn’t a defeat. It’s a strategic pivot.

🙏 Thank You

To the 8,909 people who signed, shared, and stood with us: thank you. Your voices mattered. Your belief in a better, more inclusive government gave this campaign its heartbeat.

While this chapter closes, our commitment to disability advocacy continues. ME Foggy Dog and Voices Adfocad will keep pushing for change, just on different fronts.

Together, we remain loud, proud, and unshaken.

ME Foggy Dog & Voices Adfocad

The post Petition Closed: The Campaign for a Dedicated Minister for Disabled People Ends, Here’s Why first appeared on ME Foggy Dog.

Let’s not sugarcoat it: Labour has a disability problem, and the way they’ve handled the so-called “welfare reform” bill proves it.

Despite over nine months of relentless work by charities, disability organisations, and disabled people themselves, educating MPs, sharing lived experience, and offering real solutions, the bill passed through Parliament with barely a nod to those it affects most. It wasn’t about reform. It was about cuts. Wrapped in the same tired phrase: “We have to make difficult decisions”. But here’s the thing, it wouldn’t be difficult if disabled people had been consulted from the start.

We did our job. MPs who listened to us tried to do theirs. But Labour didn’t let them. When MPs like Rachael Maskell and Neil Duncan-Jordan voted against the bill after hearing our concerns, they lost the whip. Labour said they “went against the team”. But what kind of team punishes its members for standing up for disabled people?

Now, to add another layer of democratic erosion, the bill is going through the House of Lords as a Money Bill. That means it won’t be subject to proper scrutiny. No amendments. No committee stage. No real debate. Just a rubber stamp and a countdown to Royal Assent. If this bill is so right, so fair, so necessary, why won’t they allow it to be scrutinised?

This is textbook systemic bias. If The Labour Files exposed racism and factionalism within the party, this is the disability chapter. Disabled people have been treated as “the other” throughout this process. No accountability. No transparency. No meaningful consultation. Just exclusion and punishment.

Most media outlets have parroted the government’s spin, painting MPs who opposed the bill as “rebels” trying to bring down Labour. That’s a lie. They were doing their jobs. Just like we were.

Let’s also bust the myths they’re using to justify these cuts:

• The fraud rate for PIP is 0.2%, so low the DWP calls it “statistically zero”
• The welfare bill isn’t spiralling, £1.1 billion was underpaid to claimants last year
• Benefits aren’t wasted, they’re spent in local economies, supporting businesses and communities

Despite repeated claims in the media that Labour “rebels” had successfully forced all disability-related cuts to be dropped, this is factually untrue. While some concessions were made, £2 billion in cuts are still being pushed through via changes to Universal Credit , specifically the LCWRA (Limited Capability for Work and Work-Related Activity) element. These cuts disproportionately affect chronically ill and disabled people, and are what is being passed through the House of Lords as a Money Bill on Tuesday 22nd July. The media’s framing, suggesting the rebels were trying to destabilise Labour or that the worst was over, has been not only misleading but harmful, given the scale of impact this legislation will have on vulnerable communities.

Now we move onto the narrative of “economic inactivity”. Many disabled people pay taxes, many others did before becoming ill. Benefits are not a drain, they’re a lifeline. They keep people housed, fed, and cared for. That money flows back into society. It’s not inactivity, it’s survival.

To make matters worse, we don’t even have a bias-free Disabilities Minister. Stephen Timms holds both the Social Security and Disability portfolios, a clear conflict of interest. As our petition states:

“The conflation of duties presents a clear conflict of interest.”
“Disabled people’s concerns are being undermined, sidelined and deprioritised.”

This is David vs Goliath. And when David lands a blow, when we educate MPs, shift the narrative, and expose the truth, Labour responds with retaliation, not reflection.

We need more than platitudes. We need a welfare system that listens, a party that represents all its constituents, a media that tells the truth, and a Minister for Disabled People who isn’t conflicted from the outset.

If The Labour Files taught us anything, it’s that silence enables discrimination. So let this be the beginning of the next exposé: Labour’s disability problem is real, and we’re not staying quiet about it.

Love Sally

…and Foggy (OBVIOUSLY) xx

The post Labour’s Disability Problem: Cuts, Silencing, and Systemic Bias 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.

Due to my own M.E. and other personal issues this week, I have just resorted to asking AI how disabled people in Scotland will be impacted by the proposed welfare cuts by the Government in Westminster. I had previously seen people who live in Scotland saying they won’t be impacted so I was surprised to find out today that is not the case.  Some MSPs have incorrectly said it’s not an issue that Scotland, as a devolved nation, needs to be concerned with so it’s not surprising that members of the public aren’t aware! Though to give MSPs the benefit of the doubt, the AI explanation shows how complex the benefits system is in Scotland so maybe it’s not surprising that they don’t understand the complexities!

This is what Gemini (AI) said when I asked the question – ‘Do the welfare cuts proposed by Liz Kendall impact people living in Scotland?’

The sources quoted in this AI answer can be found at the bottom of this blog. AI is not infallible so please double-check these results for yourself if this is an issue that impacts you.

Why am I posting about this? Because people living in Scotland should also be putting pressure on their politicians to either vote against these cuts OR pressure the Westminster Government into another U-turn. It’s all hands on deck at the moment and every politician counts in the fight back. I have used AI because there are strong rumours that the welfare cuts will be voted on within the next month and we need as many emails to be sent to MPs as possible ASAP (can’t wait for my M.E. to improve so I can explain this in my own words!).

Sally

The post Impact of Liz Kendall’s Proposed Welfare Cuts in Scotland first appeared on ME Foggy Dog.

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

As the Founder/Manager of M.E. Foggy Dog, I ensure that the voices of people living with Myalgic Encephalomyelitis (M.E.) are heard and that their experiences shape the conversations I have about disability rights, access to adequate and appropriate care, and government policies. That’s why I’m asking for a little bit of help from you!

This week, proposed changes to the Personal Independence Payment (PIP) assessments have been causing a lot of concern within the disabled and chronically sick communities, including people living with M.E. I know these changes are complex (and at the moment, very vague), and the effects will vary from person to person depending on many factors. Still, I’m hoping to gather some informal data to get a rough idea of the percentage of people who will be negatively affected if the changes go on to be implemented at some point in the future. I get that this is a tricky thing to measure and that the data won’t be perfect. If you’ve been through a PIP assessment in the past and scored 4 points in any category, I would appreciate hearing from you. If you can, please email me with the following info:

1. Which category contained the 4 points in your assessment?
2. What was your overall score on the assessment?
3. What level of severity were you experiencing at the time of the assessment?

This isn’t about getting precise, polished data; it’s about creating a snapshot. With this info, I can better understand how many people are likely to face negative consequences due to these changes in PIP, and it will help us, as a community, fight back against the government’s cuts to disability benefits.

If you’re able to share your experience, please email me at sally@mefoggydog.org  Your input could make a real difference in my ongoing work pushing for welfare reform that is in keeping with the needs of people living with M.E.

Thanks in advance for your energy, time, and support.

Sally

The post Help to Establish the Impact of PIP Assessment Changes on People with M.E. first appeared on ME Foggy Dog.

The Shake It UP next step is here! I ‘went live’ on YouTube earlier. You can watch the recording below (don’t forget to subscribe too so you don’t miss future content!).

As I explained during the ‘live’, my own M.E. is currently causing me to not be able to function as well as I usually do. With that in mind, because the 11th April deadline is looming, I am simply going to provide the basic info you need to be able to participate in this campaign ‘push’.

This is the text from the document I read through in the video. It contains info and suggestions that you might find useful.

Social Media Campaign

Here’s a social media campaign plan to pressure the UK Government to create a reporting system for harms from non-pharmaceutical “treatments,” with a focus on the 11th April deadline:

Campaign Goal:

• To generate significant public awareness and pressure on the UK Government to establish a formal reporting system for adverse effects from non-pharmaceutical ‘treatments’.
• To ensure the government addresses this issue before the 11th April deadline.

Campaign Elements:

• Hashtag: Please make sure you use these #s on related social media posts with #ShakeItUp
  • #ReportNonPharmaHarms
  • #PatientSafetyUK
• Key Messages: Feel free to copy and paste these sentences into your posts
  • People experiencing harm from non-pharmaceutical ‘treatments’ need a way to report it
  • Lack of reporting means a lack of data, and that puts people at risk.
  • The UK government must act now to create a reporting system from non pharmaceutical harms
  • We need transparency and accountability in all forms of healthcare.
  • 11th April deadline: the UK government must respond!

• Visuals: A few suggestions – Unfortunately, this time I don’t have the energy required to make these for the community to use. You can also download the Shake It UP image and use it on your posts if necessary (at the bottom of this blog).
  • Create shareable images with key statistics or impactful quotes.
  • Post photographs of yourself/loved one (consent needed) and explain how you/they have been harmed.
  • A countdown graphic showing the time remaining until the 11th of April.
  • A graphic that shows a broken medical symbol, or a question mark inside of a medical symbol, to visually represent the issue.
• Social Media Platforms:
  • X (formerly Twitter): For quick updates, engaging with politicians (Wes Streeting MP and possibly your own MP too)
  • Facebook: For sharing in-depth stories, creating community groups, and reaching a wider audience. You can tag politicians on FB too.
  • Instagram: For visual content, sharing personal stories, and utilizing relevant hashtags. Tag, tag, tag!
• Campaign Actions: A few suggestions of how you can help to reach a wider audience
  • Share personal stories: Encourage individuals who have experienced harm to share their stories (anonymously if preferred).
  • Tag relevant government accounts: Consistently tag the Department of Health and Social Care and relevant ministers.
  • Organize virtual events: Host online discussions with experts and individuals affected by harm.
  • Media outreach: Send press releases to national and local media outlets.
  • Countdown posts: Daily posts counting down to the 11th April deadline, emphasising the urgency.
• Timeline:
  • Immediate launch: Begin the campaign immediately to maximise impact.
  • Daily activity: Consistent posting across all platforms.
  • Final push: Intensify activity in the days leading up to the 11th April deadline.

Important Considerations:

• Accuracy: Ensure all information shared is accurate and evidence-based.
• Sensitivity: Handle personal stories with sensitivity and respect.
• Inclusivity: Ensure the campaign is inclusive and represents the diverse range of people affected.

By implementing these strategies, the campaign can effectively raise awareness and put pressure on the UK Government to take action.

Let’s do this!

You can download this image:

The post Shake It UP, Next Steps and How To Get Involved: Social Media Campaign 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.