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 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.

As many of you already know, M.E. Foggy Dog had been campaigning since November 2021 with Shake It UP demanding the creation of a reporting system to report adverse events from non-pharmaceutical ‘treatments. The associated petition, which had 9011 signatures and was accompanied by many hundreds of personal anecdotes of harm, was closed in September 2024 due to us having reached a dead end. I stated at the time that I would be pursuing a ‘Plan B’ as and when an opportunity arose.

Yesterday, it was announced that Amanda Pritchard has resigned from her position as CEO of NHS England.

I believe the change in NHS senior management and the rumoured change of direction now being sought by Secretary of State for Health and Social Care, Wes Streeting MP, could be the ‘opportunity’ we’ve been waiting for.

You can see the work that has already been done on this campaign via this link.

The next phase has now started.

The following was sent in the post yesterday 25th February 2025 –

Formal Complaint: Negligence in Patient Safety Regarding Non-Pharmaceutical Treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Dear Secretary of State,

This constitutes a formal complaint regarding the ongoing failure to implement a robust reporting system for adverse events related to non-pharmaceutical treatments (NPTs) offered to patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) within the National Health Service (NHS). This lack of a reporting mechanism represents a serious and unacceptable negligence in patient safety.

For over three years, we have been campaigning for the establishment of such a system. Our efforts, including a petition signed by over 9,000 individuals, have been consistently disregarded. We believe this inaction demonstrates a deliberate attempt to avoid collecting data on potential harms arising from these treatments, thereby preventing proper scrutiny and accountability.

Specifically, we are deeply concerned about the lack of reporting mechanisms for adverse events associated with commonly prescribed NPTs for ME/CFS, such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT). The continued failure to establish a reporting mechanism is a violation of fundamental patient safety principles. The NHS has reporting systems for pharmaceutical interventions and medical procedures, yet no comparable system exists for therapies that have been widely documented as causing harm to ME/CFS patients. This discrepancy is unacceptable and discriminatory.

Furthermore, the 2021 NICE guideline update explicitly recommended against the use of GET due to evidence of harm. However, despite this, many NHS services continue to offer GET (in many forms) and CBT in ways that contradict the updated guidance. Without a formal reporting structure, patients are left without recourse when they suffer worsening health due to inappropriate treatment recommendations.

The absence of a reporting system contravenes fundamental principles of patient safety and clinical governance. It prevents healthcare professionals from learning from adverse events, impedes research into the long-term effects of these treatments, and denies patients the right to informed consent based on a comprehensive understanding of potential risks. Furthermore, it undermines the ability of patients and clinicians to make shared decisions about care based on the best available evidence.

We believe this failure to act is a clear breach of the NHS’s duty of care to patients with ME/CFS. We request an immediate and thorough investigation into this matter, including:

• The reasons for the continued failure to implement a reporting system for adverse events related to NPTs for ME/CFS.
• The number of patients who have potentially experienced harm from these treatments.
• The steps that will be taken to establish a robust and independent reporting system without further delay.
• How accountability will be ensured for those responsible for this negligence.

We expect a formal response to this complaint within 6 weeks outlining the actions that will be taken to address our concerns. We are prepared to escalate this matter to the Parliamentary and Health Service Ombudsman and other relevant authorities if a satisfactory response is not received.

We urge you to treat this matter with the seriousness it deserves and take immediate action to protect the safety of patients with ME/CFS.

Sincerely,

Sally Callow, Manager –  ME Foggy Dog

Week ending 11th April 2025

As you have just read, the Department for Health and Social Care/West Streeting MP/Ashley Dalton MP have been given 6 weeks to respond/take action. This means they have until Friday 11th April 2025. Then we go to the next step, as detailed in the letter.

In the coming days, I will be creating a wider campaign for the community to get involved in to apply pressure over the next 6 weeks.

Stay tuned!

ps. I could do with a hand with creating content and admin for this campaign so please let me know if you are able to give me an hour or two of your energy per week. Get in touch! 

The post Shake It UP – Formal Complaint re Negligence in Patient Safety first appeared on ME Foggy Dog.

As many of you are aware, the Assisted Dying Bill is being introduced to Westminster on 17th October 2024 and will be debated/voted on later in the year. This is a contentious issue that many people have very strong and emotive opinions about.

To be clear – I am not against euthanasia when a person has taken the difficult decision to end their own life. Dignitas currently offers a way out for the minority who feel this is the path for them. Assisted suicide via Dignitas is not an easy process, the person goes through, as far as I am aware, rigorous screening to make sure there is no coercion involved. This is not an advert for Dignitas, I am simply sharing information to make it clear what their ‘screening’ involves.

Extract from brochure (link above)

In accordance with this purpose the activities of DIGNITAS comprise, amongst others:

• Counselling in regard to all end-of-life issues
• Cooperation with physicians, clinics and other associations
• Carrying out Patient’s Instructions and patient’s rights with regard to doctors and clinics
• Suicide- and suicide-attempt prevention
• Support in conflicts with the authorities, with the management of nursing homes and with doctors not chosen by the patient
• Further legal developments in regard to questions about “the last issues”
• Accompaniment of dying patients and assistance with a self-determined end of life.

I feel much of the current debate around assisted suicide will lead to chronically ill and disabled people being at a higher risk of coercion (family/doctors) and these groups need to be considered EXTENSIVELY within this debate.

I know there have been members of our M.E. community who have taken the difficult decision to end their life in Switzerland and my heart breaks that they felt they couldn’t continue living due to the obscene lack of treatments, care, or cures for M.E.  It is usually societal, healthcare, and Government failures that cause people with M.E. to opt for assisted suicide rather than having a terminal illness.  While these societal, healthcare, and Government failures persist, I think it is immoral to have the Assisted Dying bill on the agenda. Why is there not an Assisted Living bill up for debate? Why is the Government in Westminster not concentrating on improving social care/palliative care/funding research into neglected diseases?

As a resident in England, I wrote to my own MP (Stephen Morgan MP) as myself and ME Foggy Dog/Stripy Lightbulb CIC with my concerns which I hope he considers before voting during the debate.

SUBJECT LINE – Please vote against the assisted dying bill

I am writing to express my deep concerns regarding the Assisted Dying Bill currently being considered in Parliament.

While I believe in the importance of personal autonomy and choice, I fear that this legislation could mark the beginning of a very slippery slope. Without strict regulations and robust safeguards, we risk normalising assisted suicide in a way that could endanger vulnerable populations, including those living with chronic illnesses like M.E.

The experience in Canada with their Medical Assistance in Dying (MAID) program raises significant concerns. Reports indicate that individuals with disabilities and chronic conditions often feel pressure to consider assisted dying as a viable option due to a lack of adequate support and resources. We must ensure that any decisions surrounding life and death are made free from coercion and reflect true autonomy. With the recent backdrop of the COVID19 inquiry’s recent findings on DNRs issued inappropriately to chronically sick and disabled people at the height of the ongoing pandemic, it is right to approach this subject with extreme caution – not hastily at the request of a terminally ill celebrity.

I strongly advocate for a comprehensive government and public review of this issue, aimed at developing ground-breaking solutions that prioritise improved healthcare, mental health support, and palliative care. By focusing on enhancing the quality of life for all, we can foster a society that truly respects individual choice without compromising the safety and dignity of our most vulnerable citizens.

Thank you for considering my perspective. I urge you to vote against the Assisted Dying Bill to protect the rights and well-being of those with disabilities and chronic illnesses.

The post Assisted Dying Bill 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.

There is the argument that previous role-holders didn’t do a very good job, that disabled people’s quality of life, finances, opportunities and health inequalities have never been worse and so ‘what have they ever done for us’ has been said repeatedly online in the past 6 days, but to have no representation at all is as low as it can get in terms of an ability to have a voice in Parliament.

It means that Vicky Foxcroft MP is doing her job with her hands tied behind her back (which is where the rumour of ‘phasing out’ comes from) as she has no ‘opposing Minister’ to hold to account as the Shadow Minister. How long before Vicky is told her Shadow role is being dissolved? I hope that doesn’t happen as she has been incredibly helpful and supportive with my M.E work over the past 3 years and there is clearly a need for the work she does.

Here is the Gov.uk webpage that outlines the responsibilities of this role.

Here are just a selection of questions tabled by Vicky Foxcroft MP in the past month to give an idea of the range of issues dealt with within this role

To ask the Chancellor of the Exchequer, whether he has made an assessment of the potential impact of the Autumn Statement 2023 on the finances of people with complex disabilities.

To ask the Secretary of State for Work and Pensions, how much his Department has spent on the Health Transformation Programme. (Raised on my behalf – relates to a Stripy Lightbulb CIC project)

To ask the Secretary of State for Work and Pensions, what steps his Department plans to take to support people with (a) arthritis and (b) musculoskeletal conditions who have been out of work for longer than six months into work.

To ask the Secretary of State for Work and Pensions, what assessment he has made of the potential impact of the proposed changes to the Work Capability Assessment on disabled people’s finances.

To ask the Secretary of State for Work and Pensions, how many British sign language users accessed Jobcentres in the most recent period for which data is available.

To ask the Secretary of State for Work and Pensions, what assessment he has made of the impact of phone-based applications for Personal Independence Payment on people with energy-impaired illnesses. (Vicky Foxcroft asked this question on my behalf with a Stripy Lightbulb CIC-related project)

To ask the Secretary of State for Health and Social Care, how many calls were responded to by mental health ambulances in London in each of the last 12 months for which data is available.

I would ask anyone reading this blog to support Disability Rights UK’s demands to have this Minister for Disabled People role refilled – information here

I have no idea who would fill this vacant position but, in a perfect world, it should be someone with either a lived experience of having a disability OR supporting/caring for a disabled person. I’m dreaming though aren’t I? Particularly given this role is housed within the Department for Work and Pensions remit. Cynic….me? Absolutely.

Foggy tweeted Prime Minister Rishi Sunak this week and said he would like to apply for the position. As he wrote, he ‘gets’ disability and is AWESOME. If you support Foggy in his quest please tweet your support using #Foggy4MP

Paws crossed this vacancy is filled soon, disabled people and related issues have already been neglected for 6 days – Team Foggy think this is completely unacceptable.

Love from Sally

and Foggy OBVIOUSLY xx

ps. Foggy is now with his next Foggy-Sitter, they will be heading off on adventures next week. Exciting times ahead – Transatlantic flights and a Mediterranean cruise within the next 3 weeks!

Don’t forget to donate – Thank you and Foggy snogs xx

The post Why Do We Need A Minister For Disabled People? 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.

I thought I had got out of the habit of ‘grabbing rest’ but it seems to have made a return due to the hot weather.

I have fond (NOT) memories of needing to ‘grab rest’ when I worked full time, making the most of every spare second in which I could lay flat and close my eyes. When I was still in employment my morning routine would be make/eat breakfast, get dressed, sit on my bed to put make up on, lay flat for 2 minutes before heaving my body off my bed, and dragging myself to my car to make my way into work. That sense of dread that the 2 minute ‘energy grab’ wouldn’t last long and wondering when I would next be able to ‘rest’. By ‘rest’ I mean, sit/lay down somewhere quiet for more than 2 minutes.

Self-employment means I have far more control over my energy usage and, of course, the commute to work now involves walking through my house, across the decking, past the fishpond (saying ‘hello fish’ on the way past), and across the lawn to Foggy HQ rather than a 10 minute drive in heavy traffic and a 2 minute walk from the carpark to the place I worked.

I enforce rest breaks now, I ‘designed’ the office interior to made sure that I had enough space for a ‘gamer beanbag’, which has a kind of headrest built in. Fortunately for me, my Hypermobility

Syndrome means I don’t have difficulty getting down low to sit on it! It has been very amusing to see my parents attempt to sit on it with accompanying groaning and contortioning! Every hour or so, or when I get that slightly confused feeling that is the alert that energy is starting to wane, I move 4 ft to my right, flop onto my beanbag and listen to a mindfulness exercise on YouTube. 5 minutes of enforced ‘switching off’ and the confusion recedes again.

However, this current spell of hotter-than-usual weather has thrown by body off kilter. I had got into the routine of starting work at 9, rest breaks, lunch at 12, sleep, bit more work mid-afternoon then ‘clock off’. However, it is now too hot to work inside Foggy HQ after 11am every day, I’m not a fan of working in the evening (my M.E isn’t very keen either!) so I’m now trying to get into the habit of starting work at stupid o’clock when it is cool so I have done most of my work before 11 am. This change of routine is making my M.E go haywire…add in a high pollen count and I am more perma-knackered than usual at the moment.

This week, my morning routine has been cuppa at 6.30am (I wake up between 5.23-6.35am every morning – don’t want the neighbours to think there are intruders in the garden so I wait until at least 6.30am!), head to the office in PJs, turn laptop on – rest break while laptop warms up (so slow!), an hour of work, head into the house to have breakfast and get dressed  – grab 5 minutes of rest on my bed, head back to the office, another hour of work, beanbag/mindfulness rest break, more work then at 11am head ‘home’, and grab 5 minutes of rest laying flat on my bed with the curtains drawn. I do a bit more work later in the day on my laptop in front of the tv but the heat is making ‘usual’ working impossible.

The high pollen count is making me feel incredibly sleepy and so when I am ‘at home’ not working I spend most of my time propping my eyelids open! I find myself ‘grabbing rest’ at every opportunity as the pollen/heat combination is wiping me out. My parents are getting used to me disappearing for hours on end at usual times (for me) when I literally cannot keep my eyes open (pollen – not M.E) but naturally, the change in routine is also having a knock-on effect on my M.E.

Do you ‘grab rest’? Is it a sign to you, as it is to me, that your routine is off kilter? Perhaps it’s a sign that my energy management prowess has dipped over the past few weeks. After 16 years of practice, it’s a reminder that M.E is never static as it always has to adapt to its environment and new routine.

Love

Sally

and Foggy OBVIOUSLY xxxx

ps. Foggy’s globetrotting adventuring is returning in July 2023, get in touch if you can help him with his adventuring in mid-July – August.

The post M.E and Grabbing Rest first appeared on ME Foggy Dog.