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.

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.

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 was unfair to Andrew Gwynne MP during Friday’s Instagram/Facebook Live and that is why I am writing this blog. I’ll admit that I skim read his letter response, received on 4th November 2024, as I am so used to getting generic replies it went in one eye and out the other. I only registered the generic paragraphs that I have received many times before from previous Health ministers. These generic responses are in part due to the correspondence team who receive many emails/letters and have to respond using templates due to time constraints. I get that. It doesn’t make it any less frustrating when I have poured my heart and soul (and valuable energy) into a campaign/project only to receive a reply that feels like a fob off.

Tip to the correspondence team – You don’t need to tell an advocate of over 10 years and manager of two social enterprises which work for the M.E./C.F.S community about the M.E./C.F.S. Delivery Plan or Decode M.E. Particularly when I have contributed to or promoted that work in the past.  You don’t need to educate me (or many in our community).

Here is the response received from Andrew Gwynne MP’s team. The original correspondence was sent by my MP on my behalf as a constituent and the manager of social enterprises in his constituency.-

Stephen Morgan MP
By email to: ******@parliament.uk

4 November 2024

Dear Stephen,
Thank you for your correspondence of 7 October to the Secretary of State on behalf of your constituent Ms Sally Callow about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

I was sorry to read of Ms Callow’s health difficulties, and I appreciate her concerns and suggestions.

I would first like to recognise the important work that Ms Callow has done to date and thank her for her ongoing interest in, and contribution to, the response to ME/CFS. I would also like to take this opportunity to assure you that the Government fully understands how debilitating ME/CFS can be and is committed to improving the lives of people living with the condition. I have been having a number of meetings in my first weeks as minister to look much more closely at ME/CFS.

We want a society where everyone, including those with one or more long-term conditions, and their families and carers, receives high-quality, compassionate care with continuity. We will change the NHS so that it becomes not just a ‘sickness service’, but able to prevent ill health in the first place. This will help us to be better prepared for the change in the nature of disease and allow services to focus more on the management of chronic, long-term conditions, including ME/CFS.

I am grateful to Ms Callow for forwarding the NHS protocol campaign document for ME/CFS and the ME Friendly Hospital Charter, which I have passed to Departmental (Grateful it was passed along but I had already shared the document with my connections within this team – no reply received yet) officials leading on ME/CFS. The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This
course involves important feedback and input from patients with lived experience. (Surely a quick online search by admin staff would have shown I created/manage my own online training company (social enterprise) over 6 years ago?! Yes, I am aware of my new competition! I know more about M.E./C.F.S education than most people – been there, DO that)

People with ME/CFS deserve the most appropriate treatment and should have confidence that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services and a better understanding of the condition has the potential to make a huge difference to the quality of life of people with ME/CFS.

Regarding specialised care pathways, ME/CFS services are commissioned by integrated care boards (ICBs) to meet the needs of their local populations. ICBs are not reviewed or assessed by NHS England centrally. It is the duty of clinicians to keep themselves apprised of best practice, in particular around guidance issued by the National Institute for Health and Care Excellence (I know this – it’s why I am going direct to ICBs and other regional healthcare providers).

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study can be found at www.decodeme.org.uk. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS. These applications are subject to peer review and judged in open
competition, with awards made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

In addition, I am committed – it has been a priority since my appointment – to publishing the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are finalising the response, which should come to me very soon. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish this coming winter. We recognise that there is more to be done, but I hope this letter assures you and Ms Callow that we are taking the matter seriously.
Yours sincerely,

ANDREW GWYNNE

I am grateful that my efforts have been acknowledged, when M.E. work feels like a relentless slog it can be a comfort to know I am not completely unseen by ‘the powers that be’. Quiet recognition of hard work is a great motivator when I feel like giving up (that brick wall often feels insurmountable).

At the end of the day, it is still just words and we are still waiting for any positive action to move our community forwards. However, as I stated at the start of this blog, I unfairly criticised Mr Gwynne last week and for that I apologise.

Onwards and upwards!

The post Rethinking My Response To Andrew Gwynne MP During Last Week’s Instagram / Facebook Live 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.

The List

1. Other than on the socials of advocates and people living with M.E, have you seen ANYWHERE that 1.25 million+ people in the UK now meet the diagnostic criteria for Myalgic Encephalomyelitis? It has yet to be stated in MSM.

2. M.E is hardly ever mentioned in articles about Long Covid (est 1/50 articles and then mentioned as ‘similar’ or ‘overlaps’). It has STILL not been made public knowledge that half of long Covid cases meet M.E/CFS diagnostic criteria. Covid19 can lead to M.E or M.E-like chronic illness – again, no mention in MSM.

3.The UK Govt (and most/all Govts worldwide) have not acknowledged Covid causes M.E. (cases meet M.E criteria)

4. This lack of acknowledgement means we have no hope of increased research funding for M.E. M.E has always been GROSSLY underfunded by Govts.

5. Prior to Covid, M.E research received around 50p-£1.50 per patient per year in the UK. Comparable diseases such as M.S and Parkinson’s got around £40-£60 per patient per year. Why the difference?

6. 5% of people living with the disease have a very poor quality of life. Research shows it is as poor as in people with late stage cancer or late stage renal failure – this can go on for years/decades. There is no appropriate care/support for these very ill people.

7. Those on the ‘milder’ end of the spectrum have lost 50%+ of pre-M.E functionality. Yet this is rarely acknowledged by DWP, medics, and others who make ill-informed decisions about the person’s life.

8. Redefining Gravity will raise a MINIMUM of £1million for M.E biomedical research for Cure ME/MECFS Biobank and tackle the stigma by raising awareness of the disease on a large scale.

9. It’s obvious Govts and MSM will continue to stranglehold the funding M.E receives AND the narrative around prevalence/Covid/Long Covid. So we create our own narrative. We ‘redefine gravity’ –

10. We create something ourselves that is so big it CANNOT be ignored.

11. This is why I want A-list artists to perform. Their ‘reach’ is what our cause needs.

12. Redefining gravity is a CHALLENGE. I figure, if I’m going to do it….DO IT!! Dream big, reach for the stars and see what happens.

13. ‘Challenge’ = No budget. It can only be a success through VOLUNTARY and GOODWILL contributions of time, effort, skills, materials, and talent. Think ‘Challenge Anneka’. If Anneka Rice can do it….. why can’t I? (I’ll give it a good try at least!)

Get in touch if you can/want to help. I particularly need guidance from people with experience/expertise in the music industry and event management. But many hands make light work and all that, the more hands the better!

The JustGiving page for Redefining Gravity has been live since July 2023 and will be accepting donations until after the concert in July 2024, you can donate at any time. All donations go direct to Cure ME/M.E./C.F.S. biobank.  DONATE HERE – THANK YOU

Please follow the socials for this challenge, you can find it on X and Instagram using the handle @RDGravityME. Help to spread the word.

We have merch! (as you can see me wearing in the main photo above) Buy yours today via the website.

WEBSITE – WWW.REDEFININGGRAVITY.CO.UK

£1 million (MINIMUM) ….here we come!!

The post List of Reasons Why This Redefining Gravity Benefit Concert Is Needed 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.

This reporting system is still necessary.

Dear Secretary of State, 

 

I am writing to you again regarding my campaign for a reporting system to report harms from non-pharmaceutical ‘treatments’. I have previously been told by your Department multiple times that the need for this system no longer exists due to the NICE guideline.

 

However, I have myself provided proof that recommendations to ‘increase activity’ and participate in CBT are continuing post-guideline publication.

 

To reinforce what I have been telling your department for the past 18 months, last week The Times wrote this article the sub-heading of which states ‘National treatment guidelines published two years ago are still not widely implemented, says charity’. The charity in question was Action for M.E who have just published this research.

 

As you can see, non-adherence to the NICE guideline is rife.

 

This matters because ‘increased activity’ and CBT as ‘treatments’ harms ME/CFS patients. COVID19 has triggered 100s of 1000s of new cases of ME/CFS. I estimate there to be around 1 million cases of ME/CFS in the UK now (half of Long COVID meet ME/CFS diagnostic criteria). When these treatments remain the ‘go to’ treatments for the NHS, that is a lot of people who will be deteriorating as a direct result of non-pharmaceutical ‘treatments’. These are the people you want to get back to work, not becoming permanently disabled due to non-adherence to the NICE guideline.

 

I recently attended a UK third sector meeting, in which a representative of NHS England stated that it would be ‘impossible to implement NICE guidelines due to the pushback’ (from RCGP etc) – for a range of diseases including ME/CFS. If this is the case, we need a system to report harms if the Government has no intention of implementing the guideline.

 

I look forward to hearing from you.

I suggested the the NHS England representative that if there was no intention to implement the NICE guideline then they could, as alternatives, push forward with education or tackle the stigma that is rampant within the NHS about our disease. I could see nodding heads in this online meeting, ours is not the only community facing this problem.

My thoughts on the subject –

Please engage with Shake It Up if you haven’t done so already, there is an international petition and wider campaign for UK residents.

Check it out here! 

The post Shake It Up: Email to Steve Barclay MP – Secretary of State for Health and Social Care first appeared on ME Foggy Dog.

Sorry I haven’t posted an update for a while but other than emailing Steve Barclay MP, Secretary of State for Health and Social Care, and sharing information about the petition left, right, and centre, I haven’t had anything to report.

Until now.

I wrote to the Care Quality Commission (ENGLAND) on the 15th November 2021 about ME Foggy Dog’s Shake It UP campaign and received a generic ‘we’ll get back in touch with you’ email a month later. I realised I hadn’t received a further reply in September this year (brain fog = I forgot!) and so chased them up.

This is their response (received 22nd November 2022)

Dear Ms Callow,

Firstly, please accept my sincere apologies for the long delay in responding to your query. I understand from initial enquiries that this was due to an administrative error, but please rest assured that we are continuing to try to understand how this happened in order to prevent it from reoccurring in future.

As the independent regulator for health and social care, CQC’s purpose is to make sure health and social care services provide people with safe, effective, compassionate, high-quality care and we encourage these services to improve. We do this by fulfilling our role to register, monitor, inspect and rate providers delivering one or more of the regulated activities as set out in the Health and Social Care Act 2008.

In regulating providers delivering services for people with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and/or Long Covid, CQC would seek assurance that the service is following all relevant guidelines. Whilst we do not set standards or publish guidance ourselves, we do check that providers are meeting required standards and guidance. This includes NICE guidelines.

Where guidelines are not being adhered to, providers would be required to clearly explain the reasoning behind this and demonstrate that this decision does not affect the safety of the service. Where providers are not able to assure us that a service is safe and/or the risk of harm has been minimised, we may seek to take enforcement action against them.

Unfortunately, it is not within CQC’s remit to monitor specific treatments. However, we would encourage everyone who wants to share their experiences of health or social care in England with us to do so via our Give Feedback on Care mechanism.

With best wishes,

CQC Enquiries Team

RALLYING CRY

I know this is an extra thing for people living with M.E to think about but it is important.

If YOU, or someone you know, have been recommended ‘increasing exertion/activity’ under any name (Graded Exercise Therapy or other) or been told to take part in Cognitive Behavioural Therapy as a ‘treatment’ – please contact the CQC via the link in their email above. The CQC need to know that clinics and healthcare professionals are not adhering to the NICE guideline, as you read for yourself, the CQC can take action.

This is in addition to emailing me (Sally via mefoggydog@gmail.com) with details of who has recommended this to you so I can include it in my correspondence with Steve Barclay MP and Amanda Pritchard to PROVE that NICE guidelines are not being adhered to and patients are still being harmed.

I know this latest development doesn’t get us any closer to having a reporting system for non pharmaceutical ‘treatments’ but it is one more place to complain and subsequently create data.

I’m having to tackle this issue in multiple ways as I keep hitting brick walls.

But – SHAKE IT UP continues!

Love Sally

and Foggy (Obviously)

xx

ps. Please sign the international Shake It Up petition (8697 signatures so far) and take part in the wider campaign if you have not done so already. Thank you.

The post Shake It Up Latest – Care Quality Commission first appeared on ME Foggy Dog.