Foggy Followers! 

Halloween is creeping up, and we’ve brewed up something special for the M.E. community that doesn’t require broomsticks, bonfires, or bouncing off the walls with energy we don’t have.

Introducing… Halloween Storytime with Foggy’s P.A.! 🧙‍♀️📖

We know that joining in with seasonal fun can be tricky when you live with M.E., energy is in short supply. That’s why this event is designed to be as easy and accessible as possible. You can tune in from your bed, sofa, or wherever you’re most comfy. Dress up spookily if you fancy it (or not, your PJs totally count as costumes in our book).

Foggy’s P.A. will be reading aloud from Toby and the Silver Blood Witches, a brilliant book written by fellow pwME Sally Doherty. With a reading age of 9–11, it’s just spooky enough to feel Halloween-y, but not so scary it’ll make your heart race like you’ve just climbed Everest. No fright night here, just a gentle, magical story with witches, mystery, and a sprinkle of eerie fun.

💜 Why It’s Perfect for Us

We know we’re asking a lot of the community during this week, October 29th is BED Day for Severe M.E., and it’s a time for campaigning, and awareness. But Halloween Storytime is a little win. It’s a chance to feel part of something joyful, without needing to use up precious energy.

You can lay back and listen, or join in with the fun if you’re able. No pressure, no expectations, just a lovely moment to share together.

So grab your blanket, your pumpkin socks, or your foggy foghorn (optional), and let’s make Halloween a celebration that includes all of us.

🎧 Tune in. Chill out. Let the witches do the work.

Love,
Foggy and his P.A. Sally 💙🦴

The post 🎃 Halloween Storytime: A Spooky Treat You Can Enjoy from Bed! 🛌👻 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 You can simply say those not able to attend in person, you don’t need to use offence, outdated language to police the Good Crip boundary.’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.

An enormous, heartfelt thank you to every single one of you who contributed to the ME Foggy Dog crowdfunder! Thanks to your incredible generosity, we’ve not only reached our target, but we’ve surpassed it, achieving an amazing 103% of our goal!

We’re absolutely blown away by your support. This means that ME Foggy Dog’s essential basic overheads are now covered for an entire year, giving us invaluable stability and the freedom to focus on our mission.

Our Mission Statement –

To improve the quality of life of M.E. patients using every available means and opportunity.

The crowdfunder is now officially closed, but please remember: if you wish to continue supporting ME Foggy Dog, there’s always a PayPal link on our homepage for donations (also linked HERE). Regular payments are also an option! Your continued contributions allow us to seize opportunities without financial limitations, whether it’s for vital awareness events or essential printed materials. Simply put, more money means more can be achieved.

Thank you, you’re all AWESOME!

Love

Sally (and Foggy OBVIOUSLY) xx

The post M.E. Foggy Dog: Crowdfunder Success! first appeared on ME Foggy Dog.

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

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

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

My M.E-addled brain wrote this question –

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

Here’s the answer!

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

1. Calculate the prevalence rate:

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

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

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

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

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

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

3. Calculate the prevalence as 1 in ?:

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

• 1 / 0.0187 ≈ 53.48

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

Important Considerations:

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

For instance, using a 0.45% prevalence rate:

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

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

THIS is why we need a biomarker.

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

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

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

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

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

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

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

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

Love

Sally

and Foggy (OBVIOUSLY).

ps. In case you have missed this.

Behind the Scenes: Supporting the Essentials Crowdfunder.

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

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

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

Pledge funds here 

Thank you.

The post Prevalence of M.E. or ‘M.E.-Like Illness’ first appeared on ME Foggy Dog.

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

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

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

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

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

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

Sally

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

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.

Our stories are precious, vital chronicles of our experiences.

Too often, our voices echo only within the bounds of our community.

But the people who truly need to hear us – doctors, psychologists, NHS managers, and government officials – remain largely uninformed about the devastating impact of this illness.

If you would like your story to be included in our compendium, which will be presented to those people in righteous fury, then this is your opportunity.

Share your story, or even a snippet, whatever you can manage. Whether it’s 100 words or 2,500, every voice matters.

Feel free to express sadness, anger, hope, or optimism, but above all, be truthful.

Please avoid naming any medical professionals unless quoting from publicly available material.

Otherwise, anything goes. Tell us your story, and we’ll tell the world.

You can be named or anonymous – your choice.

Martin Lev, a child actor who played gangster Dandy Dan in the film Bugsy Malone, killed himself in 1992. He suffered from M.E.

Thirty years later, we are still seeing this happen. From suicides to assisted dying, this is unacceptable. Help us to bring an end to inaction, neglect and indifference.

Send your stories to Chris Ritchie: chrisritchie75@gmail.com

This is an expansion of the pandemic book project Chris and I have been co-producing since February 2024.

Reminders

• No one is being paid for contributions to/working on this project
• Any proceeds will go to M.E. organisations to benefit pwME
• International contributions are welcome

The post Compendium: We Want To Include YOUR M.E. Story first appeared on ME Foggy Dog.

The post Why Campaigning for People Living with Myalgic Encephalomyelitis Matters So Much to Me first appeared on ME Foggy Dog.

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

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

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

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

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

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

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

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

Thank you for your attention to this critical issue.

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

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

Contact – sally@mefoggydog.org

About ME Foggy Dog

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

[End of Press Release]

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

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

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.