campaigning – ME Foggy Dog

Open Letter to the British Paralympic Association About the Need for a Caveat

Sally Callow — Mon, 02 Sep 2024 07:41:08 +0000

Dear Members of the British Paralympic Association,

I hope this letter finds you well. I am writing to you as a concerned supporter of the Paralympic movement, and as an advocate for the rights and dignity of chronically sick disabled people with Myalgic Encephalomyelitis worldwide. The Paralympics have always been a powerful platform, celebrating the resilience, strength, and achievements of athletes with disabilities. They challenge perceptions, break down barriers, and inspire millions. However, I wish to address a matter of significant concern regarding your #EveryBodyMoves campaign, which I believe warrants urgent attention and rectification.

While the campaign’s intention to encourage physical activity and promote inclusivity is commendable, it unfortunately overlooks a critical reality: there are a large number of disabled people who are physically unable to engage in exercise or physical activity due to the nature of their disabilities. For these individuals, the campaign’s message can be both exclusionary and inadvertently stigmatising.

The slogan #EveryBodyMoves, though well-meaning, implies a universality that simply does not exist. It risks reinforcing harmful stereotypes by suggesting that everyone, regardless of their physical condition, should be able to move or exercise. For those whose disabilities prevent them from doing so, this can lead to feelings of inadequacy, frustration, and a sense of being misunderstood or overlooked by the very community that is supposed to represent and support them.

To address this issue, I respectfully request that you consider including a caveat in your partnership promotional material (in the UK this is on Channel 4 with Toyota but includes other content with Nestle, Adidas, Aldi, British Gas, Dreams, and Bupa amongst others) acknowledging that while physical activity is beneficial for many, there are individuals with disabilities who are physically unable to engage in such activities. It is important to emphasise that the Paralympic movement values and supports all disabled people, regardless of their ability to participate in sports or physical exercise.

This inclusion would not only make the campaign more inclusive but also demonstrate the British Paralympic Association’s commitment to truly representing the diverse experiences of disabled people. By acknowledging the limitations some face, you would be sending a powerful message that the Paralympic movement is for everyone, not just those who can compete or move in a conventional sense.

I trust that the Association will take this suggestion in the spirit it is intended—one of constructive criticism and a desire to ensure that the Paralympic Games continue to be a beacon of hope and inclusion for all. I believe that by making this adjustment, the campaign can better reflect the diverse realities of disabled people and avoid unintentionally alienating those who already face significant challenges.

Thank you for your attention to this matter. I look forward to your response and hope to see the Paralympic movement continue to grow in its role as a leader in promoting true inclusivity and understanding.

Sincerely,

Sally Callow

Founder: ME Foggy Dog, UK social enterprise.

Email – sally@mefoggydog.org

Please sign this open letter to the Paralympic Association here – Open letter

ME Foggy Dog raised also the issue of a lack of a caveat during the Paralympics in 2021 – Read it here

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Why Campaigning for People Living with Myalgic Encephalomyelitis Matters So Much to Me

Sally Callow — Mon, 19 Aug 2024 03:31:20 +0000

Living with Myalgic Encephalomyelitis (M.E.) is a battle I never expected to fight. The symptoms are relentless—overwhelming neuro-exhaustion, cognitive difficulties, and a host of other challenges that make everyday life feel like a marathon with no finish line. Yet, the struggle is not just against the disease itself, but also against the widespread misunderstanding and neglect that surrounds it. That’s why campaigning for people living with M.E. matters so deeply to me—because it’s not about raising awareness; it’s about survival, dignity, and hope.

The Silent Suffering

M.E. is often referred to as an “invisible illness,” it’s a description I am not personally keen on, but it’s a term that reflects how its symptoms are not always visible to the outside world. But just because the pain, neuro-exhaustion, and cognitive difficulties can’t be seen, doesn’t mean they don’t exist. The ‘invisibility’ of this condition has led to a profound lack of understanding and empathy from those who don’t experience it first-hand. For many of us, this has resulted in years, often decades, of being dismissed by healthcare providers, misunderstood by friends and family, and overlooked by society at large.

When I campaign for change for the M.E. community, I’m fighting for recognition of this silent suffering. I’m advocating for a world where people understand that just because someone looks “fine” on the outside doesn’t mean they’re not enduring a daily struggle on the inside. This understanding is the first baby step towards adequate care, more research, and ultimately, treatment options.

The Need for Research and Treatment

One of the most frustrating aspects of living with M.E. is the lack of effective treatments. Despite affecting millions of people worldwide, M.E. remains under-researched and underfunded. This means that many of us are left to manage our symptoms on our own, with very little guidance or support from the medical community.

Campaigning for M.E. is, therefore, a matter of urgency. It’s about pushing for equitable and appropriate care from our healthcare organisations. It’s about making sure that the next generation of people diagnosed with M.E. doesn’t have to endure the same uncertainty and neglect that so many of us have faced for so long.

Fighting for Visibility and Validation

Living with M.E. can feel incredibly isolating. The nature of the disease often forces us to withdraw from social activities, work, and even our own families. On top of this, the lack of awareness about M.E. means that many people don’t even believe the illness is real, leading to a deep sense of invalidation.

When I campaign for M.E., I’m not just fighting for myself—I’m fighting for every person who has been told that their illness is “all in their head,” for everyone who has lost friends because they couldn’t keep up with social commitments, and for everyone who has had to give up their dreams because of this disease. Through my campaigning, I hope to create a world where people with M.E. are seen, heard, believed and cared for.

Purpose

The M.E. community is one of resilience, strength, and solidarity, and by campaigning, I hope I contribute to that spirit.

Campaigning gives me a sense of purpose and hope. It allows me to channel my frustration and anger into something positive—something that might make a difference for others living with M.E. It’s about standing up and saying, “We’re here, we’re struggling, and we deserve better.” And it’s about ensuring that one day, we will live in a world where M.E. is not just recognised, but understood, treated, and ultimately, cured.

Why It Matters

Campaigning for people living with M.E. is deeply personal to me because it’s about far more than just raising awareness—it’s about fighting for recognition, research, and respect. It’s about ensuring that the next generation of people to live with M.E. don’t have to face the same challenges alone. And most of all, it’s about creating a world where people with M.E. are seen, heard, believed and cared for. Until that day comes, I’ll keep fighting—for myself, for the millions of others like me, and for the future we all deserve.

Sally

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ME Foggy Dog’s Ongoing Campaign: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E)

Sally Callow — Wed, 17 Apr 2024 15:27:15 +0000

Hi,

As M.E Foggy Dog supporters know, I started actively campaigning for an NHS protocol for severe M.E and better adherence to NICE guidelines in NHS hospitals in mid-February 2024. This blog specifically relates to the campaign for an NHS protocol.

The NHS protocol is now 2 months along and I have made no progress but I will be transparent about the responses received and what action I am planning next.

You can see the ‘Open letter’ urgently calling for an NHS protocol via the link above (please sign/share if you haven’t done so already – thank you). Because the UK is made up of separate nations, the ‘open letter’ version is only addressed to Victoria Atkins MP, Secretary of State for Health and Social Care: I live in England and most Governments prefer to deal with residents of their own country usually. However, I also sent copies of this open letter to the Ministers in charge of Health in Scotland and Wales, addressed to Neil Gray MSP (Scotland) and Eluned Morgan MS (Wales).

17th April 2024, I can confirm I have yet to receive a reply from Victoria Atkins or any of her staff. A paper copy was sent via recorded delivery after the ‘open letter’ had been live for 2 weeks (27th February) gathering signatures and comments, a copy was also sent to Wes Streeting MP (Shadow Health Minister) – no response received.

I have however, received responses from Scotland and Wales. See details below:

Wales

Email received 11th March 2024

Dear Sally Callow,

Thank you for your email of 2 March to Eluned Morgan MS, Minister for Health and Social Services. We have been asked to reply on this occasion.

The Minister was very grateful to receive your suggestions on services for people with ME and has passed them on to her officials who advise her on these issues.

Thank you again for taking the time and trouble to write on this matter.

Yours sincerely,

Tîm Busnes y Llywodraeth | Government Business Team

Y Grŵp Iechyd a Gwasanaethau Cymdeithasol | Health and Social Services Group
Llywodraeth Cymru | Welsh Government

Scotland

Email and pdf letter response received 2 April 2024

Dear Ms Callow,
Thank you for your email dated 2 March to the Cabinet Secretary for NHS Recovery, Health and Social Care, Mr Gray, sharing your concerns for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and highlighting the open letter currently gathering signatures from members of the Organised network.

ME/CFS sits within the remit of the neurological conditions team, and I have been asked to respond to you.

Thank you for sharing this open letter with us, which we note with interest. We recognise how distressing and debilitating severe ME/CFS can be, and we want to ensure that people can access the care and support they need to manage their condition.

In October 2021, the National Institute for Health and Care Excellence (NICE) published a guideline on the diagnosis and management of ME/CFS, which includes clear and specific guidance regarding the care of people with severe or very severe forms of the condition. The Scottish Government wants the disbelief around ME/CFS to end and have already made a visible commitment to supporting the key changes within the NICE guideline. In July 2022 the National Clinical Director wrote to health boards to raise awareness of the guidance and its implementation, and to highlight key changes in recommended practice.

The Scottish Government have clear standards regarding the quality of care that everyone should be entitled to across our health and social care services: https://www.gov.scot/publications/health-social-care-standards-support-life/pages/1/. Standard 4.11 sets out a clear expectation that a person should experience high quality care and support based on relevant evidence, guidance and best practice.

Regarding staff training and education, as per Standard 3 of Health Improvement Scotland’s (HIS) General Standards for Neurological Care and Support, the Scottish Government expect health and social care services to train and educate their staff, aligned through professional frameworks where appropriate, to develop and maintain the skill and knowledge appropriate to their role.

We are supportive of patient involvement and expect organisations to ensure that people living with a neurological condition are fully informed and supported at all stages, as per Standard 7 of HIS’ General Standards.

Thank you again for contacting us, and I hope this response has been helpful.

Yours sincerely

XX
HPQ : Clinical Priorities

As you can see, I/we haven’t got very far. Nothing to see here’, ‘We’re already dealing with it’.

UPDATE – After receiving the Scottish response I submitted a Freedom of Information request to see how many times M.E has been mentioned within this ‘Neurological Conditions Team’ work. I already know the answer to that for Wales (been ‘working with NHS/politicians in Wales for 2 years collaboratively) so know that what already exists is not adequate or appropriate and M.E hadn’t been mentioned in over 2 years of ‘Neurological Group’ meetings.

Kat Gower (awesome friend of Team Foggy and Stripy Lightbulb supporter who lives in Wales) and I have already discussed this with a Member of the Senedd and it will be raised within the Senedd. Due to timing, we have had to wait until after Easter and other periods of leave. When I have more to share, I will keep you updated.

SHOUT OUT FOR RESIDENTS OF WALES AND SCOTLAND – I NEED YOUR HELP!!

I am obviously going to have to push hard to show that the lived experience does not match the rhetoric or processes currently in place. Please get in touch if you have lived experience of severe M.E (patient, family, or carer) and want to help me to get a protocol for severe M.E implemented in the NHS in YOUR COUNTRY. I can’t do this without your help and would like as much patient/family/carer participation as possible.

Email – sally@mefoggydog.org.

Love Sally

and Foggy (OBVIOUSLY)

ps. Posting the link again here so it can’t be missed!! NHS protocol ‘open letter‘ please sign and share. Thank you.

The post ME Foggy Dog’s Ongoing Campaign: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E) first appeared on ME Foggy Dog.