NHS – ME Foggy Dog

Severe ME, NHS Neglect, and the 2024 NHS Protocol Open Letter: What Happened, What Didn’t, and What Comes Next

Sally Callow — Mon, 03 Aug 2026 14:03:36 +0000

Severe ME was at the centre of a major ME Foggy Dog 2024-25 advocacy effort when 5,220 people with M.E signed an open letter demanding an NHS protocol. It was one of the largest collective actions from the M.E community in recent years (it’s very hard to reach people within our community – thanks to the nature of the disease itself, and algorithms!), and it represented a clear, unified message:

Severe M.E patients are being harmed, neglected, and left without safe, appropriate care. We need an NHS protocol.

Our open letter laid out exactly why urgent action was necessary. Severe M.E is a complex neuro‑immune disease that can leave people unable to sit upright, unable to eat without triggering symptoms, unable to speak, and in some cases, unable to survive without meticulous, informed care. Patients have died from malnutrition due to neglect and misunderstanding. Clinicians who do understand the disease risk referral to the GMC simply for trying to help.

And yet, despite all this, in 2026, there is still no NHS protocol for severe M.E.

What happened after the letter?

To be blunt: Nothing meaningful.

We received a generic response, from staff of each of the Secretary of State for Health and Social Care between early 2024 and late 2025, the kind many M.E advocates know all too well (paraphrasing) “The ME/CFS Delivery Plan and NICE guideline update will fix most of these problems.”

They haven’t., in fact they never could have as they simply do not go far enough.

The Delivery Plan – no comment. The NICE guidelines, while improved, do not address the realities of severe M.E. To be clear, the people who signed that letter, many of them in the same condition they were in back in 2024-25, continue to face the same barriers, the same risks, and the same lack of safe care.

Nothing resulted from the ‘next steps’ bit either, in which people living with M.E. contacted their local regional health board to highlight the campaign and the need for a protocol.

The truth is, the campaign took a toll on me personally. Pushing for change in a system that moves slowly, and sometimes not at all, is draining. As a person with M.E, social entrepreneur, and M.E campaigner, I needed to step back, breathe, and regroup.

But now, with politics settling (for the moment at least), I’m ready to get back to it. There has been far too much political disruption over the past few years but it might, just might, be starting to calm down a bit. Fingers crossed!

Severe M.E patients cannot wait another year, another election cycle, or another “plan” that doesn’t address their reality.

The open letter spelled out what is still urgently needed:

Specialised Care Pathways: Develop clear and standardised care pathways for individuals with severe M.E., ensuring access to specialist consultations, symptom management, palliative-style care, and home-based support services.
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.
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.
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.

This isn’t a niche issue, it’s a moral imperative that impacts 25% of our community. In the UK in 2026, that equates to AT LEAST 100,000 people.

The M.E community has always been resilient, often because it has no choice. But resilience doesn’t mean silence, and it certainly doesn’t mean giving up completely

So here we are: Rested, re‑energised, and ready to push again.

If you want to read the full open letter or revisit the campaign, you can find it here: https://www.mefoggydog.org/nhs-protocol-campaign/ (open letter now closed).

Sally

and Foggy (OBVIOUSLY)

The post Severe ME, NHS Neglect, and the 2024 NHS Protocol Open Letter: What Happened, What Didn’t, and What Comes Next first appeared on ME Foggy Dog.

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.

Press Release – Open Letter to Secretary of State for Health and Social Care Victoria Atkins MP

Sally Callow — Tue, 13 Feb 2024 16:07:09 +0000

[Embargo: For Immediate Release]

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.