Urgent Appeal to Address Non-Adherence to Myalgic Encephalomyelitis NICE Guidelines in NHS Hospitals

I have been campaigning to address the non-adherence to Myalgic Encephalomyelitis NICE guidelines in NHS hospitals since 24th February 2024. This campaign began with an ‘open letter’ to the General Medical Council. As I stated at the time, I knew that what I/we were demanding was outside of the GMC’s remit, however what I/we are demanding is not within any one specific organisation’s remit – that’s why we are in the mess we are in now!  The GMC were the first piece of this campaign’s puzzle.

I chose to start with the GMC as I strongly believe encouraging/enforcing adherence to the NICE guideline this SHOULD be within their remit. The whole process is upside down, the GMC should be preventative of harm and not reactionary to unprofessional acts of non-adherence.

Here is the letter that has been circulating since the 24th February 2024 and has been signed by 651 people – thank you.  This letter is now being cancelled and removed, comments were included in the correspondence to the GMC, have been saved and are being used as ‘evidence’ for future puzzle pieces!

General Medical Council Letter

I am writing to you with great concern regarding the ongoing issue of non-adherence to the NICE guidelines for Myalgic Encephalomyelitis (M.E.) in NHS hospitals across England. It has come to my attention, and the attention of many within the M.E. patient community, that a significant number of healthcare professionals are failing to adhere to these guidelines, resulting in inadequate and potentially harmful care for patients suffering from this debilitating illness.

M.E. is a complex and often misunderstood neuroimmune disease that can have profound effects on a patient’s quality of life. The NICE guidelines provide clear recommendations for the diagnosis and symptom management of M.E., outlining best practices based on the latest scientific evidence. However, it is deeply troubling to learn that these guidelines are being disregarded, leading to inappropriate care and unnecessary suffering for patients.

What is even more concerning is the apparent lack of accountability for healthcare professionals who fail to adhere to these guidelines. Patients who have been harmed or have experienced a deterioration in their condition as a direct result of substandard care often find themselves with no recourse other than to file a complaint with the General Medical Council after the fact. This reactive approach to addressing the issue is morally wrong and fails to protect patients from harm.

I must emphasize the urgency of this matter, as there are currently three very severe patients receiving dangerously inappropriate care in NHS hospitals. In at least one of these cases, medical staff have openly admitted to not believing in M.E., which raises serious questions about the quality of care being provided to these vulnerable patients. Every day that passes without intervention puts these patients at further risk and undermines the trust and integrity of the healthcare system as a whole.

I urge the General Medical Council to take the following steps:

-Conduct a thorough investigation into the extent of non-compliance with the M.E. NICE guidelines within NHS hospitals across England.

-Enforce strict penalties for healthcare professionals and institutions found to be in violation of these guidelines, including appropriate disciplinary measures where warranted.

-Implement comprehensive training programs to educate healthcare professionals about the nature of M.E., the importance of adhering to NICE guidelines, and the impact of their actions on patients.

-Advocate for increased funding and resources to support the implementation of NICE guidelines and improve access to specialist care and treatments for patients with M.E.

Inaction is no longer an option. We cannot continue to allow the systematic neglect and mistreatment of individuals living with M.E. to persist unchecked. It is time for the General Medical Council to fulfil its duty to uphold the highest standards of medical practice and ensure that all patients, regardless of their condition, receive the care and respect they deserve.

Thank you for your attention to this urgent matter. I trust that you will take swift and decisive action to address these concerns and uphold the highest standards of medical care in the United Kingdom.


Sally Callow
Founder – M.E. Foggy Dog (social enterprise)


Snippets of the GMC Reply received 2nd April 2024

We have carefully considered the information provided, and while we appreciate your reasons for writing to us, we don’t feel that these are issues that would warrant further GMC action being taken. We are sorry if this is not the outcome that you were hoping for.

The GMC can only consider concerns about individual doctors to determine whether they are fit to practise medicine in the UK. No specific instances where doctors have failed to follow guidelines have been detailed in your correspondence (I deliberately did not include specific details of the four people who are currently in hospitals as it is not my place to log these complaints – if appropriate)

Systemic concerns about the compliance of Hospital Trusts with NICE guidelines should be raised with the CQC’

My Reaction to the GMC reply


Email Sent to The Care Quality Commission on 3rd April 2024 (CQC = England only)

I am writing to you today with grave concerns regarding the non-adherence to the M.E. (Myalgic Encephalomyelitis) NICE (National Institute for Health and Care Excellence) guideline in NHS hospitals across England. This issue demands immediate attention as it not only represents a violation of established medical standards but also poses significant risks to the well-being and lives of patients suffering from this debilitating condition.

Myalgic Encephalomyelitis, often still referred to as Chronic Fatigue Syndrome, is a complex and debilitating illness that affects millions of people worldwide. The prevalence of M.E has more than tripled during the pandemic and it is estimated (by national charities) that the UK now has an estimated 1.25 million cases of M.E. and post-COVID M.E. Despite its prevalence, the understanding and treatment of M.E. within the medical community have often been marred by misconceptions, false beliefs about the disease and inadequate care. This is precisely why the NICE guidelines were developed – to provide evidence-based recommendations for the diagnosis and management of M.E., ensuring that patients receive appropriate care and support.

It beggars belief that in April 2024, most if not all, NHS hospitals (ICBs) do not have a protocol or policy in place to care for severe M.E patients in need of hospital care. This is why adherence to the one and only medical guideline on M.E. that is available in the UK is important and necessary.

There are currently four very severe M.E. patients in various regions of England where NHS hospitals are failing to adhere to this essential NICE guideline, resulting in the provision of inappropriate and potentially dangerous care for M.E. patients. One of these patients was inappropriately sectioned (court reversed the decision) and has severe malnutrition which is not being treated appropriately. This is deeply troubling on multiple fronts.

First and foremost, the failure to follow established guidelines jeopardizes the health and well-being of M.E. patients. These guidelines are not arbitrary; they are the product of rigorous research, expert consensus, and a commitment to improving patient outcomes. When hospitals deviate from these guidelines, they risk exacerbating the symptoms and suffering of M.E. patients, potentially leading to irreversible harm or even death.

Furthermore, the refusal to adhere to the NICE guideline reflects a broader issue within the medical community – the dismissal or disbelief of certain illnesses, including M.E. Such attitudes not only undermine the trust between patients and healthcare professionals but also perpetuate the stigma and neglect experienced by individuals with M.E. This is unacceptable and goes against the fundamental principles of medical ethics, which dictate that all patients should be treated with dignity, respect, and evidence-based care, regardless of the clinician’s personal beliefs.

It is morally reprehensible to only address these issues after harm has been inflicted or patients have deteriorated. Every M.E. patient deserves access to appropriate care from the outset, not as a last resort. It is imperative that the Care Quality Commission takes immediate action to investigate these instances of non-compliance to the NICE guidelines and hold accountable any institutions or healthcare professionals found to be neglecting their duty of care to M.E. patients. I should stress that I, and other members of the community, have yet to encounter a NHS hospital that understands M.E and offers appropriate and timely care.

In conclusion, I urge the Care Quality Commission to prioritize this matter and take decisive steps to ensure that NHS hospitals in England adhere to the M.E. NICE guideline without exception. The well-being and lives of M.E. patients hang in the balance, and it is our collective responsibility to ensure that they receive the care and support they deserve.

Yours sincerely,

Onwards and Upwards!

I want to include the community in this next piece of the puzzle but am fully aware of the urgency of the need for adherence to the NICE guideline so felt I needed to contact the CQC asap. However, I’m still thinking of ways to include the community with this CQC step. I’ll keep thinking and get back to you!

People living with M.E. need change NOW.



and Foggy (OBVIOUSLY)



ps. The Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.) open letter’ is still live and in need of signatures (2456 on 3/4/24). Please sign and share, thank you.

Link – https://organise.network/actions/petition-urgent-call-for-the-creation-of-x_s-gvzs