Open Letter to the General Medical Council – Urgent Appeal to Address Non-Adherence to Myalgic Encephalomyelitis NICE Guidelines in NHS Hospitals

This ‘open letter’ was emailed to the GMC at 3pm today.
The ‘Open letter to the General Medical Council signed by 282 people as at 12pm today (Organise are closing this letter as it ‘doesn’t meet their community standards’ #NoComment – NHS staff use this platform).

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

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 (now four – 27/2/2024) 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)
Ps. Here are live petitions from patients families desperate to have this neglectful ‘care’ flagged and improved. I did not include specifics on the public open letter but this is information the families have shared publicly.
Royal Lancaster Infirmary –  Millie has been inappropriately and dangerously sectioned.
East Sussex Healthcare Trust (both hospitals but Conquest now)

What now?

Now we wait for a response.

As I have said a number of times over recent days, if this ‘only’ starts a conversation between the GMC and NHS England it will be a step in the right direction – obviously I am hoping for more than this as an outcome though.

Please sign and share the petitions I added to the bottom of the GMC email, these very severe patients are in hospital NOW and need help.

I know it is not standard practice to send the GMC ‘open letters’ but there isn’t a nationwide organisation that does this type of thing as standard practice. We need investigations AND consequences for medical staff.

I’ll keep you updated with developments.


Love Sally




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