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

[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.


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[End of Press Release]


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