Charge of the Light Brigade! Light Protest Calls Out Government Over the Neglect of People With Very Severe Myalgic Encephalomyelitis (ME)

The most severely ill people with ME have sent images to light up London because the Health Secretary has left these patients in the dark.

#MEAction UK projected messages onto locations in central London on 3rd June 2026 to urge James Murray, the Health Secretary to establish specialised NHS services for the most severely affected Myalgic Encephalomyelitis (ME) patients.

The very severely ill are often bed bound, tube fed and live in the dark, isolated from life with a lower Quality of Life score than other major diseases, including heart failure and cancer.

The tragic deaths of Maeve Boothby O’Neill, Sophia Mirza, Merryn Crofts, Kara Jane Spencer, Ella Copley, illustrate how medical care for the very severe is non-existent. The coroner at Maeve Boothby O’Neill’s inquest said, ‘that provision of care for patients with severe ME such as that which Maeve suffered from was and is non-existent’.

"The most severely ill people with ME have sent images to light up London because the Health Secretary has left these patients in the dark. The sickest ME patients are dying without specialised care. We need action now" said #MEAction UK Chair Denise Spreag.

Lizzy who has had ME since she was 14 said, "I have had ME for 17yrs, since I was 14, and despite remaining positive, there is no denying how much I have lost to it. Moments with family, life events that only come around once, my independence, mobility, my hobbies, hopes, voluntary work. A career, relationships, even my ability to digest foods.

"We have faced stigma, lack of specialist medical care, and medics from other specialties having to step in to try to help before it’s too late. I have so much to give, so many skills, interests, so much knowledge, and drive, if only I was well enough to apply it fully. We deserve better."

Another very severe ME sufferer, ‘C’ said, "33 years like this. No medical help, whatsoever, too ill to see family or friends. It could have been so different!"

The decision to set up this service lies with James Murray, the Secretary of State for Health and Social Care. #MEAction UK calls on the Health Secretary to stop stalling and start the service.

As someone who suffered from ME for a decade but who had a spontaneous recovery, my heart goes out to people suffering from Very Severe Myalgic Encephalomyelitis.

https://meaction.org.uk

Cost-Saving Shift to Social Prescribing Lacks Essential Safety Data for M.E.

As the UK government accelerates its national transition toward non-pharmacological treatments (NPTs) and social prescribing in 2026, social enterprise ME Foggy Dog is highlighting a critical lack of oversight regarding patient safety. 

While these community-based interventions are being promoted as a "personalised care" solution, the organisation warns that the shift is primarily driven by cost-saving measures rather than clinical safety data. 

Since 2020, the UK has seen a surge in M.E. (Myalgic Encephalomyelitis), Long Covid, and other post-viral conditions. In response, the 2026 policy direction leans heavily on "low-cost" alternatives to biomedical research and pharmaceutical interventions. 

However, ME Foggy Dog argues that this financial strategy overlooks the biological reality of energy-limiting conditions. "NPTs are being scaled nationally because they are inexpensive, not because they have been proven safe for the M.E. community," Sally Callow, Founder of ME Foggy Dog, told That's Health. 

"Biomedical research and specialist care require significant investment, but diverting patients toward community activities without clinical safeguards is a false economy that risks long-term health deterioration." 

Despite the rapid rollout of social prescribing, there remains no mandatory training for link workers or community providers regarding Post-Exertional Malaise (PEM), the core symptom that makes many physical or mental activities potentially harmful for M.E. patients.

Crucially, while patients have reported health setbacks through PALS and individual NHS clinics, there is still no national system to centrally record harms caused by non-medical interventions. This lack of data was highlighted during the 2021 NICE guideline review and remains unaddressed in 2026.

Through the Shake It Up campaign, ME Foggy Dog is calling for:

National transparency: The urgent creation of a national harm-reporting system to track the impact of NPTs.

Evidence-based policy: An end to ill-informed policymaking, ensuring that any expansion of social prescribing is informed by recorded patient outcomes.

"We are at a critical moment where policy is being built without a safety net," Callow continues. "If the government wants to expand these programmes, it must commit to tracking the consequences. We need influence, policy insight, and amplification to ensure the M.E. community is protected, not sidelined by budget-driven decisions."

Exploring Treatment Options for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Living with Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), can be an arduous journey. ME/CFS is a complex and debilitating condition characterised by extreme fatigue, post-exertional malaise, sleep disturbances, cognitive impairments, and other symptoms. 

While there is no cure for ME/CFS as yet, there are various treatment approaches aimed at managing symptoms, improving quality of life, and promoting overall well-being for patients. In this blog post, we'll explore some of the treatments available for individuals coping with ME/CFS.

Lifestyle Management:

Pace and rest: One of the key strategies for managing ME/CFS is pacing activities to avoid overexertion. Learning to balance activity and rest is crucial to prevent symptom exacerbation.

Sleep hygiene: Establishing good sleep habits can help improve the quality of sleep for ME/CFS patients. This may involve maintaining a regular sleep schedule, creating a relaxing bedtime routine, and optimizing the sleep environment.

Stress management: Stress can worsen symptoms of ME/CFS. Techniques such as mindfulness, meditation, and deep breathing exercises can be helpful in managing stress levels.

Dietary and Nutritional Support:

Balanced diet: Eating a well-balanced diet rich in fruits, vegetables, whole grains, and lean proteins can support overall health and energy levels.

Supplements: Some ME/CFS patients may benefit from certain supplements, such as vitamin D, magnesium, and Coenzyme Q10. However, it's important to consult with a healthcare professional before starting any new supplements.

Medications:

Symptom management: Medications may be prescribed to alleviate specific symptoms associated with ME/CFS, such as pain, sleep disturbances, and depression.

Off-label treatments: Certain medications that are not specifically approved for ME/CFS, such as low-dose naltrexone or antiviral drugs, have shown promise in some patients. However, more research is needed to determine their efficacy and safety for ME/CFS.

Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET):

CBT: This type of therapy focuses on changing negative thought patterns and behaviors that may exacerbate symptoms of ME/CFS. It can help patients cope with the psychological impact of the illness and develop effective coping strategies.

GET: Under the guidance of a trained therapist, GET involves gradually increasing physical activity levels in a structured manner. It aims to improve physical function and tolerance to activity over time.

Alternative Therapies:

Acupuncture: Some ME/CFS patients report benefits from acupuncture in relieving pain and improving overall well-being.

Mind-body practices: Techniques such as yoga, tai chi, and qigong may help reduce stress, improve sleep quality, and enhance physical function in individuals with ME/CFS.

Conclusion:

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome presents numerous challenges, but with a comprehensive treatment approach, patients can better manage their symptoms and improve their quality of life. It's essential for individuals with ME/CFS to work closely with healthcare professionals to tailor a treatment plan that addresses their unique needs and preferences. While there is still much to learn about this complex condition, ongoing research and advances in treatment offer hope for a brighter future for those affected by ME/CFS.

I should point out that I suffered with ME for a number of years after having contracted glandular fever. It's unfortunate that 30 years on there is still no cure.