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

Access to Work Is Missing the Point for People With M.E./C.F.S.

Managing Director Sally Callow

A UK community interest company is raising urgent concerns about the kind of workplace support being offered to people living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (M.E./CFS) through the Department for Work and Pensions’ Access to Work scheme.

Stripy Lightbulb CIC says too many people with M.E./CFS are being directed towards coaching services that frame the condition as a form of “acquired neurodivergence” rather than recognising it as the serious, energy-limiting illness it is.

Recent reporting by The Canary, which included contributions from Stripy Lightbulb CIC, highlighted how some Access to Work referrals are leading people towards cognitive, behavioural and workplace coaching programmes. These services often focus on mindset, organisation and workplace confidence.

But for people with M.E./CFS, that misses the point entirely.

M.E./CFS is not simply about fatigue, poor concentration or a lack of confidence. It is a serious multisystem disease, with one of its defining symptoms being post-exertional malaise, where even small amounts of physical or mental effort can trigger a major and prolonged worsening of symptoms.

For many sufferers, the real barrier to employment is not motivation or workplace organisation. It is the brutal unpredictability of energy levels and the physical consequences of overexertion.

As Stripy Lightbulb CIC explained during The Canary investigation, there is currently no requirement for organisations delivering workplace support through Access to Work to have any specific training or understanding of M.E./CFS. That creates a serious risk that people are being offered generic interventions that may be ineffective, or worse, actively harmful.

There is also concern that the burden is being placed on the individual to somehow “improve” their ability to work, rather than expecting employers and systems to make safe, realistic adjustments.

This reflects a problem M.E./CFS patients have faced for years: misunderstanding.

Well-meaning but unsuitable advice can leave people feeling blamed for symptoms they cannot control.

Stripy Lightbulb CIC argues that Access to Work funding would be far better spent training employers, HR departments and Occupational Health teams to properly understand energy-limiting conditions.

Employers need accurate information about fluctuating capacity, post-exertional malaise, pacing and risk management, not generic coaching packages outsourced to providers unfamiliar with the condition.

The organisation also stresses a difficult but necessary truth: many people with M.E./CFS may simply not be physically able to return to work until effective treatments exist. At present, there are no approved disease-modifying treatments available.

Without serious investment in biomedical research, trying to coach people back into employment may do little more than increase distress.

True inclusion means recognising biological reality, not forcing people into frameworks that do not fit. People with M.E./CFS need understanding, proper adjustments and meaningful medical progress, not another lecture on productivity.

http://www.stripylightbulb.com

Public Urged to Join #SCCForME Campaign to End Harmful Reassessments

Today marks the launch of #SCCforME, a one-day national campaign calling for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S.) to be recognised under the Severe Conditions Criteria (S.C.C.).

The S.C.C. is designed to protect people who have lifelong, disabling conditions from having to go through repeated benefit reassessments. 

Yet despite overwhelming scientific and medical evidence that recovery from M.E./C.F.S. is rare, the Department for Work and Pensions (DWP) does not automatically recognise M.E./C.F.S. under S.C.C.

People with M.E./C.F.S. are currently forced into repeated reassessments to prove they remain disabled, even after being awarded Limited Capability for Work and Work-Related Activity (LCWRA). These reassessments are:

Harmful – triggering post-exertional malaise and worsening symptoms.

Exhausting – draining for people already living with profound fatigue and cognitive dysfunction.

Wasteful – taxpayer money is being spent on reassessing people with a condition that scientific and medical evidence shows is lifelong.

This campaign is not about expanding benefits or increasing eligibility. It is about efficiency, fairness, and compassion: stopping unnecessary reassessments for people with M.E./C.F.S. whose condition is permanent.

The #SCCforME campaign calls for:

Automatic recognition of M.E./C.F.S. as a lifelong condition under the S.C.C.

Clearer guidance to assessors that fluctuations do not equal recovery.

An end to repeated reassessments for people with M.E./C.F.S. who have already been awarded LCWRA.

They are asking members of the public to join the M.E./C.F.S. community in taking part in this one-day campaign by:

Sending a pre-written email to the DWP or their MP.

Posting campaign messages on social media using #SCCforME

Sharing campaign graphics to amplify visibility.

A surge of emails and posts on one day creates urgency and impact, making it harder for decision-makers to ignore.

Learn More

Full details, template emails, social media posts, and shareable graphics are available in the latest blog on stripylightbulb.org.

Sally Callow (pictured) Managing Director, Stripy Lightbulb CIC. told That's Health: “This isn't about getting more people onto benefits. It's about stopping the waste of taxpayer money and ending harmful reassessments for people with M.E./C.F.S. 

"Recovery is rare, in the absence of approved treatments or a cure, and reassessments only cause harm. The system must shift its focus from functionality to permanency.” 

Fund M.E./C.F.S. Research, Fix the DWP, and Unlock Hundreds of Thousands Back to Work, says Stripy Lightbulb CIC

Chancellor Rachel Reeves’ Autumn Budget repeatedly referenced “working people,” yet this terminology fails to reflect the reality that many disabled people, including those on PIP, are also in employment. 

Stripy Lightbulb CIC challenges the Government’s continued use of labels such as “economically inactive” for those living with M.E./C.F.S. No one is economically inactive: every individual contributes to the economy through spending, consumption, and participation in society.

Reeves claimed Universal Credit reforms will bring 15,000 people back into work. Stripy Lightbulb CIC argues that adequately funding biomedical research into M.E./C.F.S could enable hundreds of thousands to regain health and return to employment, a far greater impact than the measures announced.

Sally Callow, Managing Director of Stripy Lightbulb CIC told That's Health: “Talented and highly skilled people are being forced to watch from the sidelines after M.E./C.F.S. has taken them out of the workforce.

"Without treatments or a cure, they have no realistic hope of returning to employment, and that is a loss both to them and to the wider economy.”

We also call attention to the inefficiencies and waste within the Department for Work and Pensions. The DWP’s complex, fragmented systems and deliberately burdensome processes deter people from accessing the support they need. If the Government is serious about cutting costs, it should begin by cleaning up its own house.

Our message is clear:

Stop dismissing disabled and chronically sick communities as “inactive.”

Invest in research to unlock long-term workforce participation.

Reform the DWP to deliver efficiency and fairness.

Stripy Lightbulb CIC urges the Government to adopt a genuine long-term strategy for the disabled and chronically sick communities, one that recognises everyone’s contribution to the economy and creates real pathways back to work.

https://www.stripylightbulb.com

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.

ME Specialist Helps Sufferers Get Their lives On Track

Don’t invest time and energy learning to live with ME, learn to live without it instead. That is the heartfelt advice of Michelle Greaves, who suffered from the condition for three years.

Anyone whose life has been touched by ME will be familiar with Michelle’s struggle: the debilitating exhaustion, anxiety and inability to concentrate followed by periods of relatively good health, only for the physically and psychologically-draining cycle to begin again.

Worrying about what the next day would hold was a constant feature of university life for Michelle, and fainting at the wheel of her car was her lowest point.

Michelle was locked in to the boom and bust energy patterns of a condition that can turn active, positive and happy individuals into quiet, weak and vulnerable people who find it difficult to function on a day-to-day basis.

Now the London-based specialist, whose family home is in Congleton, Cheshire has beaten ME - and she has dedicated her life to help others do the same.

Not only that, she is an entertaining, passionate and informed expert, happy to talk about her own experiences to help others and to improve awareness of ME.

For years, Michelle battled with an illness that seemed to have no end. Mainstream guidance was inadequate, she found – something she vowed to change.

Doctors, charities and support websites told her to learn to live with the condition, but she refused to believe this was the way it had to be. Michelle spent more over £15,000 on research, supplements, seeing a range of health practitioners, detoxes and taking courses around the world to help with her recovery. This research, combined with an unfailingly positive attitude and an unstoppable belief that she would beat ME, resulted in Michelle taking her health into her own hands and getting her life back on track.

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From her own experiences, Michelle concluded that pumping herself full of drugs was having little effect, while a natural approach delivered positive, long-lasting results.

Michelle says: “You are told that this condition has no cure and it is something you need to learn to manage, but throughout, I was determined never to give up and one day be free of ME.

Today I have energy everyday and that’s because I embarked on a four-year programme of dedicated research into ME. I discovered the secrets of bringing balance into my life.

“Helping others to transform their lives in this way has become my mission and I am now dedicated to sharing my secrets with them. My theory is that ME isn’t something you should learn to live with, but something you should learn to live without.”

Michelle now runs the ME Recovery Programmes to enable other ME sufferers to get their lives back. This begins with a three-day course in Congleton, Cheshire in November. The course helps attendees understand ME and its root causes, and it gives them the tools to make a full recovery. As part of the Recovery Programme, Michelle also does scientific testing specific to fatigue-related conditions and three months of support following the course via phone and email.

The Congleton course runs from November 25 to 27 at the Alexandra Court Boutique Hotel. There will be a maximum of 10 participants, and it sets out an integrated approach for anyone suffering from ME, looking for Fibromyalgia cure, Chronic Fatigue Syndrome, Fibromyalgia and Adrenal Exhaustion.

Attendees will learn not only how to deal with chronic fatigue, but also how to overcome it completely by a combination of turning negative thoughts into positive ones and making changes to health and lifestyle.

Michelle emphasises there are no magic wands to cure people, but the course teaches people the five steps to health that can be used to overcome ME for good. She is proof that a positive attitude and expert guidance can help you live your life and follow your dreams.

www.adrenal-fatigue-cure.com