Our blog from 2022.

FAO: Exercise Professionals – When Overload Principle Can Be Harmful….

The post Hidden Caveats, Real Harm: M.E./C.F.S. and the Flaws in UK Activity Guidance first appeared on Stripy Lightbulb CIC.

Sally Callow will be attending as the representative of Stripy Lightbulb CIC, with one clear aim:

👉 To make sure the lived experience of people with M.E./C.F.S. is heard, understood, and taken seriously.

But she can’t do that properly without you.

Urgent care services are often not designed with M.E./C.F.S. in mind.

Many of us have experienced:

• Being too unwell to navigate complex phone systems
• Struggling with NHS 111 scripts that don’t reflect our condition
• Deterioration after appointments due to post-exertional malaise (PEM)
• Difficulty accessing GPs or being believed when we do
• Pharmacy or urgent care interactions that don’t account for energy limitations

These aren’t small issues, they’re barriers to care.

This focus group is a real opportunity to influence how services are designed in future. If we don’t speak up, those designing services may never understand what needs to change.

We don’t just want to share Sally’s own experience as a person living with M.E./C.F.S. in Hampshire, we want to bring a collective voice.

That means:

• Real stories
• Honest experiences
• What worked (and what didn’t)
• What you wish professionals understood

Even small details can make a big difference.

How you can help

If you live with M.E./C.F.S. (or support someone who does), we’d really value hearing from you:

💬 Your experiences with:

• NHS 111
• GP access
• Pharmacies
• Urgent care / A&E

💡 What would make these services more accessible for you
⚠️ Any situations where care made you worse
✅ Any examples of good practice

You can share as much or as little as you like, a few sentences is absolutely fine.

Why your story matters

For a condition that still lacks:

• Clear biomarkers
• Consistent clinical understanding
• Appropriate service design

…lived experience is critical evidence.

This is how we:

• Challenge assumptions
• Highlight gaps
• Push for services that don’t cause harm

If you’ve ever thought:

“They just don’t understand what this is like”

– this is a chance to help change that.

Please comment on this blog/post, email us via info@stripylightbulb.com, via our ‘contact us’ page –  or share your experiences in whatever way feels easiest for you.

Deadline – 27th May 2026.

Together, we can make sure that M.E./C.F.S. is not invisible in decisions about urgent care.

Thank you for helping us ensure M.E./C.F.S. is fully represented.

The post Hampshire/IoW – Help Us Represent M.E./C.F.S. Within Urgent Care first appeared on Stripy Lightbulb CIC.

We are increasingly seeing M.E./C.F.S. reframed within Access to Work as a form of “acquired neurodivergence”. This is not a neutral shift in language, it fundamentally alters how the illness is understood, what kinds of support are considered appropriate, and, ultimately, whether barriers to work are genuinely addressed or quietly sidelined.

For those of us who have spent years pushing back against the psychologisation of M.E./C.F.S., this feels uncomfortably familiar.

The term “acquired neurodivergence” is not one that has emerged from biomedical M.E./C.F.S. research or from the lived‑experience M.E./C.F.S. community. As The Canary documented, it largely traces back to psychology‑led and employment coaching frameworks that began expanding their remit during the early years of long Covid, when demand for workplace support rose sharply. In some cases, this framing can be linked to earlier documents such as a 2017 British Psychological Society report which grouped M.E./C.F.S. alongside neurological conditions under a broad “acquired neurodiversity” umbrella, with an emphasis on coaching and adaptation rather than disease pathology.

What is striking is not just where this language comes from, but where it does not. It does not arise from clinical diagnostic criteria, international disease classifications, or the extensive biomedical literature on M.E./C.F.S. Instead, it appears to offer a convenient conceptual bridge: one that allows M.E./C.F.S. to be routed into existing neurodivergence‑focused support pathways without having to grapple with the specific, and far more challenging, realities of the disease itself.

That matters, because neurodivergence and M.E./C.F.S. are not interchangeable concepts.

The neurodiversity movement was developed to challenge deficit‑based models of developmental neurological difference. It has been most clearly associated with autism, ADHD, dyslexia and dyspraxia –  lifelong patterns of cognitive difference, where people are disabled primarily by a mismatch between their neurotype and their environment. Support, in that context, quite rightly focuses on environmental adjustment, communication styles, sensory considerations and social barriers.

M.E./C.F.S. is different.

There is no scientific evidence base that defines M.E./C.F.S. as a neurodivergent condition. On the contrary, M.E./C.F.S.. is recognised internationally as a neurological disease with systemic involvement, characterised by profound metabolic, immune and autonomic dysfunction. At the centre of the illness is post‑exertional malaise (PEM): a pathological worsening of symptoms following physical, cognitive or emotional exertion.

For many people with M.E./C.F.S., the primary barrier to employment is not poor organisation, time management, communication style or mindset. It is a lack of usable energy.

This is not an abstract claim. Over the past decade, biomedical research has increasingly pointed to impaired cellular energy production in M.E./C.F.S., including evidence of mitochondrial dysfunction and disrupted metabolic pathways. Exercise and exertion provoke abnormal immune and inflammatory responses, rather than the adaptive responses seen in healthy individuals or those who are merely deconditioned. Two‑day cardiopulmonary exercise testing has repeatedly demonstrated objective, reproducible deterioration unique to M.E./C.F.S., a finding that cannot be explained by psychological factors alone.  Brain imaging studies also show that the cognitive problems people with M.E./C.F.S. experience, often described as “brain fog”, are more likely due to the brain struggling to meet its energy needs, rather than to any underlying neurodevelopmental difference.

None of this fits comfortably within a neurodivergence framework.

Of course, some people with M.E./C.F.S. are also neurodivergent. That is not controversial. People can, and do, live with multiple conditions. But co‑occurrence does not justify redefining M.E./C.F.S. itself. Support designed to address executive functioning or sensory processing differences cannot, by definition, resolve a disease where exertion triggers physiological collapse.

This distinction matters enormously in the workplace. From our work at Stripy Lightbulb CIC, training employers, HR teams, occupational health professionals and educators, we repeatedly see how misclassification leads to inappropriate expectations. Coaching someone with M.E. will not create energy where none exists. NLP will not prevent PEM. Seeing extreme fatigue as something that can be “thought through” or coached away doesn’t stop the physical inflammatory reactions happening in M.E./C.F.S.

What is especially concerning is how neatly this “acquired neurodivergence” framing slots into a broader social‑model‑only approach. While the social model of disability has been invaluable in challenging discrimination, it has always struggled to represent M.E./C.F.S. accurately. For people with M.E./C.F.S., barriers are not solely external or attitudinal; they are biological. No amount of willpower, adjustment or mindset work can override pathological energy limitation.

Seen in this light, the current direction of Access to Work feels less like progress and more like a quiet regression. Psychologisation has simply been repackaged in kinder language, allowing systems to appear supportive while still avoiding the uncomfortable implications of a genuinely biomedical disease.

What is happening within Access to Work is not just a matter of language. How M.E./C.F.S. is defined determines what support is offered, what assumptions are made about capability, and whether people living with the condition are believed when they describe their limits. Reframing M.E./C.F.S. as “acquired neurodivergence” risks locking a serious biomedical disease into models of support that cannot address its core reality: a pathological lack of energy, driven by physical dysfunction, not mindset or motivation.

The post When Language Distracts From Biology: Why M.E./C.F.S. is Not “Acquired Neurodivergence” first appeared on Stripy Lightbulb CIC.

People across Hampshire are being invited to share their real experiences of local health and social care, and your voice could help shape how services improve in the years ahead. Stripy Lightbulb CIC is working with Healthwatch Hampshire and Action Hampshire to help reach more residents and ensure a wide range of voices are heard.

This project is open only to people who live in Hampshire and use Hampshire‑based health or social care services. Residents of Portsmouth and Southampton are not eligible, as those cities have their own Healthwatch services.

Health and social care services can only improve when the people who use them share what’s working, and what isn’t. Healthwatch Hampshire is the independent patient voice for the county, and they use real experiences from local people to influence NHS leaders, local authorities, and service providers. Their toolkit highlights that feedback helps uncover emerging issues, champion equality, and make recommendations that providers need to respond to.

Your insight helps them:

• Understand what’s going well
• Identify where people are struggling
• Spot patterns across communities
• Highlight barriers and inequalities
• Ensure underserved groups are not overlooked

Sharing your story helps build the bigger picture of what life is really like for people navigating the system.

Stripy Lightbulb CIC focuses on, and works for the benefit of, the M.E./C.F.S. community, and encourage members of this community to participate to ensure M.E./C.F.S. voices are included and heard. However, this project is open to ALL Hampshire residents regardless of diagnosis or circumstances.

You can take part if:

• You live in Hampshire (not Portsmouth or Southampton)
• You have used any Hampshire‑based health or social care service
• You are willing to share your experiences,  positive or negative
• Carers and family members are also welcome to contribute

This aligns with the project’s requirement to gather experiences from “Hampshire residents” using local services.

Participation is designed to be simple and accessible.

You can:

• Join an online workshop (with rest breaks included), or
• Complete a short online feedback form

If enough people prefer a virtual workshop, we will arrange one. If you choose the form instead, just let us know when you’ve submitted it so we can confirm your participation with Healthwatch.

Healthwatch Hampshire emphasises that the project is about listening to lived experience. You can talk about any service you’ve used: GPs, hospitals, dentistry, mental health, social care, paramedics, children’s services, and more. Their toolkit encourages people to share experiences such as:
“Which health and social care services do you need to access the most?” and
“Have you had any problems getting the services you need?”

You don’t need to prepare anything or need special wording. You just need to share what happened.

We are committed to ensuring that all communities across Hampshire are included in conversations about health and social care. By supporting this project, we’re helping ensure that:

• Residents’ voices are heard
• Real experiences are represented in county‑wide data
• Barriers and inequalities are recognised
• People are not left out of mainstream health and social care planning

But we can only do this with your help.

If you live in Hampshire (not Portsmouth or Southampton) and have used any local health or social care service, we want to hear from you.

Your experience matters.
Your voice can influence change.
Together, we can help ensure Hampshire’s services work better for everyone.

Get in touch to take part.

Email: info@stripylightbulb.com

The post Help to Shape the Future of Health and Social Care in Hampshire: Your Lived Experience Matters first appeared on Stripy Lightbulb CIC.

Recently, as we began analysing Ministry of Justice (MoJ) datasets for a current research project, one issue quickly stood out: the way M.E./C.F.S. is categorised within these systems simply didn’t align with what we know about the condition. Instead of appearing alongside other neurological illnesses, it was repeatedly placed in groups associated with mental health conditions or learning difficulties. This unexpected pattern prompted us to look more closely at how the MoJ’s linked datasets classify health conditions and why such a significant discrepancy exists. What we found highlights a long‑standing structural problem in the way older administrative systems record disability, and why it is so important that this is finally addressed.

See update at the bottom of this blog – 16/03/2026.

When we examined Ministry of Justice data, we were struck by how often M.E./C.F.S. appeared to be grouped alongside mental health conditions or learning difficulties such as dyslexia. This immediately raised a fundamental question: why is a neurological disease being presented as if it were a psychological or cognitive‑learning issue? The Ministry of Justice’s (MoJ) Data First webpage offers no explanation, because the problem doesn’t originate there. Instead, it comes from the older administrative systems that feed into the linked datasets Data First brings together. These systems rely on broad, simplistic categories that group people by perceived “vulnerability” rather than clinical accuracy. As a result, M.E./C.F.S. was historically placed in mental‑health or learning‑difficulty categories, and those outdated labels have simply been carried forward into modern datasets.

The justice system also tends to classify conditions by their functional impact rather than their medical cause. Because M.E./C.F.S. can affect memory, concentration, stamina, and cognitive processing, it can superficially resemble the functional challenges seen in mental health or learning difficulty cases. This leads to misclassification even though the underlying pathology is entirely different. Compounding this, many justice datasets lack a clear neurological category altogether, leaving M.E./C.F.S. with nowhere accurate to be placed. The Ministry of Justice does not maintain its own medical taxonomy; it inherits whatever categories exist in the operational systems it links. But this does not mean the current situation is unchangeable. Updating these categories is absolutely within the Ministry’s scope, and doing so would correct a long‑standing inaccuracy that has real world consequences.

This misrepresentation matters because it reinforces outdated misconceptions about M.E./C.F.S. and undermines public understanding of the condition. It also misleads employers who may use on Employment Tribunal data to inform internal risk assessments and equality policies. When M.E./C.F.S. appears under mental health or learning difficulty categories, businesses may draw incorrect conclusions about the nature of the illness, the types of workplace adjustments required, and their legal responsibilities. Researchers and policymakers who use MoJ datasets are similarly affected, as inaccurate categorisation distorts the evidence base they depend on. Even within the justice system itself, misclassification can influence how individuals with M.E./C.F.S. are understood and supported in courts, probation, and prisons.

Correcting this longstanding issue would bring immediate benefits. Aligning MoJ datasets with World Health Organisation classifications would ensure that M.E./C.F.S. is recognised as the neurological disease it is, placing it alongside conditions such as Parkinson’s and Multiple Sclerosis. Unfortunately, we can’t suggest aligning with NHS classification as there are known issues with their classification system too,  and this would bring about a whole new range of problems. Correcting this MoJ issue would improve the accuracy of research, support fairer treatment in legal settings, and help employers make informed decisions grounded in medical reality rather than outdated assumptions. For a community that has long faced misunderstanding and stigma, accurate representation in government data is not a minor administrative detail, it is a meaningful step toward fairness, visibility, and justice.

Today, an email addressing this issue has been sent to the MoJ.

16/03/2026 – Update.

A response has been received from Data First (Dept within the MOJ) – copied and pasted below.

Dear Sally,

Thank you for your email and for getting in touch to raise this.

We aren’t really the team to handle this directly –  as you correctly say in your email, Data First works with existing administrative data and makes deidentified version of these datasets available to researchers – but I wanted to reassure you that this has been passed on to various colleagues elsewhere in the department, and that discussions are taking place.

Please do let me know if we can be of any further assistance, and thank you again for contacting us.

Kind regards,

The post Miscategorisation of M.E./C.F.S. in Ministry of Justice Datasets first appeared on Stripy Lightbulb CIC.

Human Resources (HR) and Occupational Health (OH) teams play a decisive role in ensuring that employees with M.E./C.F.S. are supported safely and effectively in their workplaces. When the condition is understood correctly, organisations benefit from improved retention, reduced sickness absence, and a more inclusive working culture. But this depends entirely on having training and guidance that is accurate, person-centred, evidence‑based, and fully aligned with the NICE guideline for M.E./C.F.S (NG206).

Recent reporting by The Canary demonstrates why this accuracy is non‑negotiable. Their investigation into Maximus, a major provider of workplace health advice, shows that the company is offering guidance to employers that directly contradicts the NICE guideline. According to the article, Maximus encourages employers to believe that employees with M.E./C.F.S should increase their activity levels or participate in workplace exercise classes to “boost energy.” This is precisely the type of intervention NICE removed from clinical practice because of the well‑documented harms associated with graded exercise therapy.

For HR and OH teams, this is a critical point, the NICE guideline explicitly states that graded exercise therapy must not be offered. The reason is the hallmark symptom of M.E./C.F.S: post‑exertional malaise (PEM). PEM is a worsening of symptoms after even minor physical, cognitive, or emotional exertion. Any training that fails to explain PEM, as The Canary reports Maximus’ materials do, risks leading HR and OH professionals to make decisions that inadvertently cause harm. The article also notes that Maximus continues to present CBT as a treatment strategy, despite NICE’s shift away from framing CBT as a cure. And by grouping ME/CFS together with unrelated conditions such as fibromyalgia and multiple sclerosis, the training obscures the specific adjustments that employees with ME/CFS actually require. Particularly concerning is that Maximus updated this guidance in 2025 and 2026, long after the NICE guideline changed.

For HR and OH teams, accurate understanding is essential for safe case management. ME/CFS is a complex neuroimmune disease, not a form of chronic tiredness or deconditioning. Employees with M.E./C.F.S are often highly capable, but they need the right working conditions to avoid exacerbation of symptoms. Understanding PEM is fundamental: even small increases in exertion can trigger a significant decline. This is why pacing, not graded increases in activity, is the safe, evidence‑based approach.  In practical terms, HR and OH teams can make a substantial difference by ensuring that employees have access to appropriate reasonable adjustments. These may include flexible or reduced hours, remote working, reduced sensory load, predictable workloads, and autonomy over pacing. These adjustments allow employees to manage their energy effectively and remain productive without compromising their health.

It’s worth highlighting that the positive, evidence‑based approaches described in this article are exactly what is included in our employer training course at stripylightbulb.com. Our training explains PEM clearly, provides practical guidance on appropriate reasonable adjustments, and embeds the NICE guideline throughout the learning content. HR and OH teams can be confident that the information we provide is accurate, safe, and fully compliant with current clinical standards.

The organisational benefits are clear. Employees who feel understood and supported are more engaged and more loyal. Retention improves because staff are not being pushed into ill‑health retirement or long‑term absence, and by basing decisions on accurate, NICE‑compliant information, HR and OH teams reduce legal risk and strengthen their organisations’ reputation as a responsible and inclusive employer.

HR and Occupational Health professionals want to act responsibly, and they deserve training that equips them to do so. The NICE guideline provides a clear, evidence‑based foundation. Any training that contradicts it, as Maximus’ materials appear to do, puts both employees and organisations at risk.

With the right knowledge, HR and OH teams can create working environments where people with M.E./C.F.S  can thrive. That is good for staff, good for organisational performance, and essential for genuine inclusion.

The post M.E./C.F.S. in the Workplace: Essential Guidance for HR and Occupational Health Teams. first appeared on Stripy Lightbulb CIC.

As we step into 2026, we’ve intentionally chosen a slower, more reflective start. After nearly eight years of continuous work, it felt important to pause and take stock of where we are, what we’ve achieved, and where our efforts have fallen short. One thing has become unmistakably clear: despite years of evidence, advocacy, and lived experience, the NHS remains reluctant to learn, and successive governments continue to resist the changes our community urgently needs.

Since 2018, we have poured immeasurable time, energy, and determination into pushing for progress. That work has never stopped, but the ongoing resistance has prompted us to rethink how we move forward. This year marks the beginning of a new phase for Stripy Lightbulb CIC, one shaped by realism, renewal, and a return to our core purpose.

Our long‑standing advocacy work remains important to us. Campaigns such as #SCCForME, #MPDoYourJob4ME, the M.E. Friendly Hospital Charter, and our efforts to reform the benefits system will continue, though more quietly and steadily than before. These initiatives have always been long‑term commitments, and all information about them remains available on our website.

This shift in focus coincides with changes within our Board. Two Directors have recently stepped down, and we have welcomed a new member into the organisation. As we shared publicly:

“We want to extend our sincere thanks to our former Directors for their dedication, guidance, and the role they played in shaping Stripy Lightbulb CIC into the organisation it is today. We wish them every success in their future endeavours. Their contributions have left a lasting impact, and we’re grateful for the time, energy, and expertise they shared with us.”

Change is never easy, but it brings opportunity. We are genuinely excited about the fresh perspective and valuable experience our new Director brings. Their arrival strengthens our ability to refocus and move forward with clarity.

As 2026 unfolds, we are intentionally narrowing our focus. We will not be taking on any new advocacy projects beyond those already in progress. Instead, we are returning to the foundations on which Stripy Lightbulb CIC was built:

• Tackling stigma
• Raising research funding
• Educating professionals

These are the areas where we can make the most meaningful impact, and where our work continues to be urgently needed.

This new chapter is both reflective and hopeful. We remain committed to our mission, our community, and the change we know is possible, even when progress feels slow.

Thank you, as always, for your continued support. It means more than we can express, and it sustains us as we move into this renewed phase of our journey.

The post Looking Ahead: A Renewed Business Focus for 2026 first appeared on Stripy Lightbulb CIC.

On 9th December 2025, we are holding our one-day campaign #SCCforME to demand fairness and clarity for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S.).

The Severe Conditions Criteria (S.C.C.) is meant to protect those who are not expected to ever be able to work due to a severe lifelong health condition or disability that is not expected to improve. The key criterion is permanence: the condition must last for the rest of a person’s life, with no realistic possibility of recovery through medical management. Despite this, M.E./C.F.S. is not automatically recognised under the S.C.C., leaving thousands of people trapped in a cycle of repeated reassessments that are harmful, exhausting, and unnecessary.

When we asked the Department for Work and Pensions (DWP) whether M.E./C.F.S. qualifies under the S.C.C., the responses came from a clinical lead who made clear they are not a decision-maker. That’s why our campaign is directed at the policy decision-makers themselves.

Here are some of the answers we received:

“Whether ME/CFS meets this criteria will depend on the person, their symptoms and their trajectory of disease and will be determined during the application and assessment process.”

This is unnecessary box ticking. NICE guidance acknowledges that recovery from ME/CFS is rare. Fluctuations in symptoms do not equal recovery.

“Any fluctuation in a person’s health condition or disability can be accepted for SCC if their overall functional impairment is considered to always be at the level of LCWRA or greater. If the person is unable to complete a task reliably, safely, repeatedly and within a reasonable time, then they are considered to be unable to complete that task at all.”

This is an important acknowledgement: fluctuating conditions can still meet the S.C.C. if the overall impairment is severe enough. For many with M.E./C.F.S., this is exactly the reality.

“The answer to this depends on the individual, previous award and functional ability.”

This introduces unnecessary uncertainty, the S.C.C. should be applied consistently to conditions like M.E./C.F.S. where permanence and severity are well-documented.

Despite overwhelming scientific evidence that recovery is rare, the DWP continues to spend taxpayer money reassessing people with M.E./C.F.S. to test their functionality. This is excessively bureaucratic, inefficient, wasteful and harmful. If someone has already been assessed and shown to be eligible for LCWRA (Limited Capability for Work and Work-Related Activity), they should not face further reassessments a few years later to prove they are still disabled. Their condition is permanent.

The focus must shift from functionality, which fluctuates, to permanency, which is the true measure of whether someone should qualify under S.C.C.

From 6 April 2026, people who currently have LCWRA but are wrongly judged to not meet S.C.C. will receive the higher rate of LCWRA, with their combined Universal Credit standard allowance and LCWRA increasing at least in line with inflation every year for the next four years. However, while this offers some financial protection, it does not solve the deeper issue: those with M.E./C.F.S. who clearly meet the S.C.C. should not face repeated reassessments.

“An individual currently awarded LCWRA but not SCC will not automatically be eligible for SCC unless they are reassessed, regardless of diagnosis. At their next reassessment the criteria can be considered and if applied will mean they will no longer require reassessment.”

This leaves people with M.E./C.F.S. in limbo, forced to undergo stressful reassessments despite the permanence of their condition.

Why #SCCForME Matters

• M.E./C.F.S. is a lifelong condition: NICE guidance makes clear that recovery is rare.
• Fluctuations do not equal improvement: Daily variability in symptoms does not mean the condition is resolving.
• Taxpayer money is being wasted: Reassessing people with permanent conditions is unnecessary and costly.
• SCC should apply consistently: If someone cannot complete tasks reliably, safely, repeatedly, and within a reasonable time, they meet the threshold.
• Reassessments are harmful: For people with M.E./C.F.S., reassessments are not only unnecessary but can worsen symptoms and cause significant distress.

📢 Call to Action: 9th December

On 9th December, we need a united show of strength to demand that M.E./C.F.S. is recognised under the S.C.C. The power of this campaign lies in everyone acting together on one day.

Here’s how you can take part:

• ✉️ Send the email – Copy, paste, and send the template email to the DWP or your MP.
• 💬 Post on social media – Use the hashtag #SCCforME and tag @DWPgovuk @stephenctimms @patmcfaddenmp.
• 🖼️ Share graphics – Add the campaign visuals to your posts to amplify visibility.
• 📅 Do it all on 9th December 2025 – or schedule ahead if needed, but make sure it lands on the chosen day.

All information and resources can be found and downloaded from this ‘#SCCForME Starter Pack’

A concentrated burst of emails and posts on one day creates impact and urgency. When MPs, the DWP, and the media see a surge of messages all at once, it signals strong public demand and makes it harder to ignore.

Together, a few hundred voices raised on the same day can make a big impact.

This campaign is about fairness, dignity, and protection for those living with M.E./C.F.S. The S.C.C. exists to safeguard people with lifelong conditions, it’s time for M.E./C.F.S. to be recognised as one of them.

Thank you for supporting this campaign.

The post #SCCForME – Our One-Day Campaign to End Harmful LCWRA Reassessments for M.E./C.F.S. first appeared on Stripy Lightbulb CIC.

Yesterday, Chancellor Rachel Reeves delivered her Autumn Budget, a speech in which she referred to “working people” at least seven times. Phrases such as “I will always put working people first” and “money off bills, and in the pockets of working people” framed the budget as one designed to deliver for those in employment. Reeves also highlighted reforms to Universal Credit, claiming these would help 15,000 people return to the workforce, alongside funding for free apprenticeships for SMEs.

Stripy Lightbulb CIC must challenge the Government’s narrow use of the phrase “working people.” Many individuals in receipt of Personal Independence Payments are in employment, yet their contribution is overlooked when this terminology is used as if it excludes disabled and chronically sick communities. Equally, describing disabled people and specifically those living with M.E./C.F.S as “economically inactive” is misleading. No one is inactive: every person contributes to the economy through spending, consumption, and participation in society, whether or not they are currently in paid work. To dismiss people with disabilities or chronic conditions as inactive is not only inaccurate but also disrespectful to the reality of their lives and contributions.

If the Government is serious about getting people back to work, it must look beyond short-term reforms to Universal Credit. Adequately funding biomedical research into M.E./C.F.S, leading to treatments or a cure, could enable hundreds of thousands of people to regain sufficient health to return to employment. That scale of recovery would dwarf the 15,000 figure cited by the Chancellor and would represent a genuine long-term strategy for reducing economic exclusion.

Furthermore, Stripy Lightbulb CIC has repeatedly highlighted inefficiencies and waste within the Department for Work and Pensions (DWP). The DWP deliberately makes applying for benefits unnecessarily laborious, with incompatible computer systems and siloed departments that fail to communicate effectively. These inefficiencies increase workloads, frustrate claimants, and reduce access to support. If the Government wishes to cut costs, its starting point should be cleaning up its own house by streamlining processes, modernising systems, and ensuring departments work together.

Our Call to Government

• Recognise that people with disabilities and chronic illnesses are not “economically inactive.”
• Invest in M.E./C.F.S. research to deliver treatments and cures that would enable hundreds of thousands to re-enter the workforce.
• Reform the DWP to eliminate inefficiency, waste, and unnecessary barriers to accessing support.
• Develop a long-term strategy for people living with M.E./C.F.S. that goes beyond rhetoric and delivers genuine opportunity.

Stripy Lightbulb CIC stands ready to work with policymakers to ensure that the voices of people with M.E./C.F.S are heard, respected, and acted upon. The Autumn Budget may have been framed around “working people,” but true progress will only come when Government recognises that everyone contributes to the economy, and that investment in health and efficiency is the surest way to build a fairer, more productive society.

The post Stripy Lightbulb CIC – Official Statement on the Autumn Budget 2025 first appeared on Stripy Lightbulb CIC.

For people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S), the UK benefits system presents a unique and often unfair challenge. While the condition is widely recognised as long-term and significantly disabling, it is not automatically treated as lifelong under the Severe Conditions Criteria (SCC). This gap in recognition has serious consequences: repeated reassessments, unnecessary stress, and a lack of stability for individuals whose conditions are unlikely to improve significantly.

At Stripy Lightbulb CIC, we believe this is a pressing issue of fairness, compassion, and efficiency. Our campaign calls for M.E./C.F.S to be recognised under the SCC, ensuring that people are spared the cycle of unnecessary reassessments and treated with dignity.

What is the Severe Conditions Criteria?

The SCC was introduced in 2017 to protect people with the most severe, lifelong conditions from repeated Work Capability Assessments (WCAs). The principle is simple: if someone’s condition is permanent, with no realistic prospect of recovery, then reassessment is unnecessary.

From April 2026, claimants with LCWRA (Limited Capability for Work and Work-Related Activity) will receive financial protection even if they do not meet SCC. However, only those recognised under SCC will be exempt from reassessment. This distinction matters greatly for people with M.E./C.F.S.

The Problem for M.E./C.F.S Patients

M.E./C.F.S is a complex, multi-system condition characterised by:

• Post-exertional malaise (PEM), where even minor activity can trigger severe symptom flare-ups
• Cognitive dysfunction (“brain fog”)
• Persistent fatigue that is not relieved by rest
• Sleep disturbances, pain, and mobility issues

Medical evidence and lived experience show that full recovery is rare. Most patients experience long-term, often lifelong, symptoms. Despite this, the DWP does not automatically recognise M.E./C.F.S as lifelong under SCC. Instead, eligibility is determined case by case, based on functional assessments rather than diagnosis.

This approach creates several problems:

• Repeated reassessments: Patients must continually prove their condition, even when recovery is not expected.
• Stress and harm: The reassessment process itself can worsen symptoms, particularly post-exertional malaise.
• Inequity: Conditions like Parkinson’s or Multiple Sclerosis are more readily recognised under SCC, while M.E./C.F.S patients face barriers despite similar permanence.
• Resource waste: Reassessments consume DWP time and money that could be better spent elsewhere.

Fluctuating Conditions and SCC

One of the challenges lies in how SCC treats fluctuating conditions. M.E./C.F.S symptoms can vary in intensity day to day, but the overall functional impairment is permanent.

The SCC framework does allow for fluctuating conditions to qualify, provided the claimant’s functional ability is consistently at LCWRA level or worse. The test is whether tasks can be done reliably, safely, repeatedly, and within a reasonable time. If not, the person is considered unable to do them at all.

This principle should protect M.E./C.F.S patients, but in practice, many are still reassessed unnecessarily because the condition is not explicitly recognised as lifelong.

Why Recognition Matters

Recognition of M.E./C.F.S under the SCC would deliver:

• Fairness: Treating M.E./C.F.S patients on par with those who have other lifelong conditions.
• Compassion: Sparing individuals the stress and harm of repeated reassessments.
• Efficiency: Reducing administrative burden and saving resources.
• Policy alignment: Ensuring benefits policy reflects medical evidence and lived experience.

Our Call to Action

We are urging the Government to:

1. Recognise M.E./C.F.S as a lifelong condition under SCC.
2. Provide clearer guidance for assessors on fluctuating conditions, ensuring permanence and severity are prioritised over variability.
3. Ensure automatic SCC consideration for claimants with LCWRA and a formal diagnosis of M.E./C.F.S.
4. Engage directly with M.E./C.F.S organisations and communities to shape policy that reflects reality.

M.E./C.F.S is a lifelong, severely disabling condition for most people. Yet under current SCC rules, patients are forced through repeated reassessments that are harmful, unnecessary, and wasteful. Recognising M.E./C.F.S under the SCC would deliver fairness, compassion, and efficiency, and most importantly, dignity for those living with this condition.

At Stripy Lightbulb CIC, we will continue to campaign until the benefits system reflects the lived reality of our community.

Stop the cycle of reassessments, recognise M.E./C.F.S as lifelong under the SCC.

The post Recognising M.E./C.F.S as a Lifelong Condition: The Case for Severe Conditions Criteria Reform first appeared on Stripy Lightbulb CIC.