Proposed PIP Changes: Disastrous Reform for the M.E./CFS Community

M.E./CFS Awareness Week 2025

At the end of M.E./CFS Awareness Week, I felt the need to elevate my voice for those of us living with one of the most misunderstood and life-altering chronic conditions. Sadly, despite the efforts of fantastic support organisations like, The M.E. Association (click here to reach their website), M.E. Research UK (follow this link), and ME Support (visit their site here), we are facing a potential disaster. Thousands of people debilitated by this disease face an uncertain financial future because of the UK government’s proposed PIP changes.

The proposed PIP changes announced by the Labour Party threaten to strip vital support from thousands of disabled individuals across the country. These include people like myself, people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS), who rely on Personal Independence Payment (PIP) not for luxury, but for everyday living costs and, in many cases, care and support.

Understanding the Proposed PIP Changes

Ahead of the Spring Budget, Labour announced an overhaul of the welfare system, including the qualification criteria for PIP benefits. From November 2026, applicants will have to score 4 points in at least one of the Daily Living activities to be eligible for a payment. This fundamentally misunderstands how fluctuating and invisible conditions like M.E./CFS operate. Whilst I understand changes to the benefits system are needed due to spiralling costs within the welfare system, it is extremely frustrating to learn that medical charities, like The M.E. Association, were not even consulted about the proposed PIP changes.

”We are therefore calling on the government to listen to people with fluctuating medical conditions like ME/CFS and urgently reconsider the adverse effects of making these changes to PIP.” Dr Charles Shepherd Trustee and Hon. Medical Advisor to the M.E. Association, in a letter sent to Liz Kendall, Work and Pensions Secretary.

What is M.E./CFS?

Let me clear this up very quickly for you, M.E./CFS is not just tiredness, and it is certainly NOT ‘all in the mind’!

It’s a chronic neurological disease that can be characterised by the following symptoms: (although this list does not cover all symptoms, as these vary with each individual, adding to the difficulty in diagnosing the illness in the first place)

• Profound fatigue not relieved by rest
• Post-exertional malaise (PEM) – a worsening of symptoms after even minor physical or mental activity
• Cognitive dysfunction (“brain fog”)
• Sleep disturbances
• Pain
• Orthostatic intolerance (inability to stand without symptoms)

For a full list of recognised and recorded symptoms, please click here.

There is no cure, and it affects around 250,000 people in the UK alone. The severity ranges from mild to severe, with some individuals housebound or bedbound for years. I am one of the lucky ones. My symptoms fluctuate from mild to moderate, the majority of the time. It may sound odd, calling myself ‘lucky’ when I have a chronic illness, but trust me, when I have a severe ‘crash’ and I can barely make it to the bathroom to use the facilities, I am grateful to know it will only last for a matter of weeks. Those with severe ME face this situation every day of their lives.

The unpredictable nature of M.E./CFS is exactly what makes work so difficult. Some days are manageable, others are impossible.

Why PIP Matters

Personal Independence Payments help people with long-term health conditions cover the extra costs associated with their disability. This can be transport, home modifications, specialist complementary therapies, or simply the ability to rest more and work less.

I speak not just as an advocate, but as a sufferer. I live with M.E./CFS, and I manage my condition well, with complementary therapies, meditation, supplements, and by being self-employed. On good days, I work from home, albeit sitting in bed with my laptop resting on my knees. On bad days, I can’t get out of bed at all.

Again, I want to use that word ‘lucky’. I am lucky because I had the knowledge and skill set that allowed me to set up my business as a website content creator and blog writer. I work around my illness and limit how many clients I take on so I can manage my energy levels. My PIP payments help to make up the shortfall of not being able to work full-time. They cover petrol/car expenses and my complementary therapies that help to ease pain and recharge.

So, what about my fellow M.E./CFS sufferers? What do they do? Full-time work? Impossible. Physical work? Insurmountable!

How are they going to cope with these proposed PIP changes?

My PIP score reflects how significantly M.E. impacts my daily living and mobility. I am on the lower level for each. Yet under the proposed PIP changes, I will no longer qualify for the lower level of Daily Living allowance because my illness doesn’t fit the government’s vision of “permanent” disability.

This is not just unfair. It is dangerous.

Misunderstanding Fluctuating Conditions

The biggest failure of the proposed reforms is the assumption that disability must be visible, consistent, and easily quantifiable. But fluctuating conditions like M.E./CFS, fibromyalgia, long COVID, and many mental health disorders don’t fit that mould. Imagine having to prove your disability on a “bad day,” when just getting out of bed requires more energy than most people expend in a week. The reform proposal risks penalising people who are ‘coping’ with their condition with varying techniques.

Let me put this another way. I used to be a retail manager. This required me to be on my feet a lot of the time, merchandising, dealing with customers, organising and training my team, etc. It was a full-time position with a great salary. Now, if I attempted to go back to a role like this, with M.E., I would crash and be bed-bound within a matter of weeks. I would be unable to hold the job down, and in my attempts to do so, I would undo all the great work I have done over the last 15 years managing my illness. My M.E./CFS condition level would certainly move to severe if not very severe.

With the proposed PIP changes coming in 2026, many sufferers will be forced into similar scenarios just like the one I have described. Why? To try and make up the financial shortfall they will encounter when their PIP payments stop.

The Illusion of Cost-Saving

The government’s justification for the reforms is “unsustainable” welfare spending. I get it, I really do. But are their changes just false economy?

As I have illustrated. Forcing people with M.E./CFS into work they cannot sustain will lead to:

• Increased relapses and crashes (Are employers really going to want people with a poor sickness record?)
• Higher dependency on GPs, A&E, and hospitals (already under strain!)
• Greater long-term care needs
• Mental health crises (I can speak from experience when I say M.E./CFS can lead to depression and for many, it can become unbearable)
• Increased use of carer support services (and just like the NHS, these are already in high demand and short supply).

Personal Impact: My Story

Let me be clear. I want to work. I do work. I love my work.

I run a content creation company from my bedroom. I built it so I could survive. So I could live with this condition with dignity. I can lie on my bed, laptop propped up, and contribute meaningfully to society. (You can read more about my story in a blog I wrote last year for National M.E./CFS awareness day. Here’s the link.)

But that flexibility is rare.

Many others with M.E. don’t have the luxury of a laptop-based job. They might have backgrounds in manual work, retail, education, or healthcare—jobs that require being on your feet, engaging for long hours, or commuting. With M.E., that’s just not possible.

The Proposed PIP Changes threaten to treat us all the same, as though if we can work a little, we can work a lot. That logic is flawed, and it’s cruel.

A Widening Gap in Equality

Of course, I talk about this passionately because I suffer from M.E./CFS. However, this is not just about M.E.

People with:

• Mental health disorders
• Autism
• Parkinson’s disease
• Multiple sclerosis
• Long COVID
• Chronic pain
• PTSD
• And countless other conditions

…are all at risk.

These changes create a system where only those with clear, visible, and constant symptoms are deemed worthy of support.

That is disability discrimination, plain and simple.

What Experts and Advocates Are Saying

Scope

“The proposals will leave thousands of disabled people with no meaningful financial support. The government must halt and rethink.”
(Source: Scope.org.uk – April 2024)

The ME Association

“These changes will disproportionately harm people with M.E./CFS, whose conditions fluctuate and are poorly understood by assessment systems.”
(Source: ME Association campaign brief)

Disability Rights UK

“Disabled people need trust, not constant reassessment. These changes are rooted in suspicion, not support.”
(Source: DRUK, March 2024)

Where Is the Compassion?

As a society, we must ask: What kind of country do we want to be? One that supports its most vulnerable? Or one that punishes them for their pain? The proposed PIP changes threaten to take us backward. They foster feelings of shame, fear, and isolation. We need to unite, to support one another, whatever your background, abled or disabled, to create a society that cares and can see the benefits of support rather than ridicule.

What Needs to Change

1. Recognise fluctuating conditions.
   M.E./CFS must be understood and accounted for in assessments.
2. Protect financial independence.
   Acknowledge that PIP payments are an essential part of supporting people with M.E./CFS to stay independent.
3. Work with disability organisations.
   Policy reform must be done in collaboration with those that actually understand the conditions and how they affect individuals.
4. Stop penalising part-time workers.
   People managing chronic illness and contributing to society should be celebrated, not punished.

How You Can Help

1. Share this blog to raise awareness.
2. Write to your MP, ask them to oppose the PIP reforms.
3. Support ME charities like the ME Association or Action for M.E.
4. Use your voice on social media using hashtags like:
   #ProposedPIPChanges #MEAwareness #DisabilityRights #StopPIPCuts

Final Thoughts

I didn’t choose to be ill. No one with M.E./CFS did. And I wouldn’t wish this condition on anyone. However, I try to manage it. I try to still live life and love it. I contribute to our economy by working part-time. I am a fighter and a survivor, I just wish that the government would recognise this and the fact that the support I get from PIP helps me to achieve all that.

The Proposed PIP Changes are not just policy shifts. They are lifelines being ripped away. And if they go ahead, the damage will be deep, long-lasting, and entirely preventable.

We don’t need pity. We need justice.

Thank you for taking the time to read this, and please, help us to get our voices heard by sharing.