The ME Association has launched a major project to respond to the government’s proposed welfare reforms — and we urgently need your help.
By Ella Smith, Welfare Rights Consultant & Paul Jones, Policy and Public Affairs Consultant
The ME Association has launched a major campaign to respond to the government’s proposed welfare reforms — and we urgently need your help.
The government is planning significant changes to Personal Independence Payment (PIP) and the wider disability benefits system. These changes are likely to hit people with ME/CFS and Long Covid especially hard. Many risk losing their benefits due to new rules that do not reflect the reality of living what can be a fluctuating* (whereby symptoms are always present ranging in severity), and misunderstood disability.
We believe these reforms are unfair, unworkable, and deeply damaging to our community. That’s why we’re taking action.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
What the MEA is doing
We are working on several fronts to make sure the voices of people with ME/CFS and Long Covid are heard. We are:
- Submitting evidence to the Work and Pensions Select Committee
- Responding in full to the Pathways to Work Green Paper consultation
- Meeting with MPs, policymakers, and key influencers
- Building a coalition with other charities, academics, and campaigners
- Engaging the media to raise public awareness
- To strengthen our voice, we need concrete, real-world data — and that’s where you come in.
Why your story matters
We’ve created a comprehensive survey to gather both personal experiences and detailed data about the benefits system with a particular focus on Personal Independence Payment (PIP) – the benefit that will be hit the hardest. We want to know:
- What benefits you receive — or have been denied
- How many PIP points you were awarded for each activity
- Whether you had to appeal, and if so, what happened
- How PIP affects your ability to work
- Whether you’ve been put off applying for PIP and your reasons
- If you had access to help with the process, and how easy or difficult that was
This information is vital. It will directly inform our submissions to government and help us challenge flawed policies that fail to recognise the lived experience of people with ME/CFS and Long Covid.
Why the focus on PIP?
We know that many people with ME/CFS and Long Covid also rely on other benefits like Employment and Support Allowance (ESA) or Universal Credit. However, our immediate focus is on Personal Independence Payment (PIP) because the government’s proposed reforms are centred on tightening PIP eligibility and using it as the new gateway to other support — particularly after the Work Capability Assessment is scrapped.
These changes could cause thousands to lose both PIP and the health element of Universal Credit. That’s why we’re gathering detailed evidence now — to defend access to PIP and stop a domino effect that would put lives, health and livelihoods at even greater risk.
Why we’re running a separate survey
You may have seen the Long Covid Support et al (2025) campaign and its excellent survey gathering personal stories about life with ME/CFS. We fully support their campaign and its aims. Our survey complements this work by focusing on a specific need: collecting detailed, technical data about benefits — especially Personal Independence Payment (PIP).
This includes information such as how many points people were awarded in each activity, whether they had to appeal, and how receiving (or losing) PIP affects their ability to work. These insights are essential for our submissions to government and parliamentary committees and will allow us to argue more forcefully and credibly on your behalf.
Take the survey — make your voice count
We need your help to amplify and build on this campaign. If you're sharing your experience or encouraging others to complete the survey, please use the hashtag #ListenToME on social media. It helps raise awareness, build momentum, and show the government just how many of us are affected. And don’t forget to include the survey link:
Please don’t wait — the deadline for submitting evidence is fast approaching, and we need your input as soon as possible.
Together, we can push back. This is one of the most important policy moments in recent years to affect our community. With your support, we can push back against harmful changes, demand a fairer system, and work to ensure that no one is left behind.
Survey Information & Accessibility
- The survey has 47 questions with a range of multi-choice (required), free text spaces (which can be skipped) and form questions to submit information on Mobility and Daily Living Components
- The survey is in dark mode (where this is possible) to account for people who may have light sensitivity or have problems with the light from screens
- Survey Planet allows the survey to be paused after most questions, if using the same device. Please note: Questions asking for text need to be fully completed and submitted before pausing the survey.
- We have provided a PDF that allows you to preview the questions in advance. This can help you prepare for text options, should you wish to complete any free text questions.