Proposed Welfare Reforms - ME Association’s Position Statement, 
Action for ME’s response to Government’s Spending Review. 
 
 
The ME Association (MEA) launch an urgent survey.
Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms
June 19, 2025
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.

Take survey
 
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:

Link to Survey

Survey PDF Copy
 
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.

 
 
The MEA explain their position
The ME Association’s Position Statement on the Proposed Welfare Reforms
June 18, 2025
By Ella Smith, Welfare Rights Consultant & Paul Jones, Policy and Public Affairs Consultant
 
The ME Association strongly opposes the series of reforms set out in the government’s Pathways to Work Green Paper.  We believe that the government will not achieve its objective to increase the number of disabled people returning to the labour market by implementing these harmful reforms.
We call on the government to extend and expand the Pathways to Work consultation process, to co-produce all reforms with stakeholders, and provide a full impact assessment immediately - before these proposals are put to a vote in the House of Commons.
The government's proposals, including increasing the conditionality threshold for PIP, threaten to erode vital support for people living with ME/CFS and Long Covid by failing to consider the impact of fluctuating* - where symptoms are always present but range in severity and impact on functional capabilities - and varying conditions.
 
If implemented, as currently outlined, these reforms would exclude many people with ME/CFS and Long Covid from the social security system: plunging more disabled people into poverty or further into poverty, worsen health outcomes, and drive more disabled people away from the labour market.
The ME Association will continue to engage with the government’s consultation process through to July 2025: maintaining a strong presence at Westminster; attending meetings with the Minister of State for Social Security and Disability; and continuing to brief parliamentarians who are concerned about the impact of these reforms on people living with ME/CFS and Long Covid.
We are currently drafting a response to the Green Paper consultation. In addition, we are one of a handful of organisations chosen by the Work and Pensions Select Committee to produce a written submission which will be delivered later today. We are committed to working with government and other key stakeholders throughout the consultation process.
We will publish online the Work and Pensions Committee submission next week, and the full response to the Green Paper consultation after 1 July 2025.
 
Please be assured - we will continue to stand against any reforms or measures that threaten the safety, dignity and wellbeing of people living with ME/CFS and Long Covid.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
 
 
 
MEA give Government’s Announcement
GOV UK Announcement: Welfare bill will protect the most vulnerable and help households with income boost
June 19, 2025
 
Additional protections for millions of vulnerable people on benefits are set to be written into law, under new measures being introduced to Parliament yesterday (18 June 2025).
GOV UK
GOV UK Summary

• New welfare legislation to ensure there are robust protections in place to support the most vulnerable and severely disabled.
• Nearly 4 million households to benefit from uprating of Universal Credit standard rate, the largest, permanent real-terms increase to basic out of work support since 1980, according to the Institute for Fiscal Studies (IFS).
• More than 200,000 people with most severe, lifelong conditions to be protected from future reassessment for Universal Credit entitlement.
• 13-week period of financial support for those affected by PIP changes as part of upcoming welfare reforms.
• Comes alongside £1 billion employment support package that will unlock opportunity and grow the economy as part of the Plan for Change.

 
Extracts
The Universal Credit and Personal Independence Payment Bill will provide 13-weeks of additional financial security to existing claimants affected by changes to the PIP daily living component,
The Universal Credit and Personal Independence Payment Bill will provide 13-weeks of additional financial security to existing claimants affected by changes to the PIP daily living component, including those who their lose eligibility to Carers Allowance and the carer’s element of Universal Credit.
The 13-week additional protection will give people who will be affected by the changes time to adapt, access new, tailored employment support, and plan for their future once they are reassessed and their entitlement ends.
This transitional cover is one of the most generous ever and more than three times the length of protection provided for the transition from DLA to PIP.

Link to Announcement
 
MEA Comment
The ME Association is deeply concerned by the government’s continued claims that its proposed welfare reforms will “protect the most vulnerable.”  For people living with ME/CFS and Long Covid - many of whom face complex, fluctuating* symptoms (whereby symptoms are always present ranging in severity) - the proposals risk cutting vital support.
Changes to Personal Independence Payment (PIP), including the new “4-point rule” and the removal of the Work Capability Assessment (WCA), could result in many losing access to both PIP and health-related elements of Universal Credit.  The protections currently built into the WCA - particularly Regulations 29 and 35 - are crucial for people whose health would be seriously harmed by work or work-related activity.  These safeguards are not included in the PIP assessment and have not been replaced.
 
We are also concerned that some of the most serious proposals, such as the new impairment threshold, have not been consulted on. It is unclear how the government believes these changes will support disabled people to work or live independently - especially when support is being removed without appropriate alternatives in place.
In response, the ME Association is launching a national survey to gather direct testimony from people affected by these changes.  This includes people with ME/CFS, Long Covid, and those who care for them.  We believe disabled people must be at the heart of this conversation - and our survey is one way of making sure their voices are heard.
 
We have submitted detailed evidence to the Work and Pensions Select Committee and will also respond in full to the government’s Green Paper consultation. In every part of this work, we are calling for reform that is led by lived experience, grounded in evidence, and shaped with disabled people - not imposed upon them.
We urge the government to pause and listen.
*N.B. Where the use of the word ‘fluctuating' is used, this is to align with DWP terminology.
Ella Smith, Welfare Rights Consultant,, The ME Association
 
Further Information

• The ME Association’s Position Statement on the Proposed Welfare Reforms  | June 18, 2025
• Fighting for Fairness: We Need Your Voice to Challenge Benefit Reforms | June 19, 2025
• The ME Association: Parliamentary Debate: Disabled People in Poverty | June 19, 2025
• The ME Association: Welfare Reforms: The ME Association strongly opposes government press release! | June 20, 2025

 
 
Action for ME (AfME) announce -
The UK Government sets out its Spending Review - our response
11 June 2025
Earlier today, the Chancellor set out the Spending Review and we are encouraged to hear the Chancellor’s plans to invest in the NHS. It is clear that this investment is needed, alongside a greater understanding of ME amongst healthcare professionals.
 
However, the Government’s proposed welfare reforms pose serious risks to people affected by ME. The views and experiences of the community, as part of the Green Paper consultation, must be listened to and acted on to prevent vital support being taken away from those who need it.
Furthermore, the Chancellor confirmed that annual funding for research and development will rise to £22 billion by the end of the spending review, representing a record level of public investment in UK R&D.
Biomedical research into ME is urgently needed to understand the disease, develop diagnostic tests and find treatments. We are calling on the Government to take urgent action to ensure a strategic approach for research into ME and associated post-infectious illnesses, including long Covid.
We will continue to work closely with our Parliamentary Champions and the APPG on ME to ensure that your voices are heard.
 
 
 
Have you contacted your local MP explaining your concerns?
Further information, plus the MEA’s template letter is available on our website, at -
Welfare benefits - Stricter PIP eligibility, and Changes to ESA assessments

•  Action for ME  •  Benefits 
•  Government U.K.  •  M.E. Association 
•  MP  •  Parliament U.K. 

Have you contacted your local MP explaining your concerns?
The MEA received a letter from the Secretary of State for Work and Pensions.
 
The ME Association’s website contains a template letter for your use,  -
Write to your MP about the recent announcements on Welfare Reform 
May 29, 2025
 
On Tuesday (18.03.25), the Rt Hon Liz Kendall MP, Secretary of State for Department of Work and Pensions (DWP) announced the governments plans for welfare reform.
Over 120+ organisations and charities are concerned that these changes, especially the decision to change the eligibility criteria for PIP and make it even more difficult to obtain, will have a devastating affect on disabled people and the communities they represent, pushing many into financial hardship.
 
We know from a Scope report (2024) that life costs more for disabled people. Many people who have ME/CFS and Long Covid, which can both be a disabling and very debilitating condition already live in poverty as a result of these extra costs. Therefore the impact of disability benefits cuts would be disastrous.
The ME Association is actively challenging the government’s proposed welfare reforms and has launched a major project to defend the rights of people with ME and Long Covid.
We will shortly be publishing a formal position statement, meeting directly with key policymakers including the Minister for Disabled People, and launching a national survey to gather vital evidence from our community.
This work is a priority for the charity, and we’re committed to ensuring the specific needs and experiences of people with ME and Long Covid are clearly represented and heard.
Write to your MP
 
Ella Smith, Welfare Benefits Adviser to the ME Association has kindly drafted a template letter which can be used to write to your MP.  Please consider writing to your MP (List of Herefordshire and Worcestershire MPs) to express your personal concerns using our Template Letter available for your use. 
 
 
The ME Association (MEA) wrote to State for Work and Pensions.
MEA writes to the Rt Hon Liz Kendall,
Secretary of State for Work and Pensions  - The ME Association
March 17, 2025
Summary

• The ME Association (MEA) raised concerns to Liz Kendall about press reports indicating cuts to welfare benefits, stricter PIP eligibility, and changes to ESA assessments, which would negatively impact people with fluctuating conditions like ME/CFS and Long Covid.
• Despite years of collaboration with the DWP, assessment procedures for people with fluctuating conditions remain inadequate, often leading to unfair denials of benefits.
• The MEA calls for the government to reconsider proposed welfare reforms, as they could push individuals with ME/CFS into poverty and debt, and urges consultation with medical charities before implementing changes.

The MEA has written to Liz Kendall to express our deep concerns about press reports which indicate that she is about to announce cuts to some welfare benefit payments along with making it far more difficult to claim PIP/personal independence payment. We have since received acknowledgement of this letter from Liz Kendall's office.

Letter to Liz Kendall
15 March 2025
Dear Secretary of State
Welfare benefit reform
Along with representatives from several other medical charities that represent people with fluctuating and long term medical conditions (examples include AIDS/HIV,  inflammatory bowel disease, multiple sclerosis and rheumatoid arthritis), the ME Association (MEA) has worked with the DWP over many years to try and make the eligibility criteria and assessment procedures for sickness and disability benefits more fair and effective for this group of people.
 
In particular we have taken the view that where people are clearly unable to work they should be supported by the benefits system and not forced into trying to obtain work that they cannot do and that employers do not even want to offer to them. 
Equally, where someone is or may be able to carry out some form of work there must be far more incentives for employers to take on people who may require periods of sick leave and modifications to their duties in order to work along with flexibly in the benefit system to allow for a flexible or part time return to work or a failed return to work.
 
For your information I attach of copy of the very comprehensive report that the DWP Fluctuating Conditions Group produced on the challenges facing people with these conditions when it comes to applying for work related DWP benefits and the use of the Work Capability Assessment – which we understand will form part of the government review.
Unfortunately, despite our efforts over the years, which have also included working with Professor Malcolm Harrington on his major review of the Work Capability Assessment, the procedures for assessing and claiming ESA and PIP are still not fit for purpose if you have a fluctuating medical condition – where the severity of ill health and disability often varies throughout the day, from day to day and from week to week.  
As a result of having assessment procedures that do not meet the needs of people with fluctuating medical conditions, many people with moderate or severe ME/CFS, and Long Covid, are still being refused sickness and disability benefits.   They are only succeeding when there is a reconsideration of their case or they go to appeal - where the high rate of success helps to confirm that the initial assessment procedures are just not working.
People with ME/CFS and Long Covid are therefore fearful and frightened by the press reports this past week which indicate that the government is about to announce major welfare benefit reforms and spending cuts which will include stricter eligibility criteria for PIP, a reduction or freeze in the level of payments, changes to the ESA Work Capability Assessment, and reductions in payments relating to Universal Credit.
 
We are also surprised and disappointed to find that medical charities representing people with long term conditions have not been consulted about these changes.
The purpose of PIP is to provide people who have significant problems with care or mobility with the financial support which helps them to improve their quality of life and in some cases with the costs of returning to some form of employment - something that the government is obviously keen to encourage.  
Making it even more difficult to claim PIP, or reducing the financial support it provides, is going to have a very detrimental effect on people with ME/CFS and will result in some of them being forced into poverty and debt.
 
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.
At the same time we do obviously recognise the case for reforming some aspects of the welfare benefits system.  So we are very willing to collaborate with the DWP to achieve meaningful change that will help people with ME/CFS. However, this must involve understanding and addressing the diverse needs of people who are ill and disabled, and not with cuts that could undermine their security and dignity.
Thank you for considering our concerns.  
We look forward to hearing from you and hopefully working with you on a benefit strategy that will help people with fluctuating medical conditions who are capable of returning to work and not penalise those who are genuinely unable to work.

Yours sincerely
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

DWP Replies to Dr Charles Shepherd’s Letter
Regarding Welfare Cuts  The ME Association.
April 3, 2025
On the 15th of March, 2025, Dr Charles Shepherd, MEA Hon. Medical Adviser, wrote to Rt Hon Liz Kendall to express the ME Association's deep concern around press reports indicating she would announce cuts to welfare benefits. This letter was sent prior to the the parliamentary announcement and the release of the Green Paper on 18th March.
The ME Association intends to send a follow up letter to Rt Hon Liz Kendall and provide a response to the Green Paper consultation.

Letter
On the 3rd of April, the DWP replied - as follows:
Dear Dr Shepherd,
Thank you for your recent correspondence about benefit reforms.
The Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper was published on 18 March 2025. The consultation sets out plans and proposals to reform health and disability benefits and employment support.
 
The Green Paper is an important staging post on a journey of reform, building on the vision and approach set out in the Get Britain Working White Paper in November 2024. It sets out our vision, strategy and proposals for change.
The Government wants to improve and refine its plans by consulting on certain measures as described within the paper. It is committed to putting the views and voices of disabled people and people with health conditions at the heart of everything it does.
 
The consultation - Pathways to Work: Reforming Benefits and Support to Get Britain Working - can be responded to via a Microsoft Form using the following link:  Green Paper Consultation
By emailing [email protected] or; by post at: Pathways to Work Consultation, Disability and Health Support Directorate, Department for Work and Pensions, Level 2, Caxton House, Tothill Street, London, SW1H 9NA.
Further details about the Green Paper can be found by accessing the following link: Information on Green Paper
 
Yours sincerely,
Head of the Ministerial Correspondence Team
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS

Further Information

• GOV UK: Biggest shake up to welfare system in a generation to get Britain working | 18th March 2025
• DWP: Pathways to Work: Reforming Benefits and Support to Get Britain Working  | March 2025
• MP Jo Platt: Parliamentary Question to DWP: Employment: ME/CFS and Long Covid  | 17th March 2025
• The ME Association: MEA signs Scope’s open letter to the chancellor regarding welfare cuts  | 18th March 2025
• Disability Rights UK: Green Paper published – £5 billion cuts proposed by scrapping the WCA and changed PIP assessment  | March 2025
  
• Guardian: Councils and NHS could face millions in extra costs due to disability benefit cuts | 24 March, 2025
  
• Disability Policy Centre: Welfare reforms likely to deliver no significant savings in “all pain and no gain” scenario, according to new analysis. | 24 March, 2025
  
• The ME Association: Science Norway: Almost no ME/CFS patients return to work | 25 March, 2025
• GOV UK: Government to listen, learn and deliver as consultation on transformational welfare reforms begins | 7 April, 2025
  

lease join us, at our Afternoon Café Meeting on Wednesday, 11 June, from 2.00 - 3.30 pm, in the Next Café, above the Next store at the Elgar Retail Park, Blackpole, Worcester, WR3 8HP.  (There is a lift and escalator in the store, plus plenty of parking, including blue badge spaces near the main entrance.)  
 
All people with M.E., CFS, FMS, Long Covid, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us whenever it suits you.
 
Future Afternoon Café Meetings will also be on the 2nd Wednesday of each month, from 2.00 - 3.30 pm, at the Next Café.  Further information with all 2025 dates listed is available on our Meetings page.

Unfortunately, the Worcestershire meetings are currently only being held in Worcester, but hopefully they will be at further locations in the future.  Venues for previous lunches and afternoon social gatherings are listed on the Worcestershire ME Social Group website, giving an idea of locations where we have previously met.  To have meetings in further locations we need people who are able to attend from the beginning of every meeting.

•  Local News  •  Meetings  •  Worcestershire  •  Worcestershire M.E. Social Group