The ME Association is engaging in ongoing campaign work regarding welfare reform, and we will be looking at the subject of employment a lot in the forthcoming months. The reason for this is simple; in its desire to reduce the rising cost of welfare benefits, the government wants to ‘cajole/persuade' more disabled people into work by making it harder to claim and remain on benefits and by providing work incentives.
Last week we submitted evidence to the Work and Pensions Select Committee inquiry on disability and employment. The government is proposing wide sweeping changes to disability benefits, based on the policies outlined in the “Pathways to Work” Green Paper, published in Spring 2025. Most of these changes involve a heavy push towards employment, regardless of whether someone is disabled or currently classed as having “limited capability for work/work related activity”. Many people in our community are understandably frightened of what these proposals might mean. The ME Association is very concerned about the proposed reforms, and we are doing we are doing all we can to constructively influence policy. We are engaging with government, not because we agree with their proposals but because we need to back up our concerns with evidence.
The Green Paper proposes to abolish the Work Capability Assessment. People who are currently exempt from work search and work preparation requirements could be pushed into compulsory activity to continue receiving benefits. For people with ME/CFS or Long Covid, this is a serious risk. When someone is pushed beyond their tolerance for activity, the result can be significant long-term harm. This is why we have been gathering data urgently to evidence the risks to people with these conditions and provide credible opposition to these plans.
Thank you to everyone who completed our recent survey on work and volunteering. We know many people felt angry and distressed at being asked about employment when work is not possible for them. By completing the survey, you have made a meaningful contribution to evidencing how harmful these proposals could be. Your responses help us show government what the reality really looks like for people with ME/CFS or Long Covid regarding their ability to work.
We are still collating case studies for our ongoing welfare reform work. If you would like to be an anonymised case study regarding your experiences with either employment, volunteering or claiming benefits, please email: ella.smith@meassociation.org.uk
What we sent to the Committee inquiry
Our submission explains the realities of living with ME/CFS or Long Covid and trying to remain in employment. We set out why engaging with the Job Centre must be voluntary and tailored and paced on an individual basis, rather than forcing people into inappropriate and potentially harmful activity.
We recommended:
- That people should have a secure form of income while they test their tolerance for work, so they are not forced to risk either their health or their benefit income if they do want to try some employment.
- Employers who sign up for Disability Confident (a government initiative designed to encourage employers to recruit and retain disabled people and those with health conditions schemes) should have to meet stricter criteria and external verification that their working practices are genuinely inclusive, supportive and retain and develop disabled employees. Currently, self-assessment by the employer is enough to meet the standard; effectively marking their own homework.
- Support and promotion for flexible and remote working where possible.
- Better Access to Work (a government scheme which gives practical assistance to disabled people to enable them to work) processes; faster decisions; and joined up liaison with employers.
Survey findings
We drew on our two community surveys from October 2022 and September 2025 in our submission to the inquiry.
In these surveys, we found:
Ability to work
- Unable to volunteer: 73 percent.
- Unable to work in employed roles: 70 percent.
- Unable to work in self-employment: 94 percent.
Reasons for being unable to work
- Badly affected by ME/CFS or Long Covid: 52 percent in 2022; 69 percent in 2025.
What the survey results mean
It will come as little surprise to those with direct experience that most people with ME/CFS or Long Covid are not able to work. The few that are, struggle to find employment that will fit their needs in this way. The high rates of survey responses from people who are unable to manage any work at all show exactly why mandatory, forced work activity would put people with ME/CFS or Long Covid at risk. Any policy that the government does try to put in place must be protective, not coercive and should never punish people for their inability to manage employment. Where some work is possible, success is more likely with high amounts of flexibility from the employer, reduced part-time hours, remote working and the opportunity to take regular rest breaks.
More Information:
- ME Association: Have Your Say on Disability And Employment/Volunteering (Survey now closed) | September 9, 2025
- Welfare Reform: The Universal Credit Bill – Why It Matters to People with ME/CFS and Long Covid | July 4, 2025
- Welfare reform round-up: new independent disability panel, applications opening soon | August 22, 2025