The Challenges People with ME Face When Applying for Benefits

People living with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) face significant barriers when accessing benefits. For those severely affected — often housebound or bedbound — these challenges are even greater. The current system struggles to accommodate complex, fluctuating, and invisible illnesses, leaving many without essential support.

Key Challenges

1. Lack of Understanding
   ME/CFS symptoms such as post-exertional malaise, extreme fatigue, and cognitive dysfunction are often underestimated, leading to incorrect decisions and insufficient support.
2. Demanding Application Process
   Completing detailed forms for PIP, ESA, or Universal Credit can cause severe health deterioration. Even basic communication with the DWP can be overwhelming.
3. Assessments Ignoring Fluctuations
   Face-to-face or telephone assessments fail to reflect the unpredictable nature of ME/CFS, often triggering relapses that last weeks or months.
4. Difficulty Obtaining Medical Evidence
   Healthcare professionals may struggle to describe the disabling effects of ME in DWP terms, resulting in inadequate reports.
5. Stress and Administrative Barriers
   Long waits, repeated reassessments, and appeals worsen symptoms. Many cannot complete the process without advocacy.
6. Need for Specialist Support
   Advice from advocates who understand ME is crucial for accurate claims and fair decisions.

Moving Forward

The 25% ME Group campaigns for fairer treatment and offers guidance to those applying for benefits. No one should be left without financial support because the system fails to recognise the realities of ME.

Practical Tips for Gathering Evidence

• Ensure medical evidence explains how ME affects daily life and matches benefit criteria.
• Collect letters from GPs, consultants, therapists, and carers.
• Provide clear examples of difficulties (e.g., preparing food, walking distances).
• Keep symptom diaries and copies of clinic letters.
• Add personal and carer statements if medical evidence is limited.

Get Support
The 25% ME Group provides information and signposting for people with severe ME and their carers.