Access to benefits

Access to disability benefits can be difficult for patients with ME/CFS. This is due to a range of factors including discrimination, poor public understanding, and the fluctuating nature of the condition.

UK

 * A report by Action for ME found that despite 97% of patients experiencing difficulty with two or more daily activities listed in the Care Act 2014 for England, only 16% had received social care assessments, and only 6% had been awarded a care package.
 * "Barriers to self-referral and fair assessment included:
 * lack of clear information about social care process and entitlements (58% of respondents)
 * cognitive and communication difficulties preventing engagement with social care processes (47% of respondents)
 * social care processes ill-adjusted to the very poor stamina of people with M.E./CFS
 * misunderstanding, misinformation and stigma surrounding the label of M.E./CFS acted as a deterrent to asking for help for 38% of respondents and was also perceived to impact on the fairness of assessments and the type of support provided."

Learn more

 * The Sleepy Girl Guide To Social Security Disability (U.S.)