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."

US

The United States has Social Security Insurance/Social Security Disability (SSI/SSD). Long Term Disability (LTD) is available through private insurance companies and many businesses offer this insurance to their employees.

Please Note: The following is NOT legal advice and it should not be relied upon in taking steps for a disability case. Only the Social Security Administration (SSA) and a disability lawyer can provide the most up to date and the correct legal avenue for bringing a disability case.

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Preparing For Your Social Security Disability Hearing: What To Expect By Michles Booth (2015)

Learn more

• The Sleepy Girl Guide To Social Security Disability (U.S.)
• Victory For ME Disability Claim – U.S. Court Upholds Plaintiff's Lawsuit After Being Denied Disability

Brian Vastag was able to prove his post-exertional malaise (PEM) was a severe symptom causing disability with a Two-day cardiopulmonary exercise test (CPET). qEEG and cognitive tests revealed he had "significant problems with visual perception and analysis, scanning speed, attention, visual motor coordination, motor and mental speed, memory, and verbal fluency."

See also

• Fibromyalgia disability process

• Social Security Administration (US)
• Department of Work and Pensions (UK)
• NICE (UK)
• Workwell foundation

supplementary security income (SSI) - United States government disability benefit for those who have not enough work history to claim SSD, including children. Provides payments to adults and children with a disability. Means tested. (Learn more: me-pedia.org)

Social Security Administration (SSA) - SSA is the United States government department for disability benefits, unemployment, and social security/welfare that handles SSD and SSI disability payments.

social security disability (SSD) - United States government disability benefits. Used for those who have previously paid tax and is not means tested. (Learn more: me-pedia.org)

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

two-day cardiopulmonary exercise test (CPET) - A diagnostic test which involves testing an ME/CFS patient exercising on an exercise machine, while monitoring their respiration, especially oxygen consumption. This test is repeated the following day in order to confirm the patient's inability to replicate the first-day performance. This test is thought to be the most objective way to detect post-exertional malaise.