Access to benefits

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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[edit | edit source]

  • 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.[1]
  • "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."[2]

US[edit | edit source]

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

Learn more[edit | edit source]

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."[5]

See also[edit | edit source]

References[edit | edit source]

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.