United States

United States

Demographics[edit | edit source]

At least one million Americans are estimated to have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).^[1] The Institute of Medicine report estimated 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US.^[2] This represents a prevalence of around 0.3% of the population.

A report by the Health and Medicine Division of the National Academy of Medicine (NAM) estimates the number of people with ME/CFS in the US to be between 836,000 and 2.5 million.^[3]

Regionally, there are estimates of up to:

300,000 in California
79,000 in Georgia
52,000 in Massachusetts
76,000 in Michigan
69,000 in New Jersey
98,000 in Pennsylvania
55,000 in Seattle
5,000 in Washington D.C.^[4]

Medical guidelines[edit | edit source]

Centers for Disease Control and Prevention (CDC)

In the past, the CDC Guidelines for CFS had been criticized by the ME/CFS community for its continued recommendations of exercise even though the Institute of Medicine report did not recommend GET or CBT which were implemented in the UK due to the PACE trial. Some healthcare practitioners in the US would still implement Exercise therapies and refer patients to psychiatrists even though the IOMR did not recommend these as forms of treatment.

July 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)" and graded exercise therapy (GET) and cognitive behavioral therapy (CBT) recommendations have been removed.^[5]^[6]

Jul 12, 2018, the CDC updated its website's ME/CFS page for Healthcare Practitioners.^[7]

MEAction input

Jul 29, 2018, CDC Revises its Information on ME #MEAction report on the CDC July 2017 and July 2018 website updates. Recommendations for the CDC's ME/CFS page have been created from patient feedback on the updates as well as asking for further patient input.
Oct 11, 2018, #MEAction sent recommendations to the CDC to update its ME/CFS website.^[8] The #MEAction recommendations include community recommendations in red.^[9]

National Institutes of Health (NIH) The NIH has announced the NIH Post-Infectious ME/CFS Study.
Food and Drug Administration (FDA) The FDA has not approved any drug treatment for ME/CFS.
National Academy of Medicine (NAM); (formerly Institute of Medicine (IOM)) The IOM (NAM as of June 2015) released the Institute of Medicine report on February 10, 2015. This is the Clinicians Guide. The name Systemic Exertion Intolerance Disease (SEID) has not been adopted but the new diagnostic criteria have been incorporated into the CDC's ME/CFS website "for informational purposes only"^[10] under the tab IOM 2015 Diagnostic Criteria.
Health and Human Services (HHS) The HHS has a Chronic Fatigue Syndrome Advisory Committee. (CFSAC)

National health department[edit | edit source]

Centers for Disease Control and Prevention (CDC)
National Institutes of Health (NIH)
Food and Drug Administration (FDA)
National Academy of Medicine (NAM); formerly Institute of Medicine (IOM)
Health and Human Services (HHS)

Government health insurance[edit | edit source]

The Affordable Health Care Act (AHCA) - (Obamacare) can lower health care costs, provide more health care choices and improve the quality of healthcare.

If you are not currently on Social Security Insurance (SSI) or Social Security Disability Insurance (SSDI) but need healthcare coverage due to disability there are resources through local city, county or state government. Medical and Health Resources for People with Disabilities

If you recently left a job where you had health insurance you may want to consider COBRA.

Private health insurance[edit | edit source]

There are many private health care providers in the USA. Medical News Today "Health Insurance" article provides a heading: Matching your needs with what is available.

Access to care[edit | edit source]

Although clinicians (see "Clinicians" heading below) are those known to be on the cutting edge of CFS care, they are still limited by the fact there are no approved drugs, therapies or reliable treatments.

As of April of 2016, Ampligen is provided by only a few doctors and the FDA is limiting the number of patients receiving this treatment to 100.^[11] A patient needs to live near or move to any doctor that provides the intravenous treatment. The cost is $75 per vial two times a week administered weekly. This does not include the intravenous cost. Costs may be covered under a recovery program previously known as "compassionate care". The price may go to $200 a vial.^[12]

Ask your Primary, Rheumatologist or Neurologist to recommend a doctor who specializes in CFS or you can look online for the many lists by state for those doctors who will care for ME/CFS patients. Most will not treat with Ampligen or Rituximab but will treat sleep disorders, Orthostatic intolerance, POTS and the many symptoms and co-morbids of ME/CFS.

Social security and disability benefits[edit | edit source]

Disability benefits for CFS are available under the Social Security Administration.^[13]

HHS outlines SSA's Social Security Ruling 14-1p - PDF. Jun 17, 2014

The Social Security Disability application may be completed online, on paper, in person, or through a lawyer or caseworker.

SSI and SSDI have different thresholds and requirements.

"For those who can continue to work part-time with reduced hours and/or responsibilities, state and federal laws require many employers to provide disabled patients with reasonable Job Accommodations."^[14]^[15]