United States



-brief description-

Demographics
At least 1 million Americans are estimated to have ME/CFS. 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. This represents a prevalence of around 0.3% of the population.

A report by the Health and Medicine Division of the National Academies estimates the number of people with ME/CFS in the US to be between 836,000 and 2.5 million.

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.

Medical guidelines

 * Centers for Disease Control (CDC) The CDC Guidelines for CFS have been criticized by the ME/CFS community for its continued recommendations of exercise even though the Institute of Medicine report (IOMR) does not recommend Graded exercise therapy or Cognitive behavioral therapy which were implemented in the UK due to the PACE trial. Some healthcare practitioners in the USA will still implement Exercise therapies and refer patients to psychiatrists even though the (IOMR) did not recommend these as forms of treatment.
 * 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 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) and new diagnostic criteria has been proposed but not implemented as of April, 2016.
 * Health and Human Services (HHS) The HHS has a Chronic Fatigue Syndrome Advisory Committee. (CFSAC)

National health department

 * Centers for Disease Control (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
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
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
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. 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.

Patients have stated that Rituximab is being offered to ME/CFS patients in the United States (Andreas Kogelnik at the Open Medicine Institute) and in Norway (a private clinic in Sandnes) but Jonathan Edwards has advised against this, stating in 2015 "As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively".

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
Disability benefits for CFS are available under the Social Security Administration.

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

For Social Security disability benefits you must have specialists completing SSA paperwork. A Primary doctor may be able to submit notes and tests he/she has performed in your behalf but it is a specialist that must be involved with your diagnosis and treatment for the condition you are being disabled for. An example of a Primary being able to complete and submit SSA paperwork for you: A Primary that is an Internist who specializes in Rheumatology and CFS; he/she would be considered a specialist but always check with the SSA to be certain. You may have to have the doctor submit billing as a Specialist and not a Primary which may mean different out of pocket expenses. However, if you see this same doctor only as your Primary he/she may not be able to complete SSA paperwork.

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."

Patient charities

 * National Alliance for Myalgic Encephalomyelitis
 * Massachusetts CFIDS/ME & FM Association
 * May12.org
 * 
 * ME Advocacy

Research

 * Institute of Medicine report
 * NIH Post-Infectious ME/CFS Study
 * USA researchers
 * American research initiatives

Clinicians
Lucinda Bateman (UT) Derek Enlander; Susan Levine; Benjamin Natelson (NY) Nancy Klimas; Irma Rey ; Maria Vera (FL) Courtney Craig; Daniel Peterson (NV) Phillipe Bottello; John Chia; OMI Clinic: David Kaufman and Andreas Kogelnik (CA) Jacob Teitelbaum (HI) Richard Podell (NJ) Paul Cheney ; Charles Lapp ; Laura Black (NC); Amy Yasko; Jose Montoya (CA) Alan Weiss ; Alan Pocinki ; Peter C. Rowe; Ritchie Shoemaker (MD) Edward Conley (MI)

Notable patients
Jennifer Brea, Whitney Dafoe, Ryan Prior, Jennie Spotila, Brian Vastag, Hillary Johnson, Julie Rehmeyer, Leonard Jason, Cort Johnson, Deborah Waroff, Beth Mazur, Mary Schweitzer, Steven Lubet, Carol Head, Erik Johnson, Chardale Dotson Irvine

Proclamations
There is a list of United States proclamations.

States

 * New Jersey Legislation

Learn more

 * Forgotten Plague 2015 Documentary
 * Invisible Illness - Stories of Chronic Fatigue Syndrome Youtube Mini-Doc