United States

-brief description-

Medical guidelines
The Centers for Disease Control (CDC), National Institutes of Health (NIH) and the Food and Drug Administration (FDA) are all involved with Medical Guidelines for the public and healthcare providers.

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 them.

National health department

 * National Institutes of Health (NIH)
 * Health and Human Services (HHS)
 * Centers for Disease Control & Prevention (CDC)
 * National Academy of Medicine (NAM) - (Formerly IOM)

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.

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

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
 * 
 * MEadvocacy

Research
Institute of Medicine report

Research groups
Open Medicine Foundation, Chronic Fatigue Initiative, Stanford ME/CFS Initiative, Microbe Discovery Project, Bateman Horne Center, Workwell Foundation, Center for Infection & Immunity, Solve ME/CFS Initiative, Simmaron Research, Treatment Center for CFS

Researchers
Ronald Davis, Jarred Younger, Alan Light, Kathleen Light, Andreas Kogelnik, Jose Montoya, David Bell, Mady Hornig, Eric Schadt, Ian Lipkin, John Chia, Rosemary Underhill, Suzanne Vernon, David Berg, Nancy Klimas, Dane Cook, Staci Stevens, Mark VanNess, Christopher Snell, Zaher Nahle, Rich Van Konyenburg, Judy Mikovits, Paul Cheney, Michael Van ElZakker, Zaher Nahle, Michael Zeineh, Anthony Komaroff, A Martin Lerner

Clinicians
Lucinda Bateman (UT) Derek Enlander; Susan Levine (NY) Nancy Klimas (FL) Courtney Craig; Daniel Peterson (NV) Phillipe Bottello; John Chia; OMI Clinic: David Kaufman and Andy Kogelnick (CA) Jacob Teitelbaum; Richard Podell (NJ) Laura Black (NC); Amy Yasko; Jose Montoya (CA)

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,

Deceased patients
Chardale Dotson Irvine

Learn more

 * Forgotten Plague
 * Invisible Illness - Stories of Chronic Fatigue Syndrome