United States

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Jump to: navigation, search
United States

-brief description-

Demographics[edit]

At least 1 million Americans are estimated to have 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 Academies 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]

National health department[edit]

Government health insurance[edit]

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]

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]

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.[5] 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.[6]

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)[7] 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".[8]

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]

Disability benefits for CFS are available under the Social Security Administration.[9]

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."[10][11]

Patient charities[edit]

Research[edit]

Clinicians[edit]

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[edit]

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[edit]

There is a list of United States proclamations.

States[edit]

Learn more[edit]

See also[edit]

References[edit]

  1. http://www.meaction.net/about/what-is-me/
  2. Institute of Medicine (USA); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (10 February 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness 
  3. http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
  4. http://www.huffingtonpost.com/rivka-solomon/millionsmissing-a-hidden-_b_12183114.html
  5. Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome, Day 8 - Before It's News
  6. Ampligen price more than doubles, available soon in Europe - MEAction By: Jen Brea
  7. NRK television, Norway (27 Nov 2015), A private clinic in Sandnes, Norway is treating ME with Rituximab (video) 
  8. Is there any way I can be treated with rituximab privately?
  9. CFS - CDC
  10. Disability MASS CFIDS
  11. - CFS Womenshealth.gov


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