United States

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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]

  • 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.
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 health department[edit | edit source]

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]

Blogs about navigating SSD process[edit | edit source]

Patient charities[edit | edit source]

American Patient Groups

Research[edit | edit source]

Clinicians[edit | edit source]

  • Alaska:No pages meet these criteria.
  • Alabama:No pages meet these criteria.
  • Arkansas:No pages meet these criteria.
  • Arizona:No pages meet these criteria.
  • California:

Amy Yasko, Andreas Kogelnik, Bela Chheda, David Kaufman, Eric Gordon, Erich Ryll, Hector Bonilla, Jane Norris, John Chia, Jon Kaiser, Jose Montoya, Kent Holtorf, Lily Chu, Phillipe Bottello

  • Colorado:

Lisa Corbin, Nelson Gantz

  • Connecticut:

Morris Papernik

  • Delaware::No pages meet these criteria.
  • Florida:

Alison Bested, Daniel Dantini, Irma Rey, Jane Fitzpatrick, Maria Vera, Michael Antoni, Nancy Klimas, Roland Staud, Rosemary Underhill

  • Georgia:No pages meet these criteria.
  • Hawaii:

Jacob Teitelbaum

  • Idaho:No pages meet these criteria.
  • Illinois:

Kristine Healy

  • Indiana:No pages meet these criteria.
  • Iowa:

Arthur Hartz

  • Kansas:

Karen Jordan

  • Kentucky:No pages meet these criteria.
  • Louisiana:

Adrian Casillas

  • Maine:No pages meet these criteria.
  • Maryland:

Alan Pocinki, Alan Weiss, Jacqueline Rose, Peter Rowe, Rebecca Patterson Collier, Ritchie Shoemaker, Stephen Straus

  • Massachusetts:

Alan Gurwitt, Anthony Komaroff, David Systrom, Jordan Dimitrakoff, Ronald Tompkins

  • Michigan:

A Martin Lerner, Alisa Koch, Daniel Clauw, Edward Conley

  • Minnesota:

Ann Vincent, Elizabeth L. Maloney

  • Mississippi:

Gailen Marshall

  • Missouri:‎

Joseph Brewer

  • Montana:No pages meet these criteria.
  • Nebraska:No pages meet these criteria.
  • Nevada:

Daniel Peterson, Kenny De Meirleir, Robert Fredericks

  • New Hampshire:No pages meet these criteria.
  • New Jersey:

James Oleske, Malcolm Schwartz, Richard Podell

  • New York:

Benjamin Natelson, Derek Enlander, Gudrun Lange, Jesse Stoff, Julian Stewart, Lawrence Afrin, Maureen Hanson, Patricia Fennell, Peter Manu, Susan Levine

  • New Mexico:No pages meet these criteria.
  • North Carolina:

Charles Lapp, Laura Black, Paul Cheney

  • North Dakota:No pages meet these criteria.
  • Oklahoma:No pages meet these criteria.
  • Ohio:No pages meet these criteria.
  • Oregon:No pages meet these criteria.
  • Pennsylvania:

Joseph Garabedian

  • Rhode Island:No pages meet these criteria.
  • South Carolina:No pages meet these criteria.
  • South Dakota:No pages meet these criteria.
  • Texas:

Adrian Casillas

  • Utah:

Lucinda Bateman, Nathan Holladay

  • Vermont:No pages meet these criteria.
  • Virginia:

Gary Kaplan

  • Washington:

David Buscher, Dedra Buchwald

  • West Virginia:No pages meet these criteria.
  • Wisconsin:No pages meet these criteria.
  • Utah:

Lucinda Bateman, Nathan Holladay

Notable patients[edit | edit source]

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, Morgan Fairchild, Jeannette Burmeister, Toni Bernhard, Robert Miller, Laura Hillenbrand

Proclamations[edit | edit source]

There is a list of United States proclamations.

States[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

Graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

Cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

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.

Systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

Systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

Chronic fatigue syndrome advisory committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

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.