Demographics[edit | edit source]
At least one million Americans are estimated to have myalgic encephalomyelitis/chronic fatigue syndrome (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.
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[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.
- 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.
- 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. The #MEAction recommendations include community recommendations in red.
- 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" 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. 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.
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]
The Social Security Disability application may be completed online, on paper, in person, or through a lawyer or caseworker.
"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."
[edit | edit source]
- Resources for getting approved for disability include this Guide to Social Security Disability for People with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, available on the #MEAction website.
Patient charities[edit | edit source]
Research[edit | edit source]
- Institute of Medicine report
- NIH Post-Infectious ME/CFS Study
- USA researchers
- American research initiatives
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.
- Delaware::No pages meet these criteria.
- Georgia:No pages meet these criteria.
- Idaho:No pages meet these criteria.
- Indiana:No pages meet these criteria.
- Kentucky:No pages meet these criteria.
- Maine:No pages meet these criteria.
- Montana:No pages meet these criteria.
- Nebraska:No pages meet these criteria.
- New Hampshire:No pages meet these criteria.
- New Jersey:
- New York:
- New Mexico:No pages meet these criteria.
- North Carolina:
- 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.
- Rhode Island:No pages meet these criteria.
- South Carolina:No pages meet these criteria.
- South Dakota:No pages meet these criteria.
- Vermont:No pages meet these criteria.
- West Virginia:No pages meet these criteria.
- Wisconsin:No pages meet these criteria.
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]
- New Jersey Legislation
- New York Department of Health May 2017 Letter To All NY State Physicians on ME/CFS
Learn more[edit | edit source]
- Forgotten Plague (2015) Documentary
- Invisible Illness - Stories of Chronic Fatigue Syndrome Youtube Mini-Doc (2015)
- What happens when you have a disease doctors can't diagnose - TED Talk (2016) by Jennifer Brea
- Unrest (2017) Documentary
See also[edit | edit source]
References[edit | edit source]
- "What is Myalgic Encephalomyelitis (ME)?". #MEAction. Retrieved Jul 15, 2019.
- Institute of Medicine (USA); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Feb 10, 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
- Trial By Error: The CDC Drops CBT/GET - Virology Blog
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - CDC.gov
- New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018
- S, Jaime (Oct 11, 2018). "#MEAction Sends Recommendations to CDC to Update its ME Website - #MEAction". #MEAction. Retrieved Oct 12, 2018.
- "Recommended Changes to the CDC Webpages on ME" (PDF). meaction.net. Sep 2018.
- IOM 2015 Diagnostic Criteria
- Hunger Striker Decries FDA Denial of Only Medicine for Chronic Fatigue Syndrome, Day 8 - Before It's News
- Ampligen price more than doubles, available soon in Europe - MEAction By: Jen Brea
- CFS - CDC
- Disability MASS CFIDS
- CFS Womenshealth.gov