Centers for Disease Control and Prevention

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States.

Cdc-logo.png

CDC History with ME/CFS[edit | edit source]

The CDC has been involved with ME/CFS research and information since the 1980's. At this point, the disease has been studied as epidemic clusters under a wide number of names, solidifying around Epstein-Barr virus infection.[1][2] However the organization recognized chronic fatigue syndrome (CFS) as a serious illness and began raising medical and public awareness of it in 2006.[3] Its role has involved developing definitions, providing information to doctors, patients, and health care teams, and funding and performing research. knkhl The 1988 case defintion of Holmes criteria was developed to diagnose CFS. It was never widely adopted. The 1994 case defintion of Fukuda criteria was developed to diagnosed CFS. It is used worldwide in research. The 2005 case definition Reeves criteria was developed to diagnose CFS. It was never widely adopted.

Website updates[edit | edit source]

  • Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.[6][7]
  • Feb 25, 2019, Dr. Elizabeth Unger, Chief of CDC's Chronic Viral Disease Branch (CVDB), that houses the ME/CFS program, in collaboration between Medscape and the CDC put out brief video and commentary page with links to the CDC's July 12th, 2018 updates for medical professionals: Chronic Fatigue Syndrome: It's Real, and We Can Do Better.[8]

Advocacy reaction to the CDC update for healthcare providers[edit | edit source]

  • Jul 29, 2018, CDC Revises its Information on ME[9] #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 of the healthcare provider update as well as asking for further patient input.
  • Jul 30, 2018, Dr David Tuller wrote an article on the revision of the CDC and stated it was mixed with some good points but some concerns.[10]
  • Oct 11, 2018, #MEAction sent recommendations to the CDC to update its ME/CFS website.[11] The #MEAction recommendations include community recommendations in red.[12]

Difficult relationship with ME/CFS communities[edit | edit source]

Patients, advocates, and physicians affiliated with ME/CFS have had a cautious, and at times fractured, relationship with the CDC. After the 1984 Incline Village chronic fatigue syndrome outbreak of ME/CFS, the CDC was dismissive to the clinical findings of Dr. Daniel Peterson and the afflicted patients. Hillary Johnson wrote her renowned book, Osler's Web, about this frustrating period. During this time the CDC coined the trivializing name, "chronic fatigue syndrome."[13]

Diverted research funding[edit | edit source]

In 1999, Senator Harry Reid requested the Justice Department start a criminal investigation into the diversion of research funds at the CDC that was earmarked for chronic fatigue syndrome. The U.S. Department of Health and Human Services (HHS) reported that the agency misspent millions of dollars appropriated by Congress for research on chronic fatigue syndrome. According to an article in the Las Vegas Sun: "An inspector general reported in May that only $9.8 million of the $22.7 million Congress set aside to study chronic fatigue syndrome from 1995 to 1998 was actually spent on the illness. At least $8.8 million was spent on other research, including measles and polio. But government auditors said they could not determine what happened to an additional $4.1 million and the CDC has not explained where the money went."[14]

Dr. William Reeves[edit | edit source]

Another piece to explain the difficult relationship between the CDC and the CFS community was the leadership of Dr. William Reeves, the CFS Research Chief. The CFIDS Association of America, the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and CFSAC all criticized Dr. Reeves for his autocratic research style and his lack of collaboration. According to Cort Johnson: "Dr. Reeves started out with a disorder that few researchers at the CDC took seriously. Ironically even as his CDC prevalence and economic studies demonstrated it was a serious disorder, he seemed to take it less seriously in the end calling it ‘unwellness’ and referring to a broad range of triggering factors (obesity, inactivity, alcoholism, mood disorders, etc.) which ME/CFS professionals felt leery about."[15]

In the aftermath, Jeffrey Koplan, the CDC Director from 1998 to 2002, placed the chronic fatigue syndrome programs ­on budgetary probation and announced mandatory legal training for all budget managers.[citation needed]

Fake CDC Letter[edit | edit source]

In 1986, a fake letter posted on a CDC bulletin board was discovered and copied by Hillary Johnson in her book, illustrating the belittling attitude the CDC staff had towards the patient population.[16][17]

Multiple chemical sensitivity[edit | edit source]

The CDC is the largest healthcare employer in the United States, and has adopted a scent free policy. The 2009 CDC an indoor air quality policy states:

  1. "CDC encourages employees to be as fragrance-free as possible when they arrive in the workplace...Employees should avoid using scented detergents and fabric softeners on clothes worn to the office. Many fragrance-free personal care and laundry products are easily available and provide safer alternatives;" and
  2. "Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, and chronic headaches/migraines."[18]
See also
Multiple chemical sensitivity.

Public Health Grand Rounds[edit | edit source]

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Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education By Centers for Disease Control and prevention (CDC) (Feb 17, 2016)


In this session of Beyond the Data, Dr. John Iskander and Dr. Anthony Komaroff discuss the disease commonly known as chronic fatigue syndrome and the new research that’s advancing our understanding of this debilitating condition. Tune in to hear Dr. Komaroff’s take on symptoms, treatments, and where we can go from here to provide hope to those with CFS.


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Chronic Fatigue Syndrome: Advancing Research and Clinical Education By Centers for Disease Control and prevention (CDC) (Feb 19, 2016)


Doctors and scientists have not yet found what causes chronic fatigue syndrome. Infections and other medical and biological events are among the many possible triggers, but with no certain cause this disease is difficult to diagnose. A systematic approach to evaluating people with persistent symptoms combined with new diagnostic criteria offers hope for more accurate and faster diagnosis.

Notable studies[edit | edit source]

PACE Trial[edit | edit source]

Former CDC head William Reeves commented on the CDC's involvement in the PACE trial:

The collaboration with Peter White is largely because Peter White came to us when the National Health Service (NHS) in the UK was trying to design its program and formulate recommendations about what the health service in the UK should do. We've consulted with them as far as our ideas and our expertise, and we collaborate with Dr. White on the PACE trial. He's an unusually intelligent individual-you've read some of his comments on some of our articles-whom we enjoy sparring with. He is an expert on autonomic nervous system function and he's highly instrumental in all of the hurdles, both with patients with the government and with physicians, in trying to put together, given the current state of knowledge, a national program.[23]

Notable people[edit | edit source]

ME/CFS awareness[edit | edit source]

See also[edit | edit source]

Online presence[edit | edit source]


References[edit | edit source]

  1. ↑ Jones, J; Ray, C; Minnich, L (1985). "Evidence for active Epstein-Barr virus infection in patients with persistent, unexplained illnesses: elevated anti-early antigen antibodies". Ann Intern Med. 102: 1–7. doi:10.7326/0003-4819-102-1.
  2. ↑ Straus, Stephen; Tosato, Giovanna; Armstrong, Gary (January 1, 1985). "Persisting Illness and Fatigue in Adults with Evidence of Epstein-Barr Virus Infection". Ann Intern Med: 7–16.
  3. ↑ Gerberding (June 7, 2008). "Address at CFS awareness campaign launch". CDC website. Department of Health and Human Services. Centers for Disease Control and Prevention.
  4. ↑ Tuller, David (July 10, 2017). "Trial By Error: The CDC Drops CBT/GET". Virology blog. Retrieved September 7, 2018.
  5. ↑ "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. July 3, 2018. Retrieved September 7, 2018.
  6. ↑ "New ME/CFS Web Content for Healthcare Providers | CDC Online Newsroom | CDC". Centers for Disease Control and Prevention. July 12, 2018. Retrieved September 7, 2018.
  7. ↑ "New ME/CFS Web Content for Healthcare Providers | CDC Online Newsroom | CDC". Centers for Disease Control and Prevention. July 12, 2018. Retrieved September 7, 2018.
  8. ↑ "Chronic Fatigue Syndrome: It's Real, and We Can Do Better". medscape.com. Medscape and CDC. February 25, 2019. Retrieved February 25, 2019.
  9. ↑ Seltzer, Jaime (July 29, 2018). "CDC Revises Its Information on ME - #MEAction". #MEAction. Retrieved September 7, 2018.
  10. ↑ Tuller, David (July 30, 2018). "Trial By Error: The CDC's Update for Healthcare Providers". Virology blog. Retrieved September 7, 2018.
  11. ↑ S, Jaime (October 11, 2018). "#MEAction Sends Recommendations to CDC to Update its ME Website - #MEAction". #MEAction. Retrieved October 12, 2018.
  12. ↑ "Recommended Changes to the CDC Webpages on ME" (PDF). meaction.net. September 2018.
  13. ↑ Hillary Johnson. (1996). Osler's web: inside the labyrinth of the chronic fatigue syndrome epidemic. Crown Publishers.
  14. ↑ Jansen, B. (n.d.). Nevada senator calls for criminal investigation of CDC over misspent money. Retrieved July 16, 2016, from lasvegassun.com/news/1999/nov/11/nevada-senator-calls-for-criminal-investigation-of/
  15. ↑ Johnson, Cort (July 30, 2010). "A Look Back at Dr. Reeves - CDC". Phoenix Rising. Retrieved September 7, 2018.
  16. ↑ Osler's web: inside the labyrinth of the chronic fatigue syndrome epidemic, Hillary Johnson - Crown Publishers - 1996
  17. ↑ "CDC Spoof of ME/CFS". cfstreatment.blogspot.com. Onward Through the Fog. Retrieved September 7, 2018.
  18. ↑ Centers for Disease Control Office of Health and Safety (2009), Indoor Environment Quality Policy (PDF), United States, p. 9
  19. ↑ Iksander, John; Komaroff, Anthony (February 17, 2016). "Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education". YouTube.
  20. ↑ Lapp, Charles W.; Unger, Elizabeth R.; Komaroff, Anthony L. (February 19, 2016). "Chronic Fatigue Syndrome: Advancing Research and Clinical Education". YouTube. Centers for Disease Control and Prevention (CDC).
  21. ↑ Lapp, Charles W.; Unger, Elizabeth R.; Komaroff, Anthony L. (2016). "Chronic Fatigue Syndrome: Advancing Research and Clinical Education" (PDF). cdc.gov (Power Point).
  22. ↑ Unger, ER; Lin, JS; Brimmer, DJ; Lapp, CW; Komaroff, AL; Nath, A; Laird, S; Iskander, J (2016), "CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education", Morbidity and Mortality Weekly Report, 65 (5051): 1434–1438, doi:10.15585/mmwr.mm655051a4
  23. ↑ "Dr Bill Reeves (CDC CFS program) and CBT | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums". forums.prohealth.com. Retrieved January 30, 2019.
  24. ↑ "CFS/ME CDC "Missing My Life"". YouTube. yelliat. February 7, 2007.
  25. ↑ Unger, Elizabeth; Robinette, Christine (May 12, 2017). "America's Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS | | Blogs | CDC". blogs.cdc.gov. Retrieved September 7, 2018.
  26. ↑ "May 12 is ME/CFS and Fibromyalgia International Awareness Day". Centers for Disease Control and Prevention. May 10, 2018. Retrieved September 7, 2018.
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