Centers for Disease Control and Prevention
The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States.
- 1 CDC History with ME/CFS
- 2 Difficult relationship with ME/CFS communities
- 3 Public Health Grand Rounds
- 4 Notable studies
- 5 PACE Trial
- 6 Notable people
- 7 ME/CFS awareness
- 8 See also
- 9 Online presence
- 10 References
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. However the organization recognized Chronic Fatigue Syndrome (CFS) as a serious illness and began raising medical and public awareness of it in 2006. Its role has involved developing definitions, providing information to doctors, patients, and health care teams, and funding and performing research.
Developing definitions of ME/CFS[edit | edit source]
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]
- July 3 2017, the CDC's Chronic Fatigue Syndrome page has been changed to Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and GET and CBT recomendations have been removed.
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."
A small number of patients and patient advocates have threatened violence and death against researchers who see mental as well as physical causes of the illnesses
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 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."
In 2000, Senator Reid stated: "I don't think it's fair that the Centers for Disease Control arbitrarily determined what Congress did is of no importance, and they can do with the money what they want. That's why not only do I think it's wrong from a substantive, moral standpoint, but it may be criminally wrong, and that's why I'm having the Justice Department look at it." K. Kimberly Kenney, then president and CEO of the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, based in Charlotte, N.C., honored Senator Reid in March 2000 for his efforts to uncover the whereabouts of lost funds. She explained in a Las Vegas Sun article that the association had long suspected misspending by the CDC and had been working for six years to uncover such findings. "We couldn't get enough documentation to support our suspicions, and it was with Senator Reid's help that we were finally able to nail their feet to the ground."
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."
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.
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. Read letter here.
Public Health Grand Rounds[edit | edit source]
- Feb 2016, Chronic Fatigue Syndrome: Advancing Research and Clinical Education Video Slides Presented by: Charles W. Lapp, MD, Elizabeth R. Unger, PhD, MD, and Anthony L. Komaroff, MD
Notable studies[edit | edit source]
- 2016, CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education. Morbidity and Mortality Weekly Report
- CDC Multi-site Clinical Assessment of CFS
- Wichita Clinical Study
PACE Trial[edit | edit source]
"The collaboration with Peter White is largely because Peter White came to us when the national health service 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."
Notable people[edit | edit source]
ME/CFS awareness[edit | edit source]
- 2007, CFS/ME CDC "Missing My Life" PSA aired on TV via YouTube
- 2017, America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS by Dr. Elizabeth Unger and Dr. Christine Robinette Curtis
- 2017, ME/Chronic Fatigue Syndrome Awareness Day
See also[edit | edit source]
Online presence[edit | edit source]
References[edit | edit source]
- 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.
- Straus, Stephen; Tosato, Giovanna; Armstrong, Gary (1 January 1985). "Persisting Illness and Fatigue in Adults with Evidence of Epstein-Barr Virus Infection". Ann Intern Med: 7–16.
- Gerberding (June 7, 2008). "Address at CFS awareness campaign launch". CDC website. Department of Health and Human Services. Centers for Disease Control and Prevention. Invalid
- Trial By Error: The CDC Drops CBT/GET - Virology Blog
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
- New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018
- New ME/CFS Web Content for Healthcare Providers - CDC - Jul 12, 2018
- Hillary Johnson. (1996). Osler's web: inside the labyrinth of the chronic fatigue syndrome epidemic. Crown Publishers.
- McKie, Robin (20 August 2011). "Chronic fatigue syndrome researchers face death threats from militants". The Observer. Retrieved 10 July 2018.
- 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/
- Ferguson, L. (n.d.). Fighting fatigue. Retrieved July 16, 2016, from lasvegassun.com/news/2000/may/09/http://lasvegassun.com/news/2000/may/09/fighting-fatigue/
- Johnson, C. (2010, January 30). A Look Back at Dr. Reeves CDC [Web blog post]. Retrieved July 16, 2016, from http://phoenixrising.me/archives/1224
- Joe, S., & Valerie, S. (n.d.). CDC Misled Congress on Spending, Records Show Agency Diverted Funding, Filed False Reports. Retrieved July 16, 2016 from http://www.wicfs-me.org/wi_cfs_-5.htm.
- Osler's web: inside the labyrinth of the chronic fatigue syndrome epidemic, Hillary Johnson - Crown Publishers - 1996
- 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
- Chronic Fatigue Syndrome Advisory Committee (CFSAC) May 27 2009