Centers for Disease Control & Prevention
The Centers for Disease Control & Prevention (CDC) is the leading national public health institute of the United States.
CDC History with CFS
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."
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.
The 1988 case defintion of Holmes criteria was developed to diagnose CFS. It was never widely adopted.
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."
The 1994 case defintion of Fukuda criteria was developed to diagnosed CFS. It is used worldwide in research.
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."
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.
The 2005 case definition Reeves criteria was developed to diagnose CFS. It was never widely adopted.
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 2010, Reeves was unexpectedly and without explanation removed from the CFS program and reassigned as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC. Some critics saw his removal as an outward sign that the agency was willing to transform the CFS program and recommit to a more rigorous look at the illness.
Public Health Grand Rounds
- 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
- 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
"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."
- 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
- Hillary Johnson. (1996). Osler's web: inside the labyrinth of the chronic fatigue syndrome epidemic. Crown Publishers.
- Osler's web: inside the labyrinth of the chronic fatigue syndrome epidemic, Hillary Johnson - Crown Publishers - 1996
- 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/
- 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.
- 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
- 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