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.

CDC History with ME/CFS
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
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

 * Jul 3, 2017, the CDC's Chronic Fatigue Syndrome page has been changed to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); graded exercise therapy (GET) and cognitive behavioral therapy (CBT) recommendations have been removed.


 * Jul 12, 2018, the "Information for Healthcare Providers" tab and its sub-tabs were updated.
 * Feb 25, 2019, Dr. Elizabeth Unger, Chief of CDC's viral diseases branch that houses the ME/CFS program, in collaboration between Medscape and the CDC put out brief video and commentary page with links for medical professionals: Chronic Fatigue Syndrome: It's Real, and We Can Do Better.

Advocacy reaction to the CDC update for healthcare providers

 * 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 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.
 * Oct 11, 2018, #MEAction sent recommendations to the CDC to update its ME/CFS website. The #MEAction recommendations include community recommendations in red.

Difficult relationship with ME/CFS communities
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."

Diverted research funding
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."

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
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
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.

Public Health Grand Rounds

 * Feb 16, 2016, Beyond the Data - Chronic Fatigue Syndrome: Advancing Research and Clinical Education

https://www.youtube.com/watch?v=hRdn4A2SGic

"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."


 * Feb 19, 2016, Chronic Fatigue Syndrome: Advancing Research and Clinical Education Video Power Point

https://www.youtube.com/watch?v=0SnJy5AOSd8

"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

 * 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
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."

Notable people

 * John Iskander
 * William Reeves
 * Jin-Mann Sally Lin
 * Elizabeth Unger

ME/CFS awareness

 * 2007, CFS/ME CDC "Missing My Life"
 * 2017, America’s Hidden Health Crisis: Hope for Those Who Suffer from ME/CFS
 * 2017, ME/Chronic Fatigue Syndrome Awareness Day

Online presence

 * CDC website
 * CDC ME/CFS website
 * Twitter