Media Coverage

 

Severely ill patient Whitney Dafoe receives care from his father (research scientist Ron Davis) and other family members.

 

This page provides an overview of some of the best media coverage from the past 30 years focusing mostly or wholly on the disease of myalgic encephalomyelitis (although in many cases the stories use the broader term “chronic fatigue syndrome”).

More media articles about ME and CFS that are not linked elsewhere on this website are listed on the Additional Media Coverage page.

Although the articles listed on this page are generally good, other media coverage very often has provided a damagingly inaccurate portrayal of the disease. It therefore is suggested that journalists covering this topic may want to read the article “Medical, Scientific and Journalistic Pitfalls in the Study of ME/CFS” by Julie Rehmeyer and also a list of Requests to Journalists from a group of concerned M.E. advocates.

 

Tom Kindlon

The Wall Street Journal

In Fall 2015, journalist David Tuller published on Vincent Racaniello’s Virology Blog a multi-part article detailing problems with PACE study and other work suggesting that graded exercise therapy and cognitive behavioral therapy can be effective treatments for M.E. The Wall Street Journal covered the subsequent fight to have data from the studies made available for outside analysis in March 2016 in an article called “Patients, Scientists Fight Over Research-Data Access.” (Pictured: Patient Tom Kindlon.)

 

BBC

Stanford University researcher Ron Davis gave an interview to BBC World Service News Hour about his work on M.E. in 2015, titled “Scientist Dad Searches for Cure for Sick Son.” He also shared information about his son’s health issues with the Palo Alto Weekly earlier that year. (Pictured:  Ronald Davis, Ph.D.)

 

Washington Post

Brian Vastag was a science reporter for the Washington Post prior to acquiring M.E. in 2012. The newspaper published a letter that he wrote to NIH director Francis Collins requesting more funding for the illness in 2015. The article was called “I’m Disabled. Can NIH Spare a Few Dimes?” (Pictured: Brian Vastag in Colorado prior to getting sick.)

 

Scientific American

The release of a report by the Institute of Medicine proposing a new definition and new name for the disease generated a large amount of media coverage in 2015. The article in Scientific American was called “Chronic Fatigue Syndrome Gets a Controversial Redefinition.” Other articles ran in The New York Times; on Al Jazeera America; in Medscape; in Science; in Medical Daily; in New York Magazine; in the Daily Mail; in the Globe and Mail; and in the Washington Post. (Pictured: IOM panel member Peter Rowe, M.D.)

 

Jose Montoya

Medscape

Miriam E. Tucker wrote a long and very in-depth piece providing information about the illness to doctors – called “Chronic Fatigue Syndrome: Wrong Name, Real Illness” – in 2015 in Medscape. (Pictured: Jose Montoya, M.D., of Stanford University.)

 

Face the Nation

Laura Hillenbrand – the author of the best-selling books Unbroken and Seabiscuit – has talked frequently about her struggles with M.E. in the media. The segment on “Face the Nation” was called “Unbroken Author Opens Up About Her Own Personal Struggle.” (Pictured: Laura Hillenbrand.)

 

Washington Post

Science journalist Julie Rehmeyer shared her own experiences having M.E. and discussed issues with the illness in a 2014 article in the Washington Post called “What Is Chronic Fatigue Syndrome and Why Aren’t We Doing More To Treat the Illness?”  A sidebar discussed “How the Definition of Chronic Fatigue Syndrome Keeps Changing.” A version of the article first ran as a two-part series in the respected science blog The Last Word on Nothing. (Pictured: Illness specialist Nancy Klimas, M.D.)

 

BuzzFeed

Veteran reporter David Tuller (who has covered M.E. and CFS for The New York Times) wrote a high-profile story in the online news source BuzzFeed in January 2014 called “How ‘Chronic Fatigue Syndrome’ Obscures a Serious Illness.”  He also wrote a follow-up piece called “With Significant Advances But Little Money, Chronic Fatigue Syndrome Research Tries Crowdfunding.” (Pictured: Patient Jeannette Burmeister in bed with her daughter.)

 

NPR

Reporter Miriam E. Tucker discussed the harm that a bad name and a bad definition does to patients in January 2014 on NPR in an online article and radio story, called “Does Chronic Fatigue Syndrome Need a New Name?” (Pictured: Advocate Jennifer Spotila.)

 

Al Jazeera America

Al Jazeera covered the advocacy efforts undertaken by Jennifer Brea and other M.E. patients  in January 2014 in a video spot and article called “Chronic Fatigue Syndrome Activists Launch ‘Uprising’ From Their Beds.” Jen Brea also blogged in detail in the Huffington Post about her experiences with M.E. in an article in November 2013 called “The Most Prevalent and Devastating Disease Your Doctor Has Never Heard Of.” (Pictured: Jennifer Brea being interviewed.)

 

ABC News

ABC News discussed in 2013 the possibility that those with ME/CFS or other physiological diseases might be misdiagnosed with the new psychiatric diagnosis of “somatic symptom disorder” in the DSM-5 handbook. The title of the segment was “New Psych Disorder Could Mislabel Sick as Mentally Ill.” (Pictured: M.E. patient Lori Chapo-Kroger in her wheelchair.)

 

Daily Mail

Liberal journalist Sonia Poulton wrote about misconceptions about M.E. in a 2012 column in the London newspaper Daily Mail. The article was titled “All in the Mind? Why Critics are Wrong to Deny The Existence of Chronic Fatigue.” (Pictured: Sonia Poulton.)

 

Discover

Immunology professor Vincent Racaniello of Columbia University wrote a blog article for Discover magazine in 2012 on the topic of “A Tale of Two Viruses: Why AIDS Was Pinned to HIV but Chronic Fatigue Remains A Mystery.” (Pictured: Vincent Racaniello, Ph.D.)

 

Virology Blog

Reporter David Tuller published a long article in 2011 focusing on the ways in which the government has failed to handle the disease appropriately on Vincent Racaniello’s Virology Blog. The title was “Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale.” (Pictured: Patient Mary Schweitzer, a former history professor.)

 

The Wall Street Journal

Professor Leonard A. Jason of DePaul University discussed recovering from and then researching the disease in a 2011 article in The Wall Street Journal, called “An Illness That’s Hard To Live With – Or Define.” (Pictured: Leonard Jason, Ph.D.)

 

The Los Angeles Times

Researchers Jay A. Levy and Daniel L. Peterson wrote about “The Mystery of Chronic Fatigue Syndrome” in the L.A. Times in 2011. (Pictured: Daniel Peterson, M.D. (right) with former colleague Paul Cheney, M.D., thirty years after the Lake Tahoe epidemic.)

 

The New York Times

David Tuller is a UC Berkeley journalism professor and DrPH (doctor of public health) who has written numerous articles about the disease for The New York Times. His stories have included “Defining an Illness is Fodder for Debate” (2011) and “Chronic Fatigue No Longer Seen As ‘Yuppie Flu'” (2007). (Pictured: David Tuller.)

 

Hearst-New York Times Syndicate

Llewellyn King is a seasoned journalist who has discussed M.E. a number of times since 2010 in his nationally syndicated newspaper column as well as on his PBS television show, White House Chronicle. Articles have included “The Awful Disease Washington Forgot” and “Chronic Fatigue Syndrome: Misnamed, Misdiagnosed, Misunderstood.” More articles are listed on the White House Chronicle website. (Pictured: Llewellyn King.)

 

The Wall Street Journal

Reporter Amy Dockser Marcus looked back at a 1980’s outbreak of the disease amongst children in Lyndonville, NY, in a retrospective article in The Wall Street Journal in 2011. The piece was called “The Puzzle of Chronic Fatigue.” (Pictured: David Bell, M.D.)

 

PrimeTime Live

This ABC-TV PrimeTime Live news special from 1996 discussed the Lake Tahoe epidemic of the disease that occurred in the mid-1980’s. The program – “Sick and Tired” – followed the release of the book Osler’s Web by Hillary Johnson. (Pictured: Hillary Johnson.)

 

Independent Television Stations

This documentary program about the disease – called “Living Hell” – ran on many independent television stations in 1993. (Pictured: Anthony Komaroff, M.D.)

 

Newsweek

Newsweek covered the illness in-depth in a sympathetic cover story on the illness and the Tahoe epidemic – called simply “Chronic Fatigue Syndrome” – in 1990.

 

20/20

The ABC-TV news magazine show 20/20 covered the Lake Tahoe “mystery illness” epidemic in June 1986, in a segment called “Is That What’s Wrong With Me?” A long article about the outbreak ran in the Los Angeles Times during the same month. (Pictured: Chris Guthrie, who became ill in the Lake Tahoe epidemic.)

 

Information on this website is presented by Paradigm Change. Links are in orange (no underlining).