Newsworthy Highlights of 2011

General Awareness, Media Coverage, Research News | 02. Dec, 2011 by | 2 Comments

Two papers associating CFS with a family of gammaretroviruses (including XMRV) have generated lots of headlines and ample controversy over the past two years. Other events have also raised general and scientific awareness about CFS this year:

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“The CBS Evening News” covered the proteome study and interviewed Maria Brant, a woman with CFS, in her home.

Jan. 26: The Food and Drug Administration announced that new applications for CFS treatments will be assigned to a single division. Previously, CFS applications were scattered to six different review divisions. Link:  http://1.usa.gov/fyXmgo

Feb. 4: Author Laura Hillenbrand educated New York Times readers about her 23-year battle with CFS and the resilience she shares with Louis Zamperini, hero of her latest bestseller, Unbroken. Link: http://nyti.ms/fTOORJ

Feb. 18: The PACE study was published in the Lancet, reporting modest benefits following a six-month course of cognitive behavioral therapy or graded exercise therapy. Many media outlets in the U.K. and the U.S. reduced the authors conclusions to “Talking and exercise could cure M.E.” The dismissive attitudes displayed in news coverage fueled months of discussion, debate and protest. Link: http://bit.ly/h5GxAC

Feb. 23: Researchers at the University of Medicine and Dentistry of NJ and Pacific Northwest National Laboratory reported on spinal fluid markers that distinguish CFS, non-recovered post-treatment Lyme disease and healthy controls. Katie Couric introduced the story that night on “The CBS Evening News.” Link: http://bit.ly/rVUYd3

Mar. 1:
Journalist John Falk “comes out” about his CFS in a blog post on Huffington Post, “CFS and Psychotherapy,” written in response to the misleading media coverage of the PACE study. Link: http://tinyurl.com/4plhl9j

WSJ-front-page1-161x300Mar. 5: CFS was the subject of a major feature in the Wall Street Journal, “The Puzzle of CFS.” It spotlighted Dr. David Bell, some of his long-time patients in Lyndonville, NY, and the lengthy search for better diagnostics and treatment. Link: http://on.wsj.com/fbogho

Mar. 8: David Tuller of the New York Times digs into the definition of CFS with, “Defining an illness is fodder for debate.” The 1,241-word story runs the length of page D5 in the print edition. Link: http://nyti.ms/er3sSk

Mar. 12:
The front page of the Wall Street Journal explored tensions between CFS patients and researchers in “Amid War on Mystery Disease, Patients Clash With Scientists.” Link: http://on.wsj.com/eqjXqm

Apr. 7–8:
The National Institutes of Health hosted the ME/CFS State of the Knowledge Workshop, its first in 10 years. Journalists Amy Dockser Marcus (Wall Street Journal) and David Tuller (New York Times) attended. Link: http://bit.ly/jWb6s0

April 12: Host Llewellyn King featured a panel discussion of CFS on his PBS program, “The White House Chronicle.” Guests were Leonard Jason, PhD (DePaul Univ.), Amy Dockser Marcus (Wall Street Journal); Frances Sellers (Washington Post); and Deborah Waroff (a woman with CFS). Link: http://bit.ly/ldw7qx

April 21: At a town hall meeting in Reno, President Obama was asked about funding for CFS research by Courtney Miller, whose husband Robert has CFS. He pledged to find out what the NIH was doing on CFS and get back to her. Link: http://usat.ly/gaLm2O

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Panel discussion on “The White House Chronicle”

May: For the first time, the Department of Defense included CFS as one of the eligible topics for its Congressionally Directed Medical Research Program. Link: http://1.usa.gov/hqqNit

May 10–11: The Department of Health and Human Services CFS Advisory Committee met to make recommendations to Secretary Kathleen Sebelius. Link: http://bit.ly/lQw9Gi

May 26: Researchers at the University of Utah reported results from an Association-funded study that shows potential biomarkers for CFS following a modest exercise challenge. Link: http://bit.ly/lsCC2a

June 18: The second annual “24 Hours In the Enchanted Forest: A Race to Solve CFS” was held in McGaffey, NM. Organized by Claudia Goodell, the race attracted racers from around the country and coverage by Mountain Flyer Magazine and local media. Link: http://vimeo.com/26042017

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Dr. Anthony Komaroff was interviewed by Sweden’s leading newspaper in August.

June 29: The Institute of Medicine released its report, “Relieving Pain in America,” documenting that 116 million Americans experience chronic painful conditions (including CFS). Link: http://bit.ly/iAgY75

July 20: An independent panel of 26 experts from 13 countries published new criteria for myalgic encephalomyelitis (M.E.) and recommended this term replace CFS. Link: http://bit.ly/rp7ubT

July 24: A young man, Ben DiPasquale, shared his story with Jennifer Johnson and WHAM-13, an ABC affiliate in Rochester, N.Y. Ben had hoped to testify about his four-year battle with CFS at the spring meeting of the federal CFS Advisory Committee but was too ill to travel to Washington, D.C. Link: http://bit.ly/MnKAxs

July 26: Nature Reviews Neuroscience published a six page Q&A with four CFS researchers about their views on CFS, its causes and the future of research. Link: http://bit.ly/pDp5Ly

Aug. 15: NIH announces a new two-year award of $379,000 to Dr. Benjamin Natelson of Beth Israel Medical Center to study neuropathologic abnormalities in CFS. He will collaborate with Dr. Dikoma Shungu’s group at Weill Cornell Medical School on the study. Link: http://bit.ly/pNhPWC

Aug. 24: Our scientific director, Dr. Suzanne Vernon, joined Dr. Anthony Komaroff of Harvard Medical School and other experts in Stockholm for a series of presentations about CFS that captured attention from local media. Link: http://bit.ly/qdZDNs

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A scene from the documentary, “Voices from the Shadows”

Sept.: Ladies’ Home Journal covered the challenge of diagnosing, managing and living with CFS. Link: http://bit.ly/nXJdgx

Sept. 5: Joanne Silberner took a look at CFS research on National Public Radio’s “Morning Edition.” Link: http://n.pr/sl3S4U

Sept 12: Researchers in Bergen, Norway, report in the journal Gut that three years after infection with Giardia lamblia, a common intestinal parasite, 46.1 percent of a large study population reported persistent chronic fatigue, adding data on triggers of post-infection illness. Link: http://bit.ly/pf1B7m

Sept. 15: NIH announced a new three-year, $1,009,125  award to Dr. Kathleen Light and her University of Utah team to extend biomarker research funded by the Solve ME/CFS Initiative. Link: http://bit.ly/pNhPWC

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The Rituxan trial results published in October attracted international media coverage

Sept 22-25: The International Association for CFS/ME held its bi-annual research and clinical conference in Ottawa. Link: http://bit.ly/uWSJir

Sept. 30: Drs. Jay Levy (Univ. of California-San Francisco) and Daniel Peterson (Sierra Internal Medicine) jointly pen a guest editorial to the Los Angeles Times, “The mystery of CFS.” Link: http://tinyurl.com/7u5drmo

Oct. 8: A documentary portraying the stark reality of young people with ME/CFS, “Voices from the Shadows,” made its international debut at the Mill Valley Film Festival. A panel discussion following the screening included Dr. Jose Montoya of Stanford University and David Tuller, MPH, a journalist who has written about CFS for the New York Times. Link: http://bit.ly/rdGSCf

Oct. 8: Award-winning writer Floyd Skloot received positive reviews from the Oregonian for his collection of short fiction, Cream of Kohlrabi. Floyd, who has had CFS since 1988, and his daughter, Rebecca, also received rave reviews for this year’s collection of The Best Science Writing.

Oct. 10: NIH’s Undiagnosed Diseases Program reports on its first two years of operation. CFS is among the most common diagnoses made. Link: http://tinyurl.com/6tx3eq2

Oct. 19: Researchers in Norway published results of a small phase II clinical trial of the monoclonal antibody drug Rituxan in CFS. Their report that 67 percent of those treated with drug showed sustained improvement (compared to 12 percent who received placebo) generated international headlines, an apology from the country’s Minister of Health and widespread hope. Additional studies are underway. Link: http://bit.ly/rCzQFv

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Laura Hillenbrand made news many times in 2011

Oct. 29: Acclaimed jazz pianist Keith Jarrett is interviewed in the Sydney Morning Herald about his new CD, RIO, his career and the impact of CFS on his music. Jarrett made the CD “The Melody At Night, With You,” in 1999 when he was homebound. It was a stark departure from the energetic improvisational style for which he was known before CFS struck. Link: http://bit.ly/t70UnF

Nov 8-9: The DHHS CFS Advisory Committee met to hear public testimony, agency updates and subcommittee reports. Assistant Scretary of Health Dr. Howard Koh announced that Christine Williams had been appointed to serve as an advisor to the Department on CFS. Link: http://bit.ly/vq0fNy

Nov. 18: The National Institutes of Health issued two new program announcements for ME/CFS to encourage researchers to apply for funding to study ME/CFS. Link: http://bit.ly/t0exiB

Nov. 18: Laura Hillenbrand’s Unbroken marks its one-year anniversary of being on the New York Times bestseller list. The Times’ article about this achievement notes her long battle with CFS. http://nytSatEvePost-300x227i.ms/tb9LqA

Nov. 23: David Tuller, MPH, publishes a thorough and well-documented history of the CDC’s CFS research program, “A Long, Tangled Tale,” on virology blog (hosted by Dr. Vincent Racaniello). Link: http://bit.ly/teDTsG

Nov.-Dec.: CFIDS Association scientific director Dr. Suzanne Vernon was interviewed by the Saturday Evening Post for a “Medical Mailbox” feature story about CFS research. Link: http://bit.ly/sL9H3E

Dec. 1: Ed Yong, science writer and blogger for DISCOVER magazine, includes David Tuller’s article about CFS on his November list of “Science writing I’d pay to read.” Link: http://bit.ly/v8vqCR

Dec. 6: Dr. Suzanne Vernon presented a research update, “Transforming Research,” for the Rocky Mountain CFS/ME & FM Association. Link to video recording: http://bit.ly/sHJIEZ (part 1) and http://bit.ly/rrM2Z6 (part 2).

DISCOVER1Dec. 12: A study published in BMJ Open by Crawley et al. supports other studies that have shown CFS/ME to be “an important and and underappreciated cause of school absence in children aged 11-16 years.” The study attracted news coverage by several UK and U.S. outlets, including the Guardian, BBC News and U.S. News & World Report. Link:  http://bit.ly/sZKZ8t

Dec. 15: DISCOVER magazine includes CFS as #90 and #99 in its top-100 science stories of 2011. (Jan.-Feb. 2012 issue). Link: http://bit.ly/vEWGmR

Dec. 21: The UK’s Medical Research Council announced awards totaling $2.5 million (USD) for five new projects to investigate the mechanisms and underlying biological processes involved in the illness. Link: http://bit.ly/s6wdz1

Dec. 21: The Daily Beast profiled Laura Hillenbrand, the success of her books, Seabiscuit and Unbroken, and her struggle with CFS. Link: http://bit.ly/u4KHCX

Several year-end lists included CFS in their coverage, most relating to XMRV coverage and the retraction of two studies on Dec. 23 and Dec. 26 by Science and the Proceedings of the National Academy of Sciences respectively. Link to Best of Health Blog (Wall Street Journal): http://on.wsj.com/vESEeM

We will update this page with other year-end coverage.

December 2, 2011