By Kyle Kenney
Science Communications Intern
Here are some of the people and CFS-related stories that have attracted news coverage so far in 2012. We”ve provided links so you can catch up on coverage you may have missed.
Jan. 2: A new Open Salon blog post by Llewellyn King, host of the “White House Chronicle,” a weekly news and public affairs program shown on 200 public broadcast stations. He has been covering CFS for 3 years. Link: http://bit.ly/v8ZRbZ
Jan. 12: Dr. Vincent Racaniello, Columbia University professor, host of “This Week in Virology” and blogger at virology blog writes for DISCOVER magazine”"s Crux blog about CFS and AIDS. Link: http://bit.ly/y1lK9P
Feb. 7: David Tuller“s article, “Fallout From Fatigue Syndrome Retraction Is Wide,” on the New York Times website recaps the aftermath of an XMRV study that left many hopeful, then doubtful. Link: http://nyti.ms/LHc92x
Feb. 12: The Chicago Sun-Times publishes a UK film critic”s review of the documentary, “Voices from the Shadows.” The critic, Scott Jordan Harris, has ME himself and declares, ”It”s my film of the year. It”ll be my film of the decade.” Voices won a prize at the 2011 Mill Valley Film Festival but hasn”t yet attracted a distribution deal. Link: http://bit.ly/xHAVIS
Feb. 14: The U.S. Senate holds a hearing on chronic pain as a follow-up to the 2011 report issued by the Institute of Medicine that highlights its toll on the individual and compounded cost to the nation. Testimony on behalf of the CFIDS Association of America was submitted by Jennifer Spotila and delivered by Christin Veasley on behalf of the Chronic Pain Research Alliance, of which the Association is a member. American News Report provided coverage. Link: http://bit.ly/xjVp85
Feb. 19: Christopher Snell edited a five-chapter open access book about the future of CFS research. From his intro: “A common theme in [this book] is CFS as a multisystem disease with the possibility of more than one cause and influenced by a variety of interacting factors. Further, [it] acknowledge[s] the reality of CFS for persons with this disease and the importance of finding causes, treatments and ultimately a cure.” Free download at InTech: http://bit.ly/xtYkQI
Feb. 23: The CFIDS Association issued a press release through PRNewswire to announce the Research Institute Without Walls and a major gift from Laura Hillenbrand. The release was sent to top-tier media and medical, health, science and research-related media outlets. Link: http://bit.ly/wPspVF
Feb. 23: Amy Dockser-Marcus at the Wall Street Journal reports on the Association”s Research Institute Without Walls and one the projects under it, a drug repurposing study led by Biovista. Link: http://on.wsj.com/xIwUCO More news coverage of the announcement: http://bit.ly/riww-media
Mar. 1: CEO Kim McCleary and scientific director Suzanne Vernon, PhD, were guests on Mar. 1 on the “Charlotte Talks” radio program, heard on NPR stations in the local area and now archived on WFAE”s website. Link: http://bit.ly/yPp7jS
Mar. 1: The FITNET trial of internet-based cognitive behavioral therapy in teens as published in The Lancet, generated headlines and plenty of commentary in online patient communities. Media coverage by BBC, , WebMD, MedPageToday and a slew of other international, regional and local outlets was more restrained than last year”s coverage of the PACE study outcomes.
Mar. 12: Publisher”s Weekly reviews Roger King“s autobiographical novel, Love and Fatigue in America. This is King”s fourth novel; it describes the onset of CFS and the eight years following his diagnosis. Link: http://bit.ly/HU37AX
Mar. 23: Medscape and the U.S. Centers for Disease Control & Prevention partnered to release a new continuing medical education unit titled, “CFS: The Challenges in Primary Care.” Link: http://www.medscape.org/viewarticle/759095
Mar. 30: The Guardian, a UK daily newspaper, published an article about severe cases of ME that have resulted in death. The author, Scott Jordan Harris, disclosed he has ME in a review of the ME documentary “Voices From the Shadows.” Link: http://bit.ly/HAsMLJ
May: Claudia Goodell, co-founder of the event “24 Hours in the Enchanted Forest: A Race to SolveCFS,” is recognized for another of her many talents — her fine art. She is profiled on EBSQ”s blog: http://bit.ly/LWLwsP
May 8: UK Mail journalist Sonia Poulton helps put to rest myths about ME that still pervade. Link: http://bit.ly/MANguY
May 11: Amherst News reporter Steve Pfarrar interviews Roger King about this life with CFS and novel, Love and Fatigue in America. Link: http://bit.ly/J4L4cH
May 12: Maryland mom Melinda Malott is featured in the Herald-Mail newspaper; her mostly homebound life with CFS is a centerpiece of the story. Link: http://bit.ly/Jo1DCk
May 13: Llewellyn King writes about the connection between international CFS/ME/CFIDS awareness day and Florence Nightingale for the White House Chronicle blog. Link: http://bit.ly/KjXnDi
May 14: The American Society of Microbiology awarded its 2012 Public Communications Award to Jon Cohen and Martin Enserink of Science magazine for their article, “False Positive,” published in Oct. 2011. “Cohen and Enserink spoke with scientists and CFS patients around the world for four months, attended meetings in the US and Europeto report on all sides of the controversy. Their work resulted in an 8-page story in which Cohen and Enserink carefully chronicled how the XMRV hypothesis arose, how it was embraced by patients and media, and eventually disproved by research.” Link to ASM”s press release: http://bit.ly/JhGgD8
May 27: 69 years to the day that the bomber carrying Louis Zamperini crashed into the Pacific Ocean, his story, and how it intersects with Laura Hillenbrand”s story, was told on “CBS Sunday Morning.” Louis called Laura “his inspiration” for her courageous battle with CFS. Link: http://www.cbsnews.com/video/watch/?id=740986n
June 8: Hannah Booth at The Guardian tells the story of Paul Anderson who committed suicide after struggling with ME for eight years through the eyes of his wife, Jill. Paul became ill in 1995 and tried twice before to end his life. On the third try, Jill respected his wishes and didn”t call medics. She was charged with manslaughter and went on trial in 2005 but was found not guilty. Link: http://bit.ly/LJxAoa
June 10: Exquisite embroidery work landed Pauline Easby a job with exclusive London design house Fitriani. She turned to embroidery after being diagnosed with CFS. Easby”s story was shared by readers of the Sunday Sun by Nicola Weatherall. Link: http://bit.ly/N2Yfs3
June 11: Michelle Aldredge at Gwarlingo posts a great review of Love and Fatigue in America, interview with author Roger King and photo essay about his life. Link: http://bit.ly/NaZFSY
June 15: The decision by the Reno (NV) district attorney to drop criminal charges against researcher Judy Mikovits, Ph.D., generates coverage of the CFS-related scandal by ScienceInsider (Jon Cohen), New York Times (David Tuller), Chicago Tribune (Trine Tsouderos) and MedPage Today (Cole Petrochko). Mikovits made headlines around the world as senior author on the 2009 Science paper that linked CFS to XMRV. That paper was retracted by Scienceafter 30-some studies failed to uphold the observation. Mikovits was fired by employer Whittemore Peterson Institute in Oct. 2011 and criminal and civil charges were pursued when Institute property went missing after her dismissal. The civil case is still pending.
June 16: Former Olympian Katrina Radke, a decorated swimmer who came down with mononucleosis and then CFS after competing in the Seoul Olympics in 1988, delivered the commencement speech at her high school alma mater, Germantown Academy. Radke has just released a book, Be Your Best Without the Stress, about her experiences. Local news outlets covered her commencement address: The Times Herald (Denny Dryoff) and the Montgomery News (Nick Luele).
June 18: An essay by photographer Sarah Allegra is posted to Scholars & Rogues describing her life with CFS, her desire for answers and her efforts to support CFS research. Link: http://bit.ly/NUJ3Uz
June 21: Roger King was a guest on New Hampshire Public Radio”s “Word of Mouth” program, talking about his life with CFS and his latest novel, Love and Fatigue in America. Link: http://bit.ly/M1lV5s
June 25: Family Physician News reported on the outcomes of a 154-patient trial of qigong in CFS-like illness conducted in China. The results were promising, showing reduced symptoms after a five-week regimen. Subjects met CDC criteria for CFS but were not evaluated by a physician prior to enrollement to ascertain the diagnosis. Link: http://bit.ly/KKBWH8
July 1: FasterCures is a disease research “action tank” founded by the Milken Institute to save lives by saving time in the research, discovery and development of new treatments for deadly and debilitating diseases. FasterCures featured the CFIDS Association”s Research Institute Without Walls in its July “Innovator Spotlight,” reaching FasterCures” diverse and influential network of medical research foundations, biotech and pharmaceutical companies, academic researchers, policymakers and venture philanthropists. Link: http://bit.ly/FC-spotlight
July 4: Boston University School of Medicine student Jacob Walker writes about CFS and the need for patients to advocate for research in a post to In-Training, the online newspaper of the medical student community. Link: http://bit.ly/N4SPlB
July 11: Reuters reported that the FDA has agreed to accept new analyses of late-stage drug therapy data for Ampligen from manufacturer Hemispherx in lieu of new clinical trial data it sought from the company three years ago. Hemispherx indicated that it will submit the data in the third quarter of 2012. Link: http://reut.rs/O8mPI6 John George at the Philadelphia Business Journal filed a similar report. Link: http://bit.ly/Ni4ble
July 12: A new clinic for chronic complex conditions will open this fall in Vancouver with funding from the Ministry of Health of British Columbia. The BC Women”s Hospital announced that Dr. Alison Bested will serve as medical director. Vancouver Sun writer Pamela Fayerman covered the announcement, including reaction of local patients with ME/CFS and Lyme disease, two of the conditions the clinic will address. Link: http://bit.ly/P3pE25
July 12: Claire Gunney, a former marathon kayaker who now has CFS, will carry the Olympic torch through Redhill, England, on its way to London. The Surrey Mirror carried the story. Link: http://bit.ly/OB9hWF
July 18: Publication of the autobiographical novel Love and Fatigue in America prompted Jill Kaufman”s interview with author Roger King on New England Public Radio as part of the summer fiction series. They talk about the book and CFS. Link: http://bit.ly/MWnNIk
July 23: In the latest twist in the XMRV story, Dr. Judy Mikovits gave her first interview since being dismissed from and sued by the Whittemore Peterson Institute to Casey Schwartz of The Daily Beast. The lengthy article contains some new disclosures by Dr. Mikovits about contamination concerns that she firmly refuted until now. Link: http://bit.ly/M5LTWk
July 25: Salon”s advice columnist, Cary Tennis, responds to a question from a person with CFS about how to educate people about their illness when faced with flippant cure recommendations. Tennis” answer focuses on CBT but readers” comments offer other recommendations. Link: http://bit.ly/M8yI79
Aug. 1: The 2012 Saroyan Writing Prize was awarded by Stanford University to Elisabeth Tova Bailey for her book The Sound of a Wild Snail Eating, written while she was bedridden with CFS. This is the latest of several awards earned by Tova Bailey for her story of “survival and resilience.” Link: http://bit.ly/Rhf3m9
Aug. 5: BlogTalkRadio”s “In Short Order” program devoted two hours to CFS. Host Sue Vogan talked with Dr. Andreas Kogelnik, Dr. Kenneth Friedman, Marla Silverman and Lori Chapo-Koger, R.N. about research, treatment and patient advocacy. Link: http://bit.ly/O0hw0B.
Aug. 8: New York Times reporter Denise Grady reports the Aug. 3 death of William C. Reeves, M.D., who led the U.S. Centers for Disease Control & Prevention”s CFS research program from 1992 until 2010. Dr. Reeves was a controversial figure during this period, and the article traces his high-profile career. Link: http://nyti.ms/OOnqAT
Aug. 14: Hemispherx Biopharma, manufacturer of Ampligen, announced that the FDA has accepted its revised application as complete, according to RTT News. A decision on marketing approval for Ampligen as a treatment for CFS is expected by Feb. 2, 2013, according to regulations that guide FDA. Link: http://bit.ly/PZZHwg
Aug. 16: Cycling Central reports that former world champion cyclist Thor Hoshovd has quit this season after cancelling out of the Tour de France and Olympics due to a CFS-like illness that followed an infection suffered earlier this year. Link: http://bit.ly/NITtop
Aug. 19: Two Baptist pastors, one in Alaska the other in Barbados, meet for the first time after supporting one another through their shared diagnoses of CFS. Mary Beth Smetzer at the Fairbanks Daily News-Miner shares their story. Link: http://bit.ly/SbTzri
Aug. 21: Courtney and Robert Miller attended President Obama”s speech at a community college near Reno. Courtney held up a sign to express her thanks for the letter she had received from the president and for his assurance (given through a top staffer) that President Obama intended to raise the priority CFS is given by the federal health agencies. The Reno Gazette-Journal covered the story. Link: http://on.rgj.com/PwDTgk
Aug. 26: Extending local coverage of the Miller”s letter from President Obama, Reno NBC affiliate KRNV interviewed the family at their home, sharing their story and hopes for more research. Link: http://bit.ly/PmwdKz
Sept. 19: Journalist Sonia Poulton started covering ME in May to support awareness activities. In this post to her blog at the Daily Mail (U.K.), she writes about the response she”s received from people with ME and how important it is for the public to understand that they”re seriously ill. Link: http://bit.ly/PJGguB
Staff will update this listing periodically throughout the year with new news coverage.