CFIDS Assoc: NY Times and Wall St. Journal take a deeper look at CFS

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March 5, 2011

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IN THE NEWS

Major media coverage of the challenge of defining CFS (and how that impacts research findings) and its historical roots appears in today's New York Times and Wall Street Journal.

Tuller has covered CFS for several years, digging deeper than surface-level story lines that appear in many media outlets. His academic training in public health and his experience as a journalist in San Francisco during the early years of the AIDS crisis are reflected in his writing about CFS and other topics. His latest article for the New York Times about CFS, "Troubles with CFS Start With Defining It," examines the case definition and how the patients you select color the outcomes of research. It is online now and will run in Tuesday, March 8, newspaper.

Amy Dockser-Marcus has become the journalist of record for breaking news about XMRV and its association with CFS since the first study was published in October 2009. In today's Wall Street Journal, she takes a long and deep look at CFS through the eyes of Bell, MD, and some of his long-time patients in Lyndonville, NY. The online package, "The Puzzle of Chronic Fatigue Syndrome," includes a video of Dr. Bell.

In the Wall Street Journal's "Saturday Essay" feature, Leonard , PhD, recounts the history of fatiguing illnesses and clusters of CFS-like illnesses over the decades. His essay, "An Illness That's Hard to Live With - And Define," is a companion to Dockser-Marcus's article.

Earlier this week journalist Falk shared his journey with CFS with readers of the Huffington Post in a blog titled, "Chronic Fatigue Syndrome & Psychotherapy." Don't be fooled by the title; it's a powerfully honest disclosure about why he has hidden his illness from even the closest friends. It has been tweeted and otherwise shared electronically thousands of times in the past few days.

ON THE SCIENCE FRONT

The Conference on Retroviruses & Opportunistic Infections (CROI) is one of the world's largest annual gatherings of virologists and retrovirologists. Our scientific director, Suzanne D. Vernon, PhD, summarizes the news about XMRV that was presented at this year's meeting. Her summary, "On the Origins of XMRV" includes links to the conference webcast and abstracts of presentations.

In response to the Lancet's February 18 publication of outcomes of the PACE Trial in the United Kingdom that generated a raft of injurious media coverage, CEO Kim McCleary submitted this letter to the journal's editor.

MORE NEWS TO COME

Our regular monthly issue of CFIDSLink will be distributed in the coming week, so watch your inbox for more updates and news.

Our Mission:

For CFS to be widely understood, diagnosable,

curable and preventable. Our Strategy:

To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. Our Core Values:

To lead with integrity, innovation and purpose.

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