On May 24, 2011, the Solve ME/CFS Initiative launched Research1st, a website/blog intended to become a “one-stop shop” for the most current and reliable information about CFS research being conducted by top-flight scientists worldwide.
Since then we’ve added 166 blog posts by members of our staff, volunteers and top experts in a variety of fields. Here is an annotated list of the top 10 most-visited posts from 2011:
#1: CFS Research Findings: We regularly update this listing of highlights from the peer-reviewed literature that add to evidence of abnormalities in multiple body systems of CFS patients.
#2: International Consensus Criteria Published for Myalgic Encephalomyelitis: On July 20, 2011, a panel of 26 physicians, researchers and teaching faculty from 13 countries, published new criteria for myalgic encephalomyelitis (ME) and recommended use of this term and criteria as a replacement for CFS. Our post about this Journal of Internal Medicine publication breaks down the definition and describes the authors’ stated next-steps. (Posted July 24, 2011 by Kim McCleary)
Related story: “ME Criteria Debate Moves to Journal Pages” by Kim McCleary (posted Jan. 24, 2012).
#3: Rituximab Trial Shows Promise: On Oct. 19, 2011, a team of researchers in Norway, led by Drs. Olav Mella and Øystein Fluge at Haukeland University Hospital, published promising results of a small phase II clinical trial of rituximab (Rituxan) in CFS patients. This study generated tremendous attention and lots of media coverage, especially in Norway. Our first post on the topic analyzes the PLoS ONE study and provides links to the media stories. Comments posted in response to this story and related ones (listed below) contain other important information about the status of Rituxan therapy in CFS. (Posted Oct. 19, 2011 by Kim McCleary)
Related stories: “Observations on Rituximab’s Early Success,” by Gordon Broderick, Ph.D.; “Rituximab Basics with Dr. John Sweetenham”; “Media Blitz by Norway’s TV2,” by Kim McCleary and “Norway’s News Attracts Global Spotlight,” by Kim McCleary.
#4: Current CFS Research: On this page, we regularly update information about ongoing and new research initiatives to understand CFS and improve patient care.
#5: Exercise Challenge Reveals Potential CFS Biomarkers: Following up on earlier work, the University of Utah team led by Kathleen Light, PhD, reported in the Journal of Internal Medicine that a sustained moderate exercise challenge of 25 minutes provoked gene expression changes that meet published criteria for a “Very Good” to “Excellent” diagnostic tool for a subgroup of CFS patients studied. The team’s work was funded, in part, by the Solve ME/CFS Initiative. (Posted June 2, 2011 by Kim McCleary)
Related stories: “Shedding Light on Biomarkers,” by Alan Light, PhD; “Kathleen Light’s Group Secures Million-Dollar NIH Award,” by Kim McCleary; and “Return On Your Investment: Kathleen Light, PhD,” from our SolveCFS print publication.
#6: I Can’t Brain Today: I’ve Got the Dumb: Research1st was created to fill a gap for current, credible information about research, but it was no surprise that this post from clinical psychologist Katrina Berne, Ph.D., was one of the most popular posts of the year. Trina writes about the real-world experience of cognitive impairment, one of the most disabling features of CFS, and how she copes with it. (Posted Aug. 9, 2011 by Katrina Berne, Ph.D.)
#7: Joint Hypermobility and CFS: Dr. Alan Pocinki, a physician at George Washington University Hospital who cares for many CFS patients, writes about a little-known and poorly understood link between CFS and joint hypermobility. The post generated lively discussion in the comments, especially after the link was shared with people whose primary diagnosis is Ehlers-Danlos syndrome. (Posted Oct. 31, 2011 by Alan C. Pocinki, M.D.)
#8: The Outs and Ins of OI: Summer heat prompted this post about the basic features of orthostatic intolerance, a very common feature of CFS for many individuals. Its diagnosis and treatment are approached differently by various physician specialties, so a comprehensive description of the problems is best done by referencing multiple perspectives, which this post attempted to do. You’ll find more valuable info in the comments. (Posted June 19, 2011 by Kim McCleary)
Related story: “Is It Anxiety or OI?,” by Kim McCleary
#9: Meeting Summary: ME/CFS State of the Knowledge Workshop: On April 7-8, 2011, the National Institutes of Health (NIH) hosted the ME/CFS State of the Knowledge Workshop, its first public meeting on the topic in 10 years. The workshop brought together subject matter experts to discuss multiple aspects of ME/CFS, including epidemiology, etiology, pathophysiology, diagnosis and treatment. Jennifer Spotila, J.D., a former member of the Association’s Board of Directors and an excellent observer and writer, participated in the meeting from home via the webcast and she produced this popular meeting summary. (Posted June 28, 2011 by Jennifer M. Spotila, J.D.)
#10: New Twists in the XMRV Story: There were multiple Research1st posts about XMRV made in 2011, but this one was the only one to land in the top-10 most visited. As the scientific developments were converging on the lack of evidence to support an association between CFS and the retrovirus known as XMRV, more sensational aspects of the story about key players was getting lots of attention. First questions arose about a figure from the original Science paper, then the senior author on that paper, Dr. Judy Mikovits, was fired from her position at Whittemore Peterson Institute (WPI) where the work originated. A civil suit was filed by WPI against Dr. Mikovits; criminal charges followed and she was briefly jailed. Now both suits are pending in Nevada courts. This post covered the twists and turns from Oct. 3 until the most recent action on Jan. 10. The evolving story and regular updates made to add new news coverage undoubtedly contributed to its place as the 10th most popular post on Research1st. (Posted first on Oct. 5, 2011; reposted with new information on Nov. 19, 2011 and regularly updated, most recently on Jan. 11, 2012 by Kim McCleary)
January 21, 2012