Research1st Turns One! The First Year’s Top 10 Posts

1st-anniversary-R1st-300x258By Kyle Kenney
Science Communications Intern

Today, May 24, 2012, Research1st, the Solve ME/CFS Initiative ’s website/blog on the latest CFS research, turns one! Research1st was born as the hub of anything and everything concerning CFS research, and today the site is home to 204 posts from Association staff members, volunteers and experts in a number of scientific and medical fields.

We’ve collected a list of Research1st‘s most popular posts from its first year:

nordoc-300x296#1: 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. This story was the most popular in terms of visits and it was the fourth most popular in terms of comments posted by readers. (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

#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. The Research1st post about this Journal of Internal Medicine publication breaks down the definition and describes the authors’ stated next-steps. This post generated the second highest number of comments from readers. (Posted July 24, 2011 by Kim McCleary)

Related story: “ME Criteria Debate Moves to Journal Pages” by Kim McCleary (posted Jan. 24, 2012)

#3: Dysfunction Junction: The ANS and CFS: Dr. Alan Pocinki of George Washington University Hospital narrows in on how the autonomic nervous system (ANS) affects patients suffering from CFS, comparing a healthy person’s sympathetic and parasympathetic responses to those of someone with CFS. Dr. Pocinki’s analysis on the ANS suggests “that many CFS patients may have significant autonomic dysfunction and be unaware of it.” This post generated the highest number of comments from Research1st readers. It’s also the only 2012 post to make it into the top 10 for the first year! (Posted March 5, 2012)
#4: 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.”

Trina-Berne-236x300#5: 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 as measured by visits and the number of readers’ comments it generated (number 3 for the first 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)

Related stories: “On Demand: “Cognition & CFS: What Do We Know?” & Other Resources,” by Kim McCleary

#6: Joint Hypermobility and CFS: Dr. Alan Pocinki 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)

#7: 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, the number of which made it the fifth most commented on story of the first year. (Posted June 19, 2011 by Kim McCleary)

Related story: “Is It Anxiety or OI?,”by Kim McCleary

Gordon-Broderick-200x300#8: Observations on Rituximab’s Early Success: While the results of the Rituximab study are certainly promising, Dr. Gordon Broderick, Associate Professor at the University of ALberta, is not surprised. “Abnormal B cell activity has long been suspected as playing a key role in CFS,” says Dr. Broderick, as he goes on to explain the role of the B cell in CFS research. (Posted October 21, 2011) Link: See links to related stories under #1, above.

#9: Rituximab Basics with Dr. John Sweetenham: After the October 19, 2011 Rituximab study in Norway went public, it seemed that at last there was a drug that made a meaningful impact on CFS patients. In this post we ask Dr. John Sweetenham questions about the Norwegian study and the drug Rituximab that became an interest of many people in the CFS community. (Posted October 30, 2011)

See links to related stories under #1, above.

#10. Giardia linked to IBS and chronic fatigue: In 2004 a peaceful Norwegian town fell vicgiardiatim to a parasite known as Giardia lamblia. Seven years later researchers discovered that almost half of the victims of the Giardia outbreak were suffering from both Irritable Bowel Syndrome (IBS) and CFS. The 2011 study further indicates that CFS may be linked to “several infectious agents.” (Posted September 13, 2011)

Related story: “Acute Infection, Chronic Consequences” by Dr. Suzanne Vernon

Which stories from our first year did you value most?

Kyle Kenney served as a science communications intern in the summer of 2012. Kyle is a industrial engineering major at the Georgia Institute of Technology.

May 24, 2012