Research1st: the CFIDS Association’s CFS Research Info Site

Posted by Cort Johnson

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5690-Research1st-header5.jpgThe CFIDS Association of America has opened a new ME/CFS Research Information Center….whoops it’s actually still a “CFS” (c’mon you guys! :)) site called Research1st that will be a ‘one-stop shop’ for information on the latest research news. Let’s take a look at it.

Research Initiatives – The Current Research section has a “New Research Initiatives’ section – a easy way to track the who’s doing what where…such as the CAA’s $600,000 Request for Applications (RFA) in April.

The CAA’s RFA – PR did not cover the RFA and now is a good time. That the CAA, after what must have been two or three of the most financially challenging years in its existence, was able to raise $600,000 more dollars for ME/CFS research, is encouraging.

An “A” for Effectiveness – The studies from the 2008 Initiative are winding up, papers are being written and NIH grants applied for. With at least three of its 2008 grant recipients (Light/Shungu/Broderick) going on to get rare NIH grants the 2008 initiative easily gets an “A” for effectiveness, and, of course, we may very well hear more from that group.

The last RFA’s success, along with the startling impact of the WPI’s XMRV research, demonstrates how small research funders like the CAA, WPI, MERUK, the ME Association, the Montoya Initiative at Stanford, Dr. Peterson’s n new Cimarron Foundation, and others, can, through innovative projects, make a difference. ME/CFS research would look very different indeed without the input of these small groups. Now onto the CAA’s other big initiative, the BioBank

BioBank – Almost 270 samples from patients who met ‘stringent enrollment criteria’ have been collected and, most importantly ‘testing’ has begun; ie it appears that investigators have begun to use those samples in their studies.

A Research Accelerator par Excellence – The ability to tap samples multiple times makes the Biobank potentially a supreme research accelerator. Say, you have one study that finds high cytokine levels after exercise……and another researcher who thinks, aha!, I’ll bet this immune cascade is triggered by ‘X’…… If he has access to BioBank samples he doesn’t have to find patients, get them on the bike and get their blood and test them..a process that takes years…nor does he need $500,000 or $1,000,000 to do all…he simply needs to test the samples.

Say he’s right and his theory is proven correct; ‘X ‘ does appear to trigger this cascade and he has an idea what triggers ‘X’. The next step, of course, is simply to test again….You can see how easily it might be using the BioBank to collapse 5 or 10 years of work into one or two years doing this….

The Research Findings section has some nice short overviews of recent research. The CAA has always tracked media stories well and the CFS Media page will be a good resource for easily checking them out. The most interesting part of the site is a blog you can subscribe to which will provide “picks”, three times a month, ‘from experts for resources, articles, books and websites that inform about trends in science, medicine and CFS.’

Linking and Unlinking – the Links section – Anyone who has a website is interested in the main drivers of traffic on the internet – links. For whatever reason the CAA has never shared links easily and has been reluctant (to put it mildly) to provide links to articles on patient support sites such as PR and that trend is continuing.

Phoenix Rising is not in the ‘Useful links’ section but we’re not alone; the only ME/CFS groups to make it are the WPI, OFFER and the ME Association’s Ramsey’s Research Fund. The CAA appears to have a policy of providing links to articles only produced by professional organizations or figures such as Prohealth, Dr. Racaniello, etc.

Dr. Vernon’s comment to the first blog, was somewhat emblematic of the CAA’s stance in this area.

For years stakeholders have been asking for reliable and quality information on CFS and related topics. Now we are the first to bring it on

Sigh…obviously Phoenix Rising would disagree :).

Anyway, looking at what IS there the Links sections does have some interesting links. The NIH estimates of Funding for Disorders every year, is a particularly good one that everyone should have, as is the link to Clinical Trials on CFS.

Conclusion – The new site highlights how much CAA has changed over the last couple of years; it is a Research1st group now. Is this site a one stop shop for research information? No, but it does provide nicely organized sections and a new commitment to information dissemination that will undoubtedly help people with ME/CFS better understand the research done on their behalf.

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