Tag Archives: researchers

Vincent Departs

Posted on April 19, 2013 by Jennie Spotila

Eagle-eyed Tom Kindlon posted on Twitter last night that Dr. Ann Vincent’s name has been removed from the CFS Advisory Committee roster. It appears that Dr. Vincent has resigned, although I have no information on when or why she may … Continue reading →

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Evidence Based at NIH

Posted on March 21, 2013 by Jennie Spotila

Last year, NIH said it was undertaking a process to identify a research case definition for ME/CFS, but individuals like me were unable to get any additional information about what NIH intended. Now additional information has been made public in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 13 Comments

Research Recommendations

Posted on March 12, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations See Part Three – Care and Services Recommendations See Part Four – Education and Training Recommendations Appropriately enough, the CSFAC has made more recommendations on research than … Continue reading →

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Comparing Exercise Advice

Posted on January 18, 2013 by Jennie Spotila

Exercise is an issue for every CFS patient, and there is no shortage of advice on whether and how to do it. On January 14th, the CDC hosted a conference call as part of its Patient Centered Outreach and Communication … Continue reading →

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NIH Collaboration

Posted on December 17, 2012 by Jennie Spotila

The news didn’t make much of a splash, but NIH recently issued a funding opportunity announcement that could benefit people with CFS. This purpose of this funding opportunity is to support “collaborative translational research projects” aimed at turning basic discoveries … Continue reading →

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Insufficient Data

Posted on December 4, 2012 by Jennie Spotila

One of the most frustrating aspects of coping with CFS is the lack of definitive data. A PubMed search for “chronic fatigue syndrome” yields 4,877 results (as of today), but as a patient on the front lines I have to … Continue reading →

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Another CFSAC Done Gone

Posted on October 6, 2012 by Jennie Spotila

The CFS Advisory Committee held its second meeting of the year on October 3-4, 2012. Last time, I organized my summary around the good, the bad, and the WTF moments. This time, I am organizing around the discussion themes. Overall, … Continue reading →

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Metrics

Posted on October 3, 2012 by Jennie Spotila

I delivered the following testimony via telephone to the CFS Advisory Committee on October 3, 2012. I would like to note something that Dr. Nancy Lee said today: “Nothing about me without me.” That’s what we’re asking for. FDA is … Continue reading →

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Mental Illness Meme

Posted on September 25, 2012 by Jennie Spotila

When it comes to press coverage of CFS and XMRV, there is a pervasive mental illness meme that must be addressed. It goes something like this: XMRV/viruses do not cause ME/CFS. Therefore, it could be a mental illness. Patients strongly … Continue reading →

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Those Lipkin Samples

Posted on September 22, 2012 by Jennie Spotila

You may recall from my post on the Lipkin study that Dr. Lipkin talked about the sample cohort at the press conference on September 18th. Dr. Lipkin said that the samples would be available for other investigators and that applications … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 4 Comments