Category Archives: Commentary

No News is No News

Posted on March 4, 2013 by Jennie Spotila

The ME/CFS advocacy community has been hopping recently, with participation in the FDA meeting on Ampligen, my effort with Public Citizen, and Bob Miller’s hunger strike. We’ve been anticipating some sort of response from HHS, especially in the wake of … Continue reading →

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Ampligen is Not AZT

Posted on February 11, 2013 by Jennie Spotila

In recent weeks, some ME/CFS advocates have been calling for NIH to conduct a clinical trial of Ampligen based on the reasoning that NIH conducted trials of AZT during the early years of the AIDS crisis. Unfortunately, this analogy does … Continue reading →

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On the Shelf

Posted on February 7, 2013 by Jennie Spotila

I recently read Spillover by David Quammen, a book about human diseases that originate in animals. ME/CFS is not mentioned in the book, but a passage about the origin of HIV struck very close to home. Quammen describes how HIV … Continue reading →

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Highest Priority, Part Two

Posted on January 30, 2013 by Jennie Spotila

When I posted the other day about the CFS Advisory Committee’s list of High Priority Recommendations (pdf link), I said that I had done some digging and that what I found wasn’t pretty. To be blunt, what I found is … Continue reading →

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Highest Priority, Part One

Posted on January 28, 2013 by Jennie Spotila

Over the years, the CFS Advisory Committee has made dozens and dozens of recommendations to the Secretary for Health and Human Services. This month, the Committee posted a document entitled “High Priority Recommendations from CFSAC, January 2012” (pdf link) which … 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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Puzzle Pieces

Posted on October 30, 2012 by Jennie Spotila

Let’s play a game. Imagine you have a large puzzle that makes an Impressionist picture of a colorful cottage-style garden. You can put it together as long as you have the picture on the box. First you assemble the lower … Continue reading →

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This. Is. Why.

Posted on October 17, 2012 by Jennie Spotila

I’m on the verge of tearing my hair out, and I suspect I’m not the only one. The American Academy of Family Physicians published a review article about CFS (paywall) on Monday, accompanied by a patient information sheet. From the … 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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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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