Monthly Archives: September 2012

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 →

Posted in Commentary | Tagged , , , , , , , , , , , | 21 Comments

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

How Did They Get Here?

Posted on September 21, 2012 by Jennie Spotila

I’ve been following the work of the CFS Advisory Committee closely, and after the latest group of new members were appointed I wondered who had nominated them. I’ve done some research, and the answer might surprise you. Just getting this … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , | 32 Comments

Stick a Fork In It

Posted on September 18, 2012 by Jennie Spotila

After three years of controversy about the purported association between CFS and XMRV, and after two years of waiting for the definitive Lipkin study to be finished (full text of the paper is here), we have our answer. Stick a … Continue reading →

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

The News on XMRV

Posted on September 18, 2012 by Jennie Spotila

I am going to refrain from any comment on the XMRV study results announced today until I have had a chance to read the paper, listen to the press conference, and think about the whole thing for a few hours. … Continue reading →

Posted in Research | Tagged , , , , , , , , , | 3 Comments

Winning Contestants

Posted on September 17, 2012 by Jennie Spotila

Two contests, one that you may have heard of and one that you may not, are active right now with CFS related organizations in the running for cash. The Chase Community Giving contest on Facebook features two CFS organizations competing … Continue reading →

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Will FDA Step Up?

Posted on September 13, 2012 by Jennie Spotila

The Federal Drug Administration held a conference call today to speak with CFS patients, advocacy groups and other interested parties. This is the first time in the history of this disease that FDA has communicated with the patient community in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 25 Comments

Testimony Tips

Posted on September 11, 2012 by Jennie Spotila

The CFS Advisory Committee meeting is less than a month away (October 3 and 4), and sign ups for public comment opened last night. At every CFSAC meeting, the public is given the opportunity to offer comments, but you have … Continue reading →

Posted in Advocacy | Tagged , , , , , , , | 4 Comments

Imperfect

Posted on September 7, 2012 by Jennie Spotila

I’ve had a craptastic week. Three crash days, including one that involved a three hour “nap.” I don’t understand what triggered these crash days, but I never do. Usually, crash days take me by surprise because whatever activity I’ve been … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , | 11 Comments