Monthly Archives: September 2012

Mental Illness Meme

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

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?

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

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

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

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?

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

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

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