I'm in the Georgetown CFS Study, and so is my husband Kenny (he's a healthy control subject)! The study is called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."
I got verbal confirmation last week of our actual study dates (i.e., when they want us to be at the hospital), but I wanted to wait until I received written confirmation before I shouted about it on my blog. The confirmation came in late this afternoon. We'll be flying to Washington, DC in November!
I've been hoping to get into this study since August 1 (see my August 1, August 18, September 10, September 22, and September 27 posts for background).
This post is relatively short because I'm exhausted and brain fog is closing in, but I just had to post this update.
If you're keeping up with my flu shot update, you'll be happy to know that I still haven't had any sort of major crash. I'm exhausted, but still ok.
Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore right and left lymph nodes in neck, low-grade fever 99.3.
Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
P.S. If you know any healthy people who live near DC or are willing to travel there, please tell them about this research. The research coordinators are in need of more healthy volunteers. Volunteers will be compensated $400. Click on the study's name above for the official research description and contact info.
6 comments:
Congratulations! And well done for avoiding the crash so far.
Well done both of you for taking part I will be interested to here how things go.
Congratulations on getting into the study! I know how important it was to you, and I appreciate your participation for the rest of us! Jamie and I are still waiting for our phone interviews for the UIC study.
Also glad to hear you haven't crashed big-time from the flu shot - hope that continues.
I actually started Tamiflu yesterday, and I think it's helping with this severe crash I've been stuck in for 3 weeks (probably triggered by exposure to the flu) - I'll post about it in a few days, once I'm sure how I've responded.
Hope you have a good, relaxing weekend.
Sue
Congrats...that's excellent news. Let us know what it's like....I've always been curious about volunteering for a study.
Great news about you getting in! I'm not so sure about your husband. In light of retrovirus infection (going back to the summary of De Freitas' work in 1991), exposed controls (e.g. roommates and spouses) had a very high rate of infection without symptoms. Controls ought to be people who have never been exposed to ME/CFS, if that is possible these days given how many of us have it.
Thanks, everyone! I'll be sure to write about our experiences.
Good point, Janis. I hadn't thought of that. I suppose we'll leave things up to the Georgetown people. I suspect, however, that for the most part the only "healthy" people willing to volunteer for an unnecessary lumbar puncture are loved-ones of people with ME/CFS.
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