Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 7, 2010.
You can view the page at http://www.forums.aboutmecfs.org/content.php?242-What-s-Next-for-XMRV-cfs
As of last week Dr. Enlander was still collecting samples- needed the final 4. He is collaborating with Dr. Alter, and as you said, it will be tested by 5 different labs. I'm in it.
which study is the 1000 person Alter study?
I don't have any of Alter's next studies up there...........hmmm
Great to hear that the Enlander study if proceeding.
Not forgetting the uk 50 study!!
Maybe....the preliminary results were reported at the XMRV Workshop? or is there another one?
There is an ongoing UK WPI study, with the final draws scheduled for early next year. The Ashford 50 were the first tranche of that study. The volcanic ash problems interrupted the draw schedule.
Thanks for bringing it all together at this time Cort and great reading.
Thanks for compiling the list. Just one thought. To put into context a finding of XMRV/MLV or failure to find XMRV/MLV, would it be useful to post the percentages of positives in both controls and patients. Zero/zero raises questions about the ability of a lab to find anything in a real patient (not just a spiked sample). Just my two cents.
Thanks Jace, Good idea Shane.
The Association has compiled a table on the seven peer reviewed articles published so far:
and a table comparing the CFS-related studies presented at the XMRV Workshop:
Both tables include the CFS criteria used, detection method used, number of patients and controls who were positive, etc.
Jennie - just the person I was thinking of . The CAA's Glaxo Smith Kline project is so intriguing. You've got a great set of patients... I assume that you're trying to culture the virus.......but it's kind of flying under the radar....what is going on with that project? How far along are they? Can you say?......(we'll keep it to ourselves )....
Thanks. I shared the workshop summary (and chart) with my primary care physician this week. I also gave him a copy of Dr. Komaroff's presentation.
Sorry, Cort! I'm bound by confidentiality agreements. :innocent1:
Cort, would it be possible to start a list of studies (with their locations) that are looking for participants. I live near a big city (Los Angeles) and don't have a clue if there are any researchers who would like to study a few drops of my blood. And I would be happy to have blood drawn and sent to a study at any location, if I knew where to send it.
That's a good question....I actually assume (big of me!) that if someone was having trouble getting samples they might contact us. Then, again they might not know of us.
I know we overwhelmed Montoya, OFFER and Edmonton when we posted that their studies were open - they asked us to take down those posts. I've also heard of other non XMRV ME/CFS studies that have trouble getting filled.
If this anyone who needs blood we'd love to help out.
This is the kind of thing - providing opportunities to participate - that the Forums can be very helpful with, that's for sure.
My understanding was that a Swedish Study was being done, supported by one of the UK groups. I thought it was due out in the summer
Just heard from Norwegian friends (Norway ME) positive tests coming in for XMRV related viruses so far (XMRV must be cultered so takes longer) They are monitoring.
jolicoeur in montreal might still be looking for canadian participants who have tested +
You can also try a Google Site Search
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