I had the opportunity to speak with one of the researchers who attended the Cleveland Clinic conference a short while back. Since the landmark study appeared in Science last month, several groups have been in a race to replicate the findings of Dr. Judy Mikovits - preliminary results are beginning to come in, while other researchers are waiting for their virus samples to arrive. There is now reasonable certainty that XMRV is the causal agent of CFS/ME, as opposed to probable grounds at the time of publication. It is hoped that by the middle of next year XMRV will beyond a reasonable doubt be shown to be the causal agent of ME/CFS.
XMRV seems to follow Koch's postualtes, except for the first one: "The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy animals." The third "The cultured microorganism should cause disease when introduced into a healthy organism", and fourth "The microorganism must be reisolated from the inoculated, diseased experimental host and identified as being identical to the original specified causal agent." has yet to be shown. However, the main criticism of Koch's postulates is that it does not account for asymptomatic infections.
It is worth noting that there was considerable attention paid to possible therapeutic agents for ME/CFS. This is still very much of a gray area at this time - and it will be several months before it is known which existing HIV drugs will work against XMRV - only a couple Reverse Transcriptase inhibitors, and Raltegravir have shown early promising results. This in itself has already led to a few doctors prescribing AZT off-label to ME/CFS patients outside of clinical trials, in addition to a handful of individuals purchasing the drug online from internet pharmacies - however AZT IS NOT a drug that should be taken without medical supervision under any circumstance.
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Thank you, Dr. Luckett. I have been wondering what went on at the meeting in Cleveland, and this is the first news I've seen on replication of the WPI findings.
ReplyDeleteFascinating developments.
ReplyDeleteThank you for this report. I'm still in shock. I've been very wary of concluding that XMRV is a/the causal agent for ME/CFS. I also expected the researchers at this conference to focus on other aspects of XMRV, given the lack of respect ME/CFS generally receives. I hope the researcher you spoke to accurately reflected the views of most if not all those present, not just his or hers.
ReplyDeleteAre studies being done on fibromyalgia?
ReplyDeleteI know there was a small study where 12 out of 20 (60%) of fibro patients tested positive. I am waiting to hear if they did any further testing -- because intially, the percentage of CFS patients testing positive was lower until different types of tests were factored in, too...
So, where's this going for fibromyalgia patients? Are we left in the dust? I am glad for this research but nobody has clarified about the OTHER illnesses that might be linked!
Please comment. It would be so helpful!
Heather Jacoby
Is the person you spoke with who attended the Cleveland meeting also a member of the new HHS task force formed to replicate the WPI study?
ReplyDeleteLow dose naltrexone works better than HAART for HIV/AIDS with far fever side effects (LDN rarely has any side effects at all). It's also known to work well for many people with CFS/ME.
ReplyDeleteThank you for this. Great blog btw
ReplyDeleteMaija Haavisto, youre way out of your gourd.
ReplyDeleteThis is very nice to hear. We keep hearing rumors the other way around. I understand we can expect some people not to replicate given flawed cohorts; I'm just very glad someone else is.
ReplyDeleteWonderful blog Dr. Luckett. The CFS patient population is eager for news about replication studies. And we are equally eager to understand the science behind it. Thank you for making this accessible and understandable.
ReplyDeleteAll my thanks Dr. Luckett. What a wonderful share of inside information you are providing. This is the first thing I find out about Cleveland Meeting.
ReplyDeleteI think think the input of Maija Haavisto is interesting here. Maybe the combination of Raltegravir & Low Dose Naltrexone will be the best XMRV therapy in the next few years (considering how promising LDN is in combination with HAART therapy on the other retrovirus, HIV. See: http://www.lowdosenaltrexone.org/ldn_and_hiv.htm )
Gisli Iceland.
I can definitely see where the rumors are coming from: The CDC doesn't want to be proven wrong, and they might find themselves standing very much alone this time.
ReplyDeleteLet's wait for publications!
ReplyDeleteKnowing is better than believing
Other researchers outside the CDC are also finding they're not replicating the XMRV results, one was just reported two days ago from Germany.
ReplyDeleteAnd whatever happened to Elaine Defreitas' retrovirus? If that was unfairly dismissed or follow-up studies were corrupted 15 years ago, how come they aren't being reviewed with the same seriousness as XMRV?
Someone please answer that question?
Hello Dr. Luckett,
ReplyDeleteThank you for blogging about this.
I just read this post, and I see it's from Nov, 2009.
Do you know, or could you find out anything about how the patients you mentioned in the paragraph below are doing?
That would be very helpful.
"This is still very much of a gray area at this time - and it will be several months before it is known which existing HIV drugs will work against XMRV - only a couple Reverse Transcriptase inhibitors, and Raltegravir have shown early promising results. This in itself has already led to a few doctors prescribing AZT off-label to ME/CFS patients outside of clinical trials, in addition to a handful of individuals purchasing the drug online from internet pharmacies - however AZT IS NOT a drug that should be taken without medical supervision under any circumstance."