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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Looking forward to when we can see those video's. I hope we can see hers. That would be really something - it would fit Peterson's findings....it would be scary, for sure, but it sure would help.....
Based on what I saw/heard, I can't agree with your assessment here. Mikovits was not saying antibody tests were more appropriate, but that PCR alone was not enough and a number of complementary techniques were necessary. And the general discussion wasn't 'PCR-centric'; they were also discussing serological assays. Stoye argued that the gold standard test would have to be an antibody or PCR test. They were discussing PCR a lot because it's still a necessary assay to develop for a variety of reasons, and because the discrepancies in PCR results have been puzzling. Mikovits's point about the difficulties of PCR were echoed by Blomberg, who felt that PCR alone was too specific and they needed to cast a wider net by using other non-nucleic acid based techniques.Dr. Mikovits argument that the human retroviruses have been, in the early stages of our understanding of them, difficult to assess using PCR and that antibody tests are more appropriate appeared to fall on deaf ears - at least in that group.
After at first refusing to be drawn into the question of the validity of anti-retroviral treatments by a question from Hilary Johnson, (Dr. Mikovits is not a physician)..
Of course treatment trials in CFS always use accepted qualitative clinical measures of functionality, etc. and there are several of them but they are apparently too qualitative for the virologists at that table.
. . . yes, we're all so interested in this subject and isn't it great that we're having this workshop (doesn't that demonstrate our interest?) and then stating that no' new funding directly devoted to XMRV will be coming until the testing problems are clarified. In fact, even then then all he would say was that he 'suspected'the NCI would then'look'at the issue: "As things develop and it becomes a little clearer whats going on I think then certainly I would suspect that the NCI and NIH are going to look and see if there are things that would be appropriate to do - and if the money is available."
However the momentum on this will tend to run out after a bit without additional money being put into it at some level or another. So its very important to sustain the momentum that we have so far."
Hi Cort,
Yes, she said 'complementary techniques' which, at this point, in the context of where the research community is, appears to simply mean antibody tests. I'm sure she had other tests in mind, some of which, I guess, require being able to find the virus in ME/CFS blood samples and grow it, which it appears no one else has been able to do (although I haven't seen all the Workshop results)Based on what I saw/heard, I can't agree with your assessment here. Mikovits was not saying antibody tests were more appropriate, but that PCR alone was not enough and a number of complementary techniques were necessary.
I would disagree here as well. Yes, of course, antibodies are being tested and they are discussed for but the main focus now is not on uncovering why the antibody results are off - it's on why the PCR results are off. I think the research community feels that they need to get the PCR questions resolved and they are reluctant to move forward until they do so.And the general discussion wasn't 'PCR-centric'; they were also discussing serological assays. Stoye argued that the gold standard test would have to be an antibody or PCR test. They were discussing PCR a lot because it's still a necessary assay to develop for a variety of reasons, and because the discrepancies in PCR results have been puzzling. Mikovits's point about the difficulties of PCR were echoed by Blomberg, who felt that PCR alone was too specific and they needed to cast a wider net by using other non-nucleic acid based techniques.
Hillary didn't ask about anti-retroviral trials - she asked, as I remember, for Judy to comment about the suitability of antiretrovirals for patients. Dr. Mikovits later talked quite avidly about anti-retroviral trials which suggests (a) that she doesn't have problems talking about them even if she is working towards them and (b) that it was the way the question was phrased that had her be so uncharacteristically reticent. Judy has certainly talked about unpublished results in the past several times and just did so at the WPI opening when she said she had found an immune signature. The physician idea, of course, is just a guess.Dr. Mikovits may not be a physician, but neither is Dr. Coffin! I sincerely doubt that's the reason she refused to answer Hillary's question. She might not have been able to answer because (speculation here) of her own efforts in working towards antiretroviral trials, or because she has unpublished research related to her answer.
Agreed!I think part of the problem is that the other virologists are mainly interested in the virus itself, not the clinical entity known as ME/CFS. Treatment trials, to them, have little meaning if they do not involve monitoring the virus in a precise manner, and if their results cannot somehow be correlated directly with viral load or function. Mikovits is a virologist who is primarily interested in the virus's relationship to the clinical entity, and is doing research none of the others are doing or seem to have an interest in: clinical research on ME/CFS. I really felt that she and Coffin were talking about two different things, and that Coffin did not grasp that the reason for these early clinical trials would not necessarily be to search for a direct relationship between XMRV viral replication/ expression and therapeutic course , but to look for changes in clinical parameters during treatment based on the hypothesis of retroviral involvement, in an effort to move as quickly as possible towards potential treatments for ME/CFS patients. Data on viral load will tell virologists a lot, but the most important data from a clinical trial would involve patient response.
Looking forward to when we can see those video's. I hope we can see hers. That would be really something - it would fit Peterson's findings....it would be scary, for sure, but it sure would help.....
I think part of the problem is that the other virologists are mainly interested in the virus itself, not the clinical entity known as ME/CFS. Treatment trials, to them, have little meaning if they do not involve monitoring the virus in a precise manner, and if their results cannot somehow be correlated directly with viral load or function.