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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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)
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.
I would disagree. Several points were made by Dr. Coffin and others. Patients may not agree, but that doesn't invalidate them.
1. Clinical trials control for variables in a way that case studies often do not. There is more to be learned about a population as a whole in a clinical trial than by individual results. As Coffin put it, "off label doesn't help everyone, just the individual."
2. Coffin did back the possibility of small scale studies to find biomarkers of anti-virals
3. If scientists do not yet have a handle on how these specific viruses behave, and they do not yet, then it is difficult to precisely target the behavior in order to modify it in a clinically meaningful way.
All true (for antiretrovirals that is, not for antivirals in general), but irrelevant to the question of holding off on antiretroviral trials until a qPCR assay is developed.For example, Mindi Kitei on CFS Central noted that Dr. Klimas is also being cautionary. According to Dr. Klimas, antivirals can have a bad effect on cell mitochondria which is a problem in CFS. Other studies have shown that some anti-virals can amplify an autoimmune effect.
Having been both, I am intimately familiar with that difference of perspective! And Dr. Mikovits is a scientist too, and we are discussing her argument, not a patient's. Also, as evidenced by the PNAS commentary, there is not (at this point) a scientific or clinical consensus opposing clinical trials until a viral load assay is developed.In general, patients think about situations as they apply to themselves. That is not necessarily how scientists view things in general nor should they. Both points of view are necessary.
So it looks like we have another task: get research and attention on fixing the disease, not only on the presence and activity of a virus. How do we know that knocking down this particular virus would cure the disease? Even if it was the original cause, reducing the already vanishingly small amount in blood might not get us out of here.
You can find and remove a box of matches, but that action won't put out a fire.
"Perhaps most interesting of all was what happened with the injection of a bolus of foreign peptides into macaques that had apparently completely cleared the virus from blood. There was a huge reactivation of infectious virus in the blood proving that latent but persistent virus is just below the surface and that XMRV infection cannot be completely cleared from all reservoir sites. The peptide injection mimics an acute infection (? borrelia or the flu), an immunization or even acute mold exposure.
"The effect of XMRV infection over time was not studied in the macaque but a similar gammaretrovirus called Feline Leukemia virus (FeLV) has been well studied in cats for decades. I will in another post describe a most interesting talk at this conference by a veterinarian on the life history of infection by a gammaretrovirus in cats."
Paul Cheney, M.D.
Frustrating. Does it seem to anyone else that all this is not headed in a helpful direction...? Less hope in discovering XMRV as a key player in CFS, and more of the same politicized discussion of it as just another pathogen (EBV, HHV6, Lyme, etc.) in the mix that might cause that bewildering CFS in people who must have susceptible genes and like to whine? Can we look forward to XMRV becoming like Lyme--politics and no medical consensus after decades?
If discussion of the monkeys if pointless (disability level was not measured in them, their ability to "clear" the virus and possibly enjoy remission seems dissimilar to most PWC, who just decline forever), and there's more useful information in the cats with FeLV, then please DISCUSS THE CATS WITH FeLV.
Frustrating. Does it seem to anyone else that all this is not headed in a helpful direction...? Less hope in discovering XMRV as a key player in CFS, and more of the same politicized discussion of it as just another pathogen (EBV, HHV6, Lyme, etc.) in the mix that might cause that bewildering CFS in people who must have susceptible genes and like to whine? Can we look forward to XMRV becoming like Lyme--politics and no medical consensus after decades?
If discussion of the monkeys if pointless (disability level was not measured in them, their ability to "clear" the virus and possibly enjoy remission seems dissimilar to most PWC, who just decline forever), and there's more useful information in the cats with FeLV, then please DISCUSS THE CATS WITH FeLV.