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Last year a new candidate virus hit the scene – a retrovirus called XMRV (Xenotropic murine leukemia virus-related virus). This one seemed a real doozy – the initial reported study in Science indicated it was present in 67% of CFS patients. This “good” news went figuratively viral and soon the web was bursting with speculation about XMRV and how it could be diagnosed and treated.
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What has been interesting to me is the way in which patient groups have responded to the available research and information about XMRV. Most appear to remain firmly wedded to the idea that it is the real deal, and many ME/CFS forums are discussing research and treatment in great detail. Perhaps not mindful of previous false hopes in this area of medicine, some are obtaining, at great expense, complex experimental drug treatments via the Internet or from compliant doctors.
Since XMRV is a retrovirus, anti-retroviral drugs like those used to treat HIV/AIDS have been tried. Logically, this might make some sense, but only if XMRV infection actually is present in the first place, that is actively replicating and that it has a genuine role in the pathogenesis of real physical illness. Currently, those are all massive “ifs”, and it would be a foolhardy (and not to mention brave) individual who would recommend or try antiretroviral drugs on such a speculative basis.
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I might well tut and sigh, but all this foolishness does bring home one fact very clearly, namely that CFS/ME patients are despairing for answers and solutions to their plight, and will try almost anything. I can only hope that they don’t fall into the trap of being maliciously exploited by the snake oil salesmen and drug suppliers that are popping up trying to make a fast buck off the back of their misery.
I also hope that those scientists who have a personal stake in the XMRV story can be more objective and refrain from believing their own hype. Perhaps they will reconsider the evidence base and stop marketing their patent “test” for XMRV? I can but dream. Pharma companies who develop ARVs would be well advised to steer clear of what must appear to them to be a new and lucrative market.
After all, we don’t even know if XMRV is the problem, and all the indications are that it will prove to be just another false dawn in the long night that CFS patients are currently enduring.
Zie:
http://layscience.net/node/1052
Ik vind zelf de ophef over het XMRV-virus een beetje overdreven en laat me zeker nog niet testen. Behandelingen met antiretrovirale middelen zijn m.i. absoluut nog niet geindiceerd vanwege de mogelijk ernstige tot zeer ernstige bijwerkingen en het feit dat nog onduidelijk is of deze middelen uberhaupt wel helpen tegen dit virus en of dit virus ziekte veroorzaakt.
Hopelijk wordt e.e.a. na verder onderzoek duidelijk.
