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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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I think even if XMRW doesnt turn out to be a central issue - WPI ist right that we need more funding. even if there was an improvement last months with funding (but i am not sure) its still not too much compare to other sicknesses. I think even if XMRV is not a cause this is just a normal scientist process and the researchers have to find out if its true or not. But if there will be no money - they cannot confirm it and so a lot of CFS researchers don't know on which they should focus.
So... if we could all write advocacy letter and a testimony to CFSAC, I think we could move mountains, because we NEED to move mountains. If you don't want to write, consider a dictation software or asking a family member to write for you. Doesn't have to be long, just straight to the point.
What are we waiting for?
I'm stepping out on a bit of a limb (so what's new?) and I know that this might not sit well with everyone here but it is not my opinion that we are waiting for the WPI (or even the Cleveland Clinic or the NCI).
In the world of research, the WPI has already come up with a very big hit but many questions have been raised (many by studies with minimal attention to design and the WPI has responded/engaged with the authors of those studies in ways that have generated a lot of heat from both sides - and no, I'm not blaming the WPI for feeling frustrated but I think that they need to trust the scientific process as much as the rest of us).
So, will the next great study that moves us closer to an answer on what role, if any, XMRV plays in CFS come from the WPI? I seriously doubt it. What more can they say that they haven't already said? A study (or series of studies) from independent groups (Columbia Univ. Univ of Utah, Emory, Abbott, GSK, ARUP, University of Montreal - Dr. Jolicoeur, HHS, or even the CDC) would be far more powerful.
So support these groups and push federal officials to devote resources to the problem. But also know that right now we are in a period where a huge amount of money has been spent (probably as much if not more in the last 6 months than has been spent on CFS in the last 6 years). Our present problem with XMRV isn't funding, it is patience and, while I don't think this is likely; what do we do if XMRV doesn't turn out to be a central issue (perhaps another co-infection) in CFS?
My opinion differs from yours, Otis. Since WPI is the researcher most interested in XMRV and CFS/ME and most eager to make the next step, I think it could very well come from WPI. Why not? Even medical researchers tend to be more likely to find what they are looking for than what they are not looking for, and the CAA researchers and others are not looking at XMRV in CFS/ME. The ones that are looking at XMRV seem to be looking at prostate cancer.
So why should it not be WPI that finds the next step?
All right, CBS. Tell us about all those studies which we may not hear about every day. What inside information do you have?
Please name studies of XMRV specifically in CFS/ME and not in prostate cancer.
PS--Sorry you don't like my writing style. I'm not particularly fond of yours either.