Sorry jspotila but this is turning into a farce posting little dribs and drabs on facebook is not good enough. We need official statements of substantial length to explain the exact situation as it stands at the moment from all parties involved . This is becoming extremely frustrating for patients and my worry is that this will make some patients relapse badly . Everything is up in the air with nobody really knowing what the hell is going on .
this is not aimed at you personally please do not take it that way , but I am in contact with several patients and there are patients in floods of tears at this moment in time , patients becoming severly depressed , I am seriously concerned that the lack of information it is putting patients at risk.
Polly, I sympathise with your contacts, I really do... I know how desperate we all are for answers...
But there were never going to be any quick answers or quick fixes relating to XMRV and ME/CFS...
When the original Science paper came out, I thought that it would probably take 5 years before we got any firm answers... Although, in my more optimistic moments, I thought that we might be lucky and it might take a couple of years to make some substantial progress and get some answers.
Even if XMRV is confirmed to exist in CFS patients by other replication studies, which I'm hopeful for, then that is not the end of the story...
First they will need to do wide-scale studies, on a large patient population base, to understand exactly how many of us are infected. This would probably take a couple of years to set up and complete.
Then they will need to see if XMRV is the cause of CFS (which hasn't been proven yet - it might not be), and this might take a couple of years to set up a wide scale study like this... along with millions in funding... and no guaranteed answers.
And then they will need to test various anti-viral drugs which can take 5 years for a medicine to get full approval, seeing as none of the existing anti-retrovirals will necessarily work on XMRV.
Unfortunately, we are all caught up in the scientific process, which we don't usually see... usually it goes on in the background without us knowing about it... but this is exactly how science usually works...
Unfortunately, even the CDC are acting just like scientists usually do... conservative scientists, or establishment scientists, or scientist who have a reputation, or income, to protect will put out papers to defend the status quo, and they will get away with it because the new science is the 'radical' position and is therefore easily challenged... it is far harder to challenge the existing science, like the WPI are doing.
I'm saying this, not to be pessimistic, or to bring gloom or negativity to the forum, but I thought I should point out how this process works, because there's not going to be any quick and fast answers.
If your contacts are getting really distressed by the developments, then maybe you could suggest that they think about taking some time out from the news feeds. Yes, I know, it's easy to say, and not so easy to do... I know that from experience! But it's a serious suggestion, if you are worried about people experiencing relapses. I find, personally, that if I get away from the forums for a few days at a time, then I can forget all about the chaotic developments, and distract myself with other stuff, and it is easy to catch up again by looking at the forum headlines. (Hope this doesn't sound patronising - it's just supposed to be some helpful feedback.)
Even if this scientific process goes exactly as we would like it to, and XMRV is quickly proved to be the cause of ME/CFS, then I would think that it would still take at least a couple of years for there to be any treatments available to some of us... and very possibly nearer 5 years... We don't know if any existing drugs would work successfully to treat XMRV, and even if there were, they would still need to be fully tested which would take a couple of years. If brand new drugs were needed then they would take nearer 5 years to gain official acceptance.
I remain cautiously optimistic, myself... But I have to keep reminding myself that XMRV might not be the answer we're all hoping for... but I really hope it is, and I would make a guess that it is at least responsible for a subset of ME/CFS patients.. But there's absolutely no
evidence yet to show that it is a cause of ME/CFS.
... I hope everyone can take a chill pill and not get stressed. I hate to think of people getting distraught over this. XMRV is not going away. If you thought it was there yesterday it's still there today. No government can ignore it when there is the blood supply to consider and dedicated scientists like Judy M kicking up stir on our behalf.
Please everyone take a step back for your own good. And yes, if you need to do something then badger the CAA and the MEA and get them to get the answers to what is going on.
All the best to everyone of you.
I agree with Adam... and he expresses it better than I do.