My feelings on the news that a second serious study has backed up the WPI results for XMRV remain mixed. In this I seem to find myself in the minority amongst a huge outbreak of joy. After all, the news is good, right?
So why I am feeling so uneasy about it?
Well, for one, this wasn't an official announcement. It wasn't publication of the study. It was a leak, saying that such results would be officially announced 'really soon'. Where a leak gets splashed like this (as it were), someone's running an agenda. Whether you consider the agenda benevolent or malevolent, isn't really the point. Why was this 'announcement' made? To put pressure on the people who did the study? If so, is it an attempt at sabotage, or an attempt to force them into publishing fast? Maybe someone worried they would cave to pressure to play down their study, or keep it quiet, and wanted to force their hand.
Whichever it is, one thing seems clear - the people leaking this stuff aren't necessarily putting the wishes of the people who did the study first - and one has to wonder how happy that will make them about doing such studies in the future, and how impressed it will make them with ME campaigners. These, I think, are people we want to keep 'on our side'. Trying to bounce them into publishing on someone else's schedule seems not only rude but potentially self-defeating. I'm already seeing comments blaming them for the awful pressure people with ME are under waiting for the official announcement. Which is unfair and stupid - that pressure hasn't been created by them, but by the people who 'leaked' and created all the huge expectation of (and pressure for) an imminent announcement.
Not to mention, now this leaked info is out there, 'the enemy' has been given time to prepare the inevitable attacks and rubbishing of the study before it's even been published. Not too bright, you might think - though having been unable to resist passing it on via this blog, I can't really throw stones.
And then I worry about the sheer amount of hope and delight that has been generated by something as yet unconfirmed. Understandably, people are over the moon about this. Our hopes, after all, have taken such a beating since last November, with quickie studies rushed out to rubbish the WPI results and tell us to stop hoping. Our 'leakers' must have known perfectly well the emotions and expectations they would stir up. If the looked-for confirmation does not come (and people have been looking for it every minute since the announcement was made five days ago), hope will be shattered for so many, with all the detriment to their fragile health that entails. And the responsibility for that will fall squarely on the shoulders of those who chose to make a big splash with this leak.
If good news - the best, in fact - is coming, then of course I'm happy. I'm already wondering about blood tests, how we might manage them on our budget, how one even goes about sending blood to America. I can't help it, and neither can anyone else longing for cause and possible cure to be established. But on the whole, I'd have preferred to hear about this after the study results were officially published - and not see everyone stirred up so hugely over something we don't have yet and may not get.
I'm aware of how grouchy and negative that all looks. But back in November when the WPI results were announced, I read something that reduced me to tears: one poster, in the rush of joyous comment posted saying she was getting tested for XMRV just as soon as she could. And, she said, if she tested negative, she would kill herself, because this was her last chance for a cure.
That's the strength of feeling that is being played with here - and I just can't feel comfortable with it.
One of the keys to this is that the Wall St. Journal vetted this story. Not likely they would have picked up an unverifiable rumor. The angle that makes this particularly newsworthy for the time being is the threat to the blood supply. On that basis, could a journal ethically pull back on publication due to the implications for public health?
ReplyDeleteThe NIH confirmed that the slides were genuine. The storm is not over, but we have cleared a major hurdle and taken a big step forward. Hero worship directed at WPI may not be appropriate...but they have my gratitude, and they are not really the issue anymore, which is bad news for those attacking them. In spite of some PR missteps, they are in good position to prevail. I was cautiously optimistic, but now I'm definitely less cautious. If we've gotten through to this point, especially the past six months, we should be able to hold on for another 90 days! Now that there's much at stake for so many other people, it's someone else's turn to sweat. We just need to hang on a bit longer.
I'm game.
You don't need to send your blood to the US to be tested for XMRV. Redlabs in Belgium is one lab in Europe that has the technology and the attitude needed to find out if you are XMRV positive. I'm sure more labs will be offering this test soon. A new antibody test will also be offered by the WPI associated lab in Reno NV, starting July 1...just a few more days.
ReplyDeleteME/CFIDS deniers and WPI/Mikovits bashers...please crawl back under the rock you've been living under for so long.
...and then we can concrete over the rock!
ReplyDeleteThanks for the Belgian test heads up - I shall check it out. Very cool news about the new antibody test too :)
You've probably heard the latest by now, about both the NIH and CDC studies being held (online.wsj.com/article/SB10001424052748703374104575337160225739290.html).
ReplyDeleteI'm grateful to whoever leaked the NIH findings. Just think how easy it would be for the government to squelch them if nobody every knew about them?
Of course, the government still could do that. But if they do, at least we'll know they did.
Given what happened last week, it looks like you had good reason to worry... *Sigh.*
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