I'm afraid I still don't really have time to post, chaos rules my personal life right now, water supply cut off for past 24 hours+ for example, so anyway that sort of thing is why I'm not around, as I'd love to be at this crucial time.
But I'll allow myself a few minutes...
This whole experience, since October 2009, has of course been a rollercoaster ride and at times a hair-raising one. I only joined this whole ride in October 2009; unlike many others, I had never heard of Defreitas or Osler's or any of that until then - and I hadn't joined a roller-coaster simply because I'd never seen one that looked worth joining. So I don't have the legacy of ups and downs that others have had with the history of ME and CFS science - a history that will one day be a shameful lesson that humanity will seek to learn from.
So perhaps that's why I'm not quite as pessimistic as free at last, but nearer to omerbasket's cautious optimism.
I agree with the reality of everything free at last says about the potential tools of pressure, the levers of power exercised by the vested interests. Indeed I would go much, much further than this, on this subject, if it were relevant. But I just don't think these strategies can work from where we are at now. They are just far too high-risk. Things have gone too far for that.
The sort of conspiracies you're talking about, free at last - never has such a thing happened in plain view in such an open way as would be necessary here. If Alter's conclusions were to be altered and he were to suddenly appear saying "I was wrong about XMRV and CFS" then he might as well have "I have been silenced by the dark side" tattoed on his forehead. I mean: the entire worldwide online CFS community, surely, would then
know this is a conspiracy for sure, if that were to happen. Even a lot of BSers who've got dragged in would start to wonder - I seem to recall seeing one of them effectively admit that recently. The wolves that would be unleashed if such a retraction were to happen now, would make the "angry CFS community" they know and love seem like a church picnic. Nobody can risk that kind of exposure. Conspiracies like that don't happen in quite such plain view.
The future's unwritten, but it seems to me far more likely that omerbasket's version of events is roughly accurate (I thought that was a great post btw).
A lot of people have described this as a 'rollercoaster' experience, so I would like to offer a different metaphor.
What I have seen is a serious of conversions. People who have lived without hope, without belief in the possibility of change or relief; people who have resigned themselves to their fate...like me...have one by one come to look at the detail of what's going on, followed the progress, and at a series of milestones, each time a whole new bunch of people are converted and become "believers" in the WPI and their findings.
These conversions, it seems to me, are conversions from despair to hope, and mine had a hugely positive effect on my life in general, and so I really do hope you'll have one yourself, free at last, in "a few weeks" time...
But finally, it's perhaps time for us to start thinking one step ahead. It's easy to do: our enemies have a very simple strategy really - deny absolutely everything. So we really shouldn't be surprised when the CDC, Wessely (sorry: "scientists who have seen the paper"), and other interests react by saying these could be different patients, these results could be based on a geographic cluster, the testing method is flawed somehow, etc etc etc. Those people will try anything, as they have recently and graphically proved. We shouldn't be surprised or upset when they carry on doing it. Somebody made the very good point that this latest delaying tactic, slowing down the research process, will have to be investigated one day and brought to justice - but those same delay tactics are now only about one thing: postponing that day, and that battle will happen at
every step of the way. Maybe one day they will lay down and resign themselves to the inevitable, but I'm not holding my breath. They show no sign of giving up.
So brace yourselves for the arguments to come. There is no proof it is in CDC's CFS patients; they are a different disease. There is no proof it is in the UK. There is no proof it is causal. OK, so it's causal...but there's no treatments so the best plan is to stick with CBT for now. OK, there are now some treatments, but they aren't robustly proved yet. OK, so they're proved, but they're too expensive right now. What's that? Where did it come from? There is absolutely no evidence that it was ever in any vaccine - that is pure speculation. Anyway, there is no point trying to investigate the origins or causes, we should focus on treatments (that's how they play cancer, and very successfully for many years, so here we will probably stall I'm afraid).
So yes, yet more shameful, unethical, dirty fighting against the truth is only to be expected from these psychowarriors. It will be a matter of years before we can really post "Game Over" with any confidence. But we can already say "The Game's Up"
remain calm, speak the truth, and the truth will set us free.
:sofa:
