We are a far cry from being treated as mainstream. The gap between research funding and public attitudes vs societal burden and patient reality is still rather staggering. So I'm starting to back away from my previous more optimistic stance about the short and medium term future and agreeing more with the notion that nothing has really changed much. Many of us had hoped that the XMRV/MLV saga would open the floodgates of funding, but this never happened, and unlikely to happen if the Lipkin study on XMRV/MLVs is a null result (which I expect it to be).
I don't blame you for not feeling so optimistic biophile.
I agree that the progress of research is always very slow.
And the XMRV situation is at a particluarly delicate place at the moment.
I have a feeling that Lipkin might throw up some novel MLV-sequences and yet have a conclusion that some of us aren't comfortable with. So, it might have the worst kind of inconclusive results. (But this is pure speculation.)
Anyone who wants to see the MLV research continue, is bracing themselves for the aftermath of the Lipkin study.
So, at the moment, I'm trying to focus on all the research that isn't related to MLVs.
I do tend to have an optimism nature, but I am actually feeling optimistic at the moment, looking at the wide body of research in the pipeline.
There does seem to be a surprisingly large amount, and wide variety, of high quality and very interesting and promising research in the pipeline, with funds to make it happen. Like you said, even in the UK, things seem to be changing a little bit.
I disagree that there is no such thing as bad publicity. The public relations surrounding XMRV/MLV and the hype/spin surrounding the PACE Trial has further sunk the reputation of the patient advocate community. We are now in a situation where it seems perfectly acceptable for CBT/GET proponents to publish verifiable errors and even slanderous lies in medical journals without the need for correction. When it comes to public relations, the medical profession basically has us over a barrel while the rest of society cheers them on, laughs at our complaints, or is looking the other way. I do not think our reputation could sink much lower without actual acts of violent terrorism or some patient advocate groups transforming themselves into alien spaceship cults which blame ME/CFS on spiritual forces.
I suppose I come at this from an optimistic point of view, as well. I don't think that CFS could have been in a worse place than it was, so I don't believe that the negative publicity did us any harm. For those ignorant and cynical people who thought that we just have personality disorders, then any negativity just reinforces their wilful ignorance. But the publicity about the serious nature of ME, that came with the XMRV research, probably opened up minds about the nature of ME, and changed minds in a positive way. Harvey Alter (just as a high profile example) even said that he had new understanding about the disease. I had the feeling that he had never encountered ME in any meaningful sense before XMRV.
As for the stuff relating to the PACE Trial, I don't believe that any decent or intelligent scientist would believe the nonsense that came from Wessely about the nature of our patient community. I mean, does any scientist or medic, who has any integrity, really believe that ME patients are nothing but a bunch of dangerous medical-terrorists? The psychiatrists just sound more and more desperate, and more and more ridiculous, the more they say these days, and I'm hoping that they are rapidly losing their influence. I don't see how they can retain any influence after the PACE Trial results are fully understood by the medical profession.
The lies and misinformation relating to the PACE Trial are a problem, but the facts are on our side, and I hope that they will be known by the time of the NICE guidelines review. Not only did the PACE Trial demonstrate that CBT and GET were useless for 87% of their cohort of heterogeneous CFS patients (and possibly next to useless for the other 13%) (and possibly harmful for many as well, once we have the details of the deterioration rates), but it also convincingly and conclusively destroyed their theoretical model of CFS/ME, in a very expensive allegedly "top quality" medical trial.
I would find it highly disappointing if Mikovits et al never bothered to submit to PLoS once during this whole controversy. There is a phrase, "beggars cannot be choosers". When no one else will publish your papers and certain people in your field just want you to STFU and GTFO, you are clearly a "beggar" of sorts until vindicated, regardless whether you are correct or not. Refusing to submit to PLoS in such a situation would demonstrate an irresponsible stubbornness which may set back the scientific process. Fortunately, Mikovits was involved in the Likpin study.
I don't understand this situation either. PLoS is a respectable journal anyway. But maybe they won't publish anything either. Just because they have a different publishing model, and receive money to publish, doesn't mean that they publish everything that comes their way. They still have a peer review process.
But we've been promised a lot of stuff, and told a lot of stuff, over the past few years, and since none of it has come to fruition, I wonder how much of it still stands.