I completely agree, WPI's PR skills are a disaster. Dr. Mikovits should not be saying anything about unpublished data, period. This is how you get a bad name in the scientific community and it will certainly not help get funding for future studies form the government or other research organizations.
I have long been aware that science, especially medical science, is slow to deliver, by common agreement. "PR disasters" like these seem to me to throw light onto a world of secrecy in which extreme caution seems to blur into a separation between the "knows" and the "know nots" - with the general public very firmly in the latter camp until the time is right.
We are told that all these leaks and revelations harm the scientific process and slow the process down - somehow, and I'm not sure how. But I'm far more interested in the difference it might have made if Dr Alter's study had been published in however preliminary form back in May when he was confident enough to say "likely" in private conference. Why is it any worse for us to hear a "maybe" too early, than it is for us to hear lots of very-well-reviewed protocol-compliant "definitely no" stories that are completely wrong?
Whoever or whatever the justification for holding back any of the information that is known, I want to register the scientific cost of that delay. What difference would it make to Russian or Chinese or European research and policy in this area to know the preliminary findings? Wouldn't it help accelerate the science if the whole world knew as much as possible, as soon as possible? Wouldn't it change people's decisions over what to research?
So this cost in time to the scientific process, that is lost due to the failure to share and collaborate internationally, is vast. But then so therefore the opportunity is enormous: to modernise and speed up the process of discovery and research - who knows how much more rapidly knowledge might advance in the future?
I realise that this may be "the way things are done" (although the DHHS intervention was definitely NOT normal, as everyone knows), but that is not good enough. It is far too slow and inefficient. When your hopes of a few years of life lived free from torment depend on speed in this process, this sort of wasted time seems far less tolerable. The world just lost 3 months...and counting...
Or is this all about the United States government control of the disease, internationally? Does the US seek a lead in research? Will we now all share knowledge openly around the world? Or seek now primarily to exploit the financial opportunity that sufferers represent? There are always so many choices...
A practicing doctor may not deliver the treatments she personally knows to work if they are not sanctioned and she can be struck off for doing so. A researcher may not reveal what she knows until the proper time, and even revealing that she will soon be revealing something exciting, and saying when, is bad form, apparently.
These things make sense to those close to the heart of the system, I suppose, and are part of a logic, but from a patient perspective it does not make sense and it does not seem caring.
Of course, this is all predicated on the assumption that the doctor is right about the treatments, and the researcher is right about the research. When that proves to be the case, I would imagine that would be a game-changer regarding arguments like this in both cases - more slowly for the doctor than the researcher, and especially slowly for the patient, of course.
Because if announcing your results ahead of time gets you a bad name in the scientific community, making the breakthrough discovery that solves ME does something for your reputation too, in the wider community, although of course some will be more pleased than others...
And if it turned out your treatments were right and helping patients, and everybody else was wrong and harming them, and you just got suspended for helping patients, the mob that suspended you would perhaps have slightly thinner voices as they tried to proclaim "OK: So you were right after all, but that's not the point..."