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Written by usedtobeperkytina
I just wanted to give my review of the PR with the latest events.
First we had the rumor of a pulled press release from CDC. Seems what was pulled was the study. If there was a press release with it, it was not just temporarily pulled but permanently pulled. So, this rumor was close if not accurate. Kurt, you get a “B” as far as information. You even came back and said your sources were still telling you they were on hold, when others were saying they were approved. You got you some good sources. You were right. I am not grading you on other comments or opinions, since I don’t read them all. But on providing reliable information about the studies, you get a “B”. I would give you more if you would give us more information.
Journalists. Then, we had some very good journalism. Ortho, WSJ, Mindy and Hillary have been pursuing these stories and as far as I can tell, all have been correct, except possibly minor points. Hillary said her sources said the studies were in print, or at the presses, or something like that. Maybe it had gone that far and pulled from the printer. We don’t know. So she may still have been exactly accurate or her sources went just a tad too far, when actually they were approved for print, but not at the printer. The rest, right on target. Although, I wish Mindy would give something more than “my sources,” such as “a source that has seen the study” or something to show her sources are credible and firsthand, even if she can’t give the name. Sometimes she does, but other times she just says, “my sources.” But, she hasn’t been wrong yet. So….
Even though now it seems the NIH / FDA study is not approved, it seems clear at one point it was. Either these journalists have been working very hard to get some people to talk or there are lots of deep throats, no, even more than that- Even deep throat didn’t come forward, he had to be asked first. Don’t know if the sources are calling them or if they had to do a lot of massaging to get it out of them, but the result is that these journalists have served the public very well with accurate information and getting the info out, all the while doing their watchdog to the government duty. I’m proud. Journalists, you get an “A”. (can’t quite go for A+)
The unnamed sources have also done the right thing. Clearly this was an abnormal act about a matter of public concern. So, some people who were mad or who had a conscience talked. Good for them. It was a risk for them. You get an “A.” If you had given your name to journalists, you would have gotten A+.
Also, DHHS, while I understand wanting to get a united story from the two organizations in the federal government, it is not the way scientific process is done. Since they were approved, then it should have been left alone. If the news media wanted to report on it, let them report the way it is, two studies, conflicting results. Pulling peer reviewed studies does not play well among other researchers and patient community, evidently. So you get a “D”. Only reason it isn’t an F is that it makes common sense to want to get both studies to agree or understand differences before published, but it is not common practice in scientific research.
The journals. They get an “F”. If your reviewers looked at the study on its own merits and saw it was ok, then you should have published no matter the request from those researchers or DHHS. Only if fraud was suspected, and it wasn’t, would you pull it at that point. It takes courage, and you failed. Lay media had to step in and do what you failed to do.
Alter, well, you should have known better than to reveal info of your study at a conference, even closed door. Too high a profile on this topic, it was bound to get out. And there you were, being asked to confirm what obviously you said when lay media asked. And then, when it was pulled, there you are having hung yourself out there. I know it is common to reveal unpublished stuff at closed door conferences. But XMRV and CFS is different, highly political. So it was not good to reveal the results…… that is……unless you didn’t mind or even wanted it to get out to public before publication. I don’t know how to grade you because I don’t know if you are actually doing this on purpose or if you didn’t mean for it to get out. Either way, your quoted, attributed comments after the conference have been good. If this was a mistake from being naive about CFS, you get a C. If, though, this is all part of a master plan to manipulate things, you might should get an “A”.
Then we had the blog from Vincent Racaniello. Your words were strong, but you reasoned on the scientific process for discovery. Spot on. You spoke out courageously and without attacks to clutter the clear message of letting the scientific research speak for itself. You get an “A+”.
CDC, F-. Still, your research methods on CFS have been lacking to say the least, but you speak with such arrogance. You have again squandered an opportunity to gain some good will and trust. But what’s worse, now you have not only lost the trust of the patients and other CFS researchers, you have caused a conflict with you and FDA / NIH and other researchers into XMRV that are new to CFS. And the way this was handled just gave gasoline to the conspiracy theories. The problem is not the negative results of the study. This grade is for PR. And, you failed.
WPI, this time, you guys got it right. The statement you gave in response to the CDC study was perfect. You did not attack or criticize. You simply stated: “This is not replication; it was done differently.” Good for you. Since you are on the hot seat, it would be very unseemly to be criticizing others and imputing ulterior motives. Stick to the facts. Speak from a position of strength and confidence, knowing that other studies will ultimately prove you right in the end. And as far as I am concerned, once Ortho put out their press release, then there is no problem your just linking to that on Facebook, embargo or no embargo. You didn’t put it out or reveal anything new about it, Ortho did. Once the genie is out, can’t be put back in. I understand that you can’t reveal info yourself. But I see no problem linking to Ortho without any comment. You get an “A”. Would have been an “A+” if not for the on again, off again postings on Facebook and the Website.
Dr. Vernon. Now, Dr. Vernon is not actually doing research into XMRV. She is the research director for CAA, which involves managing the research sources of CAA, but others actually do the research. She and CAA have not made a claim. So she has no need to defend anything concerning these studies, XMRV yes or XMRV no. She works for an advocacy organization. So her role is to advocate for solid research and more of it. Her statement after the CDC study does impute ulterior motives. Since there has already been a break against CDC, there is no relationship in jeopardy. If her comments about the methods are correct, and that is Virus Research 101 knowledge, then her comments are just fine, including the one about their not wanting to find it. Although, I am still not sure of the general population prevalency quote, she evidently has some basis for that. She is just the one to make such comments. (Better her than WPI because her research is not being called into question. She can speak from someone without a vested interest in the outcome on XMRV, just wanting the truth.) She has the scientific knowledge and the independence to the controversy to say what many patients suspect. She rightly points out the problem of everyone using differently defined patients, but not giving enough details in the studies of what kind of patients are used. Her comments were more technical, which is ok because other researchers need to know the flaws. CAA, A+ for you this time.
And the valedictorian of the PR class this time is Otis. The statement, “Let my papers go,” is a strong soundbite that reveals the very valid desire of patients, with a little bit of humor. You get an “A+” with bonus points.
Tina