AABB "actively discourages" CFS blood donation in USA!!!

[acer2000]

I'm just curious, does anyone know who the PR firm that the WPI uses, if in fact they use one? It seems like some of these issues with bad quotes and press relations could have been/could be addressed by using a PR consultant who is saavy in this area?

 

[V99]

attributed ulterior motives for one of the failed studies,

I have never seen a quote for this, only a line in an article.

As for the Video, I saw that too, but it is hard to interpret whether it is taken out of context or not because it has been edited. It may be that this has been filmed for use if XMRV is shown to be the cause, and in that case the filmmakers should not have used it.

 

[Cort]

Cort, you make a good point, WPI is now being defined as credible or not. Their behavior is contributing, one way or another. But if they didn't speak out against contamination complaints, then that would also determine their credibility.

And this credibility was not just in medical research community, but in world in general since the claim of contamination has not just been whispers, but it was made in a news article. So would the University of Nevada, NIH or other institutions withdraw funding from a lab that makes large claims based on a contaminated study? The record needed to be set straight in the public arena.

And since it hasn't stop (see Dutch study and public comments from that side of the Atlantic after that) then it needed to be made clear, publicly, again.

Now, do i see some PR mistakes from WPI? Yes:

First of all, before October Science Journal publication, I see no PR mistakes for years. They played it right up to publication, despite the clear significant finding they knew about for possibly a year earlier. They got some big names as partners and they satisfied every demand from the reviewers, all the while keeping their mouths shut. Not to mention, they started the study off good in the beginning, picking patients and controls so that Science Journal reviewers saw the figures as telling a true story.

But, right afterward, Mikovits revealed information of Autism and Fibromyalgia small sample results in a Nevada interview show. She also mentioned vaccines. That was a mistake on two levels. One, she should not have released unpublished information in lay media. It is small group, relatives of CFS patients (which wasn't mentioned in the T.V. program, I don't think) and had no controls. She later said she recognized it was a mistake to mention these results as she did.

Secondly, unless you have strong data and the same kind of confirmation from other labs (as in Science journal study) stay away from any public statements about autism and vaccines. At the most, mention it in a conference as a hypothesis, but certainly don't say anything on T.V. That is just too much of a political hot potato to put out until you have solid data.

Thirdly, someone, I don't remember whom. I think it was Mikovits, attributed ulterior motives for one of the failed studies, I think the first one. While she needed to publicly correct the contamination claim, insinuating ulterior motives for McClure was out of line, if I am remembering right that she did that. Stick to the issue of the methods and cohorts of the studies. Now, I'm not saying there wasn't ulterior motives on the part of Wessley and his influence over the study is more than just giving samples. (Even if his patient cohort was wrong, some XMRV should have been found in those numbers, healthy or patients, if done correctly.) Maybe Mikovits has some knowledge showing it was rigged that we don't know. But you don't accuse a researcher of ulterior motives unless you have evidence to back it up. Which they do have such evidence to make a claim on the third study.

Now, another mistake, news media reports with inaccurate information about WPI or their studies, quoting these other researchers, must be corrected publicly and quickly. If anything, I think WPI has made the mistake of not addressing these quickly or loudly enough. I think the Whittemore letter came a little late. Within a day or two, these things need to be corrected strongly and publicly. No accusations, just the facts ma'am.

And I see no problem with Mikovits sounding the alarm, saying possibilities for other diseases, including autism, as long as she doesn't release unpublished research results. It's all just hypothesis. Exposing where federal research money is going and not going, in the face of a possible new pathogen, is a matter of public concern. The researcher into that pathogen is in the position to know the nature of that and its possible implications. So getting that information into the public is certainly appropriate.

But, I saw the trailer for the What About ME movie. And Mikovits makes a mistake. She says there are three human retroviruses that cause cancer and neuroimmune diseases: HIV, HTLV and now XMRV. So here it is, she publicly says XMRV causes disease. Too early for that. She might see it, but too early to make public statements that it does. Qualifiers such as "likely" "possible" etc. could have been used. That would have been better, at this time.


These are my opinions, and only my opinions.

Tina

Thanks Tina, I agree with almost everything you say. The WPI was impeccable up to the XMRV launch; they were able to get considerable amounts of federal funding to assist with the Institute and they had a rock solid and exciting research program (and, of course, they still do). I think there's science and there's politics or etiquette or whatever and I think an institution can have rock solid science,as the WPI obviously does, and get hurt if they don't manage the PR end. Dr. Mikovits scientific credentials are impeccable and she was able to enroll top scientists from two important Institutes (NCI, Cleveland Clinic) to work with her and then she was able to get a paper published in the top journal in the land - she's got the science part down!

But talking about autism before XMRV has been validated in CFS - that was throwing yourself into a hot button topic immediately! (wasn't CFS enough?). Yi, Yi, Yi! I say stick to the science Judy and let Dr. Donnica talk about CFS and XMRV - she is a media person - she's experienced in that; she knows what to say and not to say. Annette is also very good - she's calm, she's very poised and she's as smart as a whip! She's an excellent spokeswomen.

You've got two excellent representative and knock em dead researcher working away back in the lab; what a great combination - how can you not win? Just keep everybody within their circles of expertise. Judy talks to researchers and research groups, the other two talk to the media (and the patients).

If the WPI is right it will all turn out in the long run anyway - just easier not to ruffle so many feathers along the way.

 

[Megan]

Thanks again Tina! You've knitted together everyone's thoughts really well.

 

[usedtobeperkytina]

Well, getting thoughts into words is what I do for a living. But as for knitting......

Well......

Not so much.


LOL

Tina

 

[shiso]

Thanks for your post Tina.