WPI Respond to Nature article

[LaurieM]

The WPI have responded to the nature article:

http://www.wpinstitute.org/news/docs/NatureResponse.pdf

It is important to clarify statements in Ewan Callaway’s recent article which were
attributed to Dr. Peterson implying that Dr. Mikovits was being “secretive and noncollaborative” with regards to the XMRV study. Dr. Mikovits is an outstanding
researcher who has created numerous collaborative studies over the course of her
research career. She fully understands the responsibility the creator of each study has to
the entire team to ensure scientific integrity of their project. To do this, it is imperative to
have the work fully examined and peer reviewed prior to publication.
It is a very common and accepted practice for individuals from different scientific
and clinical organizations to ask each contributor to sign confidentiality agreements to
protect the work of the investigators and the confidentiality of the patients until the
subject matter is published. Dr. Peterson declined to sign the appropriate confidentiality
agreements until the study was well underway; therefore, he could not be given access to
other scientist’s or patient data until it was protected by written agreement.

 

[JPV]

From: Nature News - Virology: Fighting for a cause

"We really retooled our entire programme and did nothing but focus on that," she says. They kept the effort under wraps, dubbing it 'Project X'. Even Peterson and the Whittemores weren't clued in. Mikovits says that the secrecy was necessary because her team also found XMRV in the blood of some healthy people, raising concerns about blood products. She hoped to build an airtight case because she worried that sceptical public-health officials would undermine her work..

Mikovits says that she kept the XMRV work secret from Peterson over fears he would tell his patients, and left his name off the original Science manuscript until a reviewer questioned the omission. When asked whether that episode contributed to his departure, he says, "I was surprised at the secrecy and lack of collaboration." As for his motivation to team up with Levy: "I'm just trying to get to the truth. It's my only motive, because this is such a deserving group of patients who need to know what's going on."

 

[Enid]

Please can everyone let it be now and allow them to return to the vital work they are doing for us.

 

[LaurieM]

Please can everyone let it be now and allow them to return to the vital work they are doing for us.

So you are telling us not to discuss on a discussion forum things that you do not wish to hear - interesting to say the least.

If the WPI didn't want this to be brought into the spotlight again then surely they should not have put out a response.

JPV:
Some interesting quotes from the initial article than seem to be in direct opposition to the WPI's response.

It looks like some internal politics at work here, and who knows the exact truth?

BTW I am not anti WPI - in fact I donate money every month from the UK, but that doesn't mean I have to believe everything I read from either the WPI or their detractors.

 

[Enid]

No not at all LaurieM - just that I know from my own family (all Spec Medics) the difficulties/politics/whatever. Time to move forward - agree/disagree - they themselves are continually "discovering" and no doubt will adapt/change as their research progresses in the search for the answer to ME. There's politics in just about everything if allowed.

 

[maryb]

Please can everyone let it be now and allow them to return to the vital work they are doing for us.

I totally agree.

 

[dannybex]

Please can everyone let it be now and allow them to return to the vital work they are doing for us.

Hi Enid,

With all due respect, even after reading your followup, I still don't understand your statement.

I don't think they're spending any time reading this message board, so discussing this isn't taking them away from their work.

Also, I personally don't believe there is "one" cause of ME/CFS, whether XMRV is involved or not. Each of us has different, multiple causes, or reasons why we're sick, in my humble opinion. That's why it's so difficult to treat.

 

[FunkOdyssey]

Whether Peterson was deliberately kept out of the loop, or whether he refused to sign a confidentiality agreement... I fail to see how this impacts anything meaningfully.

In fact, I would argue this is one of the least important and least relevant things we could possibly spend time discussing.

 

[acer2000]

I'd like to point out that, regardless of what happened in this situation, its pretty much standard operating procedure for study participants and investigators to be kept in the dark about results of an ongoing study until the paper is published and the code is cracked. Its part of the blinding process and helps maintains objectivity.

Many times when you participate in research, you never know the results of your sample, regardless of the study outcome. It appears that wasn't the case here, but they waited until the study was published for the sake of the scientific process.

This is just my opinion, but its not going to benefit any CFS patients for the WPI and Peterson to argue publicly about what caused their rift a couple years ago. It would be much better if they settled their differences and moved on. (or better yet began collaborating again) The last thing we need is more fragmentation in the CFS research community. I think that while the conflicts written about in that nature article may have made for entertaining fodder for journalists, most of the content was in poor form and did nothing positive for ME/CFS research or the patents.

 

[Ernie]

This was exactly what was said in the article: When asked whether that episode contributed to his departure, he says, "I was surprised at the secrecy and lack of collaboration." http://www.nature.com/news/2011/110314/full/471282a.html

What's laughable is the fact that Judy doesn't have patients. This was also talking about prior to the publication of the Science paper when it looks like a confidentiality agreement had not been signed.

 

[justinreilly]

"What's laughable is the fact that Judy doesn't have patients." You would have to argue that fact with her...

She's a research scientist with a PhD; she doesn't have patients.

I don't think they were disparaging Peterson at all. If what they say is true and there's nothing else we don't know, they are in the right. Who knows if we'll ever know the full story, so i'm not going to judge either of them.