WPI Letter to Dr McClure ****

[leelaplay]

I'm proud to be part of such a top quality forum amongst people who really care for each other. Great work everyone.

I heartily agree Bob. Well said.

You could be right julius. I mean about correspondence we don't know about. NOT I think about being any type of mammal during early research studies. Although you're not a mouse, I wonder what they would do with a dog who thinks its a cat? Oh - maybe you wouldn't fit the strict cohort definition. ok ok - let's not go there. Oh - it's okay - we're just talking about the movie.

 

[Bob]

I'm actually quite concerned by this letter. It's analagous to the white glove across the face, or the unbearable insult to one's country, wife, mother, daughter, honour.............. Okay Dr. Yes, you did such a great job of cross-cultural training with us, describing how scientists talk to one another - is this normal?

As a non-scientist, I don't know why they didn't first write professional letters privately to the lead authors of each no-XMRV study saying something like "Goff mentioned the other day that the reason we're getting different results is that we aren't sharing samples and no one has tried a replication study. Let's do that". This approach doesn't seem to invite the others to come on board and play nicely together.

I'm not an expert in this area, but I would guess that the WPI's integrity and professionalism has been questioned so publicly and so widely, that now the WPI are publicly protecting their reputation.
The WPI has taken quite a bashing from the other researchers, but it seems that it was the other researchers whose integrity should be questioned.
McClure made some quite forceful conclusions from her study which challenged the WPI's reputation... remember how we all had big discussions about how worried we were after the failed study was published?
I think it is right for the WPI to issue this letter publicly... I think it's not really a private letter, it's a reputation protecting PR exercise.

 

[julius]

Dog who thinks he's a cat?!? Why I oughta....

 

[Robin]

This really gets me into conspiracy theory mode. I need you guys to talk me down.

It's starting to look like Kuppeveld and Kerr were somehow pressured to get (or at least report) negative results. Or could they have each on their own have decided to do this.

If they were both under pressure, it would have been an international effort by some group. And the pressure would presumably have been pretty intense, especially in Kerr's case, given that he was, in a previous life, a friend of ours.

This kind of looks bigger than an insurance company trying to save money. I know these insurance guys are big, and they get nasty, but this just seems a little too...I don't know....nuts.

Talk me down off the roof guys. I'm full blown JFK at the moment.

LOL! Yes, you are.

Well, if the men in black sent by the Insurance Company Illuminati are pressuring researchers to tamper with studies, then they would have to either skew the cohort or falsify data to get the intended result.

In the former case, you would expect that they would at least find a low % infection of all those tested like the Japanese or Americans are finding, unless of course there is truly a geographical strain that isn't being picked up by their methodology. (If it is a bloodborne retrovirus that is sexually transmitted, it's very unlikely that it doesn't exist in the UK.)

In the latter case they would need to find corroborating virologists willing to risk his/her career (see: Wakefield) with such egregious misconduct. And you would have to find those people FAST, as we can know from McClure they "rushed" to get at least that study out. It's possible but unlikely; again its more probably that the there is some scientific reason for the results such as an insufficiency in the testing method or strain difference. (Or, though it seems less likely but I'm surely biased, the WPI Science study was wrong.)

Further, it's unlikely because the magnitude and thoroughness of the Science study and the novelty of a new(ish) human retrovirus causing disease would pique the interest of the science community at large. Thus a few studies hastily thrown together would not be compelling or sufficient enough to quash the XMRV/CFS link, knowing that there would be many confirmatory studies to follow and their nefarious scheme would not go unchecked.

Do you feel better now?

 

[rebecca1995]

non contact controls?

From the end of the letter:

...especially in light of the fact that our team of researchers
also discovered XMRV in the blood of 3.7% of our non contact controls.

I wonder if emphasizing "non contact" means they're finding it at a significantly higher rate among contact controls. Could be an effort to forestall criticism that XMRV prevalence is greater than previously thought, and therefore unlikely to be specific to ME/CFIDS. (<---There, Justin, are ya happy? Your terminology. )

 

[MEKoan]

One reason to rush is so that later you cannot be accused of having gone slowly enough to have found it. You can say: yes, but we went so fast; who could see anything going that fast!

If a couple of botched jobs had been enough to kill it, it would be dead.

I can imagine someone who's in for the long haul saying: Geez, look at these bloody Americans, they don't know what they're on about; make this go away - shouldn't be hard to do.

 

[Otis]

As a non-scientist, I don't know why they didn't first write professional letters privately to the lead authors of each no-XMRV study saying something like "Goff mentioned the other day that the reason we're getting different results is that we aren't sharing samples and no one has tried a replication study. Let's do that". This approach doesn't seem to invite the others to come on board and play nicely together.

IF - I understand your concern. I'd like to think that some kind of conversation occurred before this, if nothing else via email but we may never know. I'd like to believe professionals treat one another with respect. I can't see this kind of shot across (or through) the bow coming without some attempt to reconcile differences via direct communication. But I've been wrong before (today, this evening, uh OK all the time). :Retro smile:

I wonder if the answer from across the Atlantic was "Read our paper. What you don't agree? Read our paper. I'm hanging up now. Click. What someone named Parvo ripped us to bits? Click. Yes, a collect call for Mrs. Floyd from Mr. Floyd. Will you accept the charges from the United States? Click".

It's frustrating that all we can do is try to read between the lines and hope some solid new science will come to light soon.

Dr. Yes, if this is round 2, I'm already on to the PEM, in the middle of the ring, face down. :tongue:

Otis

 

[VillageLife]

I feel mccure will feel very Embarrassed by this letter. I hope they aren't to nasty in return.

 

[subtr4ct]

Annette Whittemore:
We would also like to report that WPI researchers have previously detected XMRV in
patient samples from both Dr. Kerrs and Dr. van Kuppevelds cohorts prior to the
completion of their own studies, as they requested. We have email communication that
confirms both doctors were aware of these findings before publishing their negative
papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive
patient sample to determine if his testing procedures could in fact detect XMRV in a
positive blood sample before he published his paper. We wonder why these materials
were not used in his study which also failed to detect XMRV.

"April surprise"?

 

[ukxmrv]

How will we tell, VL.

They have been pretty nasty so far

 

[HowToEscape?]

When there's a public letter such as this there's more meaning between the lines. The science could be handled privately.

Anyone on this board who is a working researcher care to comment on what is actually going on? The tone of the letter does not sound like normal communication in science; perhaps the audience is not intended to be professional, neutral researchers but someone or something else, such as a funding agency. I'm guessing there was quite a bit of back story here, and maybe private communication beforehand. Hope so.

 

[_Kim_]

Any coincidence that Annette went live with her April surprise the same day McClure's radio interview was posted? Smackdown.

 

[Doogle]

I believe this is a perfect response to the propaganda by van Kuppeveld, McClure, and Wessely in two articles in the BMJ that the Science cohort was from the Tahoe outbreak. I mean enough is enough dis-information. Annette Whittemore and the WPI deserves a lot of credit for holding off until they were more certain and then delivering a very well timed and worded blow to van Kuppeveld, McClure, and Wessely.

 

[Dr. Yes]

When there's a public letter such as this there's more meaning between the lines. The science could be handled privately.

Anyone on this board who is a working researcher care to comment on what is actually going on? The tone of the letter does not sound like normal communication in science; perhaps the audience is not intended to be professional, neutral researchers but someone or something else, such as a funding agency. I'm guessing there was quite a bit of back story here, and maybe private communication beforehand. Hope so.

I'm not a working researcher (haven't worked at anything in quite some time thanks to the-disease-that-must-not-be-named), but from what limited background I had before getting sick, I can tell you that this is NOT normal scientific communication at all. First of all you don't make it an open letter unless you are trying to make a point (like, "see everyone? WE are trying to cooperate.."), perhaps hoping to force an uncooperative group into action. And you only make it an open letter and include, while you're at it, damning information about two other studies if your aim is to hint to the rest of the world about what has been going on behind the scenes all along. (Though I still don't understand the delay yet.) Remember that Mikovits stated (in an email, I think?) that there is an effort going on to crush XMRV-CFS research in its infancy; the WPI may already think (or know) that these other groups aren't that interested in collaboration, or the WPI itself may not want to waste time with them (having plenty of better collaborations already). Whatever the case may be, this is a highly unusual, highly political situation (with internet advocacy and media gamesmanship in the mix!) the likes of which I don't think I've seen before in medical research.

We knew there was a lot going on behind the scenes, but I am still floored that reagents and samples were apparently shared - then ignored - and none of the parties disclosed this information (until the WPI did now). So much still doesn't make sense. Surely the Dutch researchers knew that some of their cohort had tested positive for XMRV in the WPI lab, and that it would therefore be politically dangerous to trumpet the defeat of the XMRV hypothesis?

Whatever. My head hurts.

 

[Ecoclimber]

Shame on the british medical journal

Some of the comments on a Rebuttal of Wessely's study from http://dancingwiththesandman.blogspot.com/2010/04/bmj-shame-on-you.html
More comments in the post.

You might also notice, if you were listening carefully, that the Dutch researcher said that he had to be fast, so he used frozen samples. Ask yourself why would he need to be fast? Why would he need to rush a study to publication? All three of the negative studies were clearly very clumsily put together, used ill-defined samples; i.e. used a conglomerate of patients presenting with fatigue but not necessarily ME/CFS. More specifically they did not use the same definition for ME/CFS, but used a definition that does not include one of the defining symptoms - post exertional malaise. Finally none of the studies made any attempt to follow the Lombardi studys methodology.

In terms of time spent in the peer review process, Wesselys study was peer-reviewed for a few days and published in a pay-to-publish online journal. In contrast the Lombardi study had a 3-month peer review period before publication in one of the worlds most renowned scientific journals, Science.

The three negative XMRV studies were all published in quick succession (along with Wesselys brazen commentary) in an effort to dampen and quieten the interest in the virus. Why else would the Dutch researcher (who also favours the psychiatric-lead approach and has much to lose if a virus is found to be the cause) say that they had to work fast? What would they have to gain by rushing a study?

 

[julius]

I am still floored that reagents and samples were apparently shared - then ignored - and none of the parties disclosed this information (until the WPI did now). So much still doesn't make sense. Surely the Dutch researchers knew that some of their cohort had tested positive for XMRV in the WPI lab, and that it would therefore be politically dangerous to trumpet the defeat of the XMRV hypothesis?

This is what blows me away. And Kerr's subjects tested positive too!! And it was all hidden. This is not about method or cohort or any of that.

This information is scandalous, really. And I have never actually used the word scandalous before in my life.

 

[Hope123]

I can tell you that this is NOT normal scientific communication at all.

Yes, I agree. Most types of these discussion do not take place openly although I think people would be surprised at the amount of politics within scientific research, some of it unjustified.

I just looked in Science's online index and there doesn't appear to be any letter about this although I can't get to "Corrections and Clarifications" without a paid subscription. Can someone check who has full-access?

IMO, it's good for the WPI to present clarifications and rebuttals but rather than just put it on their online website they need to do it with a letter or editorial to Science or another scientific venue. They're not going to get the attention of the people we need to attract in science/ government/ medicine by posting it on only their website. In addition, many in those fields will see it as a publicity stunt and this may not help with credibility.

I guess I'm asking for too much but when they said to look for something interesting in April, I was hoping it would be publication of another study advancing the science!

FYI: article on scientific openness coincidentally on Science website

http://sciencecareers.sciencemag.or...s_issues/articles/2010_04_09/caredit.a1000036

Re: the question of "non-contact controls". Non-contact controls are important because of past CFS studies which show healthy people who were friends, co-workers, family members of CFS sufferers had evidence of immune changes or ?viral fragments similar to CFS sufferers. If studies use contact controls, the evidence for the virus causing CFS is harder to discern with small sample sizes.

Also, I'm not a believer in conspiracies but talking to a few people who have worked with the government as scientists, they are bound by certain rules as to what they can do, say, disclose,etc.

 

[spindrift]

Uggghhh!!! Is it time to get a bodyguard for Judy Mikovits and Annette Whittemore???

 

[Stuart]

(Though I still don't understand the delay yet.)

Doc, it is called getting your ducks in a row!

 

[usedtobeperkytina]

yes, I thought of the glove slap: http://www.youtube.com/watch?v=P16J0ejFToY

But to me it is more of a "ball is in your court" statement.

Some comments....

I know in news coverage, that usually, a public challenge statement is after private communications. It is just courtesy to not air out exposures and criticism until after you try to work it out privately. The reason is once you make such a public statement, you put the person in the position to save face publicly. This impedes cooperation. And so if you actually want to get something accomplished, you try private cooperation first. So, I figure...

Could be they gave up after numerous efforts.

Could be they were waiting for McClure to make her own corrections in the Plos One. They finally decided they have had enough time and if McClure wasn't going to do it, they would.

Could be this is response to McClure's interview where she said Lombardi have been talking about cohort difference "ad nauseum." That is demeaning. You could almost see McClure's eyes rolling. Also, she said they rushed the study because there was unethical people, they heard and read on the Internet, offering tests for a fee before a standard test had been established and cause was established. That was a slap to WPI which has cooperated with VIP, which is offering tests for a fee. McClure also mentioned AZT, which has nothing to do with WPI.

Also, all these rumors that WPI won't cooperate, won't give reagents, etc. This needed to be corrected. After time to have those who know better say so, WPI said it themselves.

One of two things. Either all these other folks can't find it because of their arrogance or their agenda.

Or

WPI is seeing a ghost. They are seeing it when it isn't there. "Oops, what was that. It looked like a XMRV. Well, I'm gonna call it positive."

I saw in the beginning that some, I think McClure was one who said this in the lay press, speculated that WPI had contamination problems. But that argument has been settled.

So the only other explanation for those who criticize WPI is that WPI thinks they see it but they are seeing something else. Is anyone making this claim? No. I don't see anyone making this claim. So, Dutch and UK folks, is this the case? Or is WPI committing a science fraud. If you are right, then WPI must be wrong in their tests of the very same samples. So which is it? WPI is claiming to see something that isn't there or they are committing fraud?

By the way, I bet those Whittemore folks are hopping mad. I have seen Anne Whittemore interviewed multiple times. She is very politically correct, very courteous, very cooperative and yielding. Remember, she has been a lobbyist wife for years. She knows the whole "attract more from honey" thing. Remember her comments in front of CFSAC? For her to do this means she has been pushed to the edge.

Tina