Lipkin bad news folks

[August59]

These headlines are depressing, and though they will cause some in the public and even services to shun us even more than they already do, the good thing is that Lipkin and others are already involved and commited to finding the cause of the illness. So, its important that we remember that and dont get too discouraged...hard i know, but still true.

We don't let them forget those commitments either!!!

 

[Firestormm]

XMRV and Prostate cancer are relevant. If its not in one its not in the other.

My interpretation of the reason that Lipkin refused to alow the prostate cancer question to go ahead was because Dr Mikovits stated publicly that she believed there was a public health threat from XMRV .
The prostate cancer researchers did not do that.

So she needed to publicly retract to reassure the public and they did not - hence the pressure on her publications. Prostate cancer and MLVs can be safely forgotten without the need for added publicity..

If research goes ahead on MLVs and prostate cancer we will know something is wrong.

http://medicalxpress.com/news/2012-09-erroneous-link-xmrv-virus-prostate.html

New study confirms erroneous link between XMRV virus, prostate cancer

 

[Firestormm]

Yes, I am glad he says this;
I feel very badly for Mikovits, [her co-author] Ruscetti and Harvey Alter [a hematologist at the NIH Clinical Center in Bethesda, Maryland, who led one of the CFS studies]. Mikovits in particular — she has lost everything. She can be wrong but she’s not a criminal. She has been honest in a respectful, forceful way and said that we have to conclude that we were wrong. You can imagine how difficult it must be, and I think she should be applauded. Lots of people wouldn’t have the balls to do that. She has come across as a scientist who really believes in the importance of truth.
http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

For me this question and answer was most revealing:

Why was this study necessary, given the failed replication efforts?

The only thing that matters is that the people who originally reported the finding had an opportunity to test it with a large, appropriately powered group. This was the definitive study and it was crucial that it be done properly.
Had we done this when Andrew Wakefield [the former medical researcher who proposed that autism was caused by vaccines] came out with the initial report5 about the measles, mumps and rubella (MMR) vaccine and autism, and had something this definitive, there are many more children who would have been vaccinated against measles during the ten years it took us to finally complete the MMR–autism work6. So I think it’s crucial that we don’t do things in a half-baked fashion, so we can test hypotheses and move on to new ones.

 

[Firestormm]

Viruses acquitted in chronic fatigue case

http://www.washingtonpost.com/natio...e863e6-01bb-11e2-9367-4e1bafb958db_story.html

But the debate is likely to end now, because the new study, in an unusual step, included Alter and Mikovits as collaborators and they agreed that no connection could be made between viruses and the disease. Both researchers were given blood samples independently and could not replicate their own findings from their initial studies.
“I applaud their courage,” said the study organizer Lipkin on Tuesday at a press conference that was attended by Alter and Mikovits. Lipkin speculated that the disease might be caused by several factors rather than a single agent, something that should be studied with modern methods. “It is simply not there,” said Mikovits of the suspected virus, “it is time to move forward now.”

 

[Firestormm]

The Slow, Slow Road to De-Discovery

Carl Zimmer

A few months into the controversy, I was at Columbia University to interview a scientist named Ian Lipkin for a profile for the New York Times. I focused mainly on his research linking viruses to new diseases. But Lipkin also does the reverse–what he likes to call “de-discovery.” When someone makes a controversial claim that virus X causes condition Y, Lipkin sometimes puts the claim to the test. Lipkin explained to me how it’s important to get everyone on board with such a replication study–both the original scientists and their critics. And he told me that he had launched a big study on XMRV, in collaboration with a team of scientists that included Mikovits, scientists who failed to find a link, and others. (I wrote more generally about de-discovery last year in the Times.)

More scientists investigated XMRV on their own and found still more evidence that the viruses had likely contaminated Mikovits’s cell cultures. Mikovits wouldn’t budge, even as Science retracted the paper in December 2011. Meanwhile, Mikovits got into a battle royale with her institute, getting locked out of her office, sneaking in a grad student in to get her notebooks (possibly to work on Lipkin’s study), and spending five days in jail.

Today, nearly three years after the start of the XMRV affair, the big study came out in the journal mBio. The scientists found no evidence of XMRV in people with chronic fatigue. Mikovits fully endorsed the conclusion.

I am curious how people with this condition view this finding. I find it pretty depressing. It’s taken up plenty of money along with the valuable time of lots of talented researchers. It’s raised and then dashed hopes. And all we have to show for it is the lack of a link. What causes chronic fatigue syndrome? Your guess is as good as mine.

It would be nice if there was a simple set of instructions for finding the cause, but that’s probably just a fantasy. Perhaps the best we can hope for is to avoid these expensive, time-consuming wrestling matches in the first place. That’s why I find projects like the Reproducibility Intiative so interesting. When scientists make mistakes, let’s find out as fast as possible.

 

[JPV]

 

[anniekim]

Can someone send that disgusting Mail article to Lipkin then? Ask Lipkin to respond.
I am serious.
I'd do it but I have no IT skills.

It might interest him to see how his science is distorted for political and personal ends in the UK.

It is not our responsibility to fight this - we are patients.
Medicine should be responsible for policing itself to stop this psychopathic abuse of patients.

This debate should go on between professionals of equal standing.
The psychiatrists ought to be responded to by their scientific peers.- they would be more difficult to bully and abuse with impunity.

I too really hope that Lipkin reads this diabolical piece. I know the article is part of a blog and will not be widely read but what i find worrying is the author describes himself as a leading science writer in the U.K. He needs to be better informed about the science.

 

[anniekim]

I just got to the part Fire - had to rewind and make notes. He said there was a tremendous amount of immune reactivity in a study they were doing in the late 90s trying to find a connection the Japanese had reported with a virus that starts with the letter B (sorry). He said 2/3 - 3/4 of the patient group they were studying had poly-clonal (sp?) B-cell activation. "They are sick. We don't know why they are sick, but they are sick." In response to those who were trying to paint this as a psychosomatic (his word) disorder. It's at right around the 29:00 mark.

Good stuff.

Does he mention that 2/3-3/4 of the patient group they were studying had poly-clonal B cell activation in the press conference? I've listened to most of it but cant find him saying that. Does he say it near the beginning? Many thanks

 

[pollycbr125]

there was a tremendous amount of immune reactivity in the late 1990's found why are we still in the situation we are in in 2012 . ME could have been solved years ago we could have had treatments by now . The way we have been treated over the past umpteen decades by the research community is unforgiveable . No wonder The treatment of pwme in the UK is so diabolocal when paths forward which could have been followed have been left to fall by the wayside

 

[snowathlete]

Anniekim - its definitely in the first half of the recording cause I only watched that far and heard that bit.
I think it was about half way through the first half?

 

[In Vitro Infidelium]

I don't see how they could have come up with a meaningful assessment of plausibility for their initial findings though. There's so much uncertainty around CFS, and even more so the potentially unrepresentative patients whose samples they initially used... there was also a lot of uncertainty around XMRV at the time. That they thought 7% of the health population were infected would mean that this was not a rare retrovirus, and would allow for all manner of possible explanations for the gender differences in CFS.

I'm really sceptical of the value of emphasising 'plausibility' in areas of science where there is so little clear and objective evidence or real understanding - it leaves too much room for guesswork and unwarranted assumptions imo. A genuine commitment to blinding and ensuring that control and patient samples are treated in the same way - that's a much simpler way of ensuring that a studies results are useful. When we can't even get the basics right, trying to somehow calculate plausibility seems a waste of time imo.

A ‘prior plausibility’ test is about formally testing an hypothesis against what is known – or what is taken as ‘known’ within the context of an hypothesis or piece of research. The starting point would be the basic Laws of science – an hypothesis about M.E/CFS that requires (for some bizarre reason) the re-writing of Newtonian physics would not progress because it lacks plausibility. In the case of Lombardi et al 2009 the question is not an issue of an offence against scientific Laws but about consistency within the hypothesis being tested. While there is necessarily greater latitude in terms of plausibility – anything which suggests implausibility to should lead the researchers to express caution.

The gender differential characteristic of M.E/CFS is well established and to date no researcher has questioned the data that supports the existence of the differential, although the precise ratio involved is not established. As the authors of Lombardi et al did not expressly question the gender differential at the outset, it only reasonable to expect that they accepted it as an established characteristic of the illness they were studying.

While gender differentials in other diseases are recognised, none have been ascribed to preferential infection – that is: across broad populations pathogens are as able to exploit male bodies as they are female ones, always allowing that differences in societal roles allow for great exposure of one gender above the other. EBV is associated with MS, a condition which shows a significant gender differential – but EBV is present throughout the human population, virtually everyone gets infected at some point, from which we have to conclude that MS is a condition of response not of exposure (note the point re: response made by Lipkin). If M.E/CFS were an illness of single pathogen causation then to explain the characteristic gender differential, such a pathogen would need to be near ubiquitous across the human population –or a process of preferential infection would be required, something which tests plausibility because no such process is yet known. The key point here is not that question of plausibility defeats the results, but that it should raise caution on the part of any researcher. Exceptional results require exceptional explanations.

The 67% versus 4% positives in the Lombardi et al 2009, made ubiquity of infection highly implausible, and in the light of gender differential, the study required exceptional explanations for: processes of differential exposures, non symptomatic infection versus symptomatic infection and implied preferential infection by gender. All of this should have been a cause for exceptional caution on the part of the authors. That caution should have been discussed within the paper and, had it have been, would have stood as a substantial impediment to the marketing of any test for XMRV.

IVI

 

[Snow Leopard]

The 67% versus 4% positives in the Lombardi et al 2009, made ubiquity of infection highly implausible, and in the light of gender differential, the study required exceptional explanations for: processes of differential exposures, non symptomatic infection versus symptomatic infection and implied preferential infection by gender. All of this should have been a cause for exceptional caution on the part of the authors. That caution should have been discussed within the paper and, had it have been, would have stood as a substantial impediment to the marketing of any test for XMRV.

IVI

Just like any other pathogen, the case for XMRV in CFS could have been both the existence of the pathogen itself and an unusual host response, which could be influenced by gender.

I'm sorry, but it was very much in the realms of plausibility, hence why it was published in Science.

Scientists can make mistakes, it is time to move on.

 

[biophile]

A few of the news articles allude, as usual when controversial issues are covered, that there are "ME terrorists" who will automatically reject the results as flawed, scream conspiracy theories, and harass scientists, (because we as a stupid community of somatizers, need evidence for infection to match our ideology?).

However, I have noticed that the online ME/CFS community has overwhelmingly accepted the results of this paper. It is strong reiteration of "old news", as urbantravels put it. The proportion of people who actually expected the paper to confirm a role for XMRV/pMLV appears to have been very small, as does the number of people who are still skeptical about the results, and I'm certainly not conflating them with "ME terrorists" just for having doubts and combing through the details.

 

[anniekim]

I too really hope that Lipkin reads this diabolical piece. I know the article is part of a blog and will not be widely read but what i find worrying is the author describes himself as a leading science writer in the U.K. He needs to be better informed about the science.

I looked up Dr Lipkin online and found an e mail for him on the Columbia Uni website, it probably is just a department e mail but nonetheless I did send a quick e mail with a link to the article in the slight hope he might read it. If others want to write the e mail address is wil2001@columbia.edu. Perhaps if a few send an email, it may get to the attention of Dr Lipkin? Even if it does he may not do anything but it would be good if he was aware of it.

Lipkin to my delighted surprise kindly replied to my e mail and said the article is a perversion of their work. So he is aware of it, thankfully.

 

[anniekim]

Does he mention that 2/3-3/4 of the patient group they were studying had poly-clonal B cell activation in the press conference? I've listened to most of it but cant find him saying that. Does he say it near the beginning? Many thanks

Thanks, will go and have another look, must have missed it somehow.

 

[Sasha]

Lipkin to my delighted surprise kindly replied to my e mail and said the article is a perversion of their work. So he is aware of it, thankfully.

Thanks for bringing that to his attention, anniekim - I had been too bashful (or stupid!) to do it. I'm glad to hear him say that. Really, shame on Hanlon.

 

[Sasha]

Comments are up now on Hanlon and he's getting a slamming - I'm glad they at least got through moderation. Looking for mine now...

...and found it. Unusually for me, I am one of the angrier posters! Quite surprised to find myself the biggest ranter.

 

[user9876]

Thanks for bringing that to his attention, anniekim - I had been too bashful (or stupid!) to do it. I'm glad to hear him say that. Really, shame on Hanlon.

I thought in a way its a strange article. It made me wonder why he would write it. He seems vaguely informed in that he knows there were articles in the BMJ and Lancet. He clearly hadn't understood Lipkins work, the XMRV debate, the critisism of the PACE trial etc - I would say to the extent that his ramblings made him look stupid. Makes me wonder if there is some behind the scenes briefing going on by Wessely et al

 

[Sasha]

I[...] I would say to the extent that his ramblings made him look stupid. Makes me wonder if there is some behind the scenes briefing going on by Wessely et al

It's classic psych lobby stuff - all in the mind, no stigma in mental illness, patients should be grateful for psychiatrists, actually PWME are terrorists, pity us poor psychiatrists who are the ones to be sorry for, etc. etc.

 

[ukxmrv]

It'd just attention seeking behaviour. Having heard that there are some ME patients who are vocal about the disease he is enjoying getting people riled. Every response is enjoyed by the writer because he knows that there will be no repercussions and no wider audience. It's for his personal pleasure.

We've seen so much of this over the decades in the UK.