Lipkin bad news folks

[Esther12]

re this being bad news: I doubt many of us are surprised by the actual result, so that was not really news, good or bad. I was concerned by how this result would be covered in the press, and that seems to be bad news. Not nearly the worst: it could have been done in a way which was actively disdainful to patients, but a lot of the stories will give a misleading impression to casual readers about the current state of the science around CFS, and our understanding of the condition, so that's a bad thing. To some extent, we should probably be used to it.

The BWG study did not do so - it showed that high throughput blood screening methods would not work. It had a different purpose, and I regard it as irresponsible for so many scientists to take it as proof of non-association.

I'm pretty sure this isn't right Alex. There was a rumour that the BWG only tested for high throughput blood screening methods, but the paper did not say so - labs were to use whichever testing they thought would be best.

 

[pollycbr125]

paper finally out http://mbio.asm.org/content/3/5/e00266-12

 

[pollycbr125]

full text here http://mbio.asm.org/content/3/5/e00266-12.full

 

[RRM]

I'm pretty sure this isn't right Alex. There was a rumour that the BWG only tested for high throughput blood screening methods, but the paper did not say so - labs were to use whichever testing they thought would be best.

This is correct. I guess the confusion stems from the (initial) four phase set-up, of which only three were completed. One of the purposes of the fourth phase was to test high throughput assays. However, before you can do that, you need a bona fide set of "known positives". These known postives should of course be determined through the best possible assays (in phase 3).

Likewise, if you want to check whether your cheap telescope can reliably detect craters on the moon, you'll first want to establish where exactly the craters are, using the best possible technology. After you know where the craters are using your best tech, you can check whether your cheap telescope can detect most of the craters you know exist.

The problem with the BWG is that the best assays couldn't reliably spot any craters.

 

[Sasha]

re this being bad news: I doubt many of us are surprised by the actual result, so that was not really news, good or bad.

The more I think about the title of this thread, the more I think it's good news, not bad - we don't have a retrovirus, with all that that entails and instead of the failure of the XMRV research being a disaster, it's created a huge boost for ME research and we've got one of the world's leading virologists looking at our disease. A lot of good news has come out of XMRV for us - including the good news that the XMRV finding is null.

Of course there'll be some media rubbish today but there's some excellent coverage too, and we have the next, more important and wide-ranging Lipkin study to look forward to. I would imagine he'll be playing that up in any follow-up interviews.

 

[Gamboa]

I agree with Sasha: this isn't really bad news. Although I wanted them to find something I am actually pleased to know that I don't have a retrovirus that I could be passing on to other people.I'm also glad that the XMRV stuff has been put to rest and we can concentrate on other things.

The paper concludes it'd discussion with this: "We remain committed to investigating the pathogenesis of CFS/ME and to ensuring that the focus on this complex syndrome is maintained. Studies under way include the search for known and novel pathogens and biomarkers through deep sequencing and proteomics." They are not saying that there is no pathogen involved, just not XMRV and mLV's.

As you can see I am a "glass half full" kind of person . Hopefully the press conference will be give us cause for optimism.

Gamboa

 

[Esther12]

Of course there'll be some media rubbish today but there's some excellent coverage too, and we have the next, more important and wide-ranging Lipkin study to look forward to.

Actually - the media reports are pretty mixed. I think any good articles I read I just dismissed as 'fine, that's how it should be', and then moved on to being irritated by the bad ones. Seeing as there has been such a history of denying that real rather than imagined viral infections can lead on to CFS, despite prospective studies showing that they do, it is slightly galling to have headlines reflect this old prejudice, but things could have been a lot worse. I does also seem that the UK press are the worst (again).

 

[Snow Leopard]

The bad news is how this paper is being reported in the media, "Viruses not associated with CFS..." rather than the paper itself which is fairly straightforward/unexciting.

 

[biophile]

I am encouraged by this conclusion:

We remain committed to investigating the pathogenesis of CFS/ME and to ensuring that the focus on this complex syndrome is maintained. Studies under way include the search for known and novel pathogens and biomarkers through deep sequencing and proteomics.

 

[Daffodil]

it could still be a retrovirus, just not a mouse related one....?

 

[In Vitro Infidelium]

I really hope people dont go lashing out in Mikovits directing.. looking to blame someone for loss. Thou she was wrong, she still should be applauded as she did discover something new. How was she to know that most of her ME/CFS samples were a new contamination. It could of just as easily turned out to be the answer for our illness. The dice just rolled the wrong way. She's discovered something new .. quite possibly she could go and discover another new thing too and maybe next time it will prove to be a part of , or the answer for us.. .........

Which would be absolutely fine if Mkovits hadn't persistently denied that there was any possibility of the WPI results being because of contamination. The reality is that the theauthors of Lombardi etc 2009 - refused to recognise what their results were telling them - they can't now claim discovery of the true nature of XMRV- that honour goes to others. The strong possibility of contamination ( of reagents rather than samples as it happens) was clear from the outset - the authors failed to use any test of prior plausibility against their hypothesis and results and so missed vital conclusions. The high levels of positives for an otherwise rare retrovirus required an exceptional explantion for it to be causative in an illness which is disproprortionately diagnosed between genders. This should have alerted the authors of Lombardi et al 2009 that extreme caution was required - instead of caution they were cavilaier to the point of irresponsibility. The issue is not one of dice, science is fulfilled whether the result is positive or negative - the issue is what researchers do in response to data and whether or not they maintain professional scepticism - Mikovits, Lombardi and all sigualrly failed in that respect.

IVI

 

[Esther12]

I guess the confusion stems from the (initial) four phase set-up, of which only three were completed. One of the purposes of the fourth phase was to test high throughput assays. However, before you can do that, you need a bona fide set of "known positives". These known postives should of course be determined through the best possible assays (in phase 3).

Ahh... thanks. I never knew why anyone was confused about that. I think I assumed it was just some excuse Gerwyn had come up with, and then got passed along as fact.

 

[user9876]

I had hoped that in looking at ME Lipkin would have looked wider that just the xmrv and pmlv and hence come up with some clues as to what was going on.

However, he seems to be a very careful person and at first glance at the paper has run a well designed and careful trial with a very tight hypothesis. The subjects were carefully screened, a lot of blinding etc went on. I think the paper is speculation free sticking to what has been found. Having said that I don't understand the technical details. If nothing else this work may help raise the standard of rigour in ME research,

I hope that in the press conference when Lipkin talks of future work he will open up about which areas he believes are worth looking at.

 

[SOC]

I had hoped that in looking at ME Lipkin would have looked wider that just the xmrv and pmlv and hence come up with some clues as to what was going on.

He is looking at other pathogens in another study that's ongoing. We should get clues from that one, but we have to wait some more. **sigh*

 

[Seven7]

you can see activity on video now.

 

[Esther12]

the authors failed to use any test of prior plausibility against their hypothesis and results and so missed vital conclusions... The high levels of positives for an otherwise rare retrovirus required an exceptional explantion for it to be causative in an illness which is disproprortionately diagnosed between genders.

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.

 

[Christopher]

Which would be absolutely fine if Mkovits hadn't persistently denied that there was any possibility of the WPI results being because of contamination. The reality is that the theauthors of Lombardi etc 2009 - refused to recognise what their results were telling them - they can't now claim discovery of the true nature of XMRV- that honour goes to others. The strong possibility of contamination ( of reagents rather than samples as it happens) was clear from the outset - the authors failed to use any test of prior plausibility against their hypothesis and results and so missed vital conclusions. The high levels of positives for an otherwise rare retrovirus required an exceptional explantion for it to be causative in an illness which is disproprortionately diagnosed between genders. This should have alerted the authors of Lombardi et al 2009 that extreme caution was required - instead of caution they were cavilaier to the point of irresponsibility. The issue is not one of dice, science is fulfilled whether the result is positive or negative - the issue is what researchers do in response to data and whether or not they maintain professional scepticism - Mikovits, Lombardi and all sigualrly failed in that respect.

IVI

You mean it took them THREE WHOLE YEARS to be comfortable supporting turning a 180 on their initial findings? That's like a thousand days! My god, it's almost as if they're human.

 

[Sasha]

you can see activity on video now.

Surprisingly, yes - here:

http://cii.columbia.edu/blog.htm?cid=tM5E7V

It says the press conference starts at 10:30am EDT (i.e. in 5 minutes).

There's a thread specifically on the press conference here:

http://forums.phoenixrising.me/index.php?threads/lipkin-study-press-conference-18th-sept.19302/

Maybe any discussion of the press conference itself should be over there?

 

[Seven7]

Started

 

[alex3619]

I don't intend to go back and reiterate the arguments regarding the BWG, but Lipkin himself addressed one of the issues in the conference. Contrary to claims that optimal methods were used in the study, at least some XMRV researchers were unhappy that their prefered methods could not be used. The methods chosen were, to my understanding, tending towards those that support a high throughput blood test outcome. Other methods, such as culturing etc, were not used as they are too slow. Culturing is not useful in rapid blood testing. Such rapid tests often rely on either antibody testing or PCR. Bye, Alex