How the UK scientifc community tried to bury the notion that XMRV es related to ME/CF

[Rita]

http://networkedblogs.com/cuNSh?a=share&ref=nf

 

[free at last]

Wish he was my doctor, thanks for posting Rita. After everything i have learned since my time of joining pr forum. it seems encouraging to me that dr Enlander talks numerouse times about a immune dysfuntion which although i suspected was true as a younger man, its only of recent times ( regardless of xmrv ) that i really started to piece the illnesses together in my personal life, as being somekind of a immune dysfunction, when i say immune dysfuntion i dont just mean a persistent virus, i mean on many different levels and for possibly many different reasons, and many different onset scenarios for different patients. that we are talking somekind of dysfunction in both a overactive and under performing immune system, that im also starting to belive has some elements of auto immune disease ( that could vary in strength and time ) meaning sometimes subtley attacking ones own body tissues, and others quite profoundly. I belive we are getting closer to the truth. And xmrv for a lot of patients really could be the key that joins these puzzles together, and makes everything being discussed so much more likely or possible. So much so that as Harvey Alter has said even if xmrv turned out not to be it ( something i dont belive ) that im starting to feel sure, a lifelong virus or viruses, is at the heart of the immune dysfunctions we are seeing. Judy has said the politics will soon be at a end PERIOD and i belive she knows our time is coming, look out for a paper in the coming months, as i suspect thats a hint for us all. As paul mcartny said let it be

 

[SilverbladeTE]

really is great to hear a doc who cares and doesn't have his sphincter between his earholes!

all the more reason to REBUILD HADRIAN'S WALL AND ELECTRIFY IT!

(*is north of it and would offer to all the folk in Cumbria and Yorkshire, option to build the wall south of their county borders and keep us all safe from the Weasels!*)

 

[Wonko]

Hadrian's wall maybe? or is one of your neighbours called Ian and a bit on the 'ard side lol

 

[SilverbladeTE]

lol, sorry, yes "Hadrian's Wall"
sigh
I type a lot slower than I can think and bloody ME has screwed it up much worse

 

[cigana]

Does anybody know what reason Retrovirology has given for publishing 4 papers in one issue?

Thanks,

Mark

 

[pictureofhealth]

Citation bias?

 

[Esther12]

Does anybody know what reason Retrovirology has given for publishing 4 papers in one issue?

Thanks,

Mark

It's quite normal for journals to run a series of papers on the same subject in one issue.

I don't think Enlander's fair to so relentlessly characterise the negative studies as 'denial'... the evidence surrounding XMRV is still ambiguous, and if XMRV is realted to CFS it does seem that their are genuine and surprising problems with its accurate detection.

 

[pictureofhealth]

Was it Dr Enlander who sent 100 ME patient blood samples to the UK, for XMRV testing, which mysteriously weren't tested by Stoye, Bishop et al and when he enquired as to why, no answer was promptly forthcoming. No wonder he is suspicious about the recent hurried spate of papers. It does seem like an extraordinary wall of denial and 'conspiracy' (ie. 'Conspiracy' as in the Oxford English dictionary definition of the word, as in a bunch of people 'plotting', or agreeing to act together for one agreed purpose and end. Are papers usually published in unison in this way? - Certainly not 4 together, it is either an extraordinary and unlikely coincidence, or a pre meditated conspiracy. No mistake about it).

 

[Esther12]

Was it Dr Enlander who sent 100 ME patient blood samples to the UK, for XMRV testing, which mysteriously weren't tested by Stoye, Bishop et al and when he enquired as to why, no answer was promptly forthcoming. No wonder he is suspicious about the recent hurried spate of papers.

Yeah. He mentioned that in the video. He seemed to think it was due to Kerr losing his job, and the trouble that caused. Who knows though?

If they'd turned up no positive case amongst all the UK patients of Kerr's they tested, I can understand them thinking it was unlikely to be a cohort thing.

 

[WillowJ]

It is true that journals often have a theme, and for that reason it's not at all unusual that they would publish the four papers together. What is unusual is that the press releases going along with them would be so unscientific in drawing conclusions that went outrageously far beyond the data.

Also I think there was another XMRV paper which did not support the contamination theory which published in Retrovirology the next week, which was submitted during the same time frame as the other four, and it's unusual that this would not have been published along with the contamination papers.

i.e. XMRV is a legitimate theme and whatever papers they had for that would publish together, but XMRV contamination is a biased theme, and it's not right to screen the XMRV papers they have on hand to choose only those favoring contamination.

And yes, what happened to Enlander's samples and what, if anything, that had to do with the "academic pressure" Kerr was under and why he lost his job is something I would like to hear about, because that smacks of academic bias as well.

 

[cigana]

Thanks. It seems we don't know for definite then - i.e. the journal has not stated its own reasons.

I hear a lot about Kerr losing his job - but he still appears on the St George's website - can someone clarify when he lost his job? Cheers

 

[garcia]

It's quite normal for journals to run a series of papers on the same subject in one issue.

Yes but usually they present a fair and balanced perspective, not a one-sided whitewash.

 

[ukxmrv]

He lost his job during the Summer 09. His month was up at the end of one month and they simply did not renew it. Not sure how much notice he received. The last time someone spoke to him (that I know of) he was working in a UK hospital. On another group someone mentioned that they had emailed him on his last day at the old job. He said that he doubted he would ever be able to work in ME research again. Very sad.

 

[Enid]

Very sad indeed - it certainly appears here that genuine research is blocked - we call it the "the Weasal Block". But now despite them and thank heavens international research and findings show their irrelevance. Take those sorts years if ever to catch up.

 

[Esther12]

Yes but usually they present a fair and balanced perspective, not a one-sided whitewash.

I'd have certainly like to see Retrovirology try to get some comment from one of the pro-XMRV researchers about, even if the editors themselves are sceptical of XMRV. The Wellcome Truse paper was challenging the very notion that XMRV was a human pathogen, and getting some response to that shouldn't have been too hard.

 

[JayS]

It's quite normal for journals to run a series of papers on the same subject in one issue.

I don't think Enlander's fair to so relentlessly characterise the negative studies as 'denial'...

You are certainly entitled to your opinion, but so am I: 'fairness' would permit a far more relentless characterization than he offers here.

I could say more, but I'll leave it at that.

Was it Dr Enlander who sent 100 ME patient blood samples to the UK, for XMRV testing, which mysteriously weren't tested by Stoye, Bishop et al and when he enquired as to why, no answer was promptly forthcoming. No wonder he is suspicious about the recent hurried spate of papers. It does seem like an extraordinary wall of denial and 'conspiracy' (ie. 'Conspiracy' as in the Oxford English dictionary definition of the word, as in a bunch of people 'plotting', or agreeing to act together for one agreed purpose and end. Are papers usually published in unison in this way? - Certainly not 4 together, it is either an extraordinary and unlikely coincidence, or a pre meditated conspiracy. No mistake about it).

Conspiracy is a word that raises all sorts of alarms. In most cases, understandably so. I think it's fair to say that there are so many suspicious unanswered questions and strange happenings that it's worthy of further consideration.

Yeah. He mentioned that in the video. He seemed to think it was due to Kerr losing his job, and the trouble that caused. Who knows though?

Since Kerr lost his job 6 months after the publication, it would seem there is a misunderstanding here.

what happened to Enlander's samples and what, if anything, that had to do with the "academic pressure" Kerr was under and why he lost his job is something I would like to hear about, because that smacks of academic bias as well.

So would I, and my blood was among those samples, as was my wife's and that of others I know as well. For now I think we've heard all we're going to on that matter.

I hear a lot about Kerr losing his job - but he still appears on the St George's website - can someone clarify when he lost his job? Cheers

He lost his job during the Summer 09. His month was up at the end of one month and they simply did not renew it. Not sure how much notice he received. The last time someone spoke to him (that I know of) he was working in a UK hospital. On another group someone mentioned that they had emailed him on his last day at the old job. He said that he doubted he would ever be able to work in ME research again. Very sad.

Actually it was this past August. This is the second time I've seen reference to him losing his job summer '09, but it's not the case, and the XMRV study took place late in '09 into early 2010.

What he's doing now I'm not really sure, but I have a feeling it's relatively menial compared to what he's done over the past several years.

 

[Mark]

Esther12: "Yeah. He mentioned that in the video. He seemed to think it was due to Kerr losing his job, and the trouble that caused. Who knows though?"


Jay S: "Since Kerr lost his job 6 months after the publication, it would seem there is a misunderstanding here."

I don't think so: Dr Enlander appears to know what's actually gone on. I have no special insight on this issue, but the impression I got from the video is that the "academic pressure" was ongoing during the time that the trial was being conducted, and that it culminated in Dr Kerr's dismissal some months after publication. Dr Enlander seemed to be very careful with his wording on that point.

It's a major blow to the ME/CFS community to learn that Dr Kerr is (what was the quote) "unlikely to work in ME research again". That seems odd if it means he's specifically unlikely to work in ME research specifically but might do other research work. The whole thing is inevitably going to fuel more conspiracy theories, but in the absence of any evidence as to what really went on, I really don't think we can conclude anything - and it does rather sound like we're never going to know, I'm afraid.

 

[JayS]

The "it" I refer to is the issue of the lost samples. Perhaps I myself read it wrong, but that was what I took from Esther12's post which was in reply to a quote that was mostly about the samples. Unless that's incorrect, that event preceded Kerr's firing by many months. Point being that whatever happened could not have been as a result of Kerr losing a job he held for several months after publication. Don't want to make a big deal of it but that was how I read it. If I'm wrong about that, then I'll assume responsibility for that. Considering how wrong I consider the comment regarding Dr. Enlander's lack of fairness, I wanted to be very clear.

The "academic pressure" was in effect for a long time, yes. And the rest of your post seems right on.

And yes, it is odd that Kerr may continue in research but specifically not ME research while at the same time it's not really that odd at all if you think about it.

That's a travesty, but it's also reality, conspiracy or no.

If you want to completely discount the notion of conspiracy, there is the matter of suspending disbelief that Kerr never submitted a research proposal that could reasonably be considered worth funding. I don't know details, but it doesn't take a rocket scientist. The MRC never funded him or anyone else, period. I cannot swear that Kerr applied, but I do believe I was told that he had in fact done so, and more than once, over the years. Someone may be able to verify that, I don't know.

In any case, add Kerr to the list of those whose careers have been ruined over ME/CFS research.

 

[ukxmrv]

Sorry Jay, you are right. Yes, Dr Kerrs last day was Friday 13th August 2010. I don't know how much notice he had that his contract would not be renewed.

We UK patients, did hear in March 2010 that Dr Kerr had pulled out of a study being paid for by Invest in ME. This was to be on NK cells/XMRV.

The MRC manages to get out of releasing failed research proposals. Several FOI requests have gone to them. They claim that they are protecters the proposers of the studies (i.e. from commercial interests etc).

I don't know is happening to Dr Kerr's place on the new CFS/ME panel.

At the 2007 Invest in ME Conference, Dr Kerr repeated his message:

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

“We have applied several times to the MRC and on each occasion we were invited to submit those applications and on each occasion we got scores typically of 9, 8 and 3 – the 3 score was obviously from a psychiatrist who was complaining about our way of enrolling the patients, the criteria we had etc…David Tyrell told me the MRC will never fund biomedical research in CFS because they are in the thrall of the psychiatrists – so far, he has been right”.