XMRV CFS UK study #II

[Katie]

I don't have the time to do this but we need to change Orla's first post to make it clear who's study this is and that it's nothing to do with the Kerr/Mikovits joint grant.

 

[Gerwyn]

Quick note;

This is not "THE KERR" study which is due out in June. This one was done in Novemeber/December.

Ok here we go

Healthy controls equal mix of pregnant women people with kidney,liver disease and haematalogical disorders -these are healthy!!! The only thing that links them is xenotrophic endogenous retroviruses

For the PCR section only 48 cfs patients were screened all from St George's

The glasgow blood samples were taken 15 years ago

only single round PCR

XMRV clone sequence deleted and substituted in the env region---completely different drom other VP62 clones is this really xmrv clone at all monoclonal antibody response not specific to xmrv what virus did they find prize for the best answer!

full length xmrv clone needs two overlapping vp62 clones only one used here

In the section re virus production the idea was to transfect 293 T cells with clone plus other bits --cant be bothered to go into detail but basically look for reverse transcriptase indicating viable replicating virus

They "harvested" the cells after 18 hours.IT TAKES 7 days post transfection of293T cells to produce detectable levels of Reverse transcriptase and over 14 days to produce viable viruses Schlarberg R PNAS 2009.

If the virus was initially present they would never have detected it they did not allow enough time

 

[dmarie4301]

I really would like to know more about the patients that Kerr used in this UK study. I don't think using the Fukuda definition is going to yield many folks with "true" ME/CFS. It's just too vague. I have a friend who was tentatively diagnosed with CFS and then later discovered that all her symptoms were side effects of a statin drug (I think it was Lipitor). She'd been very tired, her muscles and joints hurt, and she had trouble sleeping, but her symptoms didn't get worse with exercise and activity - so I didn't believe she had CFS, but the doc did, since she met 4 of the minor criteria. She got "cured" by stopping the statin drug. In another case, a friend's daughter was thought to have CFS and it turned out that she had a chronic infection (a very nasty one) in her tonsils - a tonsillectomy cured her. In both cases, the doctors didn't really understand CFS and simply read the Fukuda "menu" and used CFS as a sort of wastebasket diagnosis. I don't know if that's the case with the latest UK study, but if it is, then it would be no surprise that XMRV is not showing up. The WPI's use of the Canadian Consensus criteria might be a big factor in turning up more cases of XMRV. Post-exertional malaise really needs to be a required symptom. The whole Fukuda "pick 4" out of 8 symptoms sounds more like a lottery game than a medical definition.

This is a very good point Dorothy. Dr. Judy and WPI definitely had things to say against the Wessley study. I will be posted at the internet to see what they say. If you are on Facebook, you can join WPI there, and get all the latest news.

 

[Quilp]

Thanks Gerwyn. on this basis would you say it was an 'accurate replication' ? I am confused. Dr Jonathan Kerr is the one responsible for the abnormal gene expression studies. If he is involved in this study, given his background in fiercely defending ME sufferers and attacking the psychiatric lobby, I cannot countenance the thought that this might be another Imperical College study. I think I am right, be I very much hope I am proved wrong.

Thanks, Mark

 

[Orla]

Katie I can edit my post later. I just was writing a quick note to highlight that Kerr and Gow had a good track record but I can alter how I said it

I have edited my original post. But Kerr seems to have been involved in the design of the study.

"JK, JS and KB conceived and designed the investigation"

 

[dmarie4301]

I don't have the time to do this but we need to change Orla's first post to make it clear who's study this is and that it's nothing to do with the Kerr/Mikovits joint grant.

Are we sure on this?? That would explain alot! I too, would think more time would be needed to do the research to come up with this conclusion that there is not connection between XMRV and ME. Plus the fact that Nutt and Main contributed samples....well, as has been mentioned....samples from who? And what was the criteria.

Im feeling better already, if this is indeed NOT the funded Kerr/Mikovits study.

 

[bullybeef]

I’ve been checking the small print here: http://www.retrovirology.com/content/pdf/1742-4690-7-10.pdf

It gives the paper number and dates:

ISSN 1742-4690

Article type Research

Submission date 11 January 2010
Acceptance date 15 February 2010
Publication date 15 February 2010
Article URL http://www.retrovirology.com/content/7/1/10

Is this Dr. Kerr’s collaboration study with the WPI? Or have they used his name to complicate the study? I thought Dr. Kerr’s study commenced in January?

Here are parts I picked out:

This work was supported (does this mean funded?) by the UK Medical Research Council.

After what I been reading in the Hooper document, should we trust anything supported my the MRC? And isn’t the National Cancer Institute funding Dr. Kerr’s study.

We are confident that, although we are unable to replicate the PCR detection of XMRV in PBMC DNA from CFS patients, our PCR assay is more sensitive than the published single round PCR method and should have possessed the necessary sensitivity to detect XMRV if it was indeed present

However, it is thought likely that the term CFS defines multiple diseases, and it remains formally possible that a fraction of these are associated with XMRV.

Why would they reason that CFS includes numerous diseases when it was the MRC whom encouraged this dustbin diagnosis? Surely the knew this before the began the study?

Nevertheless, XMRV has been detected in the control groups in multiple investigations, with the incidence varying between 1 and 6%. In our serological studies we have also identified neutralising activity against XMRV in around 4% of all the samples examined. Remarkably many (but not all) of the seropositive samples were identified in a relatively small group of blood donors within the SGUL cohort, possibly suggesting a local outbreak of infection. There is no evidence that this group are related or that they have a particularly high risk of acquiring a retroviral infection. Therefore, an outbreak of this kind seems unlikely…..We therefore consider these positives from healthy blood donors to be non-specific cross reacting responses.

It does say that XMRV maybe in the human UK population, but firmly NOT in ME. It does look like they’re trying to separate ME from XMRV, however they do seem to think XMRV is a potential problem.

 

[Gerwyn]

Thanks Gerwyn. on this basis would you say it was an 'accurate replication' ? I am confused. Dr Jonathan Kerr is the one responsible for the abnormal gene expression studies. If he is involved in this study, given his background in fiercely defending ME sufferers and attacking the psychiatric lobby, I cannot countenance the thought that this might be another Imperical College study. I think I am right, be I very much hope I am proved wrong.

Thanks, Mark

I cant understand why they didn,t use a whole xmrv clone use patients from one cente only and cock up the transfection oh and muck about with the clone in such a way as to probably lose the bit that makes xmtv xmrv

 

[Katie]

Katie I can edit my post later. I just was writing a quick note to highlight that Kerr and Gow had a good track record but I can alter how I said it

I hope I didn't come across as critical, the lead post on these kinds of threads get thousands of views so it's not unusual to refine the initial posts based on later discover facts and info. I'm just grateful you got the thread up so soon, you have your finger on the pulse for us!

 

[dmarie4301]

Wow Gerwyn!

Im impressed at how much people on this board know about microbiology and studies, etc. Someone made the point that WPI already realizes that PCR testing is not picking up XMRV very well....Judy Mikovits said she retested samples several times to get results (and they worked on this for two years!) Testing by PCR only once is not going to pick it up.

Basing a test on PCR just isnt reliable, it seems to me, now, since VIP wont even offer it now. And if this study didnt even give it enough time......why???? Is this part of the political machinery going on in the UK??? Are they afraid of being sued for mistreating patients if XMRV is the real culprit???

Cant wait for the powers to be....the ones we are trusting....to respond to this study.

 

[Ronan]

Just been speaking with a lab in Belgium who are going to be replicating the WPI study using the exact same techniques as the WPI. They were over in Reno last week to get a better idea of the techniques being used. They have seen this latest report and their repsonse to me 5 mins ago was this is more of a reason why the want to replicate the WPI results as soon as possible. Its all confusing at the moment, even for us who are following it closely. Earlier today i was of the thinking that it was the beginning of the end for XMRV and CFS but now im not so sure. The rollercoaster continues!

 

[Gerwyn]

I’ve been checking the small print here: http://www.retrovirology.com/content/pdf/1742-4690-7-10.pdf

It gives the paper number and dates:

ISSN 1742-4690

Article type Research

Submission date 11 January 2010
Acceptance date 15 February 2010
Publication date 15 February 2010
Article URL http://www.retrovirology.com/content/7/1/10

Is this Dr. Kerr’s collaboration study with the WPI? Or have they used his name to complicate the study? I thought Dr. Kerr’s study commenced in January?

Here are parts I picked out:

This work was supported (does this mean funded?) by the UK Medical Research Council.

After what I been reading in the Hooper document, should we trust anything supported my the MRC? And isn’t the National Cancer Institute funding Dr. Kerr’s study.

We are confident that, although we are unable to replicate the PCR detection of XMRV in PBMC DNA from CFS patients, our PCR assay is more sensitive than the published single round PCR method and should have possessed the necessary sensitivity to detect XMRV if it was indeed present

However, it is thought likely that the term CFS defines multiple diseases, and it remains formally possible that a fraction of these are associated with XMRV.

Why would they reason that CFS includes numerous diseases when it was the MRC whom encouraged this dustbin diagnosis? Surely the knew this before the began the study?

Nevertheless, XMRV has been detected in the control groups in multiple investigations, with the incidence varying between 1 and 6%. In our serological studies we have also identified neutralising activity against XMRV in around 4% of all the samples examined. Remarkably many (but not all) of the seropositive samples were identified in a relatively small group of blood donors within the SGUL cohort, possibly suggesting a local outbreak of infection. There is no evidence that this group are related or that they have a particularly high risk of acquiring a retroviral infection. Therefore, an outbreak of this kind seems unlikely…..We therefore consider these positives from healthy blood donors to be non-specific cross reacting responses.

It does say that XMRV maybe in the human UK population, but firmly NOT in ME. It does look like they’re trying to separate ME from XMRV, however they do seem to think XMRV is a potential problem.

I missed that the majority of XMRV positives comefrom the same place as all the xmrv negatives came from oh come on! nearly all the xmrv positives come from st george all the PCR assays came from ST Georges which were all negative for XMRV.If you look at the total figures the xmrv positives from st Georges must have been about 25%

 

[MEKoan]

I hope I didn't come across as critical, the lead post on these kinds of threads get thousands of views so it's not unusual to refine the initial posts based on later discover facts and info. I'm just grateful you got the thread up so soon, you have your finger on the pulse for us!

Yes, thanks again, Orla!

I don't think some kind of disclaimer would go amiss at the top of the first post. It is, after all, just a post and not any kind of official release of that study or the press release. The release uses such definitive language which seems to speak for the ME community that I'm sure most people would read no further.

Could we direct people to view the later conversation off the top?

Something like this:

* SOME VERY SERIOUS CONCERNS ABOUT THE VALIDITY OF THIS STUDY HAVE BEEN RAISED ~ THAT DISCUSSION BEGINS ON PAGE 6 *

or whatever page it does begin on. (Don't want to navigate away from this page and lose my post.)

Thanks again, Orla, for bringing this to our attention so that we could give it the necessary critique.

 

[dmarie4301]

Can anyone answer for sure that this is NOT the Mikovits/Kerr study we've been waiting for?

 

[anne]

George says that one is due in June. These are not the droids you're looking for.

 

[VillageLife]

I got an email from the NCI last Friday, I had alerted them to the IC study, this is part of there reply.
(to view the Q&A page on NCI XMRV) .there following words were... *In particular, Question 7 describes what the NCI is doing to address XMRV. *This includes developing suitable, well-validated tests to detect XMRV infection.

I wouldn't worry guys the NCI are basically telling me here there still working on making a blooming decent test and this was only Friday!!

 

[Katie]

I got an email from the NCI last Friday, I had alerted them to the IC study, this is part of there reply.
(to view the Q&A page on NCI XMRV) .there following words were... *In particular, Question 7 describes what the NCI is doing to address XMRV. *This includes developing suitable, well-validated tests to detect XMRV infection.

I wouldn't worry guys the NCI are basically telling me here there still working on making a blooming decent test and this was only Friday!!

Nice work Maybe these studies are running before they can walk. We need XMRV test studies before they start playing with our blood, too much rides on this.

 

[cfs since 1998]

I wouldn't get too worked up over this. 0/299 seems highly improbable considering we know healthy people have this. And as I understand it, they also used a spiked sample as a control and not a real positive control. And as has been said, Gow has been pretty adamant that there are no RNase-L irregularities in CFS. Just wait for more replication studies to roll in.

 

[faith.hope.love]

Maybe the prevalence of XMRV is more prominent in the US? Maybe ME in the UK is a completely different disease process than CFS in the US. Many people believe they are 2 separate illnesses, maybe they're right. Just as HIV started in Africa and spread globally, perhaps XMRV has not made its way to that part of the UK. Maybe there is more than one retrovirus that can cause the same constellation of symptoms. There can be a hundred different reasons why the study has not been replicated in the UK at this time. I think these findings are very preliminary, and so much more research has to be done. Our symptoms mimic SO MANY other disease processes, it's really hard to narrow it down and figure out who has what.

 

[thefreeprisoner]

Interesting point, faith.hope.love
I guess it could be a bit like the flu. There are loads of flu variants and they all cause similar symptoms but would have different traces and different vaccines, right?

Rachel xx