XMRV CFS UK study #II

[George]

Hey, JSpotila

So what's the official thoughts from the CAA??

 

[Funkster]

From WPI Facebook site:

Whittemore Peterson Institute: "We are working on new information that will be posted on our main website. Thank you for your patience. "

 

[creekfeet]

Standing by for Further Information

WPI just posted on their Facebook page:

We are working on new information that will be posted on our main website. Thank you for your patience.

Meanwhile... as I'm reading through this thread, two points assail me:

- selection criteria / diagnosis of patients providing samples may have been flawed.

- samples may have been outdated.

It seems to me is both these objections prove true, we need to be very vocal in demanding that better standards be met in all studies. Also, we need to keep on offering ourselves as test subjects, which those in the US can do through the link in this thread:

New Federal Government Studies Registry

 

[starryeyes]

The problem is, I don't trust our government either. I'm not giving them my blood. I'll happily be in any study for the WPI, but that's it. At least for now.

To me, these 2 UK studies are so full of holes they may as well have not taken place. They don't count in my mind except for the fact that they're being touted as serious attempts to find XMRV in PWME and are being used to discount the findings of XMRV in the US in 3 different labs.

It's obvious to me that these 2 studies in the UK are out to keep ME/CFS firmly in the psych camp.

 

[Cort]

Its hard to imagine Dr. Kerr - a real champion for us and the author of several important gene expression and other papers on CFS - is trying to put CFS patients into a category he's not even qualified to do research on - ie psychology. Dr. Kerr collaborated with Dr. Mikovits to get a big NIH grant and he's been collaborating with them and Dr. Enlander on a different XMRV study (with patients, finally) from the US.

I wish that was the problem but I don't think it is.

 

[cfs since 1998]

I don't think we should try to read minds and determine what the motivations of the authors were. The simple matter is XMRV is difficult to find unless you look for it hard enough, and they appear not to have tried very hard.

 

[creekfeet]

This positive note got bottom-paged on page 11 and since I saw no response I think it's possible that in the flurry of posts it went largely unseen.

Several people have mentioned the NCI and other federal efforts to replicate the XMRV results, and develop a reliable blood test. From Dr. Suzanne Vernon's article on the January 6, 2010 PLoS One study:

The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group has been established to delineate the research studies that should be undertaken to evaluate whether XMRV represents a risk to the safety of the blood supply. As a first step in this evaluation, analytical panels are being developed by the National Heart, Lung, and Blood Institute Retrovirus Epidemiology Donor Study-II (REDS-II) that will allow for multiple laboratories to standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA. Once methods are standardized, these same laboratories plan to test coded panels of blood samples obtained primarily from healthy blood donors and from CFS patients who have been reported to be positive for XMRV.

We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Thanks, jspotila, for what appears to be one more source of hope!

~ Creek

 

[jspotila]

So what's the official thoughts from the CAA??

Just posted here: http://www.cfids.org/xmrv/021510study.asp

 

[fresh_eyes]

Thanks for posting the link to Dr Vernon's response, Jennie. It concludes:

So what is it going to take to get a proper and robust replication study done? Intense attention to detail. Because patient selection has been a potential confounding factor in the two negative studies, the scientific community must understand the clinical characteristics of the CFS patients who were XMRV positive in the Science paper. CFS is a chronic, heterogeneous illness with many possible subtypes each made even more complex by common co-morbidities such as irritable bowel syndrome, fibromyalgia and depression. The lack of universal subtypes, or staging criteria for severity and duration of illness makes comparisons challenging. Many CFS patients undergo a variety of treatments in order to get relief from this debilitating disease. Treatments, especially those that directly act on the immune system, may also affect the life cycle of XMRV and detection of the virus.

Standardization of testing methods must also progress. As we reported in January (http://www.cfids.org/cfidslink/2010/010603.asp), the U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is developing analytical panels that will allow multiple laboratories to standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA. Once methods are standardized, these same laboratories plan to test coded panels of blood samples obtained primarily from healthy blood donors and from CFS patients who have been reported to be positive for XMRV.

Until methods are standardized and the scientific community is provided information about the specific characteristics of the CFS subjects (and controls) who tested positive in the Science paper, be prepared to read more negative studies. Hopefully the Science investigators will make this information available before interest in XMRV being associated with CFS fades and becomes yet another foiled attempt at solving CFS. Achieving scientific consensus on the role of XMRV in CFS certainly warrants more research and greater collaboration, as do so many other important discoveries being made.

 

[Esther12]

I'm surprised that some people are ready to assume that those not finding a link between XMRV and CFS must be doing something wrong. It's not been proven that there is a link between CFS and XMRV, and we still need to wait for more research into this. Other studies are continuing, but it could well be the WPI who have gotten something wrong.

In the Pipeline have a post too: http://pipeline.corante.com/archive...ronic_fatigue_syndrome_more_negative_data.php

 

[jspotila]

Thanks for posting the link to Dr Vernon's response, Jennie. It concludes:

Dang, fresh_eyes! You read faster than me. I was just coming back to post those three paragraphs here! :innocent1:

 

[flex]

Originally Posted by fresh_eyes
Yes. Or an even easier solution, as suggested by Dr R at the Virology blog: the authors of the conflicting studies could simply exchange samples they've already tested. I see no reason for the WPI and the Kerr group not to go ahead and do this, considering that both are "on our side," as it were; perhaps this is what we should push for? Opinions?

I don't think this solves anything. We all know what the result will be. WPI will detect it and the UK labs won't. Then we're in exactly the same place.

Spike 20 further samples and the game is up if the UK cant find them

 

[fresh_eyes]

Dang, fresh_eyes! You read faster than me.

*Cue western music, blows smoke from gun barrel.*

 

[vdt33]

This is all just too strange. This has to be political -- a continuing coverup that goes higher than Kerr or the CDC. Watch the documentary "Collapse" on the Pay Per View (On Demand) TV channel. Europe and the US are in an economic, Peak Oil, and Climate Change crisis and are trying to cut back on health care and other spending. "Collapse" puts a lot of things in perspective.

 

[Orla]

teejkay wrote: It's obvious to me that these 2 studies in the UK are out to keep ME/CFS firmly in the psych camp.

Whatever about the first study I don't agree about the second.

This is what Kerr wrote regarding the Nice Guideline Development Group (GDG) in the UK:

The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials which support the use of psychological treatments"

(Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St Georges University of London, 11th August 2008)

This quote is taken from:

Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided forthe High Court Judicial Review of February 2009, Margaret Williams, 22nd July 2009.

Margaret Williams explained the context of the above comment and others like it: "Over twenty renowned ME/CFS experts provided Statements in support of the Judicial Review of the NICE Guideline on CFS/ME heard in February 2009 in the High Court in London. They were specifically written in support of the challenge to the NICE Clinical Guideline on CFS/ME and they express concern about the recommendation by NICE that the only management of ME/CFS should be CBT and GET (the same interventions that are the subjects of the Medical Research Councils PACE Trial)."

http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

 

[fresh_eyes]

ERV weighs in:

http://scienceblogs.com/erv/2010/02/xmrv_and_chronic_fatigue_syndr_9.php#more

(FYI, not too offensive, by ERV standards.)

 

[julius]

Originally Posted by fresh_eyes
Yes. Or an even easier solution, as suggested by Dr R at the Virology blog: the authors of the conflicting studies could simply exchange samples they've already tested. I see no reason for the WPI and the Kerr group not to go ahead and do this, considering that both are "on our side," as it were; perhaps this is what we should push for? Opinions?





Spike 20 further samples and the game is up if the UK cant find them

So, if WPI tests the UK samples correctly, and they come up positive, what will be the conclusion? 'We need to develop and standardize the testing methods.' But we already know that. And it's already being done.

I don't agree that the game would be up. WPI can't do the validation on their own paper. And besides, the UK groups (well, one of them anyways) and other detractors will just say that it's proof the WPI is contaminating samples.

I just don't see how doing it would change the course of what's happening.

Having said that though, once the testing has been proven reliable and standardized, then yes, definitely go back and test the UK samples and rub their dirty doggy noses in it to boot.

But right now it's just a waste of time and money. Stick to improving the methods for now.

 

[Adam]

ERV weighs in:

http://scienceblogs.com/erv/2010/02/xmrv_and_chronic_fatigue_syndr_9.php#more

(FYI, not too offensive, by ERV standards.)

Personally I'm ignoring her. Don't give her, her 15 minutes of fame.

 

[starryeyes]

I think Vernon explains what's going on very well. I realize Kerr is against psychologizing ME so I retract my former statement about both tests wanting to prove it doesn't exist in us.

 

[Bob]

Another reason for hope...

One other thing about this latest study...
Am I correct to say the following?:
The researchers concluded that they had found no XMRV in the control group or the ME patient group.
(They saw anti-body activity in 4% of the 'normal' control group but they have decided that these weren't XMRV antibodies, for reasons I don't understand.)
So they found no XMRV whatsoever... nothing...

Well, this gives us even more reason to hope because...
WPI have already confirmed that they've tested UK patients and that the same results were holding up...

So, like with the previous Wessely study, with all of our combined knowledge and insight, we can deduce that the latest study was flawed, and the researchers simply were not competent enough.
I know that Jonathan Kerr's name was on this study (and we love him)... but let's not read too much into that... we don't know anything about his involvement in this study, and it clearly wasn't his own study under his complete control.

We need to wait until some real research studies come out, rather than these 'pretend' replication studies.
Whatever happens, we will get to the bottom of the XMRV virus now that it has been found... and then we can all get tested for it...
XMRV doesn't even have to be shown to be related to all cases of ME... it wouldn't stop us getting tested, and treated once that they have found a treatment.
We might all even decide that we haven't got ME, but we got XMRV-related disease.

There is much hope... But we have to be patient! (and i really know how hard it is to wait for this!)
I imagine that we're not going to get any firm answers until the end of the year at the earliest... it will take a year to carry out good quality, thorough research...
so we have to keep on carrying each other through this difficult year, and keep on supporting each other, like we do so well!

Bob