Khaly's latest: CAA-XMRV: Tell Me What It Means To ME?

[Samuel]

Not necessary to keep up with the details, Tina.

But advocacy is always needed.

 

[Cort]

I think Dr. Vernon may have seen potential problems with one study and maybe different possible problems with another and perhaps a few different other possible problems but after three studies for all of them to be wrong you'd have to have every issue or most issues be problematic and that's probably becoming a bit of a statistical problem. What are the odds that every study just happens to be doing the wrong thing for XMRV?

She also seemed to think that aside from the old blood and cohort that they used really stellar techniques- better than the first study.

Its pretty clear she doesn't buy the 'you have the culture first' argument or the viral loads are too low for their methods argument.

(I must say I'm kind of with usedtobe - this stuff is burning me out. I need an XMRV break. )

 

[starryeyes]

If the cohort didn't have CFS in the first place then these labs are just spinning their wheels. If you don't apply the Canadian Definition then you probably don't have PWC in your cohort. They can come up with 10,000 negative studies for XMRV in what they call "CFS" and still have done no scientific analysis of actual PWC. Meanwhile more and more people here and elsewhere on the web who actually do have CFS are testing positive for XMRV.

Some PWC don't want to believe that CFS is caused by a retrovirus. Some are scared of having a retrovirus and some are scared they don't have a retrovirus.

 

[Gerwyn]

The problem for me is that while Gerwyn's explanations are very convincing, except for that other patient group no one has voiced the same criticisms. Racienilli or whatever his name is, has not. Neither did the ME Association. Neither did the CFIDS Association. Nor has MERUK said anything. All these people are in touch with retrovirologists. None of them are concerned about those issues. That's why, even though they seem convincing, I'm gonna wait and see what happens.

Khaly's blog is not convincing at all to me. The issue about the Oxford definition is overdone. Nothing in that definition says anything about excluding patients with organic diseases other than those that cause severe fatigue. My apologies but it is standard procedure in medical studies to exclude diseases that can cause similar problems in research studies. The Oxford does not exclude all organic conditions.

Nor does the definition say that people with central symptoms are excluded. This is retrovisionist, wishful thinking on the part of overheated activists. The main problem with the definition as I see is that it doesn't require specific symptoms and it allows more mood disorders in. But it DOES NOT exclude CFS patients. I posted the definition on the Forums - just read it.

It would be great of if that much maligned definition could be the cause of XMRV's problems but I don't see how it can. Its a false reed.

Khaly's and Mary's blogs may read well and be full of sound and fury but when I take a close look at them I don't find much there.

British investigators have put forward an alternative, less strict, operational definition which is essentially chronic fatigue in the absence of neurological signs [but] with psychiatric symptoms as common associated features. [12]

Cort--this quote comes from one of the Oxford four a co-author A.S David

If this does does not exclude patients with ME/CFS I dont know what does.

How do you tell the fatigue associated with clinical depression and ME.

To qualify for a diagnosis of CFS/ME our UK governmen's guidelines state that there must be fatigue which gets worse with mental or physical effort

.Patients with depression must be excluded.Ergo the Oxford criterea does not diagnose ME?CFS

The 150 odd patients with chronic fatigue in the dutch study(The clinician involved has gone on record as saying that this is the only symptom he uses) were all diagnosed in 1991 some two months after Oxford were published

Completely ignoring Holmes.What did this guy use before? how did he diagnose so many in such a short time.?

The possibility of retrospective diagnosis needs to be investigated.

A number of people have commmented on the characteristics of the patients in the Dutch study I dont know where this info came from because there is no info in the Dutch study.

The WPI took a very long time to produce its work.these studies have all been cobbled together in 51 DAYS

The trialists clearly did nor read the science paper and used techniques contrary to published science.

Contrary to Kurts opinion PCR alone cannot locate integrated Viruses This is vwhy the modern culture PCR technique was developed.


The dutch study did not use this method despite copious quantities quantities of published evidence.


I am sure they are competent but in this case they did not do their homework so vital to a study of this kind

.why because they were probably in too much of a rush

 

[starryeyes]

Yeah Gerwyn, they're in too much of a rush to prove the WPI and the Cleveland Clinic and the Institute for Cancer are all wrong about XMRV in us.

Hey, I like the way you're spacing your sentences Gerwyn. That's way easier for me to read and comprehend. Thank you.

 

[jspotila]

In Dr Vernon's first two statements she argued strongly for true replication studies. In her third response she didn't. What's changed her perspective here? The published research has not changed we still have no true replication studies, we actually have even more reason to believe that these blood studies are unreliable because of Sharma's findings presented at the retroviral conference. And yet Dr Vernon's tone has changed quite dramatically. I don't get it.

Neither Dr. Vernon nor the Association has changed perspective on the critical need for replication studies, as well as validation studies. From Dr. Vernon's article, bold added by me:

Whether XMRV is in any way associated with CFS will be the subject of further investigation. But these investigations must be designed appropriately and impeccably. Investigators from several U.S. institutions reported outcomes from recent XMRV studies at the 17th Conference on Retroviruses and Opportunistic Infections (CROI 2010), including infecting and establishing chronic XMRV infection in rhesus monkeys. Interestingly, XMRV was localized to the reproductive and lymphoid organs in these animals.

Time and precious resources are being consumed by studies in which the results are controversial ones. The CFIDS Association of America is working diligently to foster the type of well-designed studies of CFS and XMRV that will provide definitive grounds for moving forward on this hypothesis so that history does not repeat itself. True to our mission statement, we will continue to lead, support and conduct research with integrity, innovation and purpose in order to make CFS widely understood, diagnosable, curable and preventable.

 

[jspotila]

Question: What is the CAA doing to combat the DSM5 drafts?

From the Association's March CFIDS Link:

The Diagnostic and Statistical Manual for Mental Disorders (DSM) is being revised by the American Psychiatric Association (APA). The proposed revision, DSM5, has drawn media coverage and close scrutiny since its release on Feb. 10. Creation of a new category called "Chronic Somatic Symptoms Disorder" is of particular concern to CFS patients and organizations. The Association is seeking input from outside experts and will submit a review of the biological abnormalities in CFS to APA. The APA will accept public comments until April 20.

 

[jspotila]

I think I'm confused over Dr Vernon's response because she calls for appropriately and impeccably designed studies but also seems to suggest that the first three studies were approriately and impeccably designed because they used "accepted" definitions.

The cohort definition is only one part of any study design. As we've seen in the three negative studies, methods are also a huge component. I think if you look at everything the Association has published on these studies, it is clear that none of them are replication studies and none of them are impeccable.

 

[Gerwyn]

The cohort definition is only one part of any study design. As we've seen in the three negative studies, methods are also a huge component. I think if you look at everything the Association has published on these studies, it is clear that none of them are replication studies and none of them are impeccable.

Has anyone got any access to dr Vernon directly or indirectly