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

[denlander]

Dr Enlander replies

I am pleased with the recent invigoration in the ME/CFS debate. What is the present state of our knowledge ?
Have we discovered the causal mechanism of the disease ? Not yet

Is XMRV / MLV related to the disease ? Judy Mikovits original paper created great excitement, it was an initial step. To confirm or deny the finding requires a double blind, split sample, multi lab independent study. As yet this has not been done either by either side.

Is XMRV / MLV a contaminent ? It is not clear that contamination is a simple explanation. The serology in the Science paper was positive, this could not be expained by lab contamination. Positive serology occurs in the patient's immune system which produces Igg antibodies against the virus. In the prostate cancer study, 4% control patients were positive, yet the latest studies did not find any positive results. This was never explained.
Conspiracy ? I am not paranoid about the publications, academic differences of opinion are not uncommon and I can accept that. In this research, there are certain curious publication timing issues and certain methodolody changes. The 120 carefully selected Canadian Concensus/ Fukuda criteria samples that were sent to London from New York were not totally tested, only 10 of the specimens were tested. Jonathan was under academic pressure and I did not press the point at that time. Dr Stoye, was a co author, but he has not responded to my email asking for information. I am not asking antagonistically what has happened to the samples. The sample personally cost me $2000 to collect and transport, no grants were available to Jonathan. All I would like to know is whether the samples were properly stored and will be tested.
I have for many years believed that ME/CFS in an immune system dysfunction. What causes the dysfunction ? We are still not sure. Perhaps a methylation cycle/ glutathione abnormality.

How do we treat it ? Various suggestions have been made . Kutapressin, Hepapressin, Ampligen, Isoprenosine, Immunoprop etc have all been proposed. There is no universal treatment, we use a kutapressin analogue, Hepapressin and Immunoprop which act on the methylation cycle.

Derek Enlander MD
New York

 

[pictureofhealth]

Thank you for this clarification Dr Enlander.

I'm assuming the Blood Working Group is the closest we have come so far to 'a double blind, split sample, multi lab independent study', although I don't know if it can be considered truly 'independent'. Everyone works for someone, so I guess an honestly independent approach would be unlikely. Also, some degree of knowledge of ME is required to get the cohort approach right.

But it would certainly be good to test more than just the 6 (was it really only 6?!) patient samples that were used in phase II of the BWG!

I'm astonished that Dr Stoye would not have the courtesy to reply to a straightforward query from a fellow professional.
One wonders what pressures these academics are under in the UK, and from whom?

 

[VillageLife]

To confirm or deny the finding requires a double blind, split sample, multi lab independent study.

I believe the UK study, was sent to 2 labs and was done at the NCI.
It was also blinded.

 

[cigana]

I am gutted by this news. If only there were an investigative journalist interested in this. He/she could talk to one of Dr Kerr's young researchers - they'd probably know on the grapevine what happened to him and would be more willing to talk.

 

[Mark]

I believe the UK study, was sent to 2 labs and was done at the NCI.
It was also blinded.

That's the WPI's UK study you're referring to, and that's the problem of course: what we need is confirmation from somebody else - that's the independent bit: independent of the WPI.

 

[Mark]

Welcome to Phoenix Rising forums Dr Enlander!

And I'll add my vote of thanks to you for posting here to clarify the situation, and also for the video that this thread's about - it's a wonderfully balanced and invaluable summary of the curious history of opposition to the WPI's finding of XMRV in ME/CFS.

The failure to use the samples you provided, and the failure of Dr Stoye to respond to your questions about those samples, sounds discourteous to say the least. I hope you'll continue to press for answers to those questions: the failure to use your samples sounds typical of the peculiar behaviour in the UK throughout this saga, and I'm sure we'd all like to hear an explanation from Dr Stoye as to why they didn't do so, and what became of those samples.

 

[*GG*]

Yes, Welcome to Phoenix Rising forums Dr Enlander!

GG