Article: What Science Giveth Science Try to Taketh Away: Science Journal Asks WPI To Retract XMRV CF

Article: What Science Giveth Science Try to Taketh Away: Science Journal Asks WPI To

You can view the page at http://forums.phoenixrising.me/content.php?435-What-Science-Giveth-Science-Taketh-Away-Science-Journal-Asks-WPI-To-Retract-XMRV-CFS-Paper

 

Look more carefully at what you wrote...Lo/Alter never said that they found XMRV;When I asked Dr. Alter if he knew why he said because it wasn't there...They found pMLV's...yes,.they felt they could support the central theory of Lombardi (I don't know if they feel that now) but they did not find XMRV.

um, thanks Cort but I know exactly what I wrote... maybe you should read it again? :innocent1:

bang head on wall, but science isn't about the number of studies... early science is always difficult as we sort out what is important. could be, xmrv is not important, or could be, methods are important. since so few people have even tried to replicate methods, and even some of those that had a good try did not use the exact methods or the WPI-recommended reagents, we still don't know the answers!

 

I find the emphasis on numbers of negative studies as the basis for retraction to be disturbing. Never have the lines been blurred between science and politics so much. Doesn't it only take one correct study for something to be correct? And how many times does it need to be repeated that there hasn't been a single true replication done?

um, thanks Cort but I know exactly what I wrote... maybe you should read it again? :innocent1:

bang head on wall, but science isn't about the number of studies... early science is always difficult as we sort out what is important. could be, xmrv is not important, or could be, methods are important. since so few people have even tried to replicate methods, and even some of those that had a good try did not use the exact methods or the WPI-recommended reagents, we still don't know the answers!

 

I increasingly get the feeling that attempts are going on to bury the connection between MLVs and illness.
So from Corts post, Dr Alter said he could not find XMRV "only" PMLVs. Wouldn't PMLVs also be pathogenic? Didn't Alter and Lo clearly assume that they were when writing their paper? So this is not reassuring is it? So why the attitude that there is nothing more to investigate?
Even supposing that XMRV were a lab created retrovirus from only the 90s - which I think is far from proven - what is to stop other similar MLVs from being implicated in earlier outbreaks of this disease? Retroviruses recombine all the time. JM says that she finds many related MLVs in her patients.

There are so many possibilities to explore. Why these quick denials and then the urgency to move on to another hypothetical virus? One the scientists clearly would feel happier with.

Why this obsessive focus on XMRV. Other MLVs in patients are likely to be pathogens. They certainly are in mice!
So even if you disproved XMRV that is only the beginning of the questions needing answers.

These are really quick and dirty responses.

 

I am also saddened by this request for retraction because it means that the road to a 'cure' might be a very long and winding one. I have had mild to moderate ME/CFS for 5 years now, I'm in my 40s, have 2 children and, although my professional life has been interrupted a number of times, I am still able to work part-time. Yesterday, an acquaintance of mine told me about her 18-year-old daughter who's been experiencing profound fatigue for 3 months. She wasn't able to complete her college exams. The battery of tests she's had point to no apparent biological problems. As she was telling me about her daughter's symptoms (over the phone) tears started welling up in my eyes because I knew what all this meant for her daughter. I knew she wanted to hear that her daughter was going to be OK; I could hear the fear in her voice. I told her not to jump to any conclusions yet; her daughter should rest as much as possible and wait at least another 3 months to see if her symptoms go away. After hanging up I cried, and prayed this young girl won't have to bear the hardship of an illness that medical professionals, as Dr. Goldman says, have very little respect for.
Fatima, in Montreal

What a beautiful, sensitive post Fatima! It brought tears to my eyes too and a prayer for that young girl's future!

 

Here is the first paper:

http://www.sciencemag.org/content/e...ract?sid=49f390a0-8119-421b-bf83-edb632e90f73
"No Evidence of Murine-Like Gammaretroviruses in CFS Patients Previously Identified as XMRV-Infected"

No-one has made reference to your post Snow Leopard.

Contamination theory again is it?

 

Research needs to go into the mitochondrial & cellular energy/ATP production defects that are DOCUMENTED in ME/CFS and the interplay with the immune system dysfunctions that are also DOCUMENTED. XRMV is a red herring at best - a minor player if at all that would only be significant if it did play a part in CFS because of the already existing mito & neurommimune dysfunction. Better just to cut your losses and move on. Putting all your eggs in the XMRV basket is only going to delay the disappointment further.

I agree that these systems (mitochondrial & cellular) have probably gone awry in M.E/CFS however these things don't just happen out of the blue. Infectious, genetic & lifestyle causes often underpin pathological changes in the human body, so a retroviral basis is well within the limits of possibility!

 

Lo/Alter never said that they found XMRV;When I asked Dr. Alter if he knew why he said because it wasn't there...They found pMLV's...yes,.they felt they could support the central theory of Lombardi (I don't know if they feel that now) but they did not find XMRV.

I'm not aware of Lo and Alter ever reporting that they have found any XMRV either. (But they may well be looking for it.)

We don't know the full picture about XMRV, and how exactly it potentially affects humans.

It might turn out to be the case that XMRV is just one variant in a range of different MLV-like human viruses.

Judy Mikovits now likes to refer to HGRV's rather than XMRV to highlight this possibility.

If this is the case, then PMRV fits into this picture.

Alter says that he considers XMRV and PMRV to be different variants of the same virus.

Now Judy has also detected PMRVs (or pXMRV, as she calls it), and she has now also detected other HGRV's. I think she has detected the friend strain of 'spleen focus forming virus' which is actually incorporated an XMRV sequence in it, so it is closely related to XMRV. (I'm not certain about the details of all this yet - I have to catch up with some reading - so please don't quote me!)

 

I increasingly think that all the debate is focussed as much on money as science. The WPI would have patents on their "discovery". No more money to be made out of XMRV then! But disprove it and find another and bingo! rich for life!

 

Meanwhile, millions are suffering. All we want is honest science, not this spin and political manoeuvring. Dr Jamie's blog post contains links to the responses from Annette Whittemore and Judy Mikovits here: http://treatingxmrv.blogspot.com/2011/05/sad-day-for-patients.html (second paragraph).

Annette's response shows just how different the high profile papers have been, both in method and in patient selection. Cort, would you consider studying it?

We have yet to see a replication study, which is the way to prove or disprove Lombardi et al 2009. So far we have had one validation paper, Lo et al (discounting La Caixa), and a series of failed attempts, using different methodology and cohorts, that mean nothing.

 

um, thanks Cort but I know exactly what I wrote... maybe you should read it again? :innocent1:

bang head on wall, but science isn't about the number of studies... early science is always difficult as we sort out what is important. could be, xmrv is not important, or could be, methods are important. since so few people have even tried to replicate methods, and even some of those that had a good try did not use the exact methods or the WPI-recommended reagents, we still don't know the answers!

Here's a quote from Dr. Alter that was recently reported

The Health Blog asked too. Through an NIH spokesperson, Alter replies that the PNAS paper did not link XMRV to chronic fatigue syndrome but rather the larger family of polytropic murine leukemia viruses to which XMRV belongs. The paper never reported finding XMRV itself. Thus the finding that XMRV may be a contaminant traced to cancer cells in mice does not pertain to the finding published in PNAS, Alter says. http://blogs.wsj.com/health/2011/06/...ated-research/

 

Meanwhile, millions are suffering. All we want is honest science, not this spin and political manoeuvring. Dr Jamie's blog post contains links to the responses from Annette Whittemore and Judy Mikovits here: http://treatingxmrv.blogspot.com/2011/05/sad-day-for-patients.html (second paragraph).

Annette's response shows just how different the high profile papers have been, both in method and in patient selection. Cort, would you consider studying it?

We have yet to see a replication study, which is the way to prove or disprove Lombardi et al 2009. So far we have had one validation paper, Lo et al (discounting La Caixa), and a series of failed attempts, using different methodology and cohorts, that mean nothing.

I was surprised to see how many differences there were and good for them for pointing out the problems they see. I am going to try and run it by some people.

I just saw, by the way, that the National Cancer Institute has posted on their webpage a statement that the XMRV results in both CFS and prostate cancer are due to contamination - which really surprised me. They and much of the research community apparently do think that these differences, although I grant there are many, are important. Its a puzzle that's for sure...

 

I hope Hillary Johnson, or someone, is writing this all down! With all the twists, turns, powerplays, life and death stakes, crimes and misdeeds, this will be an even better book than Osler's Web!

 

Did a journal ever ask Dr. Stephen Straus to retract his amateur psychiatry paper on the psychopathology of CFS?
"Lifetime History of Psychiatric Illness in People with Chronic Fatigue Syndrome"

Cohort: about two dozen selected by Dr. Straus on undefined criteria from a larger number referred to him.
Data: resulted from patient interviews and opinions of researcher.
Premorbid conditions included simple phobias. No consideration that premorbid depression could result from organic illness. Two subjects reported to be alcoholic, in an illness especially noted for alcohol intolerance. Results extrapolated to about a million people.

Press release sent to 500 reporters and organizations.

 

re 2:42 am
"I increasingly get the feeling that attempts are going on to bury the connection between MLVs and illness."

How do we know that MLVs cause illness, much less ours? There seems to be some link in prostate cancer, but that's open to question with the new understanding of subtle contamination in the testing materials themselves.

As a group we've definitely been treated like dirt. But don't blame the virologists. Look at who owns the show not the actors on stage.

 

Here's a quote from Dr. Alter that was recently reported

"Alter replies that the PNAS paper did not link XMRV to chronic fatigue syndrome but rather the larger family of polytropic murine leukemia viruses to which XMRV belongs"

yep, that's what I said, too

 

I'm glad you found the information gathered in Annette's reply to Science interesting, Cort. We will be interested to read about the responses you get.

HowToEscape, you say

How do we know that MLVs cause illness, much less ours? There seems to be some link in prostate cancer, but that's open to question with the new understanding of subtle contamination in the testing materials themselves.

and yet there is reams of research going back many years available online showing murine leukemia retroviruses cause disease, particularly neurological disease and cancers, in animals. Here's three to be going on with.

G L Shen-Ong and L Wolff; Moloney murine leukemia virus-induced myeloid tumors in adult BALB/c mice: requirement of c-myb activation but lack of v-abl involvement; J Virol. 1987 December; 61(12): 37213725. PMCID: PMC255984

A Jinno-Oue, S G. Wilt, C Hanson, N V. Dugger, P M. Hoffman, M Masuda,3 and S K. Ruscetti Expression of Inducible Nitric Oxide Synthase and Elevation of Tyrosine Nitration of a 32-Kilodalton Cellular Protein in Brain Capillary Endothelial Cells from Rats Infected with a Neuropathogenic Murine Leukemia Virus Journal of Virology, May 2003, p. 5145-5151, Vol. 77, No. 9?DOI: 10.1128/JVI.77.9.5145-5151.2003

Jolicoeur P, Rassart E, Des Grosellers L, Robitaille Y, Paquette Y and Kay DG. Retrovirus-Induced Motor Neuron Disease of Mice: Molecular Basis of Neurotropism and Paralysis Advances in Neurology, Vol 56:43:481-493

And let us not forget Lombardi 2011, where the random forest algorithm picked out the XMRV+ ME/CFS patients by their cytokine profile.

 

In my opinion the attacks on the WPI are political in nature and motivated by a fear of the consequences of disease caused by XMRV and related retroviruses. As others have pointed out here, there is a bias in the "evidence" which is accepted which is unfair to the WPI.
My opinion is THE WPI ARE RIGHT AND EVERYONE ELSE IS WRONG. There, that is so much simpler than all this explaining and analysis!

I think Ill get a t-shirt made.