Could this be an early XMRV? The JHK virus

[Bob]

And continuing the earlier discussion, I keep forgetting about insightful Gkikas Magiorkinis' letter to the Lancet, which demonstrates that we can't possibly be aware of all unexpected possibilities. This is another possibility that the Paprotka paper failed to consider, which again demonstrates that their 'conclusion' cannot possibly be conclusive:

Once a virus is endogenised, it is forced to follow the evolutionary rate of the host. Since XMRV is integrated in cell-lines the virus evolution is restricted to the host's pace of evolution, and viral descendants have none or minimum sequence diversity. Thus, if a contaminated product, previously cultured in cell-lines, is administered to people then the infections would provide the evolutionary patterns reported by Hue and colleagues.4 If the immunological data reported by Lombardi and colleagues5 are correct, then we need to trace the common source for these infections to prevent possible public health concerns. Products from cell-lines should be the first candidates.

http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70081-0/fulltext

 

[alex3619]

Like I said, this is gettig purely semantical. I think that it was clear that I didn't mean that this made the conclusion absolutely right and impossible to falsify, or something to this effect.

I don't understand how you think the Lipkin study is really testing an implication of the Paprotka et al study. How exactly do you feel this is happening in Lipkin's study?

I also genuinely wonder why you then think the BWG study did apparently not succeed at this. Can you explain to me why you find this?

Hi RRM. There is a semantic component to this. However, as I explained, the problem I am trying to address is how things are perceived. We, as patients, perceive it one way, and become angry and argumentative. The media, in their "expert" role as food critics or whatever, will take comments more literally, and report their simplistic interpretation as though it is fact. Few in the media have the expertise to dig deeper - one who does is David Tuller for example, and Hillary Johnson has studied these issues in depth too. One of the things affecting ME and CFS politics is unwary comments by scientists. I will be naming names, and showing pattern in my book, entirely from the published media record and online videos - not from PR. The majority of those who I see doing this are psychiatrists, but several from the biosciences are doing it too. So I am trying to change the reporting of science so that it reflects the reality to everyone, not just a specific subgroup of the scientific community.

Paprotka et. al. implies that its all contamination, from a common source, arising in a specific cell line. If the Lipkin et. al. study shows very probable association, the contamination argument is revealed as very improbable. If on the other hand the CFS-XMRV association claim is shown to be very improbable, this is entirely in keeping with Paprotka et. al., its what you would predict if they were right. So its not a direct test of their argument, but its a test of an implication of their argument, a secondary hypothesis, using a strong study.

The BWG, according to my current recollection, did not completely allow for freedom of choice in studying the samples. They had freedom within certain parameters, as the focus was on high throughput blood analysis. These have been cited previously in various threads. Lipkin et. al. do not have the same limiting parameters, and its a larger study, giving us more confidence of the results. I consider the BWG to be only suggestive. I consider Lipkin et. al., provided the results are not equivocal (such as borderline probability results) to be a much stronger study.

Bye, Alex

 

[Ecoclimber]

Heya ECO,

I always assumed research was kind of a free market where researchers could go and try to raise funds to do whatever research they want. Either that or government agencies like the NIH, CDC, and FDA would decide....

Are you aware of some kind of research concensus board that decides who/who doesn't get research dollars for ME or something?

I would really like to know how this process works so maybe the research efforts could possibly be influenced in a way that gets results now, in my lifetime. It seems that most research efforts don't get any tangible answers.

For instance, wouldn't it be great if a study was done to improve the understanding of methylation? That would be a good research effort that could potentially benefit many in the near future.

Thanks,
Markmc

Hi Mark,

I hear you. Normally, researchers have to go through their own IRB process specifically if they are a non-profit institute. If they want to apply for a NIH grant, Cort pretty much outlined the process in his front page article located here: http://phoenixrising.me/archives/6895.

Given all that, the NIH receives specific budgetary funding from HHS, Health and Human Services, per fiscal year via Congress. This is where the politics and the big boys play. Oversight for HHS and ultimately, NIH is through the House and Senate appropriations committees and the Congressional members who sit on those committees. Both committees must agree on the exact budgetary amount otherwise it will go into sub committee until there is reconciliation between the House and Senate version. Major lobbying groups from various business, medical, professional sectors lobby each Congressional member that sits on the appropriation committee to 'educate' them concerning important projects that would benefit their interest. For instance the Health industry somewhere around $500 million dollars, Pharmaceutical industries $240 million, Insurance industry $87 million is paid for lobbying Congress. All toll the amounts to $3.2 billion dollar per year of special interests money. I don't have all the facts and figures at hand, but you can research it here.
[URL="http://www.opensecrets.org/lobby/top.php?indexType=c"]http://www.opensecrets.org/lobby/top.php?indexType=c[/URL]

So yes, as you can see, there is no way to play with 'big boys' in exerting influence. ME/CFS is kind of behind the eight ball sort of speaking, so you have to develop other unique and creative strategies to acquire funding.

Eco

 

[currer]

Eco, I think one of your links http://okeefe-lab.blogspot.com/2011/12/next-gen-sequencing-provides-evidence.html is referred to in this post by good Dr Snyderman on Jamie's blog.
It looks like research funding isnt so great if it looks like giving unwanted answers to controversial questions.

Michael Snyderman MD said...
There is a virologist at the University of Pittsburgh whom I contacted because the scientist had identified MLRVs in prostate disease. The scientist emailed me that fellow virologists had advised not to do this research and that no journal would be willing to publish positive results. Another prominent researcher who had early positive results with MLRVs confided to me that post-doc fellows were taken off any project related to MLRVs so as to protect their careers.

I find this very frightening for us, meaning people that probably have MLRV related disease. There are a only a very few brave scientists left like Dr. Lipkin willing to continue research to identify a virus.

Michael Snyderman, MD

 

[currer]

Is it just me, Eco or are you keener on retroviral involvement in CFS all of a sudden?

Could there be rumours from "confidential sources" going round?

Remember that we already KNOW that the retrovirus in ME is not going to be VP62, despite the false trail arduously laid over recent months by the denialists.

"XMRV" is something different? and in PWME? Surprise me.

 

[RustyJ]

Eco, I think one of your links http://okeefe-lab.blogspot.com/2011/12/next-gen-sequencing-provides-evidence.html is referred to in this post by good Dr Snyderman on Jamie's blog.
It looks like research funding isnt so great if it looks like giving unwanted answers to controversial questions.

Michael Snyderman MD said...
There is a virologist at the University of Pittsburgh whom I contacted because the scientist had identified MLRVs in prostate disease. The scientist emailed me that fellow virologists had advised not to do this research and that no journal would be willing to publish positive results. Another prominent researcher who had early positive results with MLRVs confided to me that post-doc fellows were taken off any project related to MLRVs so as to protect their careers.

I find this very frightening for us, meaning people that probably have MLRV related disease. There are a only a very few brave scientists left like Dr. Lipkin willing to continue research to identify a virus.

Michael Snyderman, MD

I agree. The pressure being applied to researchers has always been top-down, not from a handful of patients. It is laughable that patients are being blamed for diverting the course of research. Those attempting to lay the blame with patients seek to do so for personal gain and to ferment division between groups of patients.

Note, research and funding has been controlled, diverted for decades, not for 12 months. Retroviral research in particular has been stymied for decades. Are patients to blame for how De Freitas was handled? Are patients to blame for millions of US taxpayers dollars being siphoned off or decades of government mismanagement? Are patients to blame for incompetence in failing to detect tissue contamination in so many cells lines, and the reluctance to thoroughly test for integration into humans?

 

[markmc20001]

Hi Mark,

I hear you. Normally, researchers have to go through their own IRB process specifically if they are a non-profit institute. If they want to apply for a NIH grant, Cort pretty much outlined the process in his front page article located here: http://phoenixrising.me/archives/6895.

Given all that, the NIH receives specific budgetary funding from HHS, Health and Human Services, per fiscal year via Congress. This is where the politics and the big boys play. Oversight for HHS and ultimately, NIH is through the House and Senate appropriations committees and the Congressional members who sit on those committees. Both committees must agree on the exact budgetary amount otherwise it will go into sub committee until there is reconciliation between the House and Senate version. Major lobbying groups from various business, medical, professional sectors lobby each Congressional member that sits on the appropriation committee to 'educate' them concerning important projects that would benefit their interest. For instance the Health industry somewhere around $500 million dollars, Pharmaceutical industries $240 million, Insurance industry $87 million is paid for lobbying Congress. All toll the amounts to $3.2 billion dollar per year of special interests money. I don't have all the facts and figures at hand, but you can research it here.
[URL="http://www.opensecrets.org/lobby/top.php?indexType=c"]http://www.opensecrets.org/lobby/top.php?indexType=c[/URL]

So yes, as you can see, there is no way to play with 'big boys' in exerting influence. ME/CFS is kind of behind the eight ball sort of speaking, so you have to develop other unique and creative strategies to acquire funding.

Eco

Heya Eco,

Wholly guacamole. $3.2 billion for lobbying?

Ok I get it, so is it fair to say that Congress has been "educated" that ME/CFS research is not in their best interest? Therefor no funding has been given to the area over the years? Any ideas which of those big groups you mentioned does most of the educating when it comes to ME/CFS research?

Can you suggest anyways the community can develop unique and creative financing for other areas in research that may not conflict so much with the interests of the big groups you mentioned?

Be great to identify areas of research that would stay out of the way of that lobbying money you descibe, yet also do the average people some good.

Maybe there is some common ground between the big groups, and the average little researcher(trying to make progress) that you are aware of? For instance, maybe there is some area that the community and this big overseeing group has in common and we could work happily on to make a little progress? The juggerenauts might not want to work on project "A", and the little ME/CFS researchers might not to work on project "B", but maybe there is a project "C" where everybody has a little common ground where progress could be made?

Or maybe you sense things have turned the corner after 25 years, and this main group or corporate juggernauts have turned a new leaf and wants to find answers? Or is it the creative financing research money angels have appeared and figured out a way to circumvent the big lobbying monies?

Thanks
Mark

 

[currer]

So, Eco you are suggesting that the pharmaceutical and insurance industries do not want funding into ME/CFS? And lobby congress on that basis?

Thus it is difficult or impossible to fund research into the biomedical basis of ME?
Private research institutes (As we hoped the WPI would be) may be necessary?

And spurious "research" is heavily promoted? and publication of undesired research findings pilloried, blocked and forcibly retracted? and the researcher lose their career?

This sounds familiar. - - - What do you think we can do to get round this? Can you see anything new?
What about research in other countries...not the US or UK?....
We have been blocked like this for years in both the US and the UK.
People are suffering, but not unfortunately in large enough numbers to attract notice.

 

[Bob]

Ok I get it, so is it fair to say that Congress has been "educated" that ME/CFS research is not in their best interest? Therefor no funding has been given to the area over the years? Any ideas which of those big groups you mentioned does most of the educating when it comes to ME/CFS research?

I don't know anything about Congress, but it was interesting in a recent article of Cort's (I think) that an ME researcher kept getting his grant application refused by an ME grant reviewing committee (in the NIH?). He then resubmitted the same research, but not as an ME study, and it got accepted by a different grant reviewing committee.

So it seems that the roadblocks might be outside of congress.

Sorry, I can't remember any details, but I think it was in one of Cort's recent "The NIH on ME/CFS in 2012" articles.

 

[markmc20001]

I don't know anything about Congress, but it was interesting in a recent article of Cort's (I think) that an ME researcher kept getting his grant application refused by an ME grant reviewing committee (in the NIH?). He then resubmitted the same research, but not as an ME study, and it got accepted by a different grant reviewing committee.

So it seems that the roadblocks might be outside of congress.

Sorry, I can't remember any details, but I think it was in one of Cort's recent "The NIH on ME/CFS in 2012" articles.

I got crossed up. I was trying to restate what ECO said.

Oversight for HHS and ultimately, NIH is through the House and Senate appropriations committees and the Congressional members who sit on those committees. Both committees must agree on the exact budgetary amount otherwise it will go into sub committee until there is reconciliation between the House and Senate version

 

[Bob]

Hi markmc,

I've just realised that I didn't read your questions to Eco properly, and that I was randomly answering completely different questions to what you were asking!
So please ignore me!

Bob

 

[markmc20001]

Sorry to sidetrack the thread folks. Please continue on.

 

[Bob]

Sorry to sidetrack the thread folks. Please continue on.

You didn't sidetrack it at all mark. You were raising interesting questions.

And anyway, this thread doesn't really have a track to be sidetracked! It's all over the place!