Article: Lot of Questions at Int. XMRV WorkShop Q&A...and one BIG Answer?

You can view the page at http://www.forums.aboutmecfs.org/content.php?228-XMRV-Q-A-Session-Reveals-Questions-(and-a-BIG-Answer-)

 

Great summary of a contentious session, Cort.

I was taken aback by one statement Ila Singh made during the conference. She was likely misquoted on Twitter. What was the incidence of lymphomas she was seeing in CFS/ME patients? The rise in things like non-Hodgkin's Lymphomas has roughly paralleled apparent spread of CFS/ME. Nobody is saying NHL is psychogenic or trivial.

One answer to Dr. DeMarzo's question is another question: "Why is it so hard to find a possible human equivalent of Murine Mammary Tumor Virus?" Problems which have appeared in this research are not isolated concerns of one group of troublesome patients.

 

Looking forward to when we can see those video's. I hope we can see hers. That would be really something - it would fit Peterson's findings....it would be scary, for sure, but it sure would help.....

 

~ no going back, now ~ :victory: :victory:

 

Videos

Looking forward to when we can see those video's. I hope we can see hers. That would be really something - it would fit Peterson's findings....it would be scary, for sure, but it sure would help.....

I am guessing that we won't see many of the videos. If the presenters did not allow "tweets" of their presentation, they are probably unlikely to give permission to post the video.

Lynn

 

Hi Cort,

Dr. Mikovits argument that the human retroviruses have been, in the early stages of our understanding of them, difficult to assess using PCR and that antibody tests are more appropriate appeared to fall on deaf ears - at least in that group.

Based on what I saw/heard, I can't agree with your assessment here. Mikovits was not saying antibody tests were more appropriate, but that PCR alone was not enough and a number of complementary techniques were necessary. And the general discussion wasn't 'PCR-centric'; they were also discussing serological assays. Stoye argued that the gold standard test would have to be an antibody or PCR test. They were discussing PCR a lot because it's still a necessary assay to develop for a variety of reasons, and because the discrepancies in PCR results have been puzzling. Mikovits's point about the difficulties of PCR were echoed by Blomberg, who felt that PCR alone was too specific and they needed to cast a wider net by using other non-nucleic acid based techniques.

After at first refusing to be drawn into the question of the validity of anti-retroviral treatments by a question from Hilary Johnson, (Dr. Mikovits is not a physician)..

Dr. Mikovits may not be a physician, but neither is Dr. Coffin! I sincerely doubt that's the reason she refused to answer Hillary's question. She might not have been able to answer because (speculation here) of her own efforts in working towards antiretroviral trials, or because she has unpublished research related to her answer.

Of course treatment trials in CFS always use accepted qualitative clinical measures of functionality, etc. and there are several of them but they are apparently too qualitative for the virologists at that table.

I think part of the problem is that the other virologists are mainly interested in the virus itself, not the clinical entity known as ME/CFS. Treatment trials, to them, have little meaning if they do not involve monitoring the virus in a precise manner, and if their results cannot somehow be correlated directly with viral load or function. Mikovits is a virologist who is primarily interested in the virus's relationship to the clinical entity, and is doing research none of the others are doing or seem to have an interest in: clinical research on ME/CFS. I really felt that she and Coffin were talking about two different things, and that Coffin did not grasp that the reason for these early clinical trials would not necessarily be to search for a direct relationship between XMRV viral replication/ expression and therapeutic course , but to look for changes in clinical parameters during treatment based on the hypothesis of retroviral involvement, in an effort to move as quickly as possible towards potential treatments for ME/CFS patients. Data on viral load will tell virologists a lot, but the most important data from a clinical trial would involve patient response.

 

hi dr yes, have u shown immune abnormalities in blood tests like lymphocyte sub sets etc

 

Thanks again Cort for this report. I guess though exciting the slow way new Science/new discoveries has to proceed may disappoint - the momentum now is unstoppable.

 

. . . yes, we're all so interested in this subject and isn't it great that we're having this workshop (doesn't that demonstrate our interest?) and then stating that no' new funding directly devoted to XMRV will be coming until the testing problems are clarified. In fact, even then then all he would say was that he 'suspected'the NCI would then'look'at the issue: "As things develop and it becomes a little clearer whats going on I think then certainly I would suspect that the NCI and NIH are going to look and see if there are things that would be appropriate to do - and if the money is available."

(The bolds are mine.)

I find the comments about money rather disconcerting. The ME/CFS community has said for years that it's going to take massive funding to crack this disease. The only provider with that kind of money is our government. I don't think it's a leap to say if there isn't a problem with our blood supply, we will be left hanging again.

However the momentum on this will tend to run out after a bit without additional money being put into it at some level or another. So its very important to sustain the momentum that we have so far."

Dr. Coffin is right. Sustain the momentum we have. Does this mean opening our own pockets even wider? Clinical trials? I put on my binoculars and I still can't see them. We need our government engaged in every way possible with this disease.

 

Hi Cort,

Based on what I saw/heard, I can't agree with your assessment here. Mikovits was not saying antibody tests were more appropriate, but that PCR alone was not enough and a number of complementary techniques were necessary.

Yes, she said 'complementary techniques' which, at this point, in the context of where the research community is, appears to simply mean antibody tests. I'm sure she had other tests in mind, some of which, I guess, require being able to find the virus in ME/CFS blood samples and grow it, which it appears no one else has been able to do (although I haven't seen all the Workshop results)

And the general discussion wasn't 'PCR-centric'; they were also discussing serological assays. Stoye argued that the gold standard test would have to be an antibody or PCR test. They were discussing PCR a lot because it's still a necessary assay to develop for a variety of reasons, and because the discrepancies in PCR results have been puzzling. Mikovits's point about the difficulties of PCR were echoed by Blomberg, who felt that PCR alone was too specific and they needed to cast a wider net by using other non-nucleic acid based techniques.

I would disagree here as well. Yes, of course, antibodies are being tested and they are discussed for but the main focus now is not on uncovering why the antibody results are off - it's on why the PCR results are off. I think the research community feels that they need to get the PCR questions resolved and they are reluctant to move forward until they do so.

Dr. Mikovits may not be a physician, but neither is Dr. Coffin! I sincerely doubt that's the reason she refused to answer Hillary's question. She might not have been able to answer because (speculation here) of her own efforts in working towards antiretroviral trials, or because she has unpublished research related to her answer.

Hillary didn't ask about anti-retroviral trials - she asked, as I remember, for Judy to comment about the suitability of antiretrovirals for patients. Dr. Mikovits later talked quite avidly about anti-retroviral trials which suggests (a) that she doesn't have problems talking about them even if she is working towards them and (b) that it was the way the question was phrased that had her be so uncharacteristically reticent. Judy has certainly talked about unpublished results in the past several times and just did so at the WPI opening when she said she had found an immune signature. The physician idea, of course, is just a guess.

I think part of the problem is that the other virologists are mainly interested in the virus itself, not the clinical entity known as ME/CFS. Treatment trials, to them, have little meaning if they do not involve monitoring the virus in a precise manner, and if their results cannot somehow be correlated directly with viral load or function. Mikovits is a virologist who is primarily interested in the virus's relationship to the clinical entity, and is doing research none of the others are doing or seem to have an interest in: clinical research on ME/CFS. I really felt that she and Coffin were talking about two different things, and that Coffin did not grasp that the reason for these early clinical trials would not necessarily be to search for a direct relationship between XMRV viral replication/ expression and therapeutic course , but to look for changes in clinical parameters during treatment based on the hypothesis of retroviral involvement, in an effort to move as quickly as possible towards potential treatments for ME/CFS patients. Data on viral load will tell virologists a lot, but the most important data from a clinical trial would involve patient response.

Agreed!

 

I think part of the problem is that the other virologists are mainly interested in the virus itself, not the clinical entity known as ME/CFS. Treatment trials, to them, have little meaning if they do not involve monitoring the virus in a precise manner, and if their results cannot somehow be correlated directly with viral load or function. Mikovits is a virologist who is primarily interested in the virus's relationship to the clinical entity, and is doing research none of the others are doing or seem to have an interest in: clinical research on ME/CFS. I really felt that she and Coffin were talking about two different things, and that Coffin did not grasp that the reason for these early clinical trials would not necessarily be to search for a direct relationship between XMRV viral replication/ expression and therapeutic course , but to look for changes in clinical parameters during treatment based on the hypothesis of retroviral involvement, in an effort to move as quickly as possible towards potential treatments for ME/CFS patients. Data on viral load will tell virologists a lot, but the most important data from a clinical trial would involve patient response.


exactly...hit the nail right on the head!!!!

 

Cort, Dr. Singh's name has an H at the end.:Retro smile:

This seems to be a vicious circle--they won't put out any funding until the science gets further along--and the science can't get further along until there is more funding. Is this like a dog chasing its tail?:headache:

 

Reports/Vids from Day 2 of the conference?

Looking forward to when we can see those video's. I hope we can see hers. That would be really something - it would fit Peterson's findings....it would be scary, for sure, but it sure would help.....

Appreciate the insightful summary. I've been hoping to see additional reports from Day 2 of the conference activities that preceded the Q&A session. Does anyone know if there will be a proceedings published, additional reports from those present, etc? And when we might see more?

 

Wrong Sing(h), LaurelW. Dr. Ann Sing, cancer epidemiologist from the NCI who made the comment from the floor about HPV, is not Dr. Ila Singh from the University of Utah.

ETA: I believe it's actually Ann Hsing, the transcript on the XMRV Global Action Facebook page got it wrong, but the closed captioning IIRC also got it wrong. An understandable mistake.

http://dceg.cancer.gov/about/staff-bios/hsing-ann

 

Oh, sorry! Didn't know there was another one. Thanks for clearing that up. I do remember her making the comment. She seems pretty smart.

 

Finding a magic bullet?

I think part of the problem is that the other virologists are mainly interested in the virus itself, not the clinical entity known as ME/CFS. Treatment trials, to them, have little meaning if they do not involve monitoring the virus in a precise manner, and if their results cannot somehow be correlated directly with viral load or function.

I would disagree. Several points were made by Dr. Coffin and others. Patients may not agree, but that doesn't invalidate them.

1. Clinical trials control for variables in a way that case studies often do not. There is more to be learned about a population as a whole in a clinical trial than by individual results. As Coffin put it, "off label doesn't help everyone, just the individual."

2. Coffin did back the possibility of small scale studies to find biomarkers of anti-virals

3. If scientists do not yet have a handle on how these specific viruses behave, and they do not yet, then it is difficult to precisely target the behavior in order to modify it in a clinically meaningful way.

For example, Mindi Kitei on CFS Central noted that Dr. Klimas is also being cautionary. According to Dr. Klimas, antivirals can have a bad effect on cell mitochondria which is a problem in CFS. Other studies have shown that some anti-virals can amplify an autoimmune effect.

In general, patients think about situations as they apply to themselves. That is not necessarily how scientists view things in general nor should they. Both points of view are necessary.

Magic bullets are few and far between. Think of things as a spiderweb. No matter what part of the web you pull on, it affects the entire web.

 

Very helpful summary indeed Cort. Thank you. Really don't know how you manage to get your mind around all the intricate details and so quickly too - much appreciated.

One positive conclusion we can draw from all the contention though, is that the disagreements prove we are on the cutting edge of what is known about science here. We are witnessing science and history in the making. In other words, these folks are pioneers.

In all likelihood, what they will discover about XMRV, MLV's, ME/CFS and other immune dysfunction illnesses in the coming months, as they endeavour to find ingenious ways to nail down these viral sequences, will add to and advance Mankind's greater knowledge of virology, the human body, medicine and science. They should be rightly proud - but I guess they will have their noses to the grindstone and won't have had a moment to see things in this way just yet!

I say full marks to all of them.

 

So it looks like we have another task: get research and attention on fixing the disease, not only on the presence and activity of a virus. How do we know that knocking down this particular virus would cure the disease? Even if it was the original cause, reducing the already vanishingly small amount in blood might not get us out of here.

You can find and remove a box of matches, but that action won't put out a fire.

 

Hi all, check out Dr Cheney's feedback from inside the Conference to Rich Vank (by letter) on the XMRV Research thread.

 

And Dr. de Meirleir's poster from the workshop: http://www.mecfsforums.com/index.php/topic,1921.0/topicseen.html