Dr Singh's XMRV Patents: Something for Dr Lipkin -and the NY Times- to chew on

[citybug]

Dr. Mikovits was saying last year in video on prohealth I think that breast cancers should be checked as might contain xmrv like prostate cancers.
Dr. Singh on virology podcast was saying they were going to autopsy a group of bodies as they randomly died.

 

[Bob]

Hi
Sory George, as I remember it wasn't 77 with lymphoma, it was 77 with clonal T cell rearrangements. This is a change which may be a precursor to lymphoma. Not so scarey!

So do we know how many people actually became ill with lymphoma? It would be interesting to know.

And the person who died... does anyone know if that was directly caused by the lymphoma?

 

[Sasha]

Dr. Singh on virology podcast was saying they were going to autopsy a group of bodies as they randomly died.

This question interests me now - how random a sample of the population are people who donate their bodies to research? I'd be surprised if this hasn't already been a research topic in and of itself. My guess would be that the sample would be biased towards people who knew they were dying of relatively intractable illnesses that they realised needed more research.

 

[eric_s]

And we have two tests (WSJ reported one as well) for viral load. Dr. Coffin's complaint for not doing ARV trials was there wasn't an accurate way to test for progress in reduction of viral load. Gee, I feel so lied to.

Yes, that argument will no longer be valid, i guess. Unless those tests are not reliable enough yet.

 

[Otis]

And we have two tests (WSJ reported one as well) for viral load. Dr. Coffin's complaint for not doing ARV trials was there wasn't an accurate way to test for progress in reduction of viral load. Gee, I feel so lied to.

Feeling quite PEMed, can you help me with the specific tests? It sounds like 3 total and I'll probably slap my forehead when you tell me. Is DERSE one?

 

[urbantravels]

Sasha, in answer to your question, I don't believe there is a bias in people who donate their bodies to science in favor of their having rare and/or poorly understood diseases. Most people make the decision to donate their bodies before they are terminally ill or have anything wrong with them at all; and the most common motives cited are generalized altruism, a desire to avoid the "waste" of being buried, and sometimes a distaste for burial or the expense of a funeral (most elect to be cremated after researchers are done with their bodies.)

Yes, I actually have researched this in the past. It's not one of the worst things I know about dead bodies.

 

[Sasha]

Sasha, in answer to your question, I don't believe there is a bias in people who donate their bodies to science in favor of their having rare and/or poorly understood diseases. Most people make the decision to donate their bodies before they are terminally ill or have anything wrong with them at all; and the most common motives cited are generalized altruism, a desire to avoid the "waste" of being buried, and sometimes a distaste for burial or the expense of a funeral (most elect to be cremated after researchers are done with their bodies.)

Interesting! You spurred me on to a bit of googling and I could find precisely zilch. But even if most people decide to make the donate while still in good health, that could still leave a substantial fraction of other people who leave the decision until later; and there may also be bias coming from health professionals in terms of their decisions about whom to approach for a donation.

Also, I just took a look at how to donate your bod and there are three destinations for it:

1. "Anatomical examination" - this term describes the teaching of the structure and function of the human body to students or healthcare professionals.
2. "Research" - this term describes scientific studies which improve the understanding of the human body.
3. "Education and training" - these terms describe the training of healthcare professionals, usually those learning surgical techniques, as opposed to anatomical examination.

I don't know whether you would have any say in which of these uses your bod would have but if you had an interesting/severe disease, I think it would make more sense for your body to go to research than the other uses and whether it's the patient or a health professional who makes that choice, it seems like another big opportunity for the excitingly diseased (yippee!) bodies to go to research and the more ploddy bodies to go off to train people in anatomy & surgery.

Yes, I actually have researched this in the past. It's not one of the worst things I know about dead bodies.

Arrgh! Arrgh!

 

[urbantravels]

Try Google Scholar instead of regular Google. There are research studies.

 

[Sasha]

Try Google Scholar instead of regular Google. There are research studies.

Never heard of that! It's great!

Found this one indicating that in that particular study at that particular hospital, people were deciding to donate their bodies shortly before death but I don't trust individual studies and would rather have found a review. I don't think the search terms I was using were specific enough for a good search.

I suppose that Dr Singh will make all clear when she publishes her study. It's hard to avoid the temptation to try to guess, though!

 

[pine108kell]

Regarding Alex's post with unreferenced information: the point has already been well made but the "reference" that assured us this was reliable info was the fact that it was Alex who posted it. I guess a lot of scientists coming across this forum may not get that sort of thing, when we discuss science. But screw them and their prejudice, this is a patient's forum after all.

Not very nice, since I am the person that posted requesting a reference. I am a long-suffering CFS patient, so I have a right to commet on this forum, and just because I like references to back up statements doesn't mean you should say "screw them and their prejudice" when someone questions about a statement. I did look up post cancer fatigue as suggested by others including Alex, and it is a relevant condition that I did not know about so Alex did indeed make an interesting observation about XMRV, cancer and CFS. However, I have yet to see anything that suggests post cancer fatigue symptoms really resemble CFS which encompasses so much more than "fatigue" or even "brain fog". My speculation is that they are different conditions unrelated to XMRV but am willing to admit that this is speculation.

What I do not like is insulting my question just because I ask a question about someone you respect and you think that should be the end of story. Period. Maybe Alex knows a whole lot, but it isn't correct just because one person posts it as you suggest. No one knows much about this disease and so it is fair to ask. One reason I quit CFS/Lyme boards was because some people like to treat their own speculuations as religion and don't want any intrusions into that dogma. That is very distasteful. (NOT referring to Alex here who simply asked that I research the issue myself--but the reply above)

Kell

 

[Cort]

I took a shot at the Patent - its on the Front page

http://www.forums.aboutmecfs.org/content.php?273-The-Singh-XMRV-Patent-The-Next-Cancer-for-XMRV-Prostate-Cancer-Results-Validated-Progress-on-CFS

 

[Sasha]

I took a shot at the Patent - its on the Front page

http://www.forums.aboutmecfs.org/content.php?273-The-Singh-XMRV-Patent-The-Next-Cancer-for-XMRV-Prostate-Cancer-Results-Validated-Progress-on-CFS

Thanks, Cort - I find it hard to see this stuff in context and you've done a really helpful article. Now I just wish Dr Singh could get her stuff published where other scientists could see it and take her findings into account in their own research!

 

[Mark]

Hi Kell,

I'm sorry if my words came across as directed at you, they weren't intended to be. There was, and is, nothing wrong with asking for a reference. There's also nothing wrong with posting an unreferenced but reliable comment, as Alex did, which readers can check up on for themselves and other members can illuminate.

I guess my sharp words were based on a background of personal frustration with those sort of 'bad scientists'; I've spent far too much time lately reading nasty and unfair comments about PR on another forum and I guess that's what prompted my outburst. It's very frustrating when people misrepresent us here as unscientific, just because we're a patient's forum catering for a broad range of opinion and with members from widely differing backgrounds and therefore don't tend to discuss science in a particularly formal way.

But I guess it was a self-indulgent outburst on my part; not aimed at you Kell but I can see how you might feel it that way. I'm sorry. I guess I've been wading through too much muck elsewhere lately and it's got to me a bit.

Quite agree with you about posters who take their speculations/beliefs as religious dogma to be defended at all costs; very counter-productive behaviour. Pretty sure you'll agree we're not like that here.

All the best,

Mark

 

[alex3619]

Hi everyone, I have been thinking about the Singh staining technique, and comments here and on other forums. The contamination question arises because very small amounts of XMRV DNA can be amplified by PCR and give rise to a false positive if there is any contamination (I am not so sure about XMRV RNA, maybe someone can comment on this?). Singh's staining technique should be immune to these issues. What this means is that unless the XMRV staining is due to cross reactivity, this is proof that the XMRV is real and not a contamination issue. If real XMRV can be sequenced from even a few of these stained samples, the debate should be over - really really over.

Why would it be over you might ask, because these slides are for cancers? The reason is that it would validate her technique, and the specificity of the staining. If Singh can apply the same technique to any XMRV positive CFS samples, it will cross-validate the other results.

Bye,
Alex

 

[Marco]

I came across the following on the dailystrength.org website discussion of Ila Singh's patent application. As I haven't seen the original patent application I can't vouch for its accuracy but I don't believe this has been discussed yet?

http://www.dailystrength.org/c/Chronic_Fatigue_Syndrome/forum/10982461-cfsme-cfidsxmrv-there



METICULOUSLY ADDRESSING THE CONTAMINATION ISSUE

[0094] It was important to ensure that the assay specifically amplified XMRV sequences and not other murine or human endogenous retroviral sequences.

In research laboratories, human tissue blocks are often sectioned on the same microtomes used for murine tissues, and contamination with murine samples can result in non-specific amplification of exogenous or endogenous murine retroviruses that are present in multiple copies in the mouse genome and have high sequence similarity to XMRV (Figure 2A).

Systematic scanning of the XMRV genome identified a region of the putative gag gene that was 100% conserved between all published XMRV clones (total of 3), and yet shared at most 80% similarity with the most closely related 11 murine retroviral sequences (Figure 2A). Primers and probes in this region allowed efficient detection of XMRV without interference from related murine retroviral sequences.


ENSURING SPECIFICITY TO RULE OUT DETECTION OF MURINE ENDOGENOUS RETROVIRUSES

To test for amplification of murine ERVs, genomic DNA of a
C57BL/6 mouse was used as template. To rule out amplification of human ERVs or other human sequences related to XMRV, commercially available human placental DNA was used as template. Also mouse DNA was mixed with human placental DNA at different ratios. No amplification product was observed in any of the reactions, showing that the qPCR assay was highly specific for XMRV.

 

[alex3619]

Hi Marco, these were all quality control checks on PCR amplification, including selection of highly specific primers. My point is that staining is almost immune from the problem in the first place. Provided it has high specificity, there is almost no way that contamination can be a problem, unless they somehow get mouse tissue mixed up with human tissue - and that would be very very unlikely. If the staining data matches the PCR data, we can then trust the PCR to be contaminant free anyway. Bye, Alex

 

[Overstressed]

Looks like XMRV could also start a new way of looking at cancer, or do they already do thatwith other viruses?

Well, in fact, I was thinking of that too. Usually, when you have cancer, you get the traditional treatment, chemo, radiation. Chemo wipes out your immune system, I've seen that with my father. Somehow, I think, this can not be the treatment if a virus is involved. If the chemo doesn't wipe out the virus completely, and personally I think this is the case, then the virus has no enemy left in the body.

I've always thought that my father's cancer was also caused by a virus, because everytime he got Chemo, he was stable for a very short time, but the disease returned as hell, everytime after.

There is so much money spent on cancer research, and it looks more and more that viruses are involved, heavily. Can I say that there's a lot of money waisted ? Or am I being to rude ?

OS.

 

[Marco]

Thanks for the clarification Alex.

I just find phrases like - to rule out other murine or human endogenous retroviral sequences enormously reassuring and your comments on staining just add to the feel good factor.

 

[Jemal]

Well, in fact, I was thinking of that too. Usually, when you have cancer, you get the traditional treatment, chemo, radiation. Chemo wipes out your immune system, I've seen that with my father. Somehow, I think, this can not be the treatment if a virus is involved. If the chemo doesn't wipe out the virus completely, and personally I think this is the case, then the virus has no enemy left in the body.

If the virus is causing problems on its own (for example: causing cancer), you definitely don't want the immune system to take a hit, as there would be almost no defence left. Now, if the virus is simple a passenger, but the immune system is fighting it and causing problems, then you have a situation which resembles an autoimmune disorder. Chemotherapy could then be a treatment option. I am still wondering in what category XMRV will fall. I am guessing it will be a combination of both: so the virus does cause problems on its own, but the immune system is also making a mess out of it.

To date only a smaller percentage of cancers can be traced to viruses, about 20%. This percentage might grow now that we get more understanding of (retro)viruses.

 

[TheMoonIsBlue]

Out of 292 of the original Incline Village CFS patients, 77 developed lymphoma. However only one has died.

Does anyone know what the "general" state of health of the original 292 Incline Village patients is today? I know it was a long time ago now and this info could be very hard to come by. Is there any info on what % improved greatly over the years, improved modestly, improved mildly, or did not improve at all....and still have ME/CFS today if they are still living?

Does anyone know the % of people who developed ME/CFS during the mid- 80's to early-90's who have tested positive for XMRV?