Viology podcast - XMRV special with Singh 8th August

[Lynn]

As I understand it, Dr. Singh is working with the Dr.s' Light and Dr. Bateman in Utah on the CFS stuff. I don't think we have to worry about cohort issues, since Dr. Bateman obviously gets the PEM issue.

Lynn

 

[Ash]

If they manage to replecate the WPI/NCI/CC results without using the CCC (something the CDC have attacked as "abnormal CFS patients", remeber the exclusions in their study?) then really using "just" Fuduka & still replecating it will bite all the those producing negative papers in the arse.

*still listening to podcast*

 

[Cort]

Ila Singh: "The virus is present in samples in very small amounts. It really is, you know, very hard to detect. And that's probably gonna be the case with a lot of pathogens that are discovered now is that the one's that were present in abundant amounts are probably already known."

Doesn't that mean she's found it? Was she talking about prostate cancer or CFS or both? Can we infer from her statement that its very hard to find that its finally happened - that someone other than the WPI has finally found in CFS? ?????

 

[Otis]

I was intrigued by her description of using immunohistochemistry in her prostate cancer study. With my feeble understanding of the method they use a target antibody which contains a visual marker and can be used to detect very low virus levels, providing exceptional sensitivity.

 

[Otis]

Doesn't that mean she's found it? Was she talking about prostate cancer or CFS or both? Can we infer from her statement that its very hard to find that its finally happened - that someone other than the WPI has finally found in CFS? ?????

I actually took it to be a statement regarding pathogens in general. The easy stuff's been found and so now searching for things in low copy numbers is probably going to be the norm and XMRV is one example. I need to give it a second listen, however, to be sure I have the correct context.

 

[leelaplay]

Doesn't that mean she's found it? Was she talking about prostate cancer or CFS or both? Can we infer from her statement that its very hard to find that its finally happened - that someone other than the WPI has finally found in CFS? ?????

I'm pretty sure that she was talking about finding it in prostate cancer. It's at -20:15

at -22:34 she started answering jackie's question about what studies are needed to prove causation. Ila talkied about animal models for prostate cancer & that they are looking at integration sites and how other gamma retroviruses integrate. They are looking if the integration site is near a growth gene and if the cancer cells are clonal ie every cell in the tunour has the same insertion point.

She said if both of these prove true then we can call XMRV a cancer causing (retro)virus

She said it was an extremely difficult process

-20:15 "the presence of the virus in tumours, it's not there in huge amounts. That's made everything very difficult to do"
---
And this is in prostate cancer tumourous cells, the easy place to find XMRV. You can see why WPI is saying that XMRV is very difficult to find in the blood and why they tested in so many precise ways.

Even more so when Ila said in answer to Kate's question -31:10 that it is a possibility that the amount of XMRV in the blood may vary according to the stage of the disease. No one has tested this yet, but there is precedence in other diseases

And also around -19:50 jackie asked (and vince really liked the question) if the reservoir of XMRV is the best place to harvest eg if most XMRV is in the blood, then harvest there and it's easy. But what if it's in the brain. (Ila and hosts basically responded with 'ah' and rueful laughs)

 

[ixchelkali]

Doesn't that mean she's found it? Was she talking about prostate cancer or CFS or both? Can we infer from her statement that its very hard to find that its finally happened - that someone other than the WPI has finally found in CFS? ?????

I don't think we can infer that from what she said, because Dr Singh has been studying XMRV for a while now, not just in CFS. She knows something about how hard it is to find in general, since she was one of the earlier researchers to start looking for it in prostate cancer.

I think the autopsy study is big news. It will be interesting to see if they find it in the same rates as [some] other studies have found it in healthy controls, like about 4 to 7%. And even more interesting to find out what tissues they find it in. That could really tell us something about the reservoir. And maybe we can find out if it's in the brain. Bless the people who donated their bodies to science, and enabled this research. I wish there were a tissue bank (body bank?) that those of us with ME/CFS could donate our bodies to, now that I've removed the organ donor card from my driver's license.

 

[ixchelkali]

Thank you Drs. Racaniello and Singh.

Take home message - We're working very hard on this but there is a lot that WE DON'T KNOW!

I have to say that Dr. Singh is my type of sober and serious scientist.

Dr. Singh describes the CFS XMRV study that she is presently doing as replicating the methods used in the Science study (including culturing) plus additional types of testing.

Dr. Singh has not closed the door on anything at this point, nor is she jumping to any conclusions. She does point carefully to the importance of methodology and to the difficulty of detecting XMRV because of very low copy numbers and uncertainty about reservoirs.

I agree completely. I thought this was one of the best discussions of XMRV I've heard. And I like that Dr Singh isn't shy about saying "I don't know."

You know, if it weren't my life on the line here, it would be fascinating watching the science unfold, as bit by bit they unravel the mystery of this new virus. Heck, part of me finds it fascinating anyway. The part that isn't saying "Are we there yet? Are we there yet? Are we there yet?"

And she answered one of my questions! I've been immortalized on TWIV, lol.

 

[IamME]

As I understand it, Dr. Singh is working with the Dr.s' Light and Dr. Bateman in Utah on the CFS stuff. I don't think we have to worry about cohort issues, since Dr. Bateman obviously gets the PEM issue.
Lynn

Gets it so much she wants us to do graded exercise in the things I've seen summarising her treatments. And someone or described her (and other doctors) as "maintaining functioning" in patients. Wow, I guess there's not much need for researchc after all if there's no reason for us to be non-functioning in the first place.

I'm sure she is good for the stuff she is good with but (and she's not alone among "good" docs here) she can't really get it if she's recommending people do more before we've learned how to treat the underlying exercise pathology in all its complexity. It might be that she mixes in FMS, CF other stuff with "CFS", whatever.

I am sick of having to not use otherwise good pieces of advocacy because there's a dangerous bear trap of CBT/GET in it somewhere, that a less severe/more protected sufferer can ignore with impunity but would be used against me - just in case its not clear where I'm coming from. And it also miseducates the public, media and makes people wonder why we protest such treatments as dangerous/inappropriate, despite that all the "effective" research comes from fraudsters doing magickal science.

If she's done a 180-degrees well, good, but I'll take some convincing.

 

[jspotila]

Gets it so much she wants us to do graded exercise in the things I've seen summarising her treatments. And someone or described her (and other doctors) as "maintaining functioning" in patients. Wow, I guess there's not much need for researchc after all if there's no reason for us to be non-functioning in the first place.

I think this is a mischaracterization of Dr. Bateman's practice and research. I recommend her article "The Exercise Conundrum" published on the IACFS/ME website. She says:

Physical conditioning efforts should approximate an intensity and duration that will cause no post-exertional malaise symptoms the day following the activity. No pain, no pain, is advised by Namita Gandhi, an exercise physiologist in Oregon with both personal and professional expertise in fibromyalgia movement therapy. All fatigue, pain or cognitive symptoms should be back to baseline after a good night of sleep. The regimen should not be increased until it can clearly be sustained for weeks without consequence. Then it may be increased a small increment in duration or intensity, and observed for tolerance another 1-2 weeks, etc. There is nothing wrong with finding a tolerable, variable or constant level to maintain without graded increase, as that is the inevitable end.

 

[LaurelW]

I think this is a mischaracterization of Dr. Bateman's practice and research.

I agree--I've been her patient for 15 years and she has never recommended GET.

 

[SOC]

You know, if it weren't my life on the line here, it would be fascinating watching the science unfold, as bit by bit they unravel the mystery of this new virus. Heck, part of me finds it fascinating anyway. The part that isn't saying "Are we there yet? Are we there yet? Are we there yet?"

Lol! That is exactly how I feel -- fascinated and impatient at the same time. *grin*

Thanks to all for the summaries! I still have difficulties with audio-only presentations of any length, so without your summaries and comments the info in many of these radio or podcasts would be completely unavailable to me.

 

[urbantravels]

Another bit of info - Dr. Singh mentions at one point that her research group is "talking to Merck" about doing clinical trials of antiretrovirals. She was very cautious to say they are "just talking" about the possibility at the moment. At another point when they are talking about antiretrovirals, Raltegravir happens to be the first one they mention, so it's not too hard to connect the dots about what drug they're pondering.

The panel discussed whether clinical trials would be useful before anyone even knows how to measure viral load (or knows what viral load might mean in PWCs) and then someone remembered that in the early days of HIV/AIDS treatments, there were trials of drugs before viral load got sorted out - that it is possible to do a clinical trial of a drug just based on "symptoms."

 

[SOC]

Another bit of info - Dr. Singh mentions at one point that her research group is "talking to Merck" about doing clinical trials of antiretrovirals. She was very cautious to say they are "just talking" about the possibility at the moment. At another point when they are talking about antiretrovirals, Raltegravir happens to be the first one they mention, so it's not too hard to connect the dots about what drug they're pondering.

The panel discussed whether clinical trials would be useful before anyone even knows how to measure viral load (or knows what viral load might mean in PWCs) and then someone remembered that in the early days of HIV/AIDS treatments, there were trials of drugs before viral load got sorted out - that it is possible to do a clinical trial of a drug just based on "symptoms."

That is great news! Thanks!

 

[V99]

This could all be moving along very quickly once the positive study is out. I suspect once they have that, and they realise how sick some people are, they will have a trial like this up and running within a year.

 

[Cort]

This could all be moving along very quickly once the positive study is out. I suspect once they have that, and they realise how sick some people are, they will have a trial like this up and running within a year.

I agree altho I've come to think that it will probably take one positive study to break the ice and then a couple replications of that study to cement the finding - then I can't imagine that the research community is not off to the races!

 

[Cort]

Look at this cheery face with the picture of XMRV in the background, sleeves rolled up and getting to work. I love it!

 

[SOC]

Look at this cheery face with the picture of XMRV in the background, sleeves rolled up and getting to work. I love it!

View attachment 3452

Love the photo, Cort! This one is going up on my Heroes board.

 

[V99]

The other positive studies are just around the corner, may be even in the next couple of months.

 

[Cort]

So we hear. Hopefully that will come to pass.