Viology podcast - XMRV special with Singh 8th August

[Esther12]

Not listened to it yet, but I thought I'd let others know:

http://www.twiv.tv/2010/08/08/twiv-94-xmrv-with-dr-ila-singh/

(Let us know the juicy stuff, I'm not sure I'll have time to listen to it today). Thanks all.

 

[eric_s]

Thanks a lot, i will listen to it now.

 

[garcia]

Thought this was very pertinent as to why this virus is so hard to detect:

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."

 

[eric_s]

Just one quick thing, at 28:17 Vincent Racianello says "patients with chronic fatigue". Not "Chronic Fatigue Syndrome". Why does he and others do that? It's not correct and i think it should be fairly easy to call a disease by the name it actually has (even if it's a rather stupid name). He should know, he's certainly intelligent enough and not a layman?!

I'm writing down the points where i think they say something interesting, but i think it's worth to listen to all of it.

 

[LaurelW]

I thought it was pretty interesting when one of the hosts (Alan or Rich, not sure which) said his jaw dropped when he heard that some people with CFS are pursuing stem cell therapy. He clearly doesn't understand the extent of disability and suffering that some of us are going through. The idea that CFS doesn't kill people is still very prevalent, so they think we should just be content to wait around (most likely years) for a cure. This is also exhibited by the disapproval of anyone trying antiretrovirals before they've proven efficacious. I wonder if he can spell S-H-E-E-R D-E-S-P-E-R-A-T-I-O-N?:Sign Help:

 

[jimbob]

I hear you laurelW, that's why i'm giving Ral one more chance, these DORKters just don't get it!

 

[LaurelW]

How's it going? Do you have a blog?

 

[urbantravels]

I thought it was interesting. The first half of the discussion was indeed mostly about prostate cancer, but it's worth hanging in until the end. No new bombshells, of course - when the discussion shifted to CFS you can hear everyone getting VERY careful of how they choose their words.

I've only had a chance for one listen-through and haven't made any notes, but what struck me was how much research just this *one* researcher is involved with. I hear no indication that the XMRV/CFS connection is looking like a dead end or that anyone is taking the negative studies as closing the discussion. As Garcia mentioned, Dr. Singh placed a lot of emphasis on how difficult XMRV is to find. In her current study, she is using multiple assays (it sounded like a very thorough effort) to look for XMRV in CFS patients and healthy controls from the Salt Lake City area - 100 PWCs and 200 healthy controls, so a good-sized group. I didn't hear her say clearly what clinical definition they used in selecting the CFS patients, but they were referred from physicians.

The TWiV guys were all clamoring to know whether she was exchanging samples with the WPI's patient group. I sensed that they were all frustrated this hasn't happened with the other "negative" studies. She explained that she is getting samples from the WPI's patients, in such a way as to eliminate any possibility of contamination from the WPI lab - patients are identified, phlebotomists go to the patients (it sounded to me like they actually go to their houses!), draw fresh samples and then send the samples directly to Dr. Singh's laboratory in Utah. This is ongoing right now and they will get about 18 total samples in this manner.

There was also a description of a 1 1/2 year study of autopsies, both male and female, looking for XMRV and casting a very wide net about what medical conditions XMRV might be associated with. I'll have to listen again to understand that one better.

Dr. Singh also said they are looking at cervical fluid from women to see if XMRV is turning up there.

 

[CBS]

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.

 

[CBS]

Thought this was very pertinent as to why this virus is so hard to detect:

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."

Racaniello commented that virologists may have already identified most of the "low hanging fruit."

 

[VillageLife]

They read my question out!!! Yipeeeeeeee!

 

[VillageLife]

well a good interview but there is a lot that they dont know about XMRV.

Yes Its going to take a long time to find the *answers* but I feel CFS has been seriously neglected for the past 25 years and I feel we are owed the biggest favour by the science, medical and research community. We are owed big time and for that reason I feel they should give us SPEED, MONEY and all the RESOURCES in the world.

 

[Impish]

Great podcast. If the virus is there she is going to find it. Looking in various fluids, having cadavers to work from, using multiple test types, etc. shows she knows what she is doing. Also the sample exchange with WPI will stop the whispers for once and all.

In many senses the patient groups have also done their job in that all of the scientists seemed to clearly realize where the issues were with studies that have been done (patient choice, PCR only). Yelling about this seems to have worked (much to my surprise). There is no way this is going to get buried. Now everyone just needs to be patient (which I realize is hard).

Their comments about lay people not knowing the scientific process show that they don't have a background in the history of this. If they did they would understand why everyone is upset about the CDC and worried that it will get buried.

I thought their comments about stem cells were also good. I realize that people are desparate but you shouldn't be just randomly doing things... You can harm yourself.

They also answered one of my questions at the end (although I asked several)

 

[Impish]

well a good interview but there is a lot that they dont know about XMRV.

Yes Its going to take a long time to find the *answers* but I feel CFS has been seriously neglected for the past 25 years and I feel we are owed the biggest favour by the science, medical and research community. We are owed big time and thats the only reason I feel they should give us SPEED, MONEY and all the RESOURCES in the world.

Again... Patience. The amount of money going to the disease will rapidly increase once/if a link is shown. Until then I actually do understand the caution. If the government threw money at everything that people wanted them to there would be rapidly no money.

 

[VillageLife]

If the government threw money at everything that people wanted them to there would be rapidly no money.

I totally agree with you Patience.....but the world haven't been throwing much money our way, ever! ....all we have here in the UK is CBT.

(The UK/USA are soooooooo rich!)

 

[urbantravels]

They made the point that the work on XMRV is "early science." Which it is. Results will be confusing and contradictory until the issues that we all know about get hammered out - the type of test that best detects the virus, the clinical case definition, etc.

The real crying shame is that the "early science" didn't happen before now.

 

[CBS]

The real crying shame is that the "early science" didn't happen before now.

I agree entirely. Until recently there were a few dozen people (at most) around the world working on CFS. Look at how hard L. Jason worked to address the issue of cohort but until recently, he seemed like a lone voice on the importance of this issue.

 

[V99]

It's a shame that once again they think we have no understand of how the scientific process works. We know it takes time, we know science is self correcting, but this disease has not been treated that way. When research is not followed up, how can it be self correcting. When the money never goes on the biology how can we learn anything. The rules don't apply to ME research. I suspect Singh was biting her tong at times.

Villagelife, I know what you mean. It's time this disease was given it's fair share. They don't even have to increase health budgets to do it, they just have to give the disease the proportion of money it deserves from the pot. This will mean taking money from elsewhere, but whose fault is that. We cannot be expected to suffer because others are sick. We were not last in the queue, we were ignored.

 

[taniaaust1]

I. I didn't hear her say clearly what clinical definition they used in selecting the CFS patients, but they were referred from physicians.

She said that the 100 CFS patients they are going to test were choosen using the Fukuda defination ... pity they also didnt use the canadian consensus definition as the WPI did (by using the CC CFS patients, they automatically qualifed for the Fukuda defination too) .. as her study isnt going to be exactly the same patient group (so i personally cant see it as a true replication study due to that I so much want to see a true replication study using the same subgroup of CFS). So obviously the XMRV results will end up far less than the WPI group as the Fukuda group can include those who just have depression. This study is may be screwed from the start due to this.

For the issues with this defination http://www.name-us.org/DefintionsPages/DefCFS.htm

Dr Singh thou seems to be quite unbias and sounds like a very good one to be studying this. Sounds like she's going to be looking hard she she understands just how hard the virus is to find. What we have to ask is .. just how much her not studying the CC CFS group is going to go and affect the results??? esp when she's using a small group of only 100 CFS patients seeing the Fukuda group (2% of the normal pop.) is 3 more common then the CC CFS group (.5 % of the normal pop.) ..

I had to laugh at their shock that some CFS/ME patients are having stem cell treatments.

 

[V99]

It may not be a really bad thing. The CCC is a very good definition, but it's bound to miss some. What if the NIH/FDA study used only Fukuda also? Van you imagine the shock if that happens. That may be why this study is using Fukuda, perhaps not. Either way it will help to work out how close the criteria are, and where to look next.