Finally - XMRV+ blood supply/standardized tests/MECFS Apr 4 '10

[Gerwyn]

Hi CBS - a good question, with important implications for XMRV in general. I had to go by memory to try to find the source. Here's the one for GSK from the thread: http://www.forums.aboutmecfs.org/showthread.php?4066-New-XMRV-study-to-be-undertaken.&highlight=glaxo+smith+kline

To help resolve this quandary, Glaxo Smith Kline, a pharmaceutical firm in Research Triangle Park, NC, has funded a new study that will evaluate CFS patients with characteristics similar to the Science paper. CFS patients known to have XMRV from the Science paper will be used as a positive control. This study is designed to estimate the prevalence of XMRV in CFS subjects (selected by the modified Fukuda criteria and the Canadian criteria) and healthy control subjects.
​

CBS, I think this is HUGE. Pharma giant GSK trusts the Science results sufficiently to use their positive controls. I believe GSK - being who they are - would have clearly looked for more corroboration - that may well still be in the pipeline. But they're not only confident enough to use positive controls from the Science team - they also go public with their study. That is HUGE! Will try to do some more memory digging....

I have to agree with George's great quote. Also the fact that increasing #'s of prostate cancer researchers are crossing over to the "dark side" (ME/CFS) and doing research here. Dr Singh really has her finger on several pulses - and is forging full speed ahead looking already into drugs to treat XMRV in vitro. Those 45 compounds and 28 drugs really got me thinking - would they do that if they profoundly doubted XMRV as causal? Lots of good news.

Can Passenger Viruses be Pathogenic?
But perhaps there's another angle. Even if XMRV is a "passenger virus", it may well be pathogenic in its own right too. (Or is that an oxymoron?) That virulence and immunosuppressive factor on the XMRV envelope. The virulent protein particles expressed. The ability to rev up other opportunistic infections. Or is a passenger virus always benign? Someone help me out here? Either way, given what we have learned so far about XMRV, it sounds like you need to do something treatmentwise because XMRV - even if it isn't the Grand Poohbah - stirs up a heck of trouble that can't be ignored, and that appears to significantly contribute to morbidity. And that's one more step toward more comprehensive treatment for ME/CFS.

Tho my personal belief: I think the writing's appearing on that wall that XMRV is "it", & we're just going through formalities now.

Parvo

If XMRV is the passenger who is the driver!

 

[bel canto]

If XMRV is the passenger who is the driver!

Oh, my - let's hope there's not more to find! Could we all survive much more uncertainty?

 

[parvofighter]

Don't worry about that driver!

Hi guys,

Don't get me wrong - I DO think XMRV is driving this:victory:.

I was just responding to several instances in which XMRV has been postulated as a potential "passenger virus", and I perhaps incorrectly assumed that they were inferring that passenger viruses are always benign. I think not, but can someone shed light on this? My point is that even IF XMRV were "just a passenger", that passenger virus could in fact cause huge damage - in fact eclipsing other factors...

My scientific instinct is that that doesn't hold water. But even if it did, a passenger can stir up some major @#C*!. And that needs to be treated. :Retro smile:

 

[George]

Use the Force Parvo, Use the Force (grins)

Hey Adam, you know I stole the the "sausage grinder" comment from John Coffin. (grin) I figure to use it as we go along. Now we're up to slaughtering the pig and we've drained the blood. (big grins) Cause there's now an honest to goodness "serology" test!!!!!!! At this rate we might have some sausage by the end of the month!

Parvo - think about this. All those viruses that used to kill the poor HIV/AIDES folks were really just passengers. Kind of like people with Chronic EBV are 7 times more likely to get lymphoma. (and I got the reference to that one, wink) how many "opportunistic" viruses and bacteria do we have as CFS/ME'ers anyway, and how much trouble do they cause us and just how much do they shorten our life span? Maybe someone will do a study now. Wouldn't that be cool??

The recent article about how immunity is directly tied to aging was posted on msnbc.com recently. That information came from originally studying the aging process in HIV/AIDES patients. We already know that the envelope produces neurotoxic proteins. And Dr. Goff has repeated that he believes that this is very much an MLV virus in it's behavior. Which as you dug up wayyyyyy back when is some seriously scary stuff!

I'm hanging with you Parvo; on the dark side where XMRV is driving the bus!

 

[usedtobeperkytina]

I'm disappointed. I thought we would get an announcement in March that there is a standard test. Maybe FDA would approve by June. And we could all go to our doctors this summer in a big swarm to get LabCorps and Quest do our tests, paid for by insurance.

This article makes it sound like we are more steps away from that then I thought.

I do agree they are sounding all authoritative in this article, like they are the ones in control of this whole XMRV thing. When cause is established, the WSJ reporter should be given a copy of Osler's Web and a plain manila envelope in a dark parking deck.

Don't get me wrong, I am glad to see so much interest and the issue of public health concern being raised. I suspect some other news organizations are watching. Drug Companies being interested at this stage is great news. I can't wait to see the commercials. (Take that all those who don't believe it is real.) And by the way, another group that is likely very interested are urologists.

But, in my current state of relapse and passing on a few job offer recently, I want to know....

When
Will
There
Be
An
FDA-approved
Test
Covered
By
Insurance?

Labcorps..... Quest..... We want to hear from you too. Don't be left out. The train is hurrying down the track. Come get on board. http://www.youtube.com/watch?v=vxM9GHmoxEU

Tina

 

[parvofighter]

Good dog George, good dog!

Parvo - think about this. All those viruses that used to kill the poor HIV/AIDES folks were really just passengers....
I'm hanging with you Parvo; on the dark side where XMRV is driving the bus!

Ya nailed it again George. Woof!

 

[CBS]

Parvo,

This is good to know. Thanks for doing the digging on this. I'm a bit too gassed to post anything reasonably coherent right now.

I do think that the writing is on the wall. If XMRV isn't IT, it is clearly something and THIS something has opened the door if it isn't THE way itself (told you I wasn't up for coherence).

Back to Goff, I find it quite interesting that Goff had doubts about the oncogenetic properties of XMRV and that he suggests it may be the immune/inflammatory impact of XMRV on a person with an unfortunate genetic vulnerability that leads to the XMRV/prostate cancer association. I think that this line of thinking betrays his feelings about the broader potentially severe immunological impact of XMRV.

ETA: If Goff is right about prostate cancer then we aren't talking about a case of simple causality. We're talking about a situation where multiple factors have to be in order and there is on one cause of prostate cancer. This would be consistent finding XMRV in 25-30% of those with the familial form of prostate cancer (other factors may be able to weaken the immunity in the 75% that is XMRV negative but have the same genetic vulnerability).

I have suspected that something similar may be at play in CFS folks and that this might account for the lack of symptoms in so many (but clearly not all) of our spouses and family.

 

[JAS]

Does anyone know conclusively where the UK blood supply comes from, reason being I really want to nail Wessely on this...that XMRV isn't in the UK. As far as I am aware the UK were still importing US blood in 1985. I spoke to the British Haemophiliac Society and the person I spoke to said that they are importing blood products from the US because of CJD over here. Does anyone know if the UK top up our blood bank with American blood? Logically speaking, XMRV works like HIV and is blood borne...it has to be here.

 

[fred]

I spoke to the British Haemophiliac Society and the person I spoke to said that they are importing blood products from the US because of CJD over here.

The UK has to import plasma and/or plasma-derived products because of the risk of 'home-grown' plasma being contaminated with vCJD. The only UK company that makes plasma-derived products is BPL, which has just bought a plasma collection centre in the US. One would assume, therefore, that the plasma for all UK plasma-derived products has been sourced from the US - unless the plasma collection centre is, itself, collecting plasma from elsewhere.

I do not know whether the UK imports whole blood from other countries.

 

[JAS]

Thanks very much Fred....great info....anyone know anything about the general blood banks?

 

[garcia]

Does anyone know conclusively where the UK blood supply comes from, reason being I really want to nail Wessely on this...that XMRV isn't in the UK. As far as I am aware the UK were still importing US blood in 1985. I spoke to the British Haemophiliac Society and the person I spoke to said that they are importing blood products from the US because of CJD over here. Does anyone know if the UK top up our blood bank with American blood? Logically speaking, XMRV works like HIV and is blood borne...it has to be here.

Yes but we already know its here in the UK. More than half of the UK group of patients who tested in December tested positive for XMRV. The WPI is currently testing around 200 UK patients as part of its new trial. We should start knowing in 3 weeks what proportion of those are testing positive. Pretty soon we should have published evidence of the fact that XMRV is very much in the UK.

 

[fred]

I think JAS is trying to circumvent the inevitable (albeit ludicrous) contention that, even if XMRV *is* in the UK, it is a different type of XMRV to that found in the US and does not cause ME or does cause such a severe type. The contention is null and void if XMRV is being imported via blood/blood products from the US.

 

[JAS]

Thanks Fred exactly correct, yes, Garcia, I know it is here...I have it. However I am just trying to defy the logic of those saying it isn't or that it is a different type. Does anyone know if and how the general blood banks are topped up if there is a shortage?

 

[citybug]

Am I the only one just a tab bit worried about this?

Do we know enough about Dr. Busch and the labs he will be using? And the testing method being used? (I have been told that Panorama, the lab doing the second study I am involved in, has been having trouble finding XMRV and are waiting before trying again.)

I asked the WSJ writer, she said: In the first phase, the labs include CDC, FDA with two different ones, NCI, Whittemore Peterson Institutes lab, and Blood Systems Research Institute.

I was hoping for Emory with their antibody experience "XMRV Infection in Patients With Prostate Cancer: Novel Serologic Assay ...". WPI is working on an antibody test but VIP isn't using it yet. I think they are testing to see if anyone has a reliable test now. Maybe pressure from the blood bank? Seems like whatever tests they can throw at it at present. I wish we knew more about WPI serological test. We don't know if any of the others have one. It is great they are taking seriously and urgently. Maybe some labs think they have a good test now and want to check. That would be fantastic.

I think the WSJ article is excellent. At first I thought it was combining the blood bank with some other news, but really covers a lot of the bases, checking in with many parties involved.

 

[citybug]

When
Will
There
Be
An
FDA-approved
Test
Covered
By
Insurance?

Tina

My doctor said Medicare was covering the VIP test (unfortunately mostly negative results).

 

[usedtobeperkytina]

kdp, wow, if that is true, then I would think someone would have posted that.

That is big news.

Tina

 

[citybug]

They could always change their minds. There haven't been that many tests done, and only some would be on that insurance.