XMRV, VIPDx Labs and CFS: the 36% Solution

Cort

Phoenix Rising Founder
Messages
7,355
Likes
2,013
Location
Arizona in winter & W. North America otherwise
Dr. Lombardi apparently stated (at least according to Kean) that 36% of the 300 tests VIP Dx labs have processed so far are postive for XMRV. Two things spring out at me; one the idea that this was an at least somewhat unusual cohort are probably true. On the other other hand 36% is a pretty big chunk of the ME/CFS population.

Unfortunately we don't know if he was referring to PCR or PCR and Culture. I would assume he was talking about both - that would suggest, though, that the percentage of those with an 'active' infection is down to maybe, what 20%? Of course we do know that a latent infection (confined to the white blood cells) can still have marked effects. (We also know that an active infection will not necessarily have negative effects (aka the healthy controls)).

We have a tremendous amount to learn: in particular who's testing positive - (what kinds of patients they are); are people with an active infection generally worse off than those with a latent infection? Are people who test positive worse off in general than those who do not?

We also don't know how much the test will change over time. Given the concern of standardization we have to expect that the test for XMRV will change - we just don't know if there will be big changes or really small tweaks - but it will very likely be different from the VIPDx test.

Only 300 tests! - We do know why our poll results have been so paltry - only 300 tests. In two months (40 days or so) only 300 tests done; that's about 8 a day. Why so slow? (Was Kean right about that?) Are they still tweaking the test?

(The Importance of the Title - I have a rather extravagant title up there - thats because it became clear during the Imperial College outburst that title makes a huge difference in how well Google picks up posts)
 

Cort

Phoenix Rising Founder
Messages
7,355
Likes
2,013
Location
Arizona in winter & W. North America otherwise
LabyBugMandy posted this about VIPDx

"When Whittemore Peterson did their research it was on a small group of patients who have a “confirmed diagnosis” of CFS.

VIP Dx is testing hundreds of patients whose medical history is unknown and a diagnosis of CFS may or may not be confirmed.

Although we strive to offer the most sensitive test available XMRV is typically present at a very low-copy number and may be below the limit of detection from time to time.

Retroviruses (like XMRV) are integrated into cellular DNA and are considered life-long infections; it is possible that the immune system may decrease the virus to a level below the limit of detection from time to time (non-symptomatic). Presently, the life cycle of the virus is unknown; if you receive a positive result at any point, we do not recommend re-testing.

XMRV testing at VIP Dx uses the same methods as published in the Lombardi, et al, October 2009 issue of Science. This test included PCR testing on lymphocytes as well as virus culture. This method requires 20mL of whole blood and although it is much more time consuming and labor intensive than other methods, we find that it dramatically reduces the rate of false negative results. It is also why the cost of this test is greater than that of tour standard PCR tests."
It gives us a reason for the slow results.
 

Kati

Patient in training
Messages
5,488
Likes
19,600
Getting a blood draw and shipping out my blood to them on Monday. I trust VIPDX.:Sign Good Job:
 

Kati

Patient in training
Messages
5,488
Likes
19,600
It doesn't mean that these 300 people are on our forum, or have CFS.What it means is they have tested 300 people so far- you are one of these 300. Some have had easy testing, and some other like you are a bit more difficult to read. They might have to redo it. It sounds like Lombardi himself is reviewing each result.

If you are curious about what's going on with your sample, it would be worthwhile to give them a call, they are pretty nice about it.

KAti
 

Advocate

Senior Member
Messages
528
Likes
88
Location
U.S.A.
I waited a very long time to bug them about it. But they are still testing my sample. So, if I am one of the 300, then my result is not yet determined. If there are many more like me, the number of bonafide XMRV positives could actually be very low, less than a dozen.
Hi Levi,

I think of you as one of the mainstays of this forum, and yet you have posted only 32 times. Maybe this is not nice, but I hope that you are positive so that you won't leave us. You've always had such good comments and suggestions--all 32 of them.
 
G

George

Guest
Smart Man

Yeah, I notice that about Levi's posts as well (grins) my guess is he deletes his posts??? Considering our ratings on Google this is pretty smart. I know that I'm glad I'm using my dog as an alias, that I'm very vague on my profile and try not to put anything public up in my posts. It's scary how we show up, not only on Google but, quotes from our board as well as stats. (shiver) I'll bypass the 15 minutes of fame or donate it to someone else, thank you very much.

I could be way wrong but I thought that VIP Dx (Dr. Lombardi) was handling the testing for the WPI as well as the commercial end of things. The way I understood the first press release (I'm still looking for it and an article that has a quote in it) and article was VIP Dx only offered the "semi commercial" test to the public because of the avalanche of emails and calls they received practically demanding the right to test. Especially after Cooperative Diagnostics offered a commercial test.

So the 300 number is, to my understanding, the number of public "commercial" test that they have done to date. These tests are radical since, they have no way of knowing who's who or has what with the commercial tests. Talk about double blind testing! These blood samples can be from anyone who requested a test and had a doctor who agreed to write the blood draw. If 36% of those show up that would be pretty good. (About 1/3 of the CFS's can afford the test price. (grin)) And because the lab has no way of knowing who these people are they may be taking time to run the commercial samples several times to be on the safe side.

So 2/3rds are either false negatives, or possibly people with MS, or mothers of autistic children, or people who dated someone with CFS and are scared, or someone with GWS, I mean no one knows who the negative testers are not even the lab personnel. All in all the commercial lab test tell us very little. The main thing is how important they are to the people who are tested.

So why did VIP Dx take a chance to toss out the number? Well, what I take away from the 36% number is that

1)It was a number that could be reported to the press because these 300 results were not embargoed due to study publication constraints, and

2) That it confirms that XMRV is a bonafide retrovirus in the human population. Which is what the press was looking for in response to the Imperial College study.

As for the 500 from the London study and the patients from Dr. Klimas's study and the many others who Dr. Mikovits says "the numbers are holding up" we have to wait for them to be published which could take awhile but I trust that Dr. Mikovits wouldn't lie about the numbers holding up. I doubt it means the 95% (or 98%) but I would bet on numbers around 66% to 70%.

It's all so exciting.
 

Martlet

Senior Member
Messages
1,837
Likes
5
Location
Near St Louis, MO
The fact that they know nothing about patient history could mean a lot. There are plenty of self-diagnosed patients out there, as well as those who are wrongly diagnosed. My doctor is superb, although he doesn't specialise in CFS/ME but he admitted a few months after first seeing me that he thought he already had three CFS patients but that having seen how sick I was, he realised they were FMS patients. I know XMRV may be implicated in FMS too, but my experience does go to show that until a doctor has seen a person with CFS, he/she can be confused.

Anyway, XMRV hit the mainstream news, so there is no telling what symptoms people who have sent off for the tests may or may not have.
 

hensue

Senior Member
Messages
269
Likes
1
Martlet that was like a kick in the gut to me. I am diagnosed only with Fms, you might be alot sicker than I am. The pain of fibromyalgia is horrible and I think we are all in this boat together. I do understand what you are saying.
Like researches have said apparently there are different subsets of fms or cfs. Believe me the symptoms are very much the same.
 

Kati

Patient in training
Messages
5,488
Likes
19,600
So the 300 number is, to my understanding, the number of public "commercial" test that they have done to date. These tests are radical since, they have no way of knowing who's who or has what with the commercial tests. Talk about double blind testing! These blood samples can be from anyone who requested a test and had a doctor who agreed to write the blood draw. If 36% of those show up that would be pretty good. (About 1/3 of the CFS's can afford the test price. (grin)) And because the lab has no way of knowing who these people are they may be taking time to run the commercial samples several times to be on the safe side.

So 2/3rds are either false negatives, or possibly people with MS, or mothers of autistic children, or people who dated someone with CFS and are scared, or someone with GWS, I mean no one knows who the negative testers are not even the lab personnel. All in all the commercial lab test tell us very little. The main thing is how important they are to the people who are tested.

So why did VIP Dx take a chance to toss out the number? Well, what I take away from the 36% number is that

1)It was a number that could be reported to the press because these 300 results were not embargoed due to study publication constraints, and

2) That it confirms that XMRV is a bonafide retrovirus in the human population. Which is what the press was looking for in response to the Imperial College study.

As for the 500 from the London study and the patients from Dr. Klimas's study and the many others who Dr. Mikovits says "the numbers are holding up" we have to wait for them to be published which could take awhile but I trust that Dr. Mikovits wouldn't lie about the numbers holding up. I doubt it means the 95% (or 98%) but I would bet on numbers around 66% to 70%.

It's all so exciting.
Totally agreed George- I don't think that people should get upset with the 36%.. In fact, it is good news that people out of the population tests positive. And Lombardi's team can find some of us positive, not all of us quite yet. It will come.

Kati
 

Kati

Patient in training
Messages
5,488
Likes
19,600
Martlet that was like a kick in the gut to me. I am diagnosed only with Fms, you might be alot sicker than I am. The pain of fibromyalgia is horrible and I think we are all in this boat together. I do understand what you are saying.
Like researches have said apparently there are different subsets of fms or cfs. Believe me the symptoms are very much the same.
I think it would be hard to compare diseases- maybe we can compare the degree of disability- and functionality. Some people with CFS and FM are able to work, and some not. Some hae a lot of pain, some not. ETC...
 

bakercape

Senior Member
Messages
210
Likes
1
Location
Cape Cod. Mass
Let's

not forget the 36% does not include an antibody test. THe antibody test made the number jump from 67% to 95-98% as WPI reported. So with an antibody test the 36% number would speculatively jump above 50%. That's a striking number.
 

Advocate

Senior Member
Messages
528
Likes
88
Location
U.S.A.
Okay, you were discussing Wesseley's connection UNUM at one point, and I just ran across this:

The ME community is also aware that on 17th May 1995 Mike Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held in London entitled “Occupational Health Issue for Employers” (where ME was described as “the malingerers’ charter”) at which they advised employers how to deal with employees who were on long-term sickness absence with “CFS”. Moreover, in UNUM’s “Chronic Fatigue Syndrome Management Plan”, ME/CFS is described as “Neurosis with a new banner” and the same document states “UNUM stands to lose millions if we do not move quickly to address this increasing problem”.
http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm
 

Advocate

Senior Member
Messages
528
Likes
88
Location
U.S.A.
Advocate,

I would like to see this competing interest declared publicly, or the entire PLoSone article retracted. What question can I answer for you about this?
Do you know if anyone is doing anything about this? Any organization? Any individual? Would it be out of line if I mentioned Wesseley's conflict in the Comments section when I respond to media articles about the study for which he supplied the samples (His role was mentioned only in small print, at the end)?
 

gracenote

All shall be well . . .
Messages
1,537
Likes
74
Location
Santa Rosa, CA
where, oh where, have Levi's posts gone

I delete my posts here after a day or so for a variety of reasons. When you are in shark infested waters, you don't dangle your feet overboard in the water very long if you are smart. This is the first time someone has noticed my deletion practices. I probably have posted here about 300 times by now. . . .

. . . I have noticed over time most of us actually don't absorb completely or track very well on other member's posts. Myself included. This is an interesting cognitive symptom, and convinces me that many of us here are dealing with a comprehension handicap.
I noticed when your posts first started disappearing. It was very disconcerting. However, since you also disabled you PM connection, I couldn't contact you. I didn't like it that whole parts of conversations that had taken place communally had been deleted by one of the parties involved. But, once I realized that it actually wasn't due to any "interesting cognitive symptom" on my part but a preference on your part, I got over it. Delete away if that makes you feel better.

:confused: :rolleyes: :Retro wink:​
 
K

_Kim_

Guest
Thanks Advocate, But George is right; I delete my posts here after a day or so for a variety of reasons. When you are in shark infested waters, you don't dangle your feet overboard in the water very long if you are smart. This is the first time someone has noticed my deletion practices. I probably have posted here about 300 times by now.

Of course, it is not possible to delete posts that start a thread without moderator/administrator help, so there are 30 some odd thread starting posts of mine that Cort is welcome to clear off the board. I have emptied them. I have noticed over time most of us actually don't absorb completely or track very well on other member's posts. Myself included. This is an interesting cognitive symptom, and convinces me that many of us here are dealing with a comprehension handicap.
Some of us noticed from the start when your post count was going in reverse :)

In the future, if you'd like to start a thread, I would be more than happy to start the thread for you, just PM me the content. As far as the threads that you already started, I also noticed that you deleted the content of those posts. This makes the threads, in some cases, nonsensical. We are not going to wipe out the whole thread that other members contributed to. That's not fair to them. I wish that you would have contacted us for advice on this. We could have moved some of the relevant content to a new thread without your name on it. Now, we have threads that have no first post. Kinda messes up the context for everyone else.

ETA: I just read what gracenote posted about you turning off your Private Messaging functions. In that case, use the [Contact Us] button at the bottom of the page. My email address is there.
 

Martlet

Senior Member
Messages
1,837
Likes
5
Location
Near St Louis, MO
Martlet that was like a kick in the gut to me. .
I am so sorry, Hensue. It was not meant to minimize FMS (I have that too) but simply to illustrate that doctors can be very confused because they are not trained on these illnesses. Please, please accept my apologies. I know just how sick the FMS patients amongst us are too. I have a friend who does not fulfill the Canadian definition for CFS but has the worst FMS.
 
D

DysautonomiaXMRV

Guest
Professor Kenny De Meirleir's patients are positive in Belgium (in Europe), also.
And we also know the WPI research London group (UK) folk with Dr Kerr are too.

We're just waiting to hear officially.
 

Jim

Senior Member
Messages
79
Likes
14
Professor Kenny De Meirleir's patients are positive in Belgium (in Europe), also.
And we also know the WPI research London group (UK) folk with Dr Kerr are too.

We're just waiting to hear officially.
just curious - dr kerr is doing a formal study on xmrv and has said he will not give results. so are u refering to a group that is not part of his formal study?

and is kdm using red labs in europe? i assume so, and i assume they are using the same proceduire as wpi and vip.

thanks.