5th Invest in ME/CFS Conference - Programme May 24 2010

[gracenote]

From the blog:

CFS Patient Advocate

Dr. Cheney has long believed that a retrovirus could be at the center of this disorder. In his lecture, Dr. Cheney indicated that 38 of 47 consecutive patients in his practice were XMRV positive by culture testing at VIP lab.

I am wondering if it was WPI rather than VIP who tested these patients. This figure seems high for VIP and I would think that Cheney would have had an in with WPI. Is anybody able to add any clarity here?

 

[Impish]

Interesting..

Same here, and I believe that his enterovirus (or herpesviruses for that matter) and xmrv theories are mutually inclusive, actually if you remember Nora Chapman work is all about EVs mutating into forms that can establish permanency, if/when they are not cleared by the immune system in the acute/initial stage of illness.

In most people EVs are cleared after 5-7 days of acute illness, but in some cases that does not happen, the virus THEN loses parts of its genetic code that enables it to hide for good (well hopefully not for good :worried and cause long-term effects by messing up cellular metabolism in more ways than one. It also expresses proteins and replicates in this mutated form

This is exactly what she has been observing in mice cardiac muscle tissue, she did mention in conversation that it could well be happening in other parts of the body but sadly this is underresearched area.

Now XMRV or similar could well be the factors that stop the immune system from clearing Evs in acute stages, therefore the two theories are quite compatible imho!!


Btw she also said EVs are masters of recombination the part of their genetic code that they lose on purpose, they can later easily borrow from other viruses (or viral fragments from contaminated vaccines )

Interesting... I read a paper from awhile ago that talked about a mutated version of MulV (the mouse version of XMRV) that grabbed part of the genome from another virus and caused "Mouse Aids" (look in google scholar for articles if interested).

 

[awol]

From the blog:

CFS Patient Advocate



I am wondering if it was WPI rather than VIP who tested these patients. This figure seems high for VIP and I would think that Cheney would have had an in with WPI. Is anybody able to add any clarity here?

I think the main difference in numbers between VIP and WPI is only that VIP is testing people from all over the place, many of whom are self-diagnosed and not CCD. The WPI has strict selection criteria. WPI samples are tested at VIP, or use same methods because the Whittemores partially own VIP.

 

[fred]

the Whittemores partially own VIP.

Their share has been placed in a trust. There is no direct ownership.

 

[Robin]

I think the main difference in numbers between VIP and WPI is only that VIP is testing people from all over the place, many of whom are self-diagnosed and not CCD. The WPI has strict selection criteria. WPI samples are tested at VIP, or use same methods because the Whittemores partially own VIP.

There are people on the forum who have been diagnosed, are CCC, and have tested negative. I don't think selection criteria is sufficient to account for the discrepancy.

 

[awol]

There are people on the forum who have been diagnosed, are CCC, and have tested negative. I don't think selection criteria is sufficient to account for the discrepancy.

Well hard to say. I do think it is an important part of the reason, because confusion over diagnostic criteria and the number of people misdiagnosed with ME/CFS when they actually have something else will play a role. As for people with CCC who have tested negative, it is too early to tell if they are actually really absolutely negative until the antibody test comes out.

Didn't know about the trust thing, but that doesn't change the fact that WPI and VIP are in VERY close collaboration on methodology.

 

[Lynn]

I believe that WPI runs four tests to test for XMRV. VIP only does the culture so far. I would much rather be tested by WPI at this point.

Lynn

 

[fred]

I believe that WPI runs four tests to test for XMRV. VIP only does the culture so far. I would much rather be tested by WPI at this point. Lynn

The four WPI tests are:

1. Serology (anti-body)
2. Western blot of viral proteins (gag, env)
3. Proviral DNA (infected cell) detected by PCR (DNA), RT-PCR (virion RNA)
4. Isolation of virus in cell culture

At present, VIP offers culture only using the WPI method.

WPI and VIP may be in contact ref the culture methodology but they are not in contact ref the patients being tested nor the results. Judy has stated that this would be unethical.

The only way in which the WPI would have contact with VIP samples is if a specific patient gives permission for blood stored by VIP to be used by the WPI.

 

[Bob]

I believe that WPI runs four tests to test for XMRV. VIP only does the culture so far. I would much rather be tested by WPI at this point.

Yes, that's what I thought I'd heard as well... I think I read that the WPI are trying to perfect, and standardise, their anti-body test, and only then will it be given to their VIP laboratory to use for testing the public... and the VIP laboratory will then test all of their previous customers' negative tested blood samples using the new technique.

 

[awol]

I am not disagreeing that WPI is searching more thoroughly. I am also in no way saying they share samples with WPI. I don't know where people are getting this from what I said. I simply said they share methodology. Given that the WPI is only testing people involved in their studies and is not a commercial lab, VIP is the best option available to most of us...or should I say you who are in north america.

 

[ukxmrv]

Gracenote,

A friend who tested through Dr Cheney said that her bloods went to VIP dx and the results had VIP dx on them. Not necessary true for everyone though of course. Her group had very high results back when VIP dx was doing the PCR and the first culture test.

She was attributing this to very fresh blood delivered quickly

 

[_Kim_]

I think the main difference in numbers between VIP and WPI is only that VIP is testing people from all over the place, many of whom are self-diagnosed and not CCD. The WPI has strict selection criteria. WPI samples are tested at VIP, or use same methods because the Whittemores partially own VIP.

I meet the CCD and tested negative by PCR & Culture via VIPdx. FWIW, some of the XMRV+ folks weren't even diagnosed with CFS - they had been dx'd with chronic Lyme or Fibromyalgia.

 

[awol]

I meet the CCD and tested negative by PCR & Culture via VIPdx. FWIW, some of the XMRV+ folks weren't even diagnosed with CFS - they had been dx'd with chronic Lyme or Fibromyalgia.

yes, will have to see after the antibody test if you are really truly negative. Tests still unreliable. Certainly no conclusions can be based on this yet.

Chronic Lyme may turn out to be the same thing as ME/CFS in the end, but with different uncleared infection. Also, fibromyalgia and ME/CFS are often mixed up by doctors. None of these categories mean anything much until there is something real to base the diagnosis on.

 

[fred]

Also for what it's worth, Cheney's view is that if you have tested positive on PCR or culutre, you are positive. If you have tested negative on PCR or culture, you are not necessarily negative until you have had an anti-body negative.

 

[gracenote]

I think the main difference in numbers between VIP and WPI is only that VIP is testing people from all over the place, many of whom are self-diagnosed and not CCD. The WPI has strict selection criteria. WPI samples are tested at VIP, or use same methods because the Whittemores partially own VIP.

I am not disagreeing that WPI is searching more thoroughly. I am also in no way saying they share samples with WPI. I don't know where people are getting this from what I said. I simply said they share methodology. Given that the WPI is only testing people involved in their studies and is not a commercial lab, VIP is the best option available to most of us...or should I say you who are in north america.

I had a response that didn't go through a while ago. Were the forums down?

WPI does it's own testing. They test all kinds of people. Cheney's patients were selected by him and I'm sure would all meet CCC. WPI has a serology test that VIP doesn't have yet. I think that many negatives from VIP will test positive with better testing methods.

We can keep guessing, but I'm interested in what was actually said at the conference and wondering if what was reported was correct.

 

[JAS]

I was tested by VIP and in the UK...VIP do not offer the serology test yet which is where the 95% figure came from from the WPI, they are only offering the culture test so far which yielded the 67% result...I believe that they are hoping to offer the serology test soon. I think that Cheney's figure is correct with VIP, I did have a quick word with him about it and he is supportive of the XMRV theory. I also had a word with Dr Chia and he said simply that he is not sure about XMRV....presumeably as he does think enteroviruses are involved. I also had a word with Dr Leonard who was lovely, my husband asked him if he thought that people with properly defined ME recover, he said that they do improve but they don't recover completely, they compare themselves with when they are ill and say that they are better, but if they compared themselves to before they were ill they would realise they are not completely recovered...it can come back too. Please don't quote me verbatum here...all words to that effect and my brain has turned to mush! However, Dr Mikovits was directing her part of the speech on testing to Dr Huber directly in a calm and professional way, I think that she said something like that it does not act like other retroviruses with regards to testing, it is not her fault, it is biology. I also noticed Huber giving an interview at the top of the room as I left at the end....I have to say that her delivery of her results of XMRV at the end of her speech almost sounded victrionic....it did not endear her!

 

[awol]

ok, I think I see where the confusion is coming from now. What I meant was that VIP methods were validated this way. The discussion over whose methods are preferred is not particularly important for most of us, because as I was trying to point out, the WPI is not a commercial lab. Their tests are not available to most of us. What is available is VIP, which, because they are linked, offers testing methods validated by the WPI.

When the WPI does their studies, they carefully verify who is included. When doctors across the continent send in samples, the selection is somewhat looser. This would result in a high likelihood that the VIP will have a lower percentage of positives than the WPI. Remember there are people with depression, with coeliac, and all kinds of other diseases who have been wrongly told they have CFS who might be getting tested at VIP.

 

[natasa778]

interesting... I read a paper from awhile ago that talked about a mutated version of MulV (the mouse version of XMRV) that grabbed part of the genome from another virus and caused "Mouse Aids" (look in google scholar for articles if interested).

This is how XMRV is thought to have come about...

makes my imagination run wild but how about an EV shedding part of its env code, this is then 'borrowed' by a MulV (that got into a human god knows how ... ) and xmrv is created. isn't it by one env bit of the code that xmrv differs from the mouse retrovirus it originates from...

 

[gracenote]

When the WPI does their studies, they carefully verify who is included. When doctors across the continent send in samples, the selection is somewhat looser. This would result in a high likelihood that the VIP will have a lower percentage of positives than the WPI. Remember there are people with depression, with coeliac, and all kinds of other diseases who have been wrongly told they have CFS who might be getting tested at VIP.

"When WPI does their studies" is not a statement that has any support. To date, only one "study" has been published. I am part of another "study," still in process, not published, that includes a wide variety of patients, family members and healthy controls. They include a detailed questionnaire so they will be able to see who shows up as positive, so in that sense they "carefully verify" who is being tested. But they are definitely not just testing ME/CFS patients.

I don't think there is any way to compare the results from VIP and WPI. I think we can say that adding in a serology test will result in more positive results.

 

[awol]

ok I am feeling under attack for reasons that I don't understand - mostly it seems to be misunderstandings of what I wrote. It is one of those conversations where people are arguing the same points from different angles and only think they disagree. Anyway, signing out now, because I have the impression anything else I write will be misinterpreted.