New unofficial data on XMRV in CFS according to WPI

[Countrygirl]

Gerwyn;57977]It is a different way of saying the same thing HIV causes aids XMRV causes ME . if anything the statement is stronger

Gerwyn, I'm in a pea souper

How is 'in subgroups of CFS' slighter stronger than saying XMRV is to CFS what HIV is to AIDS, unless you are saying that only a subgroup of people with AIDS have HIV?

From a gently bewildered inhabitant of Endland.

 

[Hysterical Woman]

36%?

Dr. Lombardi said they tested 300 people (Dr. Mikovits is talking about 200), and that 36% of them tested positive

36%? Does that number include people who were tested by PCR plus people who have recently been tested by viral culture?

Anybody know? Thanks

HW

 

[Hysterical Woman]

If memory serves me that was a number releasded in early january and therefore would of included the PCR and Culture Tests. I remember as it was just prior to my positive result by culture, on january 11 from VIPdx but post the IC study on January 5 th. I was tested by pcr and culture.

Hi Joy,

Thanks for the info. Since the number is that low, it helps me make a decision about passing on the virus culture test and waiting for the serology. I got a call yesterday from VIP Dx asking if I still wanted a test kit. I can't afford to have both. I heard rumors that the serology test was going to be available in April - does anyone know?

VIPdx is a seperate entity and is a comercial and not research lab therefore there satistics bear no relevance to any study or research conducted at the WPI.

I hope this clarifies things a bit.

Joy

I understand that the VIP numbers don't reflect on WPI's research.

Thanks again, the information does help clarify.

Take care,

HW

 

[Knackered]

I understand that the VIP numbers don't reflect on WPI's research.

No doubt people without canadian criteria CFS have been getting themselves tested with VIP, hence the lower percentages.

 

[Hysterical Woman]

No doubt people without canadian criteria CFS have been getting themselves tested with VIP, hence the lower percentages.

Thanks, Nackered, good point.

 

[Gerwyn]

Gerwyn, I'm in a pea souper

How is 'in subgroups of CFS' slighter stronger than saying XMRV is to CFS what HIV is to AIDS, unless you are saying that only a subgroup of people with AIDS have HIV?

From a gently bewilderered inhabitant of Endland.

Subgroups is an unfortunate term ASD is a continum there are no subgroups as such. There may be subgroups of ME/CFS or seperate illnesses lumped together by the silly definition She suggests THAT XMRV is present IN 85% OF PATIENTS.this obviously calls the subgroup theory into question unless their diagnostic criterea are identifying ME patients and that is a seperate illness altogether as many still assert

The same disease can present quite different symptoms but have the same causation eg MS I am in no doubt that she is suggesting that XMRV causes both autism and ME.She said that she aimed to show that Xmrv was to cfs that HIV was to AIDS

 

[Countrygirl]

=Gerwyn;57995]Subgroups is an unfortunate term ASD is a continum there are no subgroups as such. There may be subgroups of ME/CFS or seperate illnesses lumped together by the silly definition She suggests THAT XMRV is present IN 85% OF PATIENTS.this obviously calls the subgroup theory into question unless their diagnostic criterea are identifying ME patients and that is a seperate illness altogether as many still assert

The same disease can present quite different symptoms but have the same causation eg MS I am in no doubt that she is suggesting that XMRV causes both autism and ME.She said that she aimed to show that Xmrv was to cfs that HIV was to AIDS

Thank you, Gerwyn. So, is Dr Judy saying that she has tested a further group of 200 patients with CFS or whatever-you-want-to-call-it-within-reason and that 85% were positive for XMRV? Have I understood that correctly? Has she not included the previous 101 cohort? That sounds impressive to me, but I want to be cautious. :mask:

 

[fds66]

I think this is an abstract to a talk that won't be presented until May so I assume that it may describe data that hasn't been presented yet. That may be why no-one knows which results this refers to. When the full talk is presented I hope it will contain more information.

 

[omerbasket]

Hi Joy,

Thanks for the info. Since the number is that low, it helps me make a decision about passing on the virus culture test and waiting for the serology. I got a call yesterday from VIP Dx asking if I still wanted a test kit. I can't afford to have both. I heard rumors that the serology test was going to be available in April - does anyone know?



I understand that the VIP numbers don't reflect on WPI's research.

Thanks again, the information does help clarify.

Take care,

HW

I would like to say something: The thing is, you don't know who were the people that sent their blood samples to VIPdx. For example: let's say a ME/CFS patient sends his sample and found to be XMRV positive. Perhaps he would want to test his wife and three kids, even though they are not sick? So he sends 4 samples. And I believe there is a reasonable, if not a very good chance, that those 4 samples will come back all negative. So in this case, there are 20% positives, but 100% ME/CFS patients who are positive. Add to that the fact that VIPdx still don't have a serology test, and that not all the people diagnosed with ME/CFS follow the restrict criterias that the WPI study used, and you may get the number 36, even if the WPI's study represents accurately the precentage of XMRV positives in a group of people that follow the study's criterias.

 

[flybro]

For example: let's say a ME/CFS patient sends his sample and found to be XMRV positive. Perhaps he would want to test his wife and three kids, even though they are not sick? So he sends 4 samples. And I believe there is a reasonable, if not a very good chance, that those 4 samples will come back all negative. So in this case, there are 20% positives, but 100% ME/CFS patients who are positive.

Brilliant thinking.

 

[MEKoan]

I would like to say something: The thing is, you don't know who were the people that sent their blood samples to VIPdx. For example: let's say a ME/CFS patient sends his sample and found to be XMRV positive. Perhaps he would want to test his wife and three kids, even though they are not sick? So he sends 4 samples. And I believe there is a reasonable, if not a very good chance, that those 4 samples will come back all negative. So in this case, there are 20% positives, but 100% ME/CFS patients who are positive. Add to that the fact that VIPdx still don't have a serology test, and that not all the people diagnosed with ME/CFS follow the restrict criterias that the WPI study used, and you may get the number 36, even if the WPI's study represents accurately the precentage of XMRV positives in a group of people that follow the study's criterias.

I think this is exactly what's happening. I would be far more worried if the VIP tests were yielding 80% +. I'm sure that all labs routinely have a far higher - than + on all diagnostic and screening tests. There are many confounding variables at this point and 36% seems about right when those being tested come from a population with a very high rate of ME but not, exclusively, ME patients. Makes total sense.

 

[ukxmrv]

Is that the pattern we are seeing though? (families being tested after 1 member positive with XMRV)

Given that there is a long wait for test kits (6 weeks) and then a long wait for results (4-6 weeks). I'm not seeing people here saying that they are testing their whole families (and have the test kits/results) and I'm not hearing it from other XMRV+ people.

Just a question mark on the idea - I don't know. Anyone else have any ideas as I may well be wrong?

 

[dannybex]

Hi Joy,

Thanks for the info. Since the number is that low, it helps me make a decision about passing on the virus culture test and waiting for the serology. I got a call yesterday from VIP Dx asking if I still wanted a test kit. I can't afford to have both. I heard rumors that the serology test was going to be available in April - does anyone know?

Sorry, but again this brings up another question that's been bothering me.

If testing after the Science study was published showed that 98% of PWC's were coming back positive, why can't they use those same testing methods? Why the need for the new serology test?

Plus...shouldn't VIP Dx be using the exact same type of testing methods that WPI is using? Isn't that what the WPI has been saying when discussing other (faulty) studies?

I don't get it.

d.

 

[Kati]

Dannybex, the research methods are not commercial. Dr Judy said they were meant to be for research. Refining a method and a test will make it more sensitive, and also offer less margin of error, and hopefuly can be used by more labs in the future.

 

[dannybex]

Thanks Kati -- that makes sense.

 

[MEKoan]

Yeah to everyone - lots of confounding variables. I don't think any conclusions can be drawn from this particular piece of info.

 

[Gerwyn]

Thank you, Gerwyn. So, is Dr Judy saying that she has tested a further group of 200 patients with CFS or whatever-you-want-to-call-it-within-reason and that 85% were positive for XMRV? Have I understood that correctly? Has she not included the previous 101 cohort? That sounds impressive to me, but I want to be cautious. :mask:

that is my understanding but it is wise to be cautious at this time

 

[Forebearance]

Hey, gracenote, I'm about to join Dr. Gordon's study too.

About the connection between Autism and ME/CFS, I want to say that it seems logical to me. There has been lots of speculation on the prohealth board over the years that the difference between CFS and ASD could be the stage of development of the brain of the person who gets it. People whose brains are not finished developing may get Autism and people whose brains are developed may get CFS.

 

[gracenote]

Hey, gracenote, I'm about to join Dr. Gordon's study too.

Hi forebearance,

Let us know how it goes.

 

[noddyboddy]

Is that the pattern we are seeing though? (families being tested after 1 member positive with XMRV)

Given that there is a long wait for test kits (6 weeks) and then a long wait for results (4-6 weeks). I'm not seeing people here saying that they are testing their whole families (and have the test kits/results) and I'm not hearing it from other XMRV+ people.

Just a question mark on the idea - I don't know. Anyone else have any ideas as I may well be wrong?

If I could afford it, I'd get myself and both kids tested. I have CFS, son has autism, daughter has irregular fatigue (pre-CFS?).

I have several health problems, but the cluster of symptoms that don't fit any of my 'real' (you know what I mean!) diagnoses are Canadian Clinical Consensus -- I have almost every single one of them, from the orthostatic intolerance to the sore throats to the whacked out immune system to the post exertional fatigue to the headaches to the sleep problems to muscle aches and the one I hate most of all: brain fog.

My mother's side of the family is a cluster of CFS-related issues: autism, heart failure, CFS, fibromyalgia, non-seropositive rheumatoid arthritis, prostate cancer, mysterious hormone issues that aren't Addison's disease, reproductive health problems in the females--once we have firmer information about XMRV and there's a reliable test available, I'll urge all my blood relatives to get tested.

We also have Native American ancestry on my mother's side, and Native Americans and African Americans are more likely to have CFS and to have more severe symptoms than the general population.