NIH/FDA XMRV Paper by Dr. Alter Out!

[Sunshine]

Ignore the psych influenced disinformation from the UK.

She's already claimed XMRV doesn't exist in the UK and there are plenty of people + with XMRV in the UK, some who are in a study by Dr Mikovits about to be released!

Dr McClure's mind is limited in scope when considering CFS, whilst her pockets are full to the brim, probably not with strawberry jam.

CFS & ME patients with XMRV, (just as gay men with HIV before us), are expendable in the eyes of the discriminator. People have made comments they cannot come back from, McClure has no option but to keep stating the same old thing, this is what they are paid to do. McClure did a joint failed XMRV study in CFS patients with a man (Wessely) who said about ME CFS patients beliefs they have a virus causing their symptoms:

''Viral attribution reflects somatization par excellence''.
(Which means linking a virus to your CFS, is ultimate proof of being a hypochondriac/hysterical person).

How can she possibly find XMRV in ME CFS with a co-conspirator who says things like this? How can she possibly give a positive vibe to the FDA MULV findings in CFS with a co-conspirator like this? Impossible.

She must deny and deny she does.

 

[julius]

George,

CFS1, CFS2 etc are what he is calling the different strains of the virus, not different presentations of the disease.

I think I'm getting this from mindy's article and interview with alter. I definitely read it today. They found four types of the vrus, CFS1,2,3 and the fourth they are refering to as something else.

 

[Mark]

I think we should all bear in mind that this is technically correct:

such a high frequency of infections with MLV related viruses in patients with CFS could reflect an increased susceptibility to viral infections due to an underlying CFS-related immune dysfunction, rather than a primary role for these viruses in the pathogenesis of CFS.

That's true and we don't need to be wedded to the idea that the MLVs are the one fundamental cause. There has to be at least one co-factor anyway (unless the cofactor is that you need MLV-x AND MLV-Y AND MLV-Z, which is plausible).

At the same time, we should make sure to point out that:

- all known retroviruses cause immune dysfunction, in humans and animals (references to confirm that will be useful...)
- CFS patients have immune dysfunction

This is probably not a coincidence!

So although causality is not proven, it is very logical and likely to be true, and even if there are other causes as well, this breakthrough is still "the great leap forward".

 

[LJS]

Can someone update the XMRV wiki????

 

[RustyJ]

I think we should all bear in mind that this is technically correct:



That's true and we don't need to be wedded to the idea that the MLVs are the one fundamental cause. There has to be at least one co-factor anyway (unless the cofactor is that you need MLV-x AND MLV-Y AND MLV-Z, which is plausible).

At the same time, we should make sure to point out that:

- all known retroviruses cause immune dysfunction, in humans and animals (references to confirm that will be useful...)
- CFS patients have immune dysfunction

This is probably not a coincidence!

So although causality is not proven, it is very logical and likely to be true, and even if there are other causes as well, this breakthrough is still "the great leap forward".

Occam's Razor. If it's in almost every CFS patient, despite the poor diagnostic criteria, then it is most likely it is the cause. Can you imagine how bizarre that is? Approx 90% of those diagnosed with CFS have a retrovirus yet the diagnostic criteria were regarded as being so vague no one would rule out psychiatric disorders. 9 out 10 CFS patients believed they had a virus despite all the best medical advice to the contrary. This should be recorded in one of the biggest psychiatric studies of all time - on how not to treat patients.

 

[Hope123]

Haven't read this yet but a few comments:

1. Interesting that all fulfilled Holmes criteria but only about half of CFS subjects fulfilled 1994 criteria......I wonder what made them drop out of 1994 criteria as I thought Holmes was a much more stringent definition. In any case, would be good to hear Komaroff's take since patients are from his practice. For those who don't know, Komaroff is a "good guy"; he's based at Harvard and has studied and published on CFS for the last two decades. He was one of the first people to publish on HHV-6 as a possible cause in the Incline Village outbreak in the early 1990s.

2. From what I remember, MLVs are a large group which is further classified into polytropic, xentropic, etc. I don't remember exactly what these definitions are but it relates to whether mice get sick with them (they don't get sick from xenotropic I think) and to the structure of the virus having to do with RNA transcription, etc. So, for those who remember the SATs in high school, XMRV is to MLV as chocolate is to ice cream flavors. (i.e. there are many different types of ice cream -- chocolate, vanilla, strawberry, etc. -- but it's all ice cream).

 

[RustyJ]

Alter says no proven link, yet still named the virus variants CFS... This is a big endorsement

They were named, appropriately, "CFS Type I", "CFS Type II", etc.

 

[VillageLife]

prove the link soon!

 

[Bob]

There may have been different MLV variants in the WPI samples, but I expect that the WPI didn't have the funds to genetically sequence the entire genome of each virus they detected... They probably just sequenced one or two... I don't know if this is outlined in the Science paper. Obviously the FDA and NIH have almost unlimited funds, so they could sequence each and every virus which they isolated, and so they could detect the variants. But I suppose this depends on the specificity of the tests which the WPI were using.

UPDATE:
I've read the published PNAS paper now, and it seems that the WPI has done more sequencing of whole viruses than Alter (I'm not sure if he's done any sequencing of whole viruses for this study).
Rumour has it that Mikovits is now finding different strains of MLV-related viruses (other than XMRV) in her original samples, as well as XMRV (i.e. finding more than one strain of MLV-related viruses in individual patients).

 

[Mark]

Occam's Razor. If it's in almost every CFS patient, despite the poor diagnostic criteria, then it is most likely it is the cause. Can you imagine how bizarre that is? Approx 90% of those diagnosed with CFS have a retrovirus yet the diagnostic criteria were regarded as being so vague no one would rule out psychiatric disorders. 9 out 10 CFS patients believed they had a virus despite all the best medical advice to the contrary. This should be recorded in one of the biggest psychiatric studies of all time - on how not to treat patients.

Nice one Rusty, what I'm looking for is soundbites to respond to disinformation, and when they say "doesn't prove causality" we can say "correct - but by Occam's Razor..."

 

[Mark]

prove the link soon!

It's causality that isn't proven, not the link. The evidence for the link (association) will just get stronger and stronger with more studies, it will never be "proven".

And please don't try to prove causality...

Koch's postulates are:

1. The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy animals.
2. The microorganism must be isolated from a diseased organism and grown in pure culture.
3. The cultured microorganism should cause disease when introduced into a healthy organism.
4. The microorganism must be reisolated from the inoculated, diseased experimental host and identified as being identical to the original specific causative agent.

So it can't be proven until someone deliberately infects someone with it! Please don't do that! I don't need Koch's "proof" of causality that badly.

Causality is a red herring here anyway, since we already know the first criteria cannot be met - unless the healthy controls are all destined to get sick eventually (and I'm not waiting around for that...)

 

[pictureofhealth]

Alter says no proven link, yet still named the virus variants CFS... This is a big endorsement

Very well spotted RustyJ.

It seems from one of the articles I've just read, in which the Editor of PNAS (Randy Shekman?) was interviewed about the publication delay, that one of the PNAS reviewers had asked Harvey Alter to try to prove that the retrovirus was integrated into the human DNA, if I understood correctly.

It seems Alter decided that it would be unfair (to us!) to delay the paper any further this time around, but that the Editor hopes that will be the focus of Alter's next study (BEFORE he starts clinical retroviral studies).

Would proving viral integration prove causation?

McClure meanwhile is off on her own planet once again - 'Well they didn't actually find XMRV' etc etc. Denigration is now her main approach, rather than furthering the science or being curious to find genuine answers that might actually help someone.

 

[Recovery Soon]

Would proving viral integration prove causation?

Good question. How important is it?

 

[Hope123]

Also, names of things and classification get changed as more is known. HIV was known as HTLV-3, and HTLV-4 before being given a name itself and HIV has two major variants, HIV-1 and HIV-2.

 

[Chris]

A great paper as far as I can tell (not very far!), but one disturbing statement: "Future studies should adhere to consensus definitions such as that developed by the Centers for Disease Control and Prevention (CDC)." Why and how did they write that? That damned definition has caused so much trouble over so many years.... why?? Chris

 

[V99]

I bet they mean Fukuda not Revised Fukuda. We do need to know how many people this encompasses, so it will have to happen at some point. Then they see how closely the CCC fits the positive samples. It may be that those who fit CCC have the worst virus of the bunch, and those spilling into Fukuda have the least nasty bug.

 

[Bob]

It seems from one of the articles I've just read, in which the Editor of PNAS (Randy Shekman?) was interviewed about the publication delay, that one of the PNAS reviewers had asked Harvey Alter to try to prove that the retrovirus was integrated into the human DNA, if I understood correctly.

It seems Alter decided that it would be unfair (to us!) to delay the paper any further this time around, but that the Editor hopes that will be the focus of Alter's next study (BEFORE he starts clinical retroviral studies).

Would proving viral integration prove causation?

I think that this would just be the 'highest standard' of proof for this sort of research study, rather than a proof of causality.

He wrote a critique, which I then conveyed to Alter, which called for the paper not to be published until they could demonstrate that the virus' genes were integrated into the human genome. Alter then responded several weeks later saying he of course understood this. This was indeed the highest standard that would prove the case, but he felt that his data and the care that he had used in the selection and maintenance of the samples made his data very strong. He felt that by delaying this further, that would be a disservice to the community to hold the data that much longer.

http://www.the-scientist.com/blog/display/57628/

 

[dannybex]

I'm not at all disappointed by this.

I never expected them to come out with a sincere apology for CFS patients and a promise to hold those responsible for the quackery we've had to endure for the last 20 years accountable.

This is a good day for everyone with CFS. Try to enjoy it imo.

YES, THIS IS A GOOD DAY!

My only disappointment is the size of the study...so small.

I guess because it was a FDA/NIH study, I was expecting a larger patient and control group, at least larger than in the original Science paper.

 

[urbantravels]

I was expecting a larger patient group too.

I'm still wondering about what Judy M. said to the press last week about something from the FDA being due to be published "in September."

And how Those Who Seem To Know Things around here said that there were actually *two* papers, this one in August and something else in September.

 

[Bob]

I think that, as the significance of this study sinks in, and the consequences become clearer, then it will become a more and more important study to us...
I think this might be as significant as the original Science paper, as it seems to have solidified the original study, but also widened the potential cause of ME/CFS to a range of Human Gamma Retroviruses, and not just XMRV.

This is a big day for us indeed, I think.

No one is going to dismiss Alter's work, as they have tried to do with Judy Mikovits... it would just make them look stupid, ingorant and incompetent.
So I think that we won't see any more revelling in zero/zero studies from this point forwards.