HTLV-1 / XMRV Conference starts today!

[Jemal]

I think what we are going to see is that the contaminists will say the Switzer abstract doesn't contradict the Coffin paper. They will agree the abstract says recombination between MLV's is widespread, but that the Coffin paper showed XMRV is a specific recombinant made in a lab mouse. I remain very doubtful about that, but I don't understand the science enough.

It's true that there is no direct evidence against the Lo/Alter and Hanson/Bell studies. There are no negative papers that directly affect them. Alter has confirmed as well that his study is still standing. There is of course the whole contamination argument and it could also be applied to Lo/Alter and Hanson/Bell, saying it's easy to get contaminated by MLV's. They probably will try sooner or later, but I don't think they will succeed to knockout these studies. And as Alter said: his study is evidence that proves the WPI is right. It makes for an interesting, though frustrating situation.

 

[Enid]

Thanks for all you doing here Jemal - as you say interesting but frustrating situation. Keep wondering why K de M is holding back at present - he does work closely with the WPI (as does Beiger now). Personal feeling they will "crack it" and biding time for cutting edge findings (their own).

 

[alex3619]

That's true that it's highly unlikely that recombination is random, but this is genetics, not probability. Shouldn't Coffin know this?

Hi Willow, Coffin does know this I strongly suspect, but the argument is pure applied probability. His argument is not much better speculation than my own recombination speculation - not hard science, and subject to doubts. We should not take it as beyond question or conclusive. It is indicative only.

Just to expand on my earlier point: Coffin's claim, iirc, is that the chance of XMRV arising randomly from these two pre-XMRV sequences, ignoring other possibilities, is one in ten to the power twelve. My calculation, admittedly highly speculative, is that the number of recombinations last century is on the order of ten to the power eighteen. If I am even close to right, XMRV may have spontaneously arisen a million times. You have to be careful with this kind of math - I could be wrong, but he could be wrong too. Its only indicative.

Bye
Alex

 

[alex3619]

I just want to clarify that I understand... have they ruled out accidental contamination of the cell line with pre-existing XMRV? Is that what we're asking here?

Hi WillowJ, yes. Spot on. If the WPI and Lo and Alter results could be contamination, why not Coffin's? The mice used have no immune system. The cells used are permissive to XMRV. They are both highly susceptible to infection, although I do not know if the mice used express XPR1, the primary XMRV target receptor.

The XMRV seems so well adapted to prostate tissue, I would like to borrow an argument and say it looks pre-adapted. In other words, it was adapted to this tissue a long time ago.

Bye,
Alex

PS If the probability of XMRV arising in one in ten to the power twelve, which is more probable: XMRV arose in these tissues, or the tissues were accidentally contaminated with real XMRV?

 

[alex3619]

The Abbot Diagnostics abstract shows that a very small percentage of serology+ are cross-reactive with HLTV.

Note the 4% is not the 4% population or 4% blood donors, but 4% of those with HTLV, so does not account for any (except perhaps a negligible) amount of Japanese blood donors testing positive for XMRV (people with cancer cannot give blood, so it could only be if they were undiagnosed at the time of donation).

Hi WillowJ, I think you are right about this, but the antibody data is all suspect. Many XMRV proteins are homologous to many human proteins, and that is what antiXMRV antibodies target. I don't know if any of the antibodies are specific for highly non-homologous regions of XMRV. If they are, that would be something.

Bye
Alex

 

[alex3619]

Thanks for all you doing here Jemal - as you say interesting but frustrating situation. Keep wondering why K de M is holding back at present - he does work closely with the WPI (as does Beiger now). Personal feeling they will "crack it" and biding time for cutting edge findings (their own).

Hmmm, speculation only: maybe KDM is starting to have doubts; or KDM is worried about local Belgian issues because of the way ME/CFS doctors are treated there; or, more interesting, KDM has something interesting, and doesn't want to say just yet.

Bye
Alex

 

[Jemal]

Hmmm, speculation only: maybe KDM is starting to have doubts; or KDM is worried about local Belgian issues because of the way ME/CFS doctors are treated there; or, more interesting, KDM has something interesting, and doesn't want to say just yet.

KDM has presented his data on the investinme conference. Also I heard someone say that he did present at the retrovirology conference yesterday. He is also one of the speakers at the symposium that will take place after this conference. So I don't think he has doubts (I don't speak with him directly of course, I am not his patient).

The problem I have with KDM is that he never seems to publish anything. But I don't know if that's his fault because he is not trying or it's the journals, because they don't want to publish his material. I have seen many of his patients say the latter, so I guess that is what's happening. He is popping up a lot in the media, so he's not afraid to be a public person, and he is also making some very strong statements sometimes. He is willing to engage.

edit: WillowJ pointed out later in this thread that KDM does in fact publish, so I was wrong about that.

 

[Enid]

Very much so Jemal - in the early days he even arranged a Press Conference in the UK. He must be a very busy man too - treating thousands. Much looking forward to anything from him - he's certainly a stayer even if "politics" behind the scenes make publications difficult.

 

[Spring]

I'm sure KDM has very good reasons to withhold his paper. He surely is very commited and I'm very sure he has no doubts about XMRV at all. And he's not afraid of making statements and to put his reputation at stake. I'm a patint of him and I will visit his office tomorrow. I will not see him, but I will ask the nurse if he can tell me something about it.

Jemal: Thanks for all the information
@others: Thanks for your discussion, although I cannot follow a lot of it, but I can take some peaces which make me hopefull again. The material becomes more and more technical so I have to give up talking about it, because I'm afraid it won't make any sense.

 

[Jemal]

Very much so Jemal - in the early days he even arranged a Press Conference in the UK. He must be a very busy man too - treating thousands. Much looking forward to anything from him - he's certainly a stayer even if "politics" behind the scenes make publications difficult.

Yes, he is a doctor of course and his patients come first. I would certainly like his knowledge to be spread around, so we would have more doctors to turn to. KDM has so many patients you have to wait for months to see him (or it used to be liked that, I don't know for sure if this is still the case, but I fear the worst, because there are only getting more and more of us).

 

[eric_s]

Yes, he is a doctor of course and his patients come first. I would certainly like his knowledge to be spread around, so we would have more doctors to turn to. KDM has so many patients you have to wait for months to see him (or it used to be liked that, I don't know for sure if this is still the case, but I fear the worst, because there are only getting more and more of us).

I agree. I wonder why these doctors like him don't train others and expand. They should start a clinic than can see more people. In any other sector this is what would happen, why do these mechanisms seem not to work here?

 

[Enid]

It's the b..... politics eric of lesser people. Not seeking answers to allieviate but play out endgames of their own. K de M and WPI different. Small bright hope on the horizon is the capacity to share/discuss /learn (researchers) from each other if they are able to accept. And the more K de M's and WPI's the better.

 

[Jemal]

I agree. I wonder why these doctors like him don't train others and expand. They should start a clinic than can see more people. In any other sector this is what would happen, why do these mechanisms seem not to work here?

In the Netherlands some doctors have created "fatigue clinics" (I am certain the name alone is offensive to some of us ). The problem is, there is not a treatment that helps a significant amount of patients. Some patients do well on certain treatments, but many do not.

 

[Bob]

The Abott abstract was linked in the news section on the WPI website, so they must think it's important too:

http://www.wpinstitute.org/news/news_current.html

I can't see the significance of this study.
They say they couldn't detect XMRV sequences, and that the antibody results could be due to cross-reactivity.
So it looks like an unhelpful negative study to me.
Am I missing something?

 

[Jemal]

I can't see the significance of this study.
They say they couldn't detect XMRV sequences, and that the antibody results could be due to cross-reactivity.
So it looks like a negative study to me.
Am I missing something?

If it's a negative paper, it's not the typical negative paper, as XMRV seroprevalence is reported up to 0,6% in US blood donors.
Now, it could also be 0, because the antibody results could be due to cross-reactivity. Which means I think that they can't tell if people have HTLV or XMRV? Isn't that strange?

And even if they are "only" finding HTLV, I think it means 0,6% of the US blood donors tested, carry this retrovirus. Which is still scary.

Finally, if they really are finding XMRV, the percentage will go up, because they didn't test for other MLV's (Lo/Alter and Hanson/Bell) I think.

I don't know if they have measures in place to kill retroviruses in donated blood, by the way. I have the feeling though if they even have such measures, they might not be sufficient. It's one of the reasons the BWG was established I guess.

 

[Bob]

If it's a negative paper, it's not the typical negative paper, as XMRV seroprevalence is reported up to 0,6% in US blood donors.
Now, it could also be 0, because the antibody results could be due to cross-reactivity. Which means I think that they can't tell if people have HTLV or XMRV? Isn't that strange?

And even if they are "only" finding HTLV, I think it means 0,6% of the US blood donors tested, carry this retrovirus. Which is still scary.

Finally, if they really are finding XMRV, the percentage will go up, because they didn't test for other MLV's (Lo/Alter and Hanson/Bell) I think.

I don't know if they have measures in place to kill retroviruses in donated blood, by the way. I have the feeling though if they even have such measures, they might not be sufficient. It's one of the reasons the BWG was established I guess.

So the significance could be due to HTLV in the blood supply rather than XMRV?

Which means I think that they can't tell if people have HTLV or XMRV? Isn't that strange?

Yes, that is unexpected. I don't understand why there is cross-reactivity though. We need to see the whole paper.

 

[Enid]

Bob - are we counting "studies" for or against in terms of numbers - off the point - we seek a simple answer (well a pretty complex in retrovirology) to the disease Myalgic Encephalomyelitis/CFS.. Papers for or against XMRV is still an amazing finding.

 

[Enid]

Bob - hoping not to offend - 11 self years into ME, all the pathologies spoken of here on PR well known to me and the history of UK denial, been through the toughest in A&E (psychos) despite passings out. Let us follow the the very special people dedicated to/ unravelling. I could disappear from the scene EXCEPT for all - I will never. So lets's follow unravelling science knowing the politics in ME/CFS. (those who seek to heal and those into personal "glory" alone).

 

[alex3619]

I agree. I wonder why these doctors like him don't train others and expand. They should start a clinic than can see more people. In any other sector this is what would happen, why do these mechanisms seem not to work here?

Hi eric_s, KDM is cooperating with a number of doctors. For example he is cooperating with Dr Lewis in Melbourne, Australia. In turn, Dr Lewis is training two new doctors. I suspect the WPI is also intending to train docs. Things are happening, just slowly and maybe sporadically. Bye, Alex

 

[Enid]

Good to hear alex. (your note to eric).