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From the 1st annual XMRV conference

Messages
5,238
Location
Sofa, UK
Did anybody else get the impression of lines drawn in the sand and that everybody thinks "they're right"???

Hmm yes but I also got the impression of total chaos and confusion and nobody really knows what's going on...with the likely exception of Dr Mikovits...but if so, only because she always knows loads of stuff that nobody else knows...and finally the impression that the only people who really understand what's going on in the big picture are the people who understand the politics of CFS, which they aren't allowed to talk about...
 

Deatheye

Senior Member
Messages
161
It was nice to hear a bit more, but considering this was an XMRV conference I was hoping we'd get some more big news out of it.

Agree. I was hoping for far more. The only really interesting thing for me was the part about HTLV / XMRV / cancer / neurological disease. Never before heared about that.
Anyone knows if there is any information from the closed session comming out?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I guessI was hoping for something that would do more to move on my understanding.
...
It was nice to hear a bit more, but considering this was an XMRV conference I was hoping we'd get some more big news out of it.

Yes, me too... I guess we'll now have to wait for the positive studies to get published... and then lots more waiting after that, as per usual, for other confirmation studies...



I'm going to bed now... thanks everyone for a great thread and discussion today... it was community spirit, and mutual support, at its best!
Thanks everyone :Retro smile:
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
. That is why changing a person's life is very important and very siginificant - even if it does not contribute to science, and such a thing shouldn't be underrated. Ofcourse science is very important - but helping a single person is important too.

That's a very good point. I agree with John Coffin that it's important to have a standardized method for quantifiably detecting the virus before clinical trials are done, because you need to have a way to measure whether the drugs are being effective. I also agree that individual off-label use doesn't further scientific research. But
I don't think he understands that some patients are so sick that they basically have nothing to lose, and that for them maybe having any kind of quality of life is more important than furthering science. Maybe more important even than helping other ME/CFS patients. I, for one, cannot fault them for that. I think people would understand that if we were talking about terminal cancer patients, so I think it's mainly a matter of people not understanding the severity of the illness in the sickest patients.

And L'shanah tovah, Omer.
 
Messages
5,238
Location
Sofa, UK
I wish we knew what Ruscetti was up to... It sounds ultra-interesting and significant!
Didn't Andrea say that he would be finally putting the questions to rest, or something like that?!
Yes, and all the key information that would clarify questions like who's affected was absent from the public record. Clearly that information didn't put the questions to rest or they wouldn't still be arguing. But if one simply accepted Ruscetti's results and ignored the negative results, I think it would put to rest many of the questions we have right now.
 

shannah

Senior Member
Messages
1,429
That's a very good point. I agree with John Coffin that it's important to have a standardized method for quantifiably detecting the virus before clinical trials are done, because you need to have a way to measure whether the drugs are being effective. I also agree that individual off-label use doesn't further scientific research. But
I don't think he understands that some patients are so sick that they basically have nothing to lose, and that for them maybe having any kind of quality of life is more important than furthering science. Maybe more important even than helping other ME/CFS patients. I, for one, cannot fault them for that. I think people would understand that if we were talking about terminal cancer patients, so I think it's mainly a matter of people not understanding the severity of the illness in the sickest patients.

And L'shanah tovah, Omer.

There isn't any reason why both can't be done at the same time. It's not like we've got a shortage of people for studies and clinical trials!
 
Messages
5,238
Location
Sofa, UK
That was your eleven hundred and eleventh post, Mark! Lucky!
Thanks for noticing that Sasha! Doing my Umpire Dickie Bird lucky dance in celebration! Almost makes up for making my 1000th post hidden away in the admin section. :rolleyes:
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
I know someone probably answered this, but this thread is growing faster than I can read it.

Comment made about "Iron Curtain" in Europe having two distinctly different XMRV?

That was interesting! If I understood correctly (which is questionable), it sounded as though they have found different types of MLV in mice in different parts of Europe. I gather someone had talked about that during the conference; I'd like to know more about that. Now that they're looking at different strains of HMLV, maybe that explains some of the negative studies?

I also thought the point made about the need to sequence the genome for the different strains was a good one. Awkward silence following that.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
There isn't any reason why both can't be done at the same time. It's not like we've got a shortage of people for studies and clinical trials!

But we do have a shortage of funding. So I'd like to see it go to a better understanding first.

Besides, we already know anecdotally that azt, (can't remember other two offhand) don't work too good.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
It was nice to hear a bit more, but considering this was an XMRV conference I was hoping we'd get some more big news out of it.

Yes, and we may still hear some more news. But we keep on the XMRV news; the conference was for the scientists who don't follow all the ins and outs to catch up on what's been happening. And hopefully, for them to have a chance for some bull sessions and brainstorming about where to go next.
 
Messages
5,238
Location
Sofa, UK
No way I can catch up with or follow discussion, still having major cognitive interference, but just want to say I caught all I could, thanks George for the notes you took, and I personally feel very hopeful about the potential for antiretrovirals no matter how some people try to obfuscate and interfere.
I really don't think anybody is trying to obfuscate and interfere Creekfeet. There are some massive and very real issues here. The major ones mentioned were emphasised by Coffin and others, I think there was even a caution by Mikovits:

- Proceeding with informal trials without a standardised quantitative assay will yield no usable data whatsoever and therefore benefit nobody but the handful of patients in those trials

- There are very significant side effects which have already been observed and I think it was even Mikovits herself who cautioned that at least some antiretrovirals being trialled are being found to be damaging mitochondria.

- Most significantly, Coffin cautioned very strongly that HIV is an actively replicating infection, and at the time this was observed this had indeed never been observed before; it is still very unusual for viral or indeed retroviral infection. The antiretrovirals are only effective for HIV because it is actively replicating. There is no reason to assume that HMRV is actively replicating and plenty of reason to expect that it is not.

So those are the very real concerns, and they are not obfuscation or interference.

Mikovits made a positive proposal to argue against this and suggest a way forward: she and 4 other clinicians (Bell, Komaroff, Cheney and Peterson) all have consistent results with XMRV positive cohorts. A combined cohort could be considered consistent and validated enough for clinical trials to take place on those patients already identified positive, and this is what she will be arguing for I am sure. But she will also need for the precise meaning of any results from such trials to be clear, otherwise the results will be unusable by everybody else.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Another huge problem with antiretroviral trials is resistance.

By using the wrong combination now a patient could actually end up unable to ever be treated.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
You know, until today I really, really tried to give McClure the benefit of the doubt, in spite of some of the, um, unenlightened remarks she's made about ME/CFS patients and about other researchers. But today I decided she really is a _____ and I don't like her. Although the catfight did add some excitement to the proceedings. I think at this point she's much more concerned with besmirching Judy Mikovits than she is in good science (MUCH less, those of who are sick).
 
Messages
5,238
Location
Sofa, UK
Definitely thought lines were being drawn but I thought Judy Mikovits handled herself superbly...I am convinced that the problems come from the various criteria under which they are diagnosing CFS/ME.
I thought Dr. Mikovits looked rather tired and frustrated, which is not at all surprising, but in spite of that she did indeed put up an amazing fight and held her corner in an environment in which she was at times almost a lone voice (amongst the scientists - she had big support in the audience and beyond the conference walls though!). Every challenge that was thrown at her, she had a simple and convincing response. As always. She is working so very hard for us all - I think (hope) that even those who have questions about the details can't fail to be massively impressed and grateful for everything she's doing.

And yes it's so obvious that the problems are caused mainly by the criteria, however what has confounded this obvious truth from being clear to everyone is the additional complicating factor of the unforeseen methodological problem: the issues she says have been identified just in the last 2 weeks around the collection and storage of samples. That this side was the major issue - and not the need to culture cells prior to PCR - was actually made clear by Alter's analysis of the CDC samples. When his assay failed to find positives from the CDC samples, and showed a very weak 10% signal, those who realise that the whole cohort probably had no true CFS patients in it could also work out that there was an additional problem in the way the samples were collected and stored: heperinized tubes impair the ability to detect. My guess is that the weak signal Alter found in the CDC samples is the remnant of the level of HMRVs in the general population.

The fact that these tubes are doing something to HMRVs, which nobody seems to have expected - even Mikovits herself didn't emphasise those points in her critique of the negative studies, emphasising instead the need to culture the virus - might point the way to potential treatments: why are those samples being degraded by these methods?

Mikovits took every step necessary to get the results: belt, braces, and then some. She took every precaution to make sure it worked properly - and then when everybody else failed to replicate those meticulous methods (which would have taken years) nobody knew which of her steps was the one that was critical to success. But it does sound like we now have the answer: collection and storage of the samples.

There was further strongly suggestive evidence of this from the Kerr study, actually: remember that small group of about 25 samples from healthy controls that showed anomalous results with MLV antibodies? They all came from one area, and were written up as "oh, some kind of weird anomaly, probably means nothing...". But I thought at the time, and still do think, that there must have been some aspect of the collection/storage process that differed in those samples. I'd put my money on those being the only samples that used non-heperinized tubes and also were stored in the right way for the right length of time. And the precise details of exactly what's going on there will yield a great deal of information about HMRVs and what they need to survive in stable form.
 

Sing

Senior Member
Messages
1,782
Location
New England
That was interesting! If I understood correctly (which is questionable), it sounded as though they have found different types of MLV in mice in different parts of Europe. I gather someone had talked about that during the conference; I'd like to know more about that. Now that they're looking at different strains of HMLV, maybe that explains some of the negative studies? .

What I heard was a North/South difference in Europe rather than an East/West one, as with the old Iron Curtain.
 
Messages
5,238
Location
Sofa, UK
Indeed, Mark. Call me crazy, but I don't view her pointing to the CDCs definition in this context as political. I see it as a reference to BAD science and the importance of eliminating BAD science from the mix so that we can move ahead with valid study.
Yes - it's kind of freaky that the very definition of CFS is "off-topic" and "political" just because highlighting that point implies criticism of the CDC.

But it's clearly because drawing attention to this issue opens the whole can of worms of how, who, when and why CFS was defined in this way despite everybody from the patient side screaming "foul!" at deaf ears for decades.
 
Messages
5,238
Location
Sofa, UK
I found the words underneath a bit confusing. It was when I read "appropriate trolls" written instead of "appropriate controls" that I stopped looking at them ...

:tear: Thanks for reminding me of that one mermaid, that was the joke of the day for me! :tear: