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From the 1st annual XMRV conference

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
XMRV = (retro)Virus, MLV's = Sequences

Reposted from XMRV Transcript thread (under "media .." etc) :

Ok, so right away there, almost at the top of the transcript, Dr Coffin is clarifying the difference in terminology between XMRV (found by the WPI) and the MLV's (also found by WPI but also Lo/Alter FDA/NIH).

ie. Whereas XMRV is considered a complete virus, the word he actually uses to describe the MLV findings is 'sequences' . In fact he clarifies by calling them rather colloquially : " .. a bunch of different sequences".

(ie not whole viruses, or strains, or variants, or whatever other word it was we came up with - brain fog is soooo annoying when trying to get head around the science).

I think 'variant' implies a whole virus, which is not what Dr C is saying here. He is clarifying that we only have evidence of 'bits and pieces' of the MLV's (if I've interpreted correctly), ie only 'sequences'.

Re. Tania's post: Yes love it! The science v policy banter at the top here is light and funny! (But think it got a bit heated further on..)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
from the XMRV action transcript of Conference

Dr. Coffin: If you look around this room and consider the number of people that we had to turn away because we didn’t have room for this meeting.

:( :Retro mad: .. that truely sucks!!! Hearing they had to turn away interested doctors and scientists.

Id love to see them holding another XMRV conference in 6 months to bring together new stuff and allow those who were turned away from this one to come.
 

Sunshine

Senior Member
Messages
208
Location
UK
Did anyone whom watch the Q&A noticed that they said XMRV has been in humans for tens of thousand of years!! That's a bit more than 50 years they first assumed.

Hi. Here's the actual quote.

Dr. Roger Dodd – American Red Cross

We’ve heard this virus may have entered human populations tens or thousands of years ago

Source: http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796


Similarly, Dr John Coffin has said previously on Internet radio XMRV may have been in the population for only 40 years.
It's all conjecture at this point in time.
 

anciendaze

Senior Member
Messages
1,841
I've just skimmed this topic to read what has happened since the workshop ended. Here are some thoughts on recurring points that may have escaped people.

One reason cohort definition was not an issue was that the apparently repeatable tests are more reliable than diagnosis. If you could get 80% reliability for diagnosis of MS, it would be a major step forward, and CFS/ME diagnosis is far more variable. At this point we don't know if the difference between 80% and 100% is due to tests for the virus or diagnostic confusion. Even the very best diagnosticians experienced with this illness admit they can sometimes get it wrong. Whatever those tests define it looks like a valid medical entity. Solve the testing problems and diagnosis will follow.

When Coffin said individual trials of off-label retrovirals "have less than zero value", he was thinking like a researcher who is facing the very real problem of running out of cases (uncontaminated by mistaken attempts at treatment) available for future studies. There have been some real doozies of examples in the past concerning other diseases. Researchers hate to investigate iatrogenic illness; extracting important information is like pulling teeth, and nobody comes out covered with glory.

Added: In reading over the transcript, I ran across an objection to the statement that retroviruses generally don't just sit there without causing illness. (Omitting endogenous virus.) The speaker was not identified, but their specialty was gibbon ape leukemia virus, which they said produces no neoplasms. They may be right, but I want to place bounds on possible rate of incidence. Even if, as stated, every gibbon in American zoos is infected, and no neoplasms have been seen, I wonder at the total number monitored as carefully as humans. What I found in references is that there are 15 species grouped in 4 genera. This makes me think there could be an incidence of 1:10,000 in any particular species which would not be detected. Anyone have better data?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
im having another go at getting throu reading that transcript.. its soo long, i couldnt get throu reading it all at once.
Another point i thought which is important for some to think about, (any considering the AIDS drugs)

Dr X: One thing that you didn’t mention but that I think is important to mention here is that progress with treating HIV came also thru mistakes we have made in the time where we only had single drugs. We lost people who were on monotherapy who developed drug-resistant virus and later could not be salvaged by the combination therapy because they had multiple drug-resistant virus. So I think there’s a potential side-effect of going into individual patient treatment with single drugs and that we can learn that in the future if the drugs are going to be successful, we may have weighted options. So you need to understand of what the drugs are doing in parallel if you’re going to get xxx for clinical trials. .

After reading that... even if i had access to the AIDS drugs, I'd wait. Ive heard of some taking just one or two of them... not a nice thought to think some (unfortunately those of us who are most desperate) may be setting themselves up to end up with drug resistant virus.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
We lost people who were on monotherapy who developed drug-resistant virus and later could not be salvaged by the combination therapy because they had multiple drug-resistant virus
.

That was the point I was trying to make earlier. I think it's a huge thing to consider for individuals.

We're so close now, just hang on a bit longer.
 
Messages
13,774
I also think it was a good reminder as to how uncertain things still are.

A lot of us had started to assume that the Alter paper meant that something had to be going on here. The scientists at this conference knew about this and another couple of positive papers and still seemed pretty unsure about it all - with concerns about contamination still being hinted at.

I really don't see how contamination could keep turning up such divergent positive results between controls and CFS patients - but those working within virology have apparently dealt with a number of false alarms over the years. Maybe that's taught them that we should be sceptical about new claims of viral association... maybe it's lead them to be unreasonably sceptical of these claims.

We've all being pretty badly burnt by the way CFS has been treated over the years, but I still tend to have more trust in the judgements of the experts than my own, especially when we're all so emotionally involved in this case.

It sounds hopeful that the blood group will have some answers for us soon. Is one possibility is that the positive studies took and stored samples from patients in a way that increased the chance of contamination prior to blinding? Given that Vernon (I think?) has been mentioning storage and tubes as a possible reason why the negative studies are not finding XMRV, it's easy for us to asume that the problems hineted at by the blood group are with the negative studies rather than the positive, but it could be the other way arround.

I'm sure I had something else to say... can't remember.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
One reason cohort definition was not an issue was that the apparently repeatable tests are more reliable than diagnosis. If you could get 80% reliability for diagnosis of MS, it would be a major step forward, and CFS/ME diagnosis is far more variable. At this point we don't know if the difference between 80% and 100% is due to tests for the virus or diagnostic confusion. Even the very best diagnosticians experienced with this illness admit they can sometimes get it wrong. Whatever those tests define it looks like a valid medical entity. Solve the testing problems and diagnosis will follow.

Anciendaze, I totally agree with your thinking here....
I believe that 'cohorts' are going to become less and less of an issue now that it is accepted that HMRV is real, and that it causes a disease.
The diagnostic criteria used for HMRV testing in ME/CFS patients will become less and less important as the testing for HMRV's gets better...
Simply put, if you test positive for HMRV and you feel ill, then you've got HMRV-related disease.
I guess that diagnostic criteria will still be important for those who don't immediately test positive for HMRV's but definitely have ME, and there will be more research and investigation needed for this cohort of ME patients.
 

Cort

Phoenix Rising Founder
One nagging concern that I have is that it is very clear that the current center of attention is XMRV and not CFS. This would be like saying that 25 years ago the center of attention was HIV and not AIDS. If HIV turned out to be just another co-infection of AIDs 25 years ago and not its cause would they have abandoned research on AIDs simply because it wasn't caused by the newest retro-virus. Of course not. AIDs was the disease and a very serious one, not just the cause. It was research into AIDs that was being funded not research into HIV per se. Identifying HIV and demonstrating that it caused AIDs was an effort to understand, prevent, and treat AIDs.

As I mentioned in another post, it is CFS that we must be pushing the NIH to fund research for, regardless of its cause. There is plenty of evidence (as I mentioned in the other post, link to Dr Komaroff's latest video) that this is a serious, physical, disabling, permanent illness without a known cause, with an unknown means of transmission, and with at least one million US citizens suffering from it. Whatever worries the world blood supply has about XMRV continues if XMRV is not the cause of CFS, since some other unknown pathogen is likely still lurking in the supply. But the problem is not just with the blood supply, the problem that this disease continues to destroy the lives of new people every day, regardless of blood transfusions.

I got this disease 21 years ago and have suffered severely ever since. When none of my family got sick I was relieved, at least it was only me. Then 7 years later my daughter got sick with it, suddenly, just like me. She went from being the top student in her high school to being bedridden, and chronically ill. She barely made it through school. Struggling to do her school work from her bed.

Now I help my wife care for some of our grand children. What about them? What next?

XMRV has gotten CFS in the lime light but it is up to us to make sure that it is CFS that is funded and researched. If the XMRV causes CFS, then great, we are all the closer to preventing CFS and treating and curing CFS. If XMRV is not the cause of CFS then let's move on quickly and find the cause, whatever it is.

This is the difference between WPI and most of the other researchers investigating XMRV. The WPI is committed to finding the cause, prevention and cure for CFS. Most of the other researchers, including the NIH are focused on XMRV.

The key to making this happen lies with ourselves, those who suffer from CFS. We know better that anyone the physical reality of this disease and its terrible devastation. Like Annette Whittmore who knows this illness through her daughter's suffering, it is up to us to let others know, before they too perhaps become its victims.

This is the best opportunity to get attention and research funds focused on research for CFS that has ever happened. We should be taking every opportunity to make it clear, to the NIH, and whoever else we can, that we want CFS to be researched, now, whatever its cause.

I think this post made key points. We don't know XMRV how will turn out - we really don't- but we do know we are in the news now and the NIH is talking about us and with us finally. What a shame if we missed this opportunity. What a shame it would be if, god forbid, XMRV doesn't turn out and we missed the opportunity to lock in more funding for ME/CFS because we were so sure XMRV would turn out.

The thing to do, I think, is to highlight how little research has occurred, how little funding there is for at least a million sick people in the US - and to get them to commit to more funding NOW for CFS research in general.

What are the best ways to do this?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It sounds hopeful that the blood group will have some answers for us soon. Is one possibility is that the positive studies took and stored samples from patients in a way that increased the chance of contamination prior to blinding? Given that Vernon (I think?) has been mentioning storage and tubes as a possible reason why the negative studies are not finding XMRV, it's easy for us to asume that the problems hineted at by the blood group are with the negative studies rather than the positive, but it could be the other way arround.

Hi Esther,
In his study, Alter took many precautions to avoid contamination, and to avoid the possibility of accusations of contamination.
Judy Mikovits has isolated the virus and photographed it, and sequenced its genome.
Alter even retested some of the patients in his study by taking fresh samples (from the patients whose blood had been stored for years). In these fresh samples he detected P-MLV-RV's again, but with mutations, as would be expected from a retrovirus after many years... Contaminants don't show mutations.
Alter detected a number different gene segments that suggest multiple variants of P-MLV-RV's. Contaminants don't tend to give results like these.
Alter also tested his gene segments against the entire genome of mice to check for mouse contamination, and he proved that there was no mouse contamination.

There's many reasons, and these aren't all of them, why we can be content that contamination is not an issue.
Maybe we should have a wiki that lists all the reasons why we know that contamination is not an issue?
 
Messages
13,774
How to do this???????

Fear-monger.

"Has ignoring this group of patients allowed an incurable retrovirus to contaminate the blood supply and infect up to 7% of the American popualtion?"

There was a quote from some virologist describing CFS as a classic example of a disease likely to be caused by an unknown pathogen. Is it really a good idea to put so little research into developing a basic understanding of the illness? When it could pose a risk to normal healthy people rather than just those pathetic ill types?

If you want people to pay attention is normally best to emphasise the danger posed to themselves rather than expect a compassionate response to the suffering of others.
 

Cort

Phoenix Rising Founder
What i find irronic is the fact that all the psychological studies base whether their treatments work or not on changed functioning alone... but it seems a study based on us taking AIDS drugs, wouldnt be classified as a good study using that same thing to guage success or not.

Does this mean that all the psychological studies werent good including all the ones done by the government departments in the past??? :p

Its interesting how what makes a good study, the criteria is varying in the different fields, seems a kind of bias thing there. What is good enough to proclaim success with psychological studies is said not to be good enough to use in retrovirus med studies. ?

I think this really does demonstrate the different realms and different rigors present in medical research. What psychs accept virologists - who are focused on measuring things in a test tube - do not. I think they take this relapsing/recovering stuff too far, really...sure there are swings from day to day but they even out over time..its not like functionality goes through the roof for anyone from day to day (without a corresponding crash the next day....)
 
Messages
13,774
There's many reasons, and these aren't all of them, why we can be content that contamination is not an issue.
Maybe we should have a wiki that lists all the reasons why we know that contamination is not an issue?

From what I understand, I'm no longer concerned about contamination. But it seems that lots of scientists still are, and I'm just hesitant to trust my own reasoning over theirs (especially considering my near total ignorance of virology 12 months ago).
 

Cort

Phoenix Rising Founder
Fear-monger.

"Has ignoring this group of patients allowed an incurable retrovirus to contaminate the blood supply and infect up to 7% of the American popualtion?"

There was a quote from some virologist describing CFS as a classic example of a disease likely to be caused by an unknown pathogen. Is it really a good idea to put so little research into developing a basic understanding of the illness? When it could pose a risk to normal healthy people rather than just those pathetic ill types?

If you want people to pay attention is normally best to emphasise the danger posed to themselves rather than expect a compassionate response to the suffering of others.


At first glance that's a great idea - that sent shivers up my spine - I'm going to send it to Marly.
 
Messages
13,774
I think this really does demonstrate the different realms and different rigors present in medical research. What psychs accept virologists - who are focused on measuring things in a test tube - do not.

You always see Wessely talking about how unfair it is the psychology is seen as a inferior to other sciences. Here was his great chance: He could have responded to the XMRV Science paper by presenting his evidence that CFS is not maintained by any ongoing viral infection, but by primarily psycho-social factors. 20 years of research could have been distilled into one over-powering argument!

He did not.

Instead he turned to a virologist.

Despite his pretensions, deep-down, he knows his place.
 

pine108kell

Senior Member
Messages
146
One nagging concern that I have is that it is very clear that the current center of attention is XMRV and not CFS. This would be like saying that 25 years ago the center of attention was HIV and not AIDS. If HIV turned out to be just another co-infection of AIDs 25 years ago and not its cause would they have abandoned research on AIDs simply because it wasn't caused by the newest retro-virus. Of course not. AIDs was the disease and a very serious one, not just the cause. It was research into AIDs that was being funded not research into HIV per se. Identifying HIV and demonstrating that it caused AIDs was an effort to understand, prevent, and treat AIDs.

As I mentioned in another post, it is CFS that we must be pushing the NIH to fund research for, regardless of its cause. There is plenty of evidence (as I mentioned in the other post, link to Dr Komaroff's latest video) that this is a serious, physical, disabling, permanent illness without a known cause, with an unknown means of transmission, and with at least one million US citizens suffering from it. Whatever worries the world blood supply has about XMRV continues if XMRV is not the cause of CFS, since some other unknown pathogen is likely still lurking in the supply. But the problem is not just with the blood supply, the problem that this disease continues to destroy the lives of new people every day, regardless of blood transfusions.

I got this disease 21 years ago and have suffered severely ever since. When none of my family got sick I was relieved, at least it was only me. Then 7 years later my daughter got sick with it, suddenly, just like me. She went from being the top student in her high school to being bedridden, and chronically ill. She barely made it through school. Struggling to do her school work from her bed.

Now I help my wife care for some of our grand children. What about them? What next?

XMRV has gotten CFS in the lime light but it is up to us to make sure that it is CFS that is funded and researched. If the XMRV causes CFS, then great, we are all the closer to preventing CFS and treating and curing CFS. If XMRV is not the cause of CFS then let's move on quickly and find the cause, whatever it is.

This is the difference between WPI and most of the other researchers investigating XMRV. The WPI is committed to finding the cause, prevention and cure for CFS. Most of the other researchers, including the NIH are focused on XMRV.

The key to making this happen lies with ourselves, those who suffer from CFS. We know better that anyone the physical reality of this disease and its terrible devastation. Like Annette Whittmore who knows this illness through her daughter's suffering, it is up to us to let others know, before they too perhaps become its victims.

This is the best opportunity to get attention and research funds focused on research for CFS that has ever happened. We should be taking every opportunity to make it clear, to the NIH, and whoever else we can, that we want CFS to be researched, now, whatever its cause.

I know others have complimented this post. At least to my way of thinking, it is maybe the best post I have read since the XMRV issue came to the forefront. I would comment further, but this says everything I feel.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
From what I understand, I'm no longer concerned about contamination. But it seems that lots of scientists still are, and I'm just hesitant to trust my own reasoning over theirs (especially considering my near total ignorance of virology 12 months ago).

Yes, I see where you are coming from Esther, but what I have learnt since becoming ill (apart from a near-degree level knowledge of virology - well OK, maybe not quite that level of expertise yet - but it feels like it to me!) is that scientists are not gods, they are fallible, and that expert patients tend to know a lot more about their subject than many of these so-called scientific 'experts'. I mean, look at Wessely and Greeves... they are looked to by the UK and USA establishments to give advice about ME/CFS... but they say it's a psychological condition based on childhood trauma. Now we've found a virus. So maybe you can trust yourself, and your own knowledge, Esther, more than you previously thought you could?!
After all, where do scientists get their knowledge from? Reading the available information... and that's exactly what we do.
Esther, I'll trust you any-day, over Wessely and many other scientists (i.e. McClure), to give me objective, impartial info about ME/CFS. :Retro smile: