Retrovirus Conference in Prague, April 29-May 4, 2010

[Adam]

I think we'll know sooner than later. The good studies apparently take time. Its unfortunate that the quick and dirty studies have had such an impact...but in the not too distant future, hopefully, this little interlude between the original study and validation of it will be quickly forgotten. If XMRV turns out - and these researchers very clearly expect that it will - its hard to imagine that things won't change big time in disease. XMRV will be, as has been said so often, a game changer - like a comet streaking across the sky - something as dramatic as that happens to few diseases. Well worth the wait.

What a great boost for the WPI and XMRV. A very strong endorsement from these two influential researchers. They obviously felt that this was going off the rails a bit and they had to say something. You can feel their frustration. I imagine that venturing into the world of CFS and research has been an eye-opener for both of them. I'll be if you could get them to sit down and talk off the record you'd get an earful! Dr. Mikovits obviously feels the same way .

Nice post Cort. Just imagine a time, if you will, when someone says Kupperveld, and someone replies Who? And then somebody else says do you remeber that virologist, what was she called McSure or something, and somebody answers, are you sure she was called McSure, and they say nah, not sure, what about her...oh nothing.

 

[Robin]

What a great boost for the WPI and XMRV. A very strong endorsement from these two influential researchers. They obviously felt that this was going off the rails a bit and they had to say something. You can feel their frustration. I imagine that venturing into the world of CFS and research has been an eye-opener for both of them.

:tear:

Well, Ruscetti's early career involved retroviruses, he was one of the researchers who isolated HTLV and HIV with Gallo. There also were huge international researcher fights (also involving Science!) over HIV. So he's no stranger to the politics and hubris that can be endemic in the research field.

I don't think there is a conspiracy against ME/CFS (as has been accused!), more likely a heavily entrenched bias. It's easy to marginalize researchers and PCPs like poor Dr. Bell, but criticizing the quality of work of someone like Ruscetti is simply not going to fly.

 

[awol]

I think the politics of CFS are really incredible, and also really really sad. Why do people go to such length to call others liars, rather than simply trying to find the truth? I also can't help but notice that every disease that has ever been classified as hysteria has higher prevalence among women. How much better off would ALL CFS sufferers be if we didn't seem to have this irrational need to dismiss women's health concerns and difficulties (and women's research)?

Good for them for voicing support right when it is needed.

 

[Navid]

:tear:

Well, Ruscetti's early career involved retroviruses, he was one of the researchers who isolated HTLV and HIV with Gallo. There also were huge international researcher fights (also involving Science!) over HIV. So he's no stranger to the politics and hubris that can be endemic in the research field.

I don't think there is a conspiracy against ME/CFS (as has been accused!), more likely a heavily entrenched bias. It's easy to marginalize researchers and PCPs like poor Dr. Bell, but criticizing the quality of work of someone like Ruscetti is simply not going to fly.

just a reminder of what they went thru during the early days of hiv/aids: big ego's, lies, deceit and death.

What the Chicago Tribune report did not emphasize is that in the midst of the AIDS epidemic, Gallo's self-interested bid for glory has had a terrible human cost: by refusing to acknowledge the significance of the French scientists' earlier discoveries, he delayed the introduction of a widely available blood test for the AIDS virus by about a year. During that year thousands of hospital patients and hemophiliacs received tainted blood from blood banks and became infected, and many of the already infected unwittingly spread the virus. And Gallo slowed down AIDS research in other ways: he made it difficult for the Centers for Disease Control (CDC) and fellow researchers to obtain necessary supplies and samples of virus, and most damaging of all, as the Tribune showed, he published a vast amount of incorrect data and misleading conclusions. Interviews with 40 of Gallo's colleagues and peers indicate that his egomaniacal performance did not surprise those who know him well. As a scientist who once worked in his lab puts it, Gallo was known for "this sort of unscrupulous behavior ten years before HIV [the AIDS virus] ever came along. When the stakes got higher, he was capable of doing anything. The stakes became too high."


here's a link to a long but interesting article abt gallo...and how he treated ruscetti and other researchers....this xmrv/cfid's saga is not a new story, in fact it's been around as long as man and his ego!!!!!!
http://www.virusmyth.com/aids/hiv/srlabrat.htm

p.s. i am not supporting this website...just thought this article in particular was interesting in understanding all the politics and maneuvering that goes on in the world of science. i do believe hiv is causal to aids, fwiw.

 

[Jenny]

just a reminder of what they went thru during the early days of hiv/aids: big ego's, lies, deceit and death.

In 1982 when I first came down with ME I was pregnant and went for my regular anti-natal check up. I was asked how I was and I said I'd been in bed for 4 months with a strange flu-like illness and that I caught every bug going around. Half - joking, I added - perhaps its a virus a bit like the newly discovered AIDS virus which lowers your resistance to infection. The doc was completely dismissive - AIDS is a load of nonsense he said.

Jenny

 

[serenity]

wow Jenny, wow. yes, just like us - those people with AIDS are just full of it.
you would think the medical community would learn?

 

[natasa778]

you would think the medical community would learn?

never underestimate the power of amnesia. or medical egos.

 

[usedtobeperkytina]

natasa, here, here.

Thanks for info on history of AIDS. I have actually been wanting to know a little more to look for correlations.

tina

 

[omerbasket]

just a reminder of what they went thru during the early days of hiv/aids: big ego's, lies, deceit and death.

What the Chicago Tribune report did not emphasize is that in the midst of the AIDS epidemic, Gallo's self-interested bid for glory has had a terrible human cost: by refusing to acknowledge the significance of the French scientists' earlier discoveries, he delayed the introduction of a widely available blood test for the AIDS virus by about a year. During that year thousands of hospital patients and hemophiliacs received tainted blood from blood banks and became infected, and many of the already infected unwittingly spread the virus. And Gallo slowed down AIDS research in other ways: he made it difficult for the Centers for Disease Control (CDC) and fellow researchers to obtain necessary supplies and samples of virus, and most damaging of all, as the Tribune showed, he published a vast amount of incorrect data and misleading conclusions. Interviews with 40 of Gallo's colleagues and peers indicate that his egomaniacal performance did not surprise those who know him well. As a scientist who once worked in his lab puts it, Gallo was known for "this sort of unscrupulous behavior ten years before HIV [the AIDS virus] ever came along. When the stakes got higher, he was capable of doing anything. The stakes became too high."


here's a link to a long but interesting article abt gallo...and how he treated ruscetti and other researchers....this xmrv/cfid's saga is not a new story, in fact it's been around as long as man and his ego!!!!!!
http://www.virusmyth.com/aids/hiv/srlabrat.htm

p.s. i am not supporting this website...just thought this article in particular was interesting in understanding all the politics and maneuvering that goes on in the world of science. i do believe hiv is causal to aids, fwiw.

Was Galo ever punished by court for those actions of his?

There are great doctors, but there are also doctors who think they are god. "AIDS is a load of nonsense"? That doctor probably thought himself to be god if he knew that. And as we all know, AIDS is far from being nonsense, and that doctor is far far from being god.

 

[awol]

WHO gets the illness was a big factor in the early politics of AIDS too (as for CFS). When it was the gay disease, large numbers of smug homophobics were busy thinking "serves them right". In this case, what do you want to bet there would be FAR less interest in the WPI research if the virus was not already linked to prostate cancer (which kills "normal" men and is therefore serious...).

This is why I am slightly irked by the famous people with CFS list - why do famous people need to have it for it to be valid?

 

[anciendaze]

history of neurasthenia, polio, etc.

If you want to get a long perspective on medical politics and diseases of unknown origin, you might be interested in the history of poliomyelitis and multiple sclerosis versus "neurasthenia". Many people citing Koch's postulates for infectious disease don't know that he modified his views because of work on poliomyelitis.

At the time neurasthenia acquired its psychological flavor, polio was called infantile paralysis, and post-polio syndrome was unknown. MS was only described the year before, and the definitive signs could only be determined at autopsy. With known later prevalence of both illnesses in the Boston area, it now seems certain some of the patients described in the classic paper on neurasthenia must have had either post-polio syndrome or MS.

As for misdiagnosis, consider a particularly high-profile case of polio, FDR. A 2003 study concluded he likely suffered from GuillainBarr syndrome, not true poliomyelitis.

My personal connection with this was my mother. At the time she was born, polio had no known cause, no prevention and no effective treatment. Her acute illness lasted several weeks and involved temporary paralysis of her legs. She was not taken to a doctor, because her parents were able to provide supportive care to keep her alive, and doctors had nothing more to offer.

In the 1950s her doctors generally assumed her childhood illness had been polio, and diagnosed her continuing problems as post-polio syndrome. By the time she died, most nursing staff, and many doctors, had never seen polio, (indeed, many of their parents had not seen it,) and were vague about post-polio syndrome.

Medicine progresses, but people remain pretty much the same.

 

[usedtobeperkytina]

I have now read this article, I mean, mini-book.

I have been around these personalities before. I have even used the "scorch earth" phrase in reference to someone who leaves anyone he has dealings with mad at him.

Where does this come from? Maybe they have some childhood trauma.

Seriously though. Could it be these folks have not developed social skills?

tina

 

[Navid]

WHO gets the illness was a big factor in the early politics of AIDS too (as for CFS). When it was the gay disease, large numbers of smug homophobics were busy thinking "serves them right". In this case, what do you want to bet there would be FAR less interest in the WPI research if the virus was not already linked to prostate cancer (which kills "normal" men and is therefore serious...).

This is why I am slightly irked by the famous people with CFS list - why do famous people need to have it for it to be valid?

because we live in a shallow, star-struck, celebrity driven society.....it's not right, but it is what it is...

until cfid's has it's magic johnson, ryan white, rock hudson (w/liz taylor and doris day standing by his side)...coupled w/ a smart, raucous, eloquent, shit-disturber like larry kramer....we won't ever get the attention, money, research and treatment.

when the ppl afflicated by hiv/aids and their friends got organized and loud then stuff started to happen.

also when the general public got the poop scared out of them realizing anyone (ryan white) could catch the disease, not just gays...people became mobilized....

maybe if it turns out that xmrv is highly infectious, we'll start to see some movement...it's such a dbl edged sword.

you wish people would just do the right thing because it's the right thing.

but in reality most people (particularly those in power) only do the right thing when they are forced to, are petrified what the results of inaction may be, or selfishly see some glory for themselves in the cause.

there are very few jesus', ghandi's, mlk jr's in the world....
there are plenty of gallo's, wessley's, reeve's....
the local doc who said aids is nonsense, your pcp, rheumy, id or gp who told you to exercise and take a vacation when you could no longer function......there are plenty of them!!!!!

right now for us, there is one loud, smart, not always eloquent Judy M.....stirring up the shit. thank goodness coffin and ruscetti are standing by her side...but she needs more and more strong, outspoken, respected support.

 

[anciendaze]

Frightening thought

...This is why I am slightly irked by the famous people with CFS list - why do famous people need to have it for it to be valid?

Suppose Paris Hilton developed CFS/ME with characteristic flair and hystrionics?
(No, no, that's too awful to contemplate.)

 

[Robin]

here's a link to a long but interesting article abt gallo...and how he treated ruscetti and other researchers....this xmrv/cfid's saga is not a new story, in fact it's been around as long as man and his ego!!!!!!
http://www.virusmyth.com/aids/hiv/srlabrat.htm.

Yikes! If all that stuff is true, poor Ruscetti! I want to send him flowers too!

 

[NickUmich]

this isnt bad news but when are we to expect some definative news one way or the other? I thought we were ment to hear something a week or so back? but that has been and gone. for them to say it is only a matter of time is fine if your whole life doesnt depend on getting an answer. ive been waiting to live since I was 17 and am now nearly 31. time is something I just dont have to waste

My sentiments exactly. I've been sick since I was 20...I'm now 28. I want the last 8 years of my life back really badly.

 

[kwietsol]

My sentiments exactly. I've been sick since I was 20...I'm now 28. I want the last 8 years of my life back really badly.

Welcome to the forum, NickUmich. We wish we could give them back to you. But maybe, just maybe, help is on the way.

 

[serenity]

i like that last statement, thanks

 

[oerganix]

My sentiments exactly. I've been sick since I was 20...I'm now 28. I want the last 8 years of my life back really badly.

I've been sick for 28 years, and I'd just like to have a few good years before I die of old age. I know I can't have those 28 years back, but it would sure be nice to dance again. At 62, even if I were perfectly healthy tomorrow, what kind of job could I get in these times? What should have been the best years of my life were stolen by these criminals and they wonder why we are pissed!

I just hope this time around, the good guys win. Thank the goddess we have women scientists with ovaries going after it now as well as some good men with cojones on our side.

 

[usedtobeperkytina]

Dr. Bateman said that if XMRV is validated, you will see many prominent people come out of the closet.

Think of this, stress is a trigger, right? People who are successful tend to work long hours under many demands. So there has to be many public figures, CEOs, stars, etc. who have it.

Osler's Web reported a LA reporter saying it seemed everyone out there was sick with the unknown illness.

Now, why don't these folks speak up? Because CFS is stigmatized. Because people don't die from it and recovery is often possible. Coming out would only cause them to not get any future work, which is a problem if they recover enough to work.

(Cher is the exception. The girl has enough confidence to tell all others what they can do with it.)

Tina