An HIV clinician who attended last week’s CROI (Conference on Retroviruses and Opportunistic Infections) in Boston told CFS Central that it was pretty much a bust all around, but that would be par for the course with CROI, which is “notoriously good at keeping out those they don’t want in.” As far as the XMRV presentations, the physician said it was glaringly obvious to him and to others that the opposing side—those who have found the retrovirus XMRV in ME/CFS patients and in prostate cancer patients—wasn’t being heard.
His impressions of the discussions in the hallways were that the HIV researchers thought XMRV was a joke, but that many clinicians were taking XMRV seriously. It reminded him of the early days of HIV when the doctors who were treating these sick patients knew something was seriously wrong with them, while the official word from government was much ado about nothing. “The feeling that I got,” he said, “was the same underlying sense of information being tightly controlled.”
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Powerful Mindy. Thank you. It helps me to know that at least some of the conference-goers are aware of the control of info and strong bias in whose abstracts were accepted.
ReplyDeleteThat's what it feels like from where I sit, and it's great — I mean horrible — to have it confirmed. I'm grateful for the clinicians, and researchers, who do take us seriously. Thanks, Mindy.
ReplyDeleteDon't researchers want to learn? Why would HIV researchers consider XMRV a joke? Because it competes for grants? Thanks for the great insider insights.
ReplyDeletecreek
ReplyDeletei think u hit the nail squarly and forcefully on the head!!!
mindy thanks for the report. it actually makes me feel better that the backstabbing, underhanded evil nature of this meeting was noticed by others besides us. only those who did not want see, could not see how completely one sided and unprofessional the xmrv session truly was.....just one big blech in so many ways.
What a shame the HIV researchers seem to have learned absolutely nothing from the past. They of all people should know better than to dismiss right away!
ReplyDeletewhen they use the word contminant what they have done is redefined the word contaminant to suit themselves.What they actually mean is a recombinant.They wont use that word because when mouse ervs recombine to produce vilable reproducible viruses then they are invariably highly pathogenic and usually also have the ability to infect other species.They use their own definition of contaminant so that they can always say that they meant recombinant all along
ReplyDeleteThis is the behaviour of shyster lawyers and not scientists.So when papers talk about a human gamma retrovirus being a "contaminant" be aware that they are not using the word in its normal scientific context.The lay press of course will think that it is truly a contaminant. this imo is quite deliberate.So i urge everyone not to take these terms at face value and when they are used press for a definition. Mindy perhaps you can alert the lay press about this subtifuge
Would someone be willing to educate me?
ReplyDeleteA) Was the CROI meeting a governmental meeting?
B) If so, what agency appointed this?
C) If so, who is the oversight committee?
Best,
Julia
Interesting and disturbing. Thank you for keeping us up to date.
ReplyDeleteThanks Mindy for giving us an accurate blow by blow of the CROI.
ReplyDeleteSo very painful but we need to know the logic?? behind their incredible stupidity.
Sorry, too for the anonymous posting. The last time I used my real name, I was inundated with hate mail.
What is up with the the incredible dissension in the ME community? Last time I checked, we were all on the same side.
It's so great you put things in perspective for us, Mindy. This really helped me understand what's going on - "It reminded him of the early days of HIV when the doctors who were treating these sick patients knew something was seriously wrong with them, while the official word from government was much ado about nothing."
ReplyDeleteThank you.
I think that one has to take into consideration that many of the current day HIV researchers weren't in the field when HIV was controversial. They have never seen such a thing play out. This may explain the attitudes of some of them towards a new, but similar, controversial finding. They lack the perspective of the older guard of researchers like Alter, Ruscetti, Mikovitz, even Gallo, etc..
ReplyDeleteI think that ME sufferers are united in wanting a cure
ReplyDeletethe problem is that the so called advocacy orgaisations are united in not campaining to fund the research that could well provide such a cure
so unfortunately people with ME are not on the same side as people who pretend to advocate for them
I don't believe CROI is government funded but I'll be investigating now!
ReplyDeleteIf they are funded, I'll be demanding it be defunded until it represents the true depth and breadth of the retrovirology community.
~ JT
Many of these researchers get NIH funds to conduct their studies.
ReplyDeletePleez keep at it for those who cant
ReplyDeleteOh to have the luxury of just blowing this disease and/or it's cause off! Egos, politics, money, and supposition abound while millions languish in their beds. Others dragging their very sick butts to work, doing further damage to their body systems because they have no choice.
ReplyDeleteDisgusting business!
I am thankful for all those who are going against the tide and taking XMRV and the disease ME seriously.
How is it that:
ReplyDelete1) blood sample contamination could result in antibody responses? Can blood, outside the body, mount an antibody response?
2) CFS samples have a much higher “contamination” rate than controls?
Thanks,
Bravada Jones
Creek: Yes.
ReplyDelete$$$$$$
HIV researchers are not our friends.