WPI Finds High Levels of Retrovirus in ME/CFS Patients
- Thread starter Cort
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....
Hey Rrrrr,
I'm pretty sure you're in it.
We're all pretty fried, it's so easy to get disoriented.
ETA It's now in the XM... ah? OMG...? XM...? I can't remember the virus!
It's got its very own section now under the general heading of: ME/CFS News but right on the front page.
Hey Rrrrr,
I'm pretty sure you're in it.
We're all pretty fried, it's so easy to get disoriented.
ETA It's now in the XM... ah? OMG...? XM...? I can't remember the virus!
It's got its very own section now under the general heading of: ME/CFS News but right on the front page.
InvertedTree
Senior Member
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Hey Rrrrr,
I'm pretty sure you're in it.
We're all pretty fried, it's so easy to get disoriented.
ETA It's now in the XM... ah? OMG...? XM...? I can't remember the virus!
It's got its very own section now under the general heading of: ME/CFS News but right on the front page.
lol! We are all pretty fried aren't we?
I'm chuckling because I keep forgetting the name too. The sequence you described sounds so familiar...it's XM....um....XM.....XMRV!
caledonia
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I saw an interesting post by someone which answers this question, unfortunately I can't remember where it was (maybe PH?) and can't find it again.
Anyway, the gist of it was, this person had heard Cheney, I think, give a talk, and there was a question and answer session, and one of the answers was he figured about 15% would fall into a retroviral category (although he didn't say it in exactly those words).
Sorry to be so vague...
If anyone remembers reading this or can find it, please post a link.
K
_Kim_
Guest
Very funny Koan, especially because this happened to me when I was trying to tell my mom about it. After a few tries, I gave up on the letters and botched it even worse when I tried to say the full name. I finally gave up and said: it's a retro-virus.
Kati
Patient in training
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Blood transfusion services... do they know? Have they known?
So here we are, we have a retrovirus. It is known to be linked with neuro-immune diseases and cancer, amongst other things. I was wondering if the blood banks know about it by now- ok let the week end go and see if they are reacting by Monday....
I am wondering because here in Canada we have had a Hepatitis C scandal a few years ago in which they knew about the virus but failed to test the blood for it. The victims of hep c through a blood transfusions got millions in compensation.
I think that now that we know, the governments are better get into gear with this virus to prevent spread, for one, and lawsuits.
I think that this favors us as well, since the transfusions services will be forced to pass this informations to the doctors and hospitals. Nobody can hide the facts now.
I have just sent an e-mail to the blood tranfusion services in Canada, a national establishment, and asking whether they knew. Also a link to the said article. They can run, but they can't hide...
So here we are, we have a retrovirus. It is known to be linked with neuro-immune diseases and cancer, amongst other things. I was wondering if the blood banks know about it by now- ok let the week end go and see if they are reacting by Monday....
I am wondering because here in Canada we have had a Hepatitis C scandal a few years ago in which they knew about the virus but failed to test the blood for it. The victims of hep c through a blood transfusions got millions in compensation.
I think that now that we know, the governments are better get into gear with this virus to prevent spread, for one, and lawsuits.
I think that this favors us as well, since the transfusions services will be forced to pass this informations to the doctors and hospitals. Nobody can hide the facts now.
I have just sent an e-mail to the blood tranfusion services in Canada, a national establishment, and asking whether they knew. Also a link to the said article. They can run, but they can't hide...
Marylib
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Speaking of blood...
I suppose I am the only warped person on this forum. But if Reeves does his two-step, fast-talking, blow-hard number on this latest news, why don't we do this: Hire a big bus, put as many ambulatory CFS'ers as possible aboard, and drive to wherever they are holding one of those big blood bank drives. First we let the CDC and the media know publicly that we are going with the intention of giving blood, then see what he does....
(Of course, we would stop short of actually giving it, but he does not need to know that...)
Just a fantasy, but an enjoyable one.
I suppose I am the only warped person on this forum. But if Reeves does his two-step, fast-talking, blow-hard number on this latest news, why don't we do this: Hire a big bus, put as many ambulatory CFS'ers as possible aboard, and drive to wherever they are holding one of those big blood bank drives. First we let the CDC and the media know publicly that we are going with the intention of giving blood, then see what he does....
(Of course, we would stop short of actually giving it, but he does not need to know that...)
Just a fantasy, but an enjoyable one.
caledonia
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Marylib - I like how you think, you evil person you! - lol. It sounds like something the documentary film maker Michael Moore would do. We would have to video it and put it on You Tube too.
Marylib
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Blood and all...
Yes, I must have taken subconscious inspiration from Michael Moore -- definitely sounds like one of his techniques!
Yes, I must have taken subconscious inspiration from Michael Moore -- definitely sounds like one of his techniques!
Prof Simon Wessely's Wikipedia page now says this:
"In relation to the XMRV virus found in two thirds of CFS patients, Wessely has pointed out that this research fails to model the role childhood abuse and illness behaviour plays in the disease"
http://en.wikipedia.org/wiki/Simon_Wessely
(it also fails to model the role suppressed memories of alien abduction plays, the man's a total numpty)
"In relation to the XMRV virus found in two thirds of CFS patients, Wessely has pointed out that this research fails to model the role childhood abuse and illness behaviour plays in the disease"
http://en.wikipedia.org/wiki/Simon_Wessely
(it also fails to model the role suppressed memories of alien abduction plays, the man's a total numpty)
Finch
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What does this mean?
I really don't even understand what Wessely is trying to say here. It makes no sense. For the record, my childhood was awesome, and I was never abused by anyone, ever. Also, I believe the reason we have "illness behavior" would most likely be due to the fact that we are ill, and "illness behavior" is what allows one to survive illness! (I've no idea why he left out the alien abduction, Min! I guess he just didn't want to appear too wacko.)
It's fun to see the squirming of Drs. Wessely and Reeves trying to keep their own theories intact in light of this new information.
Also, as far as donating blood, I've always wished I could! Prior to ME/CFS, I simply didn't weigh enough. After ME/CFS, I did weigh enough, but something inside always told me that a) there just might be some unknown infectious agent in my blood that could be passed on to anyone who might receive it, and b) it might be deleterious to my own health. Even if I do not test positive for XMRV, I will still not know whether there is some other pathogen that hasn't yet been discovered that is the cause of my illness or could be passed on to others. I wouldn't want to be the cause of anyone else having to feel this way. It still makes me sad that I could never donate blood, as I would have been a very willing donor at every opportunity.
I'm grateful every day that I haven't passed anything on to my husband over the past 19 year of my illness. If I have this thing, he must be one of the resistant ones. If that turns out to be the case, maybe he could be a good study subject as well. Of course, that's speculating. We still have to find out whether I'm one of those who has it. In either case, his health has been my salvation.
I really don't even understand what Wessely is trying to say here. It makes no sense. For the record, my childhood was awesome, and I was never abused by anyone, ever. Also, I believe the reason we have "illness behavior" would most likely be due to the fact that we are ill, and "illness behavior" is what allows one to survive illness! (I've no idea why he left out the alien abduction, Min! I guess he just didn't want to appear too wacko.)
It's fun to see the squirming of Drs. Wessely and Reeves trying to keep their own theories intact in light of this new information.
Also, as far as donating blood, I've always wished I could! Prior to ME/CFS, I simply didn't weigh enough. After ME/CFS, I did weigh enough, but something inside always told me that a) there just might be some unknown infectious agent in my blood that could be passed on to anyone who might receive it, and b) it might be deleterious to my own health. Even if I do not test positive for XMRV, I will still not know whether there is some other pathogen that hasn't yet been discovered that is the cause of my illness or could be passed on to others. I wouldn't want to be the cause of anyone else having to feel this way. It still makes me sad that I could never donate blood, as I would have been a very willing donor at every opportunity.
I'm grateful every day that I haven't passed anything on to my husband over the past 19 year of my illness. If I have this thing, he must be one of the resistant ones. If that turns out to be the case, maybe he could be a good study subject as well. Of course, that's speculating. We still have to find out whether I'm one of those who has it. In either case, his health has been my salvation.
Interesting...
If they're talking 'antibodies', doesn't that suggest that at least in some cases, patients were able to knock the infection down, without antiviral meds?
Perhaps XMRV already did it's damage, but I think it's important to stress that not all of the cases were active infections.
???
If they're talking 'antibodies', doesn't that suggest that at least in some cases, patients were able to knock the infection down, without antiviral meds?
Perhaps XMRV already did it's damage, but I think it's important to stress that not all of the cases were active infections.
???
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That's hysterical! But actually, not a bad idea...
Martlet
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I think it's a brilliant idea. I haven't given blood since I became ill. My doctor suggested that I should not because he was so sure an infectious agent was behind it.
Marylib
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Idea about the "Blood Bank March...err, crawl.."
Glad people like my scheme to get attention of those who have historically chosen to ignore us.
Hopefully no one will have to resort to this kind of thing, but with the track record of certain institutions -- I won't name names but one of them may have the initials CDC -- you never know....
Glad people like my scheme to get attention of those who have historically chosen to ignore us.
Hopefully no one will have to resort to this kind of thing, but with the track record of certain institutions -- I won't name names but one of them may have the initials CDC -- you never know....
Marylib
I think it's a great idea. I don't think it's the least bit outrageous but I have a lonnnnnnng history of political activism.
Everyone should wear the same colour tshirt with their XMRV status. (We'll need to wait for tests to be available.) People confined to wheelchairs should be included. Maybe healthies could carry some people on stretchers who are too orthostatic intollerant to stand up.
It's an excellent idea. If the CDC fails to keep pace with the science, it may even be necessary.
If Wessely carries on, they will do something like it in the UK, I'm sure.
I would absolutely do it.
Peace out,
Koan
I think it's a great idea. I don't think it's the least bit outrageous but I have a lonnnnnnng history of political activism.
Everyone should wear the same colour tshirt with their XMRV status. (We'll need to wait for tests to be available.) People confined to wheelchairs should be included. Maybe healthies could carry some people on stretchers who are too orthostatic intollerant to stand up.
It's an excellent idea. If the CDC fails to keep pace with the science, it may even be necessary.
If Wessely carries on, they will do something like it in the UK, I'm sure.
I would absolutely do it.
Peace out,
Koan
mezombie
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Oh so true given the CDC's track record.
Anyhow, count me in. ACT-UP, the "radical" arm of the AIDS movement, did things like this. They had an impact!
blood bank crawl and CFSAC conference????
love the idea - would it tie in with participation at the CFSAC conference? I can't be there - wonder what those who can think of actually doing something like this????
love the idea - would it tie in with participation at the CFSAC conference? I can't be there - wonder what those who can think of actually doing something like this????