HOT! Coffin, Sharma, and Goff@ Conference on Retroviral Infections...
- Thread starter parvofighter
- Start date
Just like to say welcome, Jack. Looking at your comments and also our smilies makes me smile! Hang around a bit ,Jack. There's waaaaaaaaaaaaaaaaaaay more here than you obviously realize! Skip around a bit on some of the many many different threads. We tend to interject humor into the most serious threads, and then we also have threads for pure humor down in the community lounge. It'll take you quite some time to see that this site is very broad and extremely comprehensive.
And don't let all the superb intellect of our wonderful brainiacs intimidate you ..........nah, just throw in an emoticon, if you're feeling a little intimidated when you want to make a statement and feel a little underpar. We are all extremely kind and would never think of making fun of you or your manners. It's just not our way.
This place is sooooooo expansive it can take weeks to even begin to take it all in, so I say again, chap, don't be intimidated. Just take your time and peruse at your leisure. There's so much more here than meets the eye.
And I know there is a way to disable those darn smilies if they are a bother to you. If you're one of us, there's any manner of things that could have happened to your brain to create an aversion to smilies, so no hard feelings there. I just can't remember at the moment where it is that you can turn them off. Should it come to me, I'll let you know pronto!!
Well now, I guess I have hi-jacked this supberb thread enough now. Just didn't want to overlook an opportunity to welcome a newbie to this wonderful home, Cort has so lovingly made for us. So Welcome!!! I'll look forward to hearing more from you. And I will resist using the hug emoticon or any emoticon in this one post to you!!! Can't make any promises for the future. Bad memory, you know
Warmest Regards, Lily
And don't let all the superb intellect of our wonderful brainiacs intimidate you ..........nah, just throw in an emoticon, if you're feeling a little intimidated when you want to make a statement and feel a little underpar. We are all extremely kind and would never think of making fun of you or your manners. It's just not our way.
This place is sooooooo expansive it can take weeks to even begin to take it all in, so I say again, chap, don't be intimidated. Just take your time and peruse at your leisure. There's so much more here than meets the eye.
And I know there is a way to disable those darn smilies if they are a bother to you. If you're one of us, there's any manner of things that could have happened to your brain to create an aversion to smilies, so no hard feelings there. I just can't remember at the moment where it is that you can turn them off. Should it come to me, I'll let you know pronto!!
Well now, I guess I have hi-jacked this supberb thread enough now. Just didn't want to overlook an opportunity to welcome a newbie to this wonderful home, Cort has so lovingly made for us. So Welcome!!! I'll look forward to hearing more from you. And I will resist using the hug emoticon or any emoticon in this one post to you!!! Can't make any promises for the future. Bad memory, you know
Warmest Regards, Lily
G
Good Morning or afternoon all, Well, I'm awake and have spent the morning reading everything. It' all makes perfect sense. They really haven't published anything that the patient population haven't been telling them for years. (big grins)
But seriously now, I think it's important to note here to all the people who have tested XMRV negative that the negative doesn't mean anything. The assays and testing methods to date have been a shot in the dark all the way around. There should be some pretty good testing methodologies to build on now that the information is being shared.
As Kurt has pointed out in past posts, a lot of the problems we are seeing in the published papers have been about money. Groups trying to put together testing methods that will net profit and the withholding of information or lack of clarity in the race for bragging rights and licensing.
We have an "ideal" of who scientist should be, and we've had a really hard time lately digesting what's going on, because the "ideal" hasn't = the "reality". The reality is that money, prestige and careers are all on the line with XMRV. These people aren't sick so they don't play the game with compassion for the hundreds of thousands of ill and suffering they play the game for themselves and their groups. And that's o.k. really, it isn't any different for most people in most things.The truly compassionate people are off doing compassionate things (which is where they should be) they aren't stuck in a lab looking at soon to be dead monkeys.
I can translate science but I kinda suck at the touchy feelie stuff. Hang tough is what I'm trying to say. Anybody wants question answered from the abstracts I'll be glad to give it a go.
Hugs and tail wags
George
But seriously now, I think it's important to note here to all the people who have tested XMRV negative that the negative doesn't mean anything. The assays and testing methods to date have been a shot in the dark all the way around. There should be some pretty good testing methodologies to build on now that the information is being shared.
As Kurt has pointed out in past posts, a lot of the problems we are seeing in the published papers have been about money. Groups trying to put together testing methods that will net profit and the withholding of information or lack of clarity in the race for bragging rights and licensing.
We have an "ideal" of who scientist should be, and we've had a really hard time lately digesting what's going on, because the "ideal" hasn't = the "reality". The reality is that money, prestige and careers are all on the line with XMRV. These people aren't sick so they don't play the game with compassion for the hundreds of thousands of ill and suffering they play the game for themselves and their groups. And that's o.k. really, it isn't any different for most people in most things.The truly compassionate people are off doing compassionate things (which is where they should be) they aren't stuck in a lab looking at soon to be dead monkeys.
I can translate science but I kinda suck at the touchy feelie stuff. Hang tough is what I'm trying to say. Anybody wants question answered from the abstracts I'll be glad to give it a go.
Hugs and tail wags
George
Here it's almost night. :Retro smile:
Thanks for the summary of good news. :Retro smile:
I don't know if it is of any significance but I remember very well that few months before my illness suddenly started like an infectious mononucleosis I had a very strange feeling in my bowels somewhere underneath my scar from previous appendectomy. It was something like a "tingling" in the guts. It lasted about two to three months but I was healthy and I paid no special attention to it. And just two or three days before my illness started like a flu I had a severe allergic reaction to the chlorinated water in a swimming pool. I was never allergic to anything so it was also quite strange.
Thanks for the summary of good news. :Retro smile:
I don't know if it is of any significance but I remember very well that few months before my illness suddenly started like an infectious mononucleosis I had a very strange feeling in my bowels somewhere underneath my scar from previous appendectomy. It was something like a "tingling" in the guts. It lasted about two to three months but I was healthy and I paid no special attention to it. And just two or three days before my illness started like a flu I had a severe allergic reaction to the chlorinated water in a swimming pool. I was never allergic to anything so it was also quite strange.
All this discussion at the meeting is extraordinary!!!! Anyone else feel a little like CFS is hitting the big time? :victory: You know, FINALLY?
Does anyone know if Dr. Mikovits or Dr. Lombardi submitted abstracts and/or attended the meeting? (I know Dr. Mikovits did that Q&A with Dr. Cheney on Saturday.) Meetings like the retrovirology meeting are one of the best places for researchers to exchange info and ideas. I hope WPI had a presence there to participate in that give and take! Anyone know?
Does anyone know if Dr. Mikovits or Dr. Lombardi submitted abstracts and/or attended the meeting? (I know Dr. Mikovits did that Q&A with Dr. Cheney on Saturday.) Meetings like the retrovirology meeting are one of the best places for researchers to exchange info and ideas. I hope WPI had a presence there to participate in that give and take! Anyone know?
K
Welcome to the forums Jackofit. If emoticons are not your cuppa tea, you can view any of the threads in a mode that will show only text
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Thanks to parvofighter for finding the conference and fds66 for the abstracts and everyone else who has gathered info/ commented!
Monkeys are not people so we do have to be cautious about extrapolating info but this is exciting!
1. I agree with Kim. Tissue showing infection with XMRV in women with CFS vs. women without would certainly lend stronger evidence of XMRV's role in CFS. Not a fan of them but I'd be willing to undergo a Pap smear to figure out what's going on. Also, if it's in lymph nodes, lymph node biopsies (armpits/ groins esp.) aren't too invasive and would be a relatively minor outpatient procedure.
2. The early infection of CD4 cell counts jibe with my own and some other people's histories of low CD4 cell counts at the beginning of CFS.
3. I believe Kerr mentioned the potential of treating with intereferon-beta a while back in one of his gene expression study papers but this was before XMRV. Wasn't there a small trial of this way back in the 1990s (Seattle conference, abstract?) ?
Monkeys are not people so we do have to be cautious about extrapolating info but this is exciting!
1. I agree with Kim. Tissue showing infection with XMRV in women with CFS vs. women without would certainly lend stronger evidence of XMRV's role in CFS. Not a fan of them but I'd be willing to undergo a Pap smear to figure out what's going on. Also, if it's in lymph nodes, lymph node biopsies (armpits/ groins esp.) aren't too invasive and would be a relatively minor outpatient procedure.
2. The early infection of CD4 cell counts jibe with my own and some other people's histories of low CD4 cell counts at the beginning of CFS.
3. I believe Kerr mentioned the potential of treating with intereferon-beta a while back in one of his gene expression study papers but this was before XMRV. Wasn't there a small trial of this way back in the 1990s (Seattle conference, abstract?) ?
Also enlarged lymph nodes as a child
Yes, I also had enlarged lymph nodes as a child. When I was about 2.5 to 3 years I tested very positive to TB and at the same time had VERY enlarged lymph nodes in my neck. (Apparently I didn't have TB but some other mycobacteria that causes a false positive TB test). The nodes in my neck were painless but very hard and gradually got smaller until they were normal size again when I was in my early 20s. Whenever I'd get sick with a cold or anything they would swell up a bit more and sometimes the pressure in them made them hurt a bit when pushed on. I also recall first noticing swollen nodes in my groin in my very early 20s and they were uncomfortable but may have had those much earlier without noticing.
I have 2 siblings and neither of them have CFS or any of these related health issues. Although one did have Hodgkins Lymphoma and the other has some kind of chronic infection issues. Yes, all very puzzling!
Yes, I also had enlarged lymph nodes as a child. When I was about 2.5 to 3 years I tested very positive to TB and at the same time had VERY enlarged lymph nodes in my neck. (Apparently I didn't have TB but some other mycobacteria that causes a false positive TB test). The nodes in my neck were painless but very hard and gradually got smaller until they were normal size again when I was in my early 20s. Whenever I'd get sick with a cold or anything they would swell up a bit more and sometimes the pressure in them made them hurt a bit when pushed on. I also recall first noticing swollen nodes in my groin in my very early 20s and they were uncomfortable but may have had those much earlier without noticing.
I have 2 siblings and neither of them have CFS or any of these related health issues. Although one did have Hodgkins Lymphoma and the other has some kind of chronic infection issues. Yes, all very puzzling!
I had an "infected gland" in my neck when I was six. I had to go to the doctor for shots (I don't know what of), and then had to have the gland lanced to drain out the infection. A short while later, another "gland" further back in my neck began to grow quite swollen. My parents did not take me back to the doctor this time (another story for another day), and it eventually went away on its own. It left a huge scar on the side of my neck.
I'm assuming that these were lymph nodes. I was not sick as a child. When I came down with CFS, my glands on both sides of my neck would get swollen and very achy. That still happens sometimes when I'm feeling worse.
I have no explanation for what happened to me as a child.
I'm assuming that these were lymph nodes. I was not sick as a child. When I came down with CFS, my glands on both sides of my neck would get swollen and very achy. That still happens sometimes when I'm feeling worse.
I have no explanation for what happened to me as a child.
G
Some info on Lymph nodes and the Lymph system
I'll see if I can find some better ones
Just thought I'd put these pictures up ( I hope they come out o.k.)
They show where all the little lymph nodes are. The lymph nodes are where the B, and T cells are warehoused. From here is where our bodies fight any type of infection that comes in.
The lymph systems touches every part of the body. Pathogens that are able to infect this system are pretty rare and usually pretty nasty. This is like getting into the main castle. If you can just waltz right in under "THE" defense system well, you pretty much own the host! The war is kinda over before it ever begins.
I'll see if I can find some better onesJust thought I'd put these pictures up ( I hope they come out o.k.)
They show where all the little lymph nodes are. The lymph nodes are where the B, and T cells are warehoused. From here is where our bodies fight any type of infection that comes in.
The lymph systems touches every part of the body. Pathogens that are able to infect this system are pretty rare and usually pretty nasty. This is like getting into the main castle. If you can just waltz right in under "THE" defense system well, you pretty much own the host! The war is kinda over before it ever begins.
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Do any of you women have breast swelling? I hate to post this! Was going to save it for a women's only thread, but given the new findings of XMRV reproduction organ locations in animals, I'll post it here. Certain drugs, treatments, supplements, and even foods seem to cause lymphatic breast swelling for me, even the tanning booth minutes I did to try and boost my vitamin D....wondered how many other of you are having this happens? Is this on the survey? I tried to find the XMRV survey thread and couldn't. Wanted to look it up. All of this is so so so so so exciting! It's happening so fast, and yet not fast enough, all at the same time.
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wow, my mom had typhoid fever when I was 6 years old.
We are not scientists talking to other scientists. We are patients, albeit more educated about our illness than likely any other patients are about their illness, simply out of necessity, but we are still patients.
Emoticons are not childish but are a form of expression. Sometimes, in fact, it is important for clarity. I just had someone on another forum think I was upset when in fact I was teasing. If I had used an emoticon with a wink, the tone would have been clear.
And color and enthusiasm can also be fun with intelligence. They are not exclusive.
Tina
Emoticons are not childish but are a form of expression. Sometimes, in fact, it is important for clarity. I just had someone on another forum think I was upset when in fact I was teasing. If I had used an emoticon with a wink, the tone would have been clear.
And color and enthusiasm can also be fun with intelligence. They are not exclusive.
Tina
G
thankyou i did not know that either