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From the 1st annual XMRV conference
- Thread starter George
- Start date
- Messages
- 88
- Location
- Farmington, NY
Ya know, the answers to some of these questions are just common sense. The answer is, dump the CDC definition of CFS.
guest
Guest
- Messages
- 320
It's funny how many want to deny us off-label treatment.
guest
Guest
- Messages
- 320
Judy is taking a stand for us and double blinded trials!
- Messages
- 88
- Location
- Farmington, NY
Who is the balding guy with the glasses?
anne_likes_red
Senior Member
- Messages
- 1,103
anne_likes_red
Senior Member
- Messages
- 1,103
August: John Coffin.
(LOL there was a q from you now it's gone??)
(LOL there was a q from you now it's gone??)
guest
Guest
- Messages
- 320
"My name is Doug I work in San Diego." 
Section is closed now.
Section is closed now.
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
It's over!!!
August59
Daughters High School Graduation
- Messages
- 1,617
- Location
- Upstate SC, USA
I think him and Judy definitely know something that the others don't. Just a feeling. He seems to be definitely on our side.
I'm glad Mindy got the shot in about the CDC calling CFS a pshycological disease!!!!!!!
anne_likes_red
Senior Member
- Messages
- 1,103
Will we be able to watch some of the presentations later in the week?
George
waitin' fer rabbits
- Messages
- 853
- Location
- South Texas
Holy freep, I think my brain just burned up the closing comments did you hear?
"yeah, I know things you don't"
"yeah, I know things you don't"
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Here are some highlights that I managed to scribble down during the live broadcast...
These are rough notes only - these are not quotes - I wrote these notes in real-time so there might be mistakes.
527 people watching videos on the website at one point.
Panel member - We don't have any whole P-MLV-RV viruses yet. We only have fragments, of gene sequences, or P-MLV-RV's.
XMRV is the only whole, complete (replicating?) virus that we have detected.
Panel member - Blood working group - Hope of the blood working group is to find a standardisation of some of the methodologies involved. We are trying to standardise blood collection and times.
Panel members x 2 - Aim is to head towards standardised assays, as there are with HIV. Should happen in a relatively short period of time. Maybe within a year. We have to develop a PCR or serological assay to screen large numbers of people.
Panel member - Blood working group - goal of clinical panel is to characterise positive patients - make sure we have a good cross section of patients (i.e. a geographic distribution).
Audience member says that different labs need to test the same patient samples to understand which methodologies work.
Audience member says Collection and storage of blood before processing could be cause of zero/zero studies.
Mikovits - blood working group has discussed/seen problems with collection and storage - processing protocol needed.
Panel member - Anti-retroviral trials - more knowledge needed before trials begin (we don't even have good enough detection methods yet)
Hillary Johnson (in audience) (nice surprise to see Hillary there!) - could JM answer question about anti-retrovirals? (JM politely declines to answer, maybe to avoid controversy?)
Panel member - enormous amount of scientists are diverting from their usual work to get involved with this virus. Funding money is needed to maintain this momentum.
Mikovits - zero studies are concentrating on PCR which is not how we test for these viruses. Different methods are needed, not simply just PCR.
Myra McClure (in audience) - says Serology is backing up our PCR. (meaning that she's done more than just PCR testing?). It was an uncomfortable interaction. JM did not look at all happy about having conversation with McClure (my perception only).
Mikovits & McClure discuss WPI sending samples to McClure to test. McClure might have said that she want to test WPI samples now, even though she didn't before, but i wasn't too sure about this.
Mikovits - says "at least 50 positives from the London area".
Glaxosmithkline (in audience) - question regarding virus to JM.
JM - we set up this study to look at all the viruses - Does CFS have an underlying immune deficiency like HIV? This is the hypothesis we are following and have setup chips to look at all different viruses. (is JM referring to her ongoing study that links XMRV to immune irregularities?) (couldn't take good notes here, as JM talks like a speaking bullet!)
Audience member - a question regarding definitions and saying 38% of CDC's patients are depressed, not ill with ME. Challenges Switzer (in audience) about why he didn't take his samples elsewhere to test them by someone who can detect the viruses.
Panel chairman ends this line of questioning.
Panel member (John Coffin?) - if we had a quantifiable assay (i.e. measures viral load), even if we weren't sure about causality, then it might be time to test anti-retrovirals, but we aren't at that point now.
Audience member - question about urgency of clinical trials - lessons should be learnt from early days of HIV.
Panel member - we learnt a lot from the HIV epidemic. The haemophilia community took the brunt of it. One the things we learnt from HIV experience was that we needed to have repositories (and we started the red studies?). We now have blood stored that is linked between donor and recipient.
JM - we have identified hundreds of XMRV +ve patients who are very sick, and those patient populations who are bed bound, and who haven't had a life for more than 20 years, could benefit from the benefit from our knowledge of these anti-retrovirals. (brief and quiet round of applause from audience)
JM - we had independent confirmation, from 3 different groups, of the research studies you heard about today (I suppose this means the WPI's UK study of 50 patients).
Panel member (John Coffin?) - we could start a very small scale trial of anti-retro-virals, under very tightly controlled clinical conditions, but we need a way to measure it first. I think giving individuals anti-retrovirals is unhelpful, and it won't progress the science for the whole patient population.
Audience member - HTLV-1 causes both a neurological disease and cancer - does anyone understand how, and does this have anything to do with XMRV?
JM - question to audience member - do you have any effective treatments for the neurological disease (related to HTLV-1)?
Audience member - "define effective"
Chairman stops this interaction and closes session.
These are rough notes only - these are not quotes - I wrote these notes in real-time so there might be mistakes.
527 people watching videos on the website at one point.
Panel member - We don't have any whole P-MLV-RV viruses yet. We only have fragments, of gene sequences, or P-MLV-RV's.
XMRV is the only whole, complete (replicating?) virus that we have detected.
Panel member - Blood working group - Hope of the blood working group is to find a standardisation of some of the methodologies involved. We are trying to standardise blood collection and times.
Panel members x 2 - Aim is to head towards standardised assays, as there are with HIV. Should happen in a relatively short period of time. Maybe within a year. We have to develop a PCR or serological assay to screen large numbers of people.
Panel member - Blood working group - goal of clinical panel is to characterise positive patients - make sure we have a good cross section of patients (i.e. a geographic distribution).
Audience member says that different labs need to test the same patient samples to understand which methodologies work.
Audience member says Collection and storage of blood before processing could be cause of zero/zero studies.
Mikovits - blood working group has discussed/seen problems with collection and storage - processing protocol needed.
Panel member - Anti-retroviral trials - more knowledge needed before trials begin (we don't even have good enough detection methods yet)
Hillary Johnson (in audience) (nice surprise to see Hillary there!) - could JM answer question about anti-retrovirals? (JM politely declines to answer, maybe to avoid controversy?)
Panel member - enormous amount of scientists are diverting from their usual work to get involved with this virus. Funding money is needed to maintain this momentum.
Mikovits - zero studies are concentrating on PCR which is not how we test for these viruses. Different methods are needed, not simply just PCR.
Myra McClure (in audience) - says Serology is backing up our PCR. (meaning that she's done more than just PCR testing?). It was an uncomfortable interaction. JM did not look at all happy about having conversation with McClure (my perception only).
Mikovits & McClure discuss WPI sending samples to McClure to test. McClure might have said that she want to test WPI samples now, even though she didn't before, but i wasn't too sure about this.
Mikovits - says "at least 50 positives from the London area".
Glaxosmithkline (in audience) - question regarding virus to JM.
JM - we set up this study to look at all the viruses - Does CFS have an underlying immune deficiency like HIV? This is the hypothesis we are following and have setup chips to look at all different viruses. (is JM referring to her ongoing study that links XMRV to immune irregularities?) (couldn't take good notes here, as JM talks like a speaking bullet!)
Audience member - a question regarding definitions and saying 38% of CDC's patients are depressed, not ill with ME. Challenges Switzer (in audience) about why he didn't take his samples elsewhere to test them by someone who can detect the viruses.
Panel chairman ends this line of questioning.
Panel member (John Coffin?) - if we had a quantifiable assay (i.e. measures viral load), even if we weren't sure about causality, then it might be time to test anti-retrovirals, but we aren't at that point now.
Audience member - question about urgency of clinical trials - lessons should be learnt from early days of HIV.
Panel member - we learnt a lot from the HIV epidemic. The haemophilia community took the brunt of it. One the things we learnt from HIV experience was that we needed to have repositories (and we started the red studies?). We now have blood stored that is linked between donor and recipient.
JM - we have identified hundreds of XMRV +ve patients who are very sick, and those patient populations who are bed bound, and who haven't had a life for more than 20 years, could benefit from the benefit from our knowledge of these anti-retrovirals. (brief and quiet round of applause from audience)
JM - we had independent confirmation, from 3 different groups, of the research studies you heard about today (I suppose this means the WPI's UK study of 50 patients).
Panel member (John Coffin?) - we could start a very small scale trial of anti-retro-virals, under very tightly controlled clinical conditions, but we need a way to measure it first. I think giving individuals anti-retrovirals is unhelpful, and it won't progress the science for the whole patient population.
Audience member - HTLV-1 causes both a neurological disease and cancer - does anyone understand how, and does this have anything to do with XMRV?
JM - question to audience member - do you have any effective treatments for the neurological disease (related to HTLV-1)?
Audience member - "define effective"
Chairman stops this interaction and closes session.
anne_likes_red
Senior Member
- Messages
- 1,103
Didn't hear that but heard a kind of rumbling thud and wondered if McCure had lost her footing on the way out...
Very thanks George, but fortunately there were subtitles..and I can read, not undersand all because there were very difficult Q & A,but for technical-medical reasons.
bullybeef
Senior Member
- Messages
- 488
- Location
- North West, England, UK
Mindy was great, but why did Stoye say, ‘were not going to discuss policy in Britain’? No one mentioned the UK.
Maybe it has something to do with him stating, “no one is doing negative studies!”, and he could help but say, Britain!!
Maybe it has something to do with him stating, “no one is doing negative studies!”, and he could help but say, Britain!!
Interesting to hear John Coffin cautiously approving the idea of small-scale clinical trials as proof of principle. Thought that that guy seeming to suggest that you'd just diagnose a bunch of people with CFS and chuck ARVs at them without stopping to test them for XMRV first had massively missed the point.
Actually I thought they all seemed pretty tired! Must have been a long couple of days.
My impression was that all is chaos and that it's going to take several months at least before people start singing from the same hymnsheet, if they do. Didn't somebody say they'd know by Xmas?
Actually I thought they all seemed pretty tired! Must have been a long couple of days.
My impression was that all is chaos and that it's going to take several months at least before people start singing from the same hymnsheet, if they do. Didn't somebody say they'd know by Xmas?