-
Phoenix Rising needs funds to operate: please consider donating to support PR
Article: XMRV In the Balance- A Tale of Two Conferences
- Thread starter Phoenix Rising Team
- Start date
Comments
Dr Mikovits simply cares for the patients and hates to see them suffering in the way that many have for decades.
She knows that she could treat them right now and considerably improve their qualities of life, which frustrates her!
Rather than knock her? I am incredibly grateful personally for her diagnosing what is wrong with me after 18years of disability and misery.
She knows that she could treat them right now and considerably improve their qualities of life, which frustrates her!
Rather than knock her? I am incredibly grateful personally for her diagnosing what is wrong with me after 18years of disability and misery.
My suspicion is that there is far more to the politics than we are every likely to know. From completely unrelated experience, I would characterize the politics of government-funded research as resembling the politics of feudal fiefdoms. The main differences are that scientific dynasties are seldom biological dynasties and bloodshed is replaced with spilled ink. Silverman, Klein, the Ruscettis, Alter and Lo all have their own fiefs. Mikovits has created a cadet branch of the Ruscetti dynasty as an end run on an institutional log jam. It is not safe to attack a major fief holder directly, but a cadet branch not under direct control is fair game. She is taking the risks well-established researchers, even well-intentioned ones, dare not. Some tactics will not work out, that is the nature of this approach. It is designed to keep the opposition on the defensive against sorties while sappers and siege engines are moved into position against hardened positions.
Naturally, this idiosyncratic interpretation is my own. However, any reader in medieval history should be able to supply illustrative examples.
Naturally, this idiosyncratic interpretation is my own. However, any reader in medieval history should be able to supply illustrative examples.
Yes, it was a well done presentation and I was back in the soup again. The one I'm keeping my eye on in particularly is Coffin - he always seems to be the smartest guy in whatever room he's in - and he is leaving things open . I assume that he, however, is waiting for the BWG to say whatever they have to say. Does anyone know how LeGrice is connected to them? He organized the first XMRV meeting but I don't if he's officially connected to them?
That's telling. Its hard enough here but what a tough environment for the British ME/CFS researchers.
They all could have played a better role. That statement about XMRV being worse that HIV/AIDs in Africa....probably destroyed her in many researchers eyes. One researcher told me you just don't recover from things like that. Talking about vaccines at the autism conference
. Saying publically that other researchers just don't want to find the virus - disaster! . It went on and on.......those statements were not in the best interests of the WPI , XMRV or the ME/CFS Community. (Of all the groups they - with a big target on their back - needed, above all, needed to keep their heads down and keep to the Science -show they could handle the pressure. That did not happen and so now they have a reputation in the research world and I imagine that its not a very good one. )
Still, it was part of the learning process - EVERYONE is new to their job over there - Judy has never been a Research Director and Annette has never run a Research Institute - and those comments have mostly stopped and hopefully, as XMRV is validated things will return to normal - with grants pouring in. The WPI got alot of money from the feds prior to XMRV, ironically - hopefully that will happen again.
If XMRV turns out Judy will appear to be something of genius on the science side, I imagine; the rather flamboyant researcher who maybe should stay out the public eye less but who figured out the mystery that's stumped so many. that's not a bad tag!
Perhaps but it's highly doubtful that WPI was going to be the focus of things going forward even if they weren't so outspoken. I'll subscribe to the theory that Washington and the major research institutions are extremely unhappy that WPI - a startup in podunk Reno - made such a splash. WPI would have been put in its place regardless of what Judy and WPI said or done. I'll also posit that if Judy and the WPI played by the rules there might not have been an article in Science magazine. Playing by the rules rarely enables break throughs in any field.
Personally I think WPI has already recognized that they are not the driving force any more and that is why they are so outspoken.
Personally I think WPI has already recognized that they are not the driving force any more and that is why they are so outspoken.
They all could have played a better role. That statement about XMRV being worse that HIV/AIDs in Africa....probably destroyed her in many researchers eyes. One researcher told me you just don't recover from things like that. Talking about vaccines at the autism conference . Saying publically that other researchers just don't want to find the virus - disaster! . It went on and on.......those statements were not in the best interests of the WPI , XMRV or the ME/CFS Community.
(Of all the groups they - with a big target on their back - needed, above all, needed to keep their heads down and keep to the Science -show they could handle the pressure. That did not happen and so now they have a reputation in the research world and I imagine that its not a very good one. )
Still, it was part of the learning process - EVERYONE is new to their job over there - Judy has never been a Research Director and Annette has never run a Research Institute - and those comments have mostly stopped and hopefully, as XMRV is validated things will return to normal - with grants pouring in. The WPI got alot of money from the feds prior to XMRV, ironically - hopefully that will happen again.
If XMRV turns out Judy will appear to be something of genius on the science side, I imagine; the rather flamboyant researcher who maybe should stay out the public eye less but who figured out the mystery that's stumped so many. that's not a bad tag!
. Saying publically that other researchers just don't want to find the virus - disaster! . It went on and on.......those statements were not in the best interests of the WPI , XMRV or the ME/CFS Community. (Of all the groups they - with a big target on their back - needed, above all, needed to keep their heads down and keep to the Science -show they could handle the pressure. That did not happen and so now they have a reputation in the research world and I imagine that its not a very good one. )
Still, it was part of the learning process - EVERYONE is new to their job over there - Judy has never been a Research Director and Annette has never run a Research Institute - and those comments have mostly stopped and hopefully, as XMRV is validated things will return to normal - with grants pouring in. The WPI got alot of money from the feds prior to XMRV, ironically - hopefully that will happen again.
If XMRV turns out Judy will appear to be something of genius on the science side, I imagine; the rather flamboyant researcher who maybe should stay out the public eye less but who figured out the mystery that's stumped so many. that's not a bad tag!
"Mikovits wrote in an e-mail that she realizes presenting at the conference "could destroy what is left of my career" but felt she had to accept.
"I know that presenting unpublished data will hurt me but the political attacks on the WPI and the lack of government response to a Science paper showing a new human retrovirus detected in a huge proportion of CFS patients told me that unless we do something now this could be the worst epidemic in U.S. history," she wrote. "Our continent will be like HIV Africa only worse!" end quote.
The HIV Africa statement should not have been made in my opinion, and I'd bet Judy regrets it, but I don't see it as a statement of fact.
Was it a disaster when Susan Vernon stated that the CDC study was designed to fail? I don't think so. I wish you would talk about the prejudice at the CDC and what she experienced. Maybe you could ask her about it next time you talk to her.
I agree with floydguy -- the WPI was going to take fire no matter what.
Dr. Mikovits talks very, very large. If she turns out to be right, she'll be seen as a Bob Gallo type figure - controversial, but unmistakably important.
But at this point, we desperately, desperately need replication and verification by other groups that have no affiliation with the WPI. Lo/Alter got us part of the way there, but until someone else publishes a positive study, it doesn't matter how large Dr. M. talks. I think her vague public comments about how "we can't get published" and "we can't get funded" aren't helpful at all without specifics, and only serve to make waiting patients and advocates more anxious and angry.
It may turn out that this level of brashness is exactly what was needed to fuel a major breakthrough; but it's also not going to carry the field forward all by itself.
Patients may continue to be motivated to send their pennies to WPI, but they are just that - pennies, compared to the 300 ton gorilla that is NIH funding. I want to know more on both sides of the question - what grant applications have actually been made and rejected? Is NIH *really* that lacking in quality applications, and what standard of "quality" are they applying?
But at this point, we desperately, desperately need replication and verification by other groups that have no affiliation with the WPI. Lo/Alter got us part of the way there, but until someone else publishes a positive study, it doesn't matter how large Dr. M. talks. I think her vague public comments about how "we can't get published" and "we can't get funded" aren't helpful at all without specifics, and only serve to make waiting patients and advocates more anxious and angry.
It may turn out that this level of brashness is exactly what was needed to fuel a major breakthrough; but it's also not going to carry the field forward all by itself.
Patients may continue to be motivated to send their pennies to WPI, but they are just that - pennies, compared to the 300 ton gorilla that is NIH funding. I want to know more on both sides of the question - what grant applications have actually been made and rejected? Is NIH *really* that lacking in quality applications, and what standard of "quality" are they applying?
UT,
Good questions. You might consider adding:
"What are the skills, knowledge and abilities of the NIH ME/CFS grant reviewers? Are they qualified for this job?"
Good questions. You might consider adding:
"What are the skills, knowledge and abilities of the NIH ME/CFS grant reviewers? Are they qualified for this job?"
Jonathan Kerr said that he applied to the MRC (MRC = Medical Research Council which is the UK government's main grant giving body) for a grant and it got turned down on the following score: 9, 9, 3. (Two referees gave him a '9' and one referee gave him a '3' which blocked the grant.)
Kerr said the '3' was awarded by (yes, you've guessed it) a psychiatrist.
If I remember correctly, the reason given by the psychiatrist for the low score was that he/she didn't approve of the proposed patient cohort selection criteria because it didn't fit in the with the establishment (i.e. psychiatric) view of CFS/ME. (I think Kerr wanted to use the Canadian criteria in his research.)
Here's a thread on the subject:
http://www.forums.aboutmecfs.org/sh...cal-Research-Council-(MRC)&p=34986&viewfull=1
Kerr said the '3' was awarded by (yes, you've guessed it) a psychiatrist.
If I remember correctly, the reason given by the psychiatrist for the low score was that he/she didn't approve of the proposed patient cohort selection criteria because it didn't fit in the with the establishment (i.e. psychiatric) view of CFS/ME. (I think Kerr wanted to use the Canadian criteria in his research.)
Here's a thread on the subject:
http://www.forums.aboutmecfs.org/sh...cal-Research-Council-(MRC)&p=34986&viewfull=1
That's one of the big problems, the researchers sitting on the CFS review panel generally don't know much about CFS. There are couple of reasons for this; -one is that CFS researchers don't apply much so when the review pool is created the reviewers generally tends to be focused on pain (FM); another is that the old head of the panel was a dental pain researcher and he got alot of dental pain people to sit on the panel. Whatever the reasons the review is usually very light on CFS researchers. Its a big problem.
I agree. THe big problem is not Judy's comments or prejudice towards the WPI - the most pressing problem is that we need more positive replication studies from independent researchers.If that happens that will carry the day and the research will boom - hopefully for everyone. Gallo has shown that you don't have to liked you just have to be right!
Uk mrc
Hi Bob,
At a recent UK conference Prof Stephen Holgate admitted that peer review at the MRC had been "inappropriate" in the past...... He has woken up and hopefully researchers will not be put off applying to the MRC for funding....... A new peer review system is in place now with the panel being knowledgeable about ME/CFS. Should be some move in the UK soon...... I hope.
BW
Joan
X
Hi Bob,
At a recent UK conference Prof Stephen Holgate admitted that peer review at the MRC had been "inappropriate" in the past...... He has woken up and hopefully researchers will not be put off applying to the MRC for funding....... A new peer review system is in place now with the panel being knowledgeable about ME/CFS. Should be some move in the UK soon...... I hope.
BW
Joan
X
Wow, that's good news - ridiculous to have psychiatrists on the review panel - do we know who is now on the MRC's ME/CFS review panel?
Joan, that is good news. Do you have any more info on this (e.g. what conference he said it at, and preferably a transcript)?
I know some people I would really like to make aware of these facts!
Many thanks,
garcia.
I know some people I would really like to make aware of these facts!
Many thanks,
garcia.
Thanks for that news Joan... I'm sorry to be negative but, unfortunately, I've been hearing about how the MRC will transform ME research for about 5 years now, and nothing positive has happened since they set up their special ME working group about 2 or 3 years ago...
Since I've been ill, I think there's been zero government funding given to biomedical research into ME in the UK. Zero funding.
I've given up with hoping about progress in the UK now, and I now just look across the Atlantic for hope.
The trouble is that when any of us, in the ME community, contact the UK government about bias in the MRC, and the MRC's lack of accountability, then who does the Department of Health consult with about our concerns? Yes, you've guessed it, they consult Wessely, the chosen government ME 'expert' of choice, who tells them that our concerns are unfounded. The government then replies to us that our concerns are unfounded for the various reasons given to them by Wessely. It's like collectively banging our heads against a brick wall. Top officials from the MRC and the Department of Health refuse to attend the Invest in ME yearly conferences, where there is a wealth of information and evidence presented about the biomedical nature of the disease, and the need for tighter diagnostic criteria in ME research.
Yes, it would be interesting to hear what he had to say... Do you have any links to any further info about this, Joan?
Since I've been ill, I think there's been zero government funding given to biomedical research into ME in the UK. Zero funding.
I've given up with hoping about progress in the UK now, and I now just look across the Atlantic for hope.
The trouble is that when any of us, in the ME community, contact the UK government about bias in the MRC, and the MRC's lack of accountability, then who does the Department of Health consult with about our concerns? Yes, you've guessed it, they consult Wessely, the chosen government ME 'expert' of choice, who tells them that our concerns are unfounded. The government then replies to us that our concerns are unfounded for the various reasons given to them by Wessely. It's like collectively banging our heads against a brick wall. Top officials from the MRC and the Department of Health refuse to attend the Invest in ME yearly conferences, where there is a wealth of information and evidence presented about the biomedical nature of the disease, and the need for tighter diagnostic criteria in ME research.
Yes, it would be interesting to hear what he had to say... Do you have any links to any further info about this, Joan?
Hi, Cort,
Excellent work.
I could not find any mention of DERSE in a Google search. But, from my experiences in the field, I believe that DERSE stands for Detection of Exogenous Retroviral Sequence Elements. Each retrovirus has some sites that have a sequence shared with other retroviruses; they also have sites that are unique. I believe from the context that DERSE is a method of detecting these unique sequences. Hopefully it can do this consistently, without losing sequences from some variants of the viral genome, as PCR can do if there is a mutation in the primer region.
Excellent work.
I could not find any mention of DERSE in a Google search. But, from my experiences in the field, I believe that DERSE stands for Detection of Exogenous Retroviral Sequence Elements. Each retrovirus has some sites that have a sequence shared with other retroviruses; they also have sites that are unique. I believe from the context that DERSE is a method of detecting these unique sequences. Hopefully it can do this consistently, without losing sequences from some variants of the viral genome, as PCR can do if there is a mutation in the primer region.
Hi again,
I did manage to locate an abstract that confirms that DERSE is Detection of Exogenous Retroviral Sequence Elements. It is actually posted here in Phoenix Rising -
< http://www.forums.aboutmecfs.org/showthread.php?7681-Abstracts-from-the-1st-XMRV-Conference/page2 >
The first line of the Results section.
The method consists of a specially developed cell line that is sensitive to infection with XMRV-like viruses. From the abstract they appear to believe that this sensitivity is very specific. These cells they call DERSE cells.
I did manage to locate an abstract that confirms that DERSE is Detection of Exogenous Retroviral Sequence Elements. It is actually posted here in Phoenix Rising -
< http://www.forums.aboutmecfs.org/showthread.php?7681-Abstracts-from-the-1st-XMRV-Conference/page2 >
The first line of the Results section.
The method consists of a specially developed cell line that is sensitive to infection with XMRV-like viruses. From the abstract they appear to believe that this sensitivity is very specific. These cells they call DERSE cells.