Anti-XMRV Blog -New post

[Impish]

I think ERV's blog is designed to draw traffic. I exchanged some emails with her and she actually took the time to explain a technical point about PCR to me. She isn't all bad.

I think she is young and hasn't entirely thought through the conseqences of what she is posting. Compare her posts to what Dr. Coffin has gone on the record with. He is careful to always qualify his statements since the truth is at this point no one knows for sure if XMRV is the cause of CFS or not. If it is XMRV ERV looks like an idiot and frankly that could have some sort of impact on her academic career. I remember doing some very stupid things when I was in my 20's without thinking through the long term ramifications so I kind of feel sorry for her.

I tried to debate her rationally and found it to be somewhat pointless so I don't bother responding anymore.

 

[omerbasket]

Of course it's their life and their choice, I was not arguing that. Erv seems to be trying to explain the dangers and lack of scientific evidence to support taking antiretrovirals at the current moment. People under desperation can do really rash things. Some people may completely wish to take antiretrovirals to see if they will help but I'm betting there's a subset of people who are grabbing anything they can..and that's really dangerous. This isn't paracetamol, it's really toxic stuff that can make you seriously ill; so you could end up with being seriously ill from the antiretrovirals, and seriously ill on top with ME/CFS, which hadn't been treated by the antiretrovirals for whatever reason (wrong drug, wrong dosage, xmrv not being causative, etc).

Thankyou for the correction too Hope123, people really need to be careful not to mis-read/mis-quote what the experts say.

You can end up with all of that, but even desperate people are not stupid: They know that XMRV has not been proven as the cause of their illness, they know antiretrovirals are toxic, much more than Paracetamol, but they can choose for themselves whether they want to take the risk or not. They don't need "erv" to tell them what to do.

 

[ixchelkali]

Or are you okay with being ill - perhaps even afraid to be well again?

Don't we all get enough of this kind of comment from the psych school, the press, and non-understanding doctors and friends, without subjecting one another to this kind of remark here on this forum? I don't agree with Elliot on this subject, either, but can't we disagree without impugning one another's motives?

Sorry, but I think it's outrageous to suggest that anyone would be "okay" with having this disease, especially coming from someone who has experienced it.

 

[ixchelkali]

As we say in Alabama, she sure is rude, bless her little heart.

Tina

ROFL. Thank you for giving me my laugh of the day.

 

[usedtobeperkytina]

yeah

Anyone take a debating class in high school? I didn't. But from what I understand, name calling is not considered an effective strategy. Reasoning on logic, but appealing to basic human emotions to create empathy for your position, using metaphors, this is what is effective.

Tina

 

[Elliot]

You can end up with all of that, but even desperate people are not stupid: They know that XMRV has not been proven as the cause of their illness, they know antiretrovirals are toxic, much more than Paracetamol, but they can choose for themselves whether they want to take the risk or not. They don't need "erv" to tell them what to do.

But I think what erv is trying to do is, even though she may come off as arrogant and condescending, is giving people the full information. People can chose for themselves, true, but they are not retrovirologists or doctors specialising in virology; how can they make a fully informed choice that isn't substantially based upon raw emotion? How do they know that 'X' antiretroviral will help? Plus you have to factor in the possibility of drug resistance in ineffective doses which could breed resistant strains of XMRV also, surely that's something to consider?

I really do understand the desperation, honestly I do, but sometimes you have to sideline the emotional side of things to really get to the meat of the facts, as it were.
And thankyou ixchelkali, we can disagree without mud slinging, which is good!

 

[garcia]

But I think what erv is trying to do is, even though she may come off as arrogant and condescending, is giving people the full information. People can chose for themselves, true, but they are not retrovirologists or doctors specialising in virology; how can they make a fully informed choice that isn't substantially based upon raw emotion? How do they know that 'X' antiretroviral will help? Plus you have to factor in the possibility of drug resistance in ineffective doses which could breed resistant strains of XMRV also, surely that's something to consider?

I really do understand the desperation, honestly I do, but sometimes you have to sideline the emotional side of things to really get to the meat of the facts, as it were.
And thankyou ixchelkali, we can disagree without mud slinging, which is good!

Elliot, are you a clinician? Are you a retrovirologist? Are you an ME/CFS doctor? Is ERV?

If the answer to all of the above is no then I would remind you that the decision whether to use antiretrovirals or not lies with each patient and their physicians. It is not really a matter for either you or ERV.

 

[Elliot]

Elliot, are you a clinician? Are you a retrovirologist? Are you an ME/CFS doctor? Is ERV?

If the answer to all of the above is no then I would remind you that the decision whether to use antiretrovirals or not lies with each patient and their physicians. It is not really a matter for either you or ERV.

ERV's profile: 'I'm a graduate student studying the molecular and biochemical evolution of HIV within patients and within populations. I also study epigenetic control of ERVs. '

 

[garcia]

ERV's profile: 'I'm a graduate student studying the molecular and biochemical evolution of HIV within patients and within populations. I also study epigenetic control of ERVs. '

The operative word being student. Not qualified. Not a clinician. Just a random nutter who happens to have a blog.

 

[Elliot]

Being a graduate usually entails a tad more qualification than a random nutter, though?

 

[muffin]

Garcia hit it on the head...

"The operative word being student. Not qualified. Not a clinician. Just a random nutter who happens to have a blog."

I agree that this blogger is just some grad school kid with a little bit of information (always dangerous) who also has grad school buddies bringing up the rear with nasty, childish comments. I think ERV has a college buddy with an English major who thinks discussion involves correcting writing abilities. How cute! Why a grad student would even dare to put their "brilliant" thoughts out on the web for others to read is beyond me. I kept my mouth shut with two plus grad degrees until I had a good ten years of real world experience (and lots of real world beatings) to really carry me.

Again, just ignore this child. We have adults with MDs and PhDs and decades of clinical/research experience that have to be dealt with since they are the ones that can and have done real damage to CFIDS research/funding and our image. Our image -- you know, crazy, lazy, depressed, and all the rest that our real enemies, the educated sociopaths Reeves and Weasel et al, have used against us for 30 years.

I don't play with children. It hurts my head and drains my energy. I suggest others ignore this kid as well and stick to fighting the real adults.

 

[jspotila]

Elliot, are you a clinician? Are you a retrovirologist? Are you an ME/CFS doctor? Is ERV?

If the answer to all of the above is no then I would remind you that the decision whether to use antiretrovirals or not lies with each patient and their physicians. It is not really a matter for either you or ERV.

Yes, the decision to use antiretrovirals is between a patient and his/her physician. But the vast majority of physicians, even CFS clinicians I suspect, will be hesitant to use antiretrovirals without some of the evidence that ERV says is needed: a way to measure viral activity, testing in CFS animal models, and/or ways to measure what effect the drug is having. And the prospect of creating drug-resistant XMRV should be chilling to anyone who thinks it causes one or more human disease.

There are many criticisms that can and have been lobbed at ERV, but that does not mean that all of the information she presents is completely wrong. Isn't it better to have an idea of what doctors and others may say against use of antiretrovirals?

 

[Sam Carter]

Why is Elliott being excoriated for questioning the wisdom of taking anti-retroviral medication? I share his concern and if this means I happen to agree with the obnoxious and immature ERV (on this one point) then why does that matter?

People are free to choose whether to take AR-therapy or not although there is a communitarian argument suggesting caution: wrongly applied ART could encourage viral mutation and the development of resistant strains of XMRV.

 

[akrasia]

Yes, the decision to use antiretrovirals is between a patient and his/her physician. But the vast majority of physicians, even CFS clinicians I suspect, will be hesitant to use antiretrovirals without some of the evidence that ERV says is needed: a way to measure viral activity, testing in CFS animal models, and/or ways to measure what effect the drug is having. And the prospect of creating drug-resistant XMRV should be chilling to anyone who thinks it causes one or more human disease.

There are many criticisms that can and have been lobbed at ERV, but that does not mean that all of the information she presents is completely wrong. Isn't it better to have an idea of what doctors and others may say against use of antiretrovirals?

"It will take time to answer the many questions raised by the discovery of XMRV. The good news is that some of the anti-retroviral drugs licensed for treating AIDS can be immediately tested for their efficacy against CFS."
(Vincent Racaniello, Virology Blog, October 15, 2009)

I see no reason, even without any of the measurements outlined above, not to try anti retrovirals particularly those that have efficacy in vitro against XMRV. Like so many of the treatments used by CFS and Lyme clinicians, improvement can be measured clinically. You might wait a very long time for the markers ERV argues for. AZT and Ratalgravir are not drugs you can acquire casually and will probably be taken under the supervision of an informed and sympathetic physician. Creating drug resistance, at this moment in time when only tiny numbers of people will be trying it is a red herring. As time goes on, and drugs lose efficacy, then there will be others to work with.

One of the things Judy Mikovits posseses is a sense of urgency. She gets it.

One should be always wary of those who are "looking out" for you and address you as if you were a moron, particularly if they invoke the ravings of a future Amy Bishop.

 

[V99]

I think people are, as you put it, excoriating Elliot, because the dangers of taking ARV's is obvious. Also, scientists like Coffin, Mikovits and Goff have already spoken about this issue. As for student Abby, does it matter if she says something that is correct, if the rest of her blog abuses patients. After all only a handful of people will be taking them, because they have to go though their physician. When you are placed in a no win situation, these kinds of decisions look very different.

What of creating a super XMRV I here you say. Well who else has this and is taking ARV's for something else, what about leaving XMRV unchecked, that is likely to lead to mutation. Student Abby should be asking these questions also, but she placed her feet firmly on the ground at the start and now will not change her view no matter what. Hence why she's does not ask these questions on her blog.

As for being a nutter, grad students can be random nutters too. Holding any qualification or not has no influence on whether a person is a nutter or not.

 

[garcia]

One of the things Judy Mikovits posseses is a sense of urgency. She gets it.

One should be always wary of those who are "looking out" for you and address you as if you were a moron, particularly if they invoke the ravings of a future Amy Bishop.

Brilliant post. Why do we even have to stoop to quoting ERV? If people are worried about the possibility of resistance from monotherapy, why not quote Dr Mikovits who has already addressed this issue??? (she is against monotherapy) Why can't we quote the people who actually care about us and are spending every moment of their working lives fighting for us, instead of the misanthropes?

 

[Sean]

I think she is young and hasn't entirely thought through the conseqences of what she is posting.

Sure looks that way.

I think Coffin and Ruscetti were lied to by Judy and Annette, either purposefully or because those two women are fantastically stupid. In any case, I do expect Dr. Ruscetti to send an apology to Dr. van Kuppeveld, now that he knows the real deal with the Dutch samples.

Coffins completely credulous take on XMRV-->CFS has been a point of discussion among some of us. Its odd.

Posted by: ERV | May 6, 2010 10:50 PM

I would be talking to the defamation lawyers if I were Judy or Annette.

 

[Impish]

I think people are, as you put it, excoriating Elliot, because the dangers of taking ARV's is obvious. Also, scientists like Coffin, Mikovits and Goff have already spoken about this issue. As for student Abby, does it matter if she says something that is correct, if the rest of her blog abuses patients. After all only a handful of people will be taking them, because they have to go though their physician. When you are placed in a no win situation, these kinds of decisions look very different.

What of creating a super XMRV I here you say. Well who else has this and is taking ARV's for something else, what about leaving XMRV unchecked, that is likely to lead to mutation. Student Abby should be asking these questions also, but she placed her feet firmly on the ground at the start and now will not change her view no matter what. Hence why she's does not ask these questions on her blog.

As for being a nutter, grad students can be random nutters too. Holding any qualification or not has no influence on whether a person is a nutter or not.

I am not an expert by any means but given that all of the scientists have noted on the small amount of genetic diversity found in XMRV I don't think (again not an expert) that there is much of a chance based on that of an strong evolutionary response to medication. HIV mutates like a mofo when it infects someone and that is one of the ways it battles its way around individuals immune systems. That is why they talk about those who are HIV positive still practicing safe sex. You don't want to get infected with someone elses mutated versions of the virus.

Also based on my email exchange with ERV she seems to know what she is doing in regards to lab technique. It is also interesting to note that her email's to me were polite and in direct contrast to her public persona.

 

[V99]

I'm not arguing agaist the science, it's the student who picks and chooses. I'm saying leave people alone, they are not stupid and know of the issues. Actual scientists have voiced their opinions on these matters already. As for this girls blog, what does it tell you when she changes her tone in private emails?

 

[muffin]

V99: "As for this girls blog, what does it tell you when she changes her tone in private emails?" -- It tells me she is just a kid in the very initial stages of understanding what she is blogging about. Maybe she is going to put it on her CV as proof that she can think, write, etc. The sad thing is that she is going to need far more than just a grad degree to get a decent job as a researcher. Those with doctorates are having a hard time getting jobs in the research labs. She would be lucky to get a job making coffee for the real scientists. Let her blog and just ignore her and her little friends. Children should be seen and not heard...