Anti-XMRV Blog -New post

[V99]

Hope 123.
Don't read this in the wrong way, it's getting late and I have no intention of being rude, honest. It's just a sum up of what I was thinking. eekkk
I didn't say I remember correctly, and this is a discussion, so I'm not bothered right now that I thought it was Coffin. I didn't use a quote either, as I didn't have one, and was hoping it would jog someone else's memory. Sorry Coffin. Always prefer to use quotes, let them speak for themselves in full. Again sorry Coffin, you are the man. he he.

As for ERV, got to agree with acer2000 & Robyn. She's got a Mikovits bee in her bonnet, and wants to swat it. It's don't matter that the bee may come with a sting. I say it's your body, do what you want. No one has the right to dictate the future for any of us. Personally I wouldn't take the ARV at the moment, but no one is offering anything else. As for her fear of drug resistant super XMRV, true that could happen, so wouldn't she be better off asking why they haven't banned blood donations yet? and when will they spend good money on research into the CFS XMRV association? After all, what happens if a patient with CFS needs ARV for another retrovirus? What if any of those 4% of controls take ARV's for anything else? Same problem.

 

[V99]

Just before I say goodnight, I will go and alter the bit in my first post so it is really obvious I wasn't sure. Night.

 

[Kelly]

link provided

Dr. Coffin has done considerable work regarding anti-virals as it relates to HIV, but not regarding XMRV unless it is not yet listed in PubMed.

Dr. Ila Singh who is working with Dr. Bateman in Utah has. See "Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome"

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0009948

However, note the wording, "If XMRV proves to be a causal factor in prostate cancer or CFS, these discoveries may allow for rational design of clinical trials."

No one has proven a casual connection between XMRV and any human disease at this point in time. That isn't a conspiracy, it is simply a fact at this time. Good science takes time and money.

As for ERV, if doctors started doing chemotherapy without specific parameters and protocols on anyone who walked into their office people would also correctly question that. ERV makes some good points as well as some points that are opinion based because she lacks a full knowledge of the biomedical research regarding CFS. ERV has stated that she does not question whether CFS is an actual disease or not - just the conclusions drawn based on the research she is familiar with thus far. Enlighten her using peer reviewed research.

I think it fair to say that if you want the freedom to express your opinion you have to give others the same right. Opinions are like belly buttons - everyone has one. If you disagree with ERV prove your point citing peer reviewed research. Bitch slapping may feel good, but it reflects on the person doing the slapping just as much as the person slapped. It also makes the person slapped less inclined to support your point of view or to listen. That's not just ERV that is human nature.

That said there are however studies regarding the use of valcyclovir against those cases of CFS caused or perpetuated by EBV. Query PubMed under J. Montoya or AM Lerner for starters.

 

[lululowry]

There are four drugs that have been shown to inhibit XMRV: http://www.aidsmap.com/en/news/7783CFCE-5022-40C8-AE08-0A99D440CAC2.asp

V99 -you're asking good questions.

And I love this image: "She's got a Mikovits bee in her bonnet, and wants to swat it." ERV running around hitting herself on the head.:Retro tongue:

 

[Daffodil]

my evidence is that i feel better and so do others i speak to who are on the drugs. there are only a few people so far, though.

 

[Elliot]

That is anectdotal evidence Daffodil, but I'm glad it is helping you. I'm assuming you're being supervised by a doctor throughout this, yes?
And an excellent post Kelly As you said it's better to counter others opinions with facts and evidence, preferably scientific journals. It's a lot better than just going into blind fist throwing rhetoric which doesn't reflect well on the fist thrower!

 

[ixchelkali]

I don't see what is wrong with suggesting taking anti-retrovirals right now when there is no science to back up (yet) that they are effective is an attack? More of a wise decision? :/

Sure, ERV presents some sound arguments against taking anti-retrovirals until more research is in. And if that were all she did, maybe I could agree with you, Elliot, but that isn't all she does. Surely you noticed that she also takes some very strong potshots at the WPI, Judy Mikovits, and ME/CFS patients. I find that unwarrented and unbecoming, and it undermines her arguments. Not to mention, she's arrogant, condescending and snide.

Assuming WPI/Mikovits have super powers and they really are the only humans on Planet Earth that can find this virus in CFS patients

Ive seen a ton of hand waving and just-so stories, but not a lick of science. Though I must admit, Im particularly amused by the 'natural killer cell' story

someone in Canada who is taking a random collection of antiretrovirals at some arbitrarily chosen dose because she has been convinced by 'scientists' and administrators at the WPI, and their marketing, that the cause of her disease is XMRV

And the fact it is totally legal, apparently, for Annette Whittemore, Judy 'The Bartender' Mikovits, and the Whittemore Peterson institute to terrorize people with XMRV diagnoses (outside of a research setting, with no definitive proof of the virus or that it causes disease*) and support uncontrolled, unguided drug experimentation on these people (not really, though, **WIIIINK!!!**).
Its horrifying.

I have to agree with Acer2000 (post #15), that ERV goes out of her way to insult sick people and that has nothing to do with the science.

Bitch slapping may feel good, but it reflects on the person doing the slapping just as much as the person slapped. It also makes the person slapped less inclined to support your point of view or to listen.

Exactly. That's why I find it hard to give credence to what ERV says.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[ahimsa]

The issue that I have with erv's blog has nothing to do with the arguments and everything to do with the attitude and tone. I understand that people have widely varying views on the research that has been done regarding XMRV and ME/CFS. That's fine.

I have no problem with someone being skeptical of the XMRV connection to ME/CFS or being opposed to treating it with anti-retroviral drugs. I do have a problem with someone who refers to ME/CFS by the phrase "Chronic Fatigue", who does not seem to know even the basic case definition for CFS (any of them!), and who calls folks some pretty nasty names (e.g., she called Mikovits a c***).

The blog entries display an incredible immaturity in someone who is supposedly a grad student. If I were in a position to hire her I would decline based on the tone and style of what she has written on her blog even if I agreed with her arguments. Mature scientists can generally argue their point without having to use swear words and name calling.

In short, this erv person is not someone who is dispassionately analyzing the science. As someone else said, there must be some underlying issue that is bugging her (a "bee in her bonnet") but who knows what it is. At any rate, I would say that there's not much point in reading her blog and even less point in trying to have a discussion with her.

Better to let it go and ignore her. I won't even bother to click on any links - why give her blog more hits?

Just my two cents.

 

[acer2000]

In short, this erv person is not someone who is dispassionately analyzing the science.

Even if she was... she's not being factually accurate. She's just as guilty of bending the facts to get a rise as anyone she criticizes. For example: in comment 27 someone asks how - if XMRV doesn't exist - did the germans find it in BAL from 3% of healthy people and 10% of immunocompromised patients?

antibodies cannot be reproduce in reagents. How do you explain the recent 2-3 year German study?

http://www.cdc.gov/eid/content/16/6/1000.htm
Abstract
Xenotropic murine leukemia virus–related gammaretrovirus (XMRV) has been recently associated with prostate cancer and chronic fatigue syndrome. To identify nucleic acid sequences, we examined respiratory secretions by using PCR. XMRV-specific sequences were detected in 2%–3% of samples from 168 immunocompetent carriers and ≈10% of samples from 161 immunocompromised patients.

(snip)

ERV responds:

Im assuming English isnt your first language 'Sally', as your first 'sentence'-like creation makes no sense-- antibodies have nothing to do with the study you cite.

I 'explain' that study in one word: idiotic.

You have to tap your heels three times and throw salt over your shoulder to 'see' XMRV proviruses in PBMC. Virtually no one has anti-XMRV antibodies. No one can find free virus anywhere in 'XMRV infected' patients. But these folks looked for free virus in bronchoalveolar lavages. And 'found' it?

What the fuck?

I could see looking in saliva or something, maybe, but bronchoalveolar lavages?

Thats idiotic, and I dont believe any of their results. XMRV is in no way JSRV, and these people had no reason to believe it would behave like JSRV. And if it did, 40% of the population would be positive for 'XMRV acting like JSRV', not 3-4%, and CFSers would be dying of lung cancer, not complaining about a cadre of non-specific mehs.

So, again, I 'explain' that study as 'idiotic'.

So besides the over the top obnoxious tone, there are some issues with ERVs response. She is acting like she is certain that it is idiotic to look in Bronchoalveolar lavage for this virus. Well basically, I doubt that is the case. The Emory study where they infected monkeys and then looked in the tissue explicitly stated that they A) couldn't find it in the blood past about 1 week of infection, and B) that study showed that the infection indeed disseminated to the lung tissue. So it seems *totally reasonable* for someone to look in lung for this virus. Bronchoalveolar lavage gets at the lung and XMRV was found by Emory in the lung.

See: Organ and Cell Lineage Dissemination of XMRV in Rhesus Macaques during Acute and Chronic Infection

In fact, given the monkey model basically didn't find it in the blood, I think it would be great if someone looked in those other tissues as well. (GI, Lymph node, cervix, etc..) Perhaps thats where they will find the "free virus" that ERV claims nobody can find anywhere in XMRV infected patients. Well... they haven't looked anywhere but the blood - so you can't state that at this point.

 

[onebush]

I stopped reading aftger the first paragraph! We do not need to read this kind of crap!

 

[Forbin]

The best way to respond to erv...

[video=youtube;2h2ZixoCCWI]http://www.youtube.com/watch?v=2h2ZixoCCWI[/video]

 

[garcia]

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).

Elliot this was the same kind of argument that Wessely et al. used to justify their quick & dirty negative study on XMRV in CFS. "We are just trying to protect the patients". I have nothing against the argument per se. I have everything against the people making the argument though since they are the very people who choose to denigrate us at every turn, which makes me somewhat suspicious of their true motives to say the least.

Personally I get my health advice from the ME/CFS experts, not from failed psychiatrists and misanthropic bloggers with "mother issues".

 

[V99]

Kelly
Yea I couldn't remember who it was that had looked at ARV's & XMRV. There was the AZT study: Xenotropic murine leukemia virus-related virus is susceptible to AZT. Sakuma R, Sakuma T, Ohmine S, Silverman RH, Ikeda Y. http://www.ncbi.nlm.nih.gov/pubmed/19959199

However, note the wording, "If XMRV proves to be a causal factor in prostate cancer or CFS, these discoveries may allow for rational design of clinical trials."

No one has proven a casual connection between XMRV and any human disease at this point in time. That isn't a conspiracy, it is simply a fact at this time. Good science takes time and money.

I don't believe any one here has said that XMRV has been proven to be the cause, or even mentioned a conspiracy. However, it is obvious that the three negative studies have not cleared up the issue, and we need a replication study. After all patients aren't looking to be diagnosed incorrectly. Kelly you some it up in one line, good science takes time and money, unfortunately this is the problem throughout CFS research. Little money and little good science.

Enlighten her using peer reviewed research.

Usually that would be an excellent suggestion, but she's not interested. She started her attack because to her the science did not add up, she couldn't understand it. At that time it seemed she was only going after a small research institute. Then when much bigger names were used to show some of her arguments were illogical she took this attack to another level, kind of like a bully. The funny thing is that even now she finds it difficult to take on the bigger names in her blog.

gf1-- McClure is a kick ass lady.

Impish-- 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

She's confused.

I think it fair to say that if you want the freedom to express your opinion you have to give others the same right. Opinions are like belly buttons - everyone has one. If you disagree with ERV prove your point citing peer reviewed research. Bitch slapping may feel good, but it reflects on the person doing the slapping just as much as the person slapped. It also makes the person slapped less inclined to support your point of view or to listen. That's not just ERV that is human nature.

I don't think any one has said that she should be gagged, but when her mouth starts spouting hatred & bigotry it's not the same game any more. This is not about freedom of speech. After all she censor's many who try to cite peer viewed research.

 

[natasa778]

Personally I get my health advice from the ME/CFS experts, not from failed psychiatrists and misanthropic bloggers with "mother issues".

Amen.


Forbin thanks for that :tear::tear::tear:


To whoever posted the link first: please delete that link, having it here ups her rating in search engines

 

[floydguy]

That is anectdotal evidence Daffodil, but I'm glad it is helping you. I'm assuming you're being supervised by a doctor throughout this, yes?
And an excellent post Kelly As you said it's better to counter others opinions with facts and evidence, preferably scientific journals. It's a lot better than just going into blind fist throwing rhetoric which doesn't reflect well on the fist thrower!

I have to disagree with this sentiment. You are making a major assumption here that the world is a rational place. Most things get done based on passion or resolve, not on what comes out of the New England Journal of Medicine. I've spent a lot of time in politics and business and I can tell you that MOST things don't get done based on rational analysis. A pretty powerpoint based on emotion beats out a rambling ugly presentation almost every time (or something from a medical journal that most people have never heard of).

I have to admit I really don't understand people who are seem so "concerned" with what others are doing. Don't you have enough to worry about concerning your OWN health? Maybe you'd like to lay out your own treatment strategy so others can analyze it for cost, safety and effectiveness? Or are you okay with being ill - perhaps even afraid to be well again?

 

[usedtobeperkytina]

Don't mind the opinion, but my being a southern lady, I would think some respect and gracious words would bring more to her viewpoint. Her vernacular is just over the top, and unfounded allegations of unethical conduct does not lend credibility.

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

Tina

 

[Kelly]

I have to disagree with this sentiment. You are making a major assumption here that the world is a rational place. Most things get done based on passion or resolve, not on what comes out of the New England Journal of Medicine. I've spent a lot of time in politics and business and I can tell you that MOST things don't get done based on rational analysis. A pretty powerpoint based on emotion beats out a rambling ugly presentation almost every time (or something from a medical journal that most people have never heard of).

I have to admit I really don't understand people who are seem so "concerned" with what others are doing. Don't you have enough to worry about concerning your OWN health? Maybe you'd like to lay out your own treatment strategy so others can analyze it for cost, safety and effectiveness? Or are you okay with being ill - perhaps even afraid to be well again?

You are correct, the world is not a rational place - that would be the human factor and yes, passion drives science, but the scientific process like the journalistic process has strict protocols that when adhered to bring order and consistency to the process. Is the process perfect? No. Once again the human factor. But, as you know from your own area, when making an effective argument the best course is to use the "language" of the opponent. In this case not ERV's snarkiness - that is just rude and sophomoric - but rather the language of the peer reviewed scientific process.

 

[V99]

I understand what you are saying about journalism Kelly, but this is a forum, not a blog or newspaper.

 

[Elliot]

I have to admit I really don't understand people who are seem so "concerned" with what others are doing. Don't you have enough to worry about concerning your OWN health? Maybe you'd like to lay out your own treatment strategy so others can analyze it for cost, safety and effectiveness? Or are you okay with being ill - perhaps even afraid to be well again?

Compassion? Empathy? Concern for my fellow ME/CFS sufferers who are in a very dark place and reaching out to anything that could potentially make them better, whether that be from snake oil merchants or from unproven medicine. The side effects can be very serious, in regards to antiretrovirals and have no evidence yet that they'll stop XMRV; we don't even know that XMRV causes CFS yet!
It's nice that you're insinuating I would like to remain ill, yes of course. ME/CFS is a breeze and watching my health deteriorate is hilariously exhilerating along with watching my family's horrored faces fills me with the utmost glee. But taking antiretrovirals that have not a shred of evidence they could help but could give me serious side effects making my ME even WORSE, is rational of course.

Also N'thing what Kelly said ^

Can't people have a discussion without 'shouting down' rhetoric? I'm getting quite fed up with it to be honest. You question or try and think critically and you are accused of not having me/cfs or not wanting to get better. There is a gray area, a veritable mid-point to debates and discussion, perhaps you should learn that in future.
And as I have said before, whilst I don't agree with it, I hope the antiretrovirals work for any of you who are taking it and you see your illness improve or even go completely!