Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

You can view the page at http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives

 

Cort deviates even from this principle (all arguments have equal merit) when it comes to both Judy Mikovits (and to a lesser degree, the WPI) and to the CAA. I have never once read anything where he questioned the actions, and by extension, the credibility of the CAA.

SIMPLY NOT TRUE. You either haven't read many of his posts, or you aren't being very "objective".

I am personally deeply offended by the attacks on Judy Mikovits's PR skills on this site. To me, this stinks of sexism, though I am sure this was not the intention. This is because there are thousands of examples of male scientific geniuses out there who have been tolerated for poor social graces. However when it comes to women it is a constant theme.

This is laughable. Wessley, Reeves, Teitlebaum, etc., are constantly 'attacked' on these forums, especially their 'PR skills", and Cort frequently has been a part of these discussions.

 

Thanks again for the article Cort and for taking input.

and Oceanblue pointed out that the Alter group reported they only tested the CDC findings for XMRV - something I had missed - and opened up something important - all of those ended up in changes to the paper.

Did you miss this?

I wrote to Dr. Lo to ask him whether they just tested for XMRV or also MLVs i.e. about answer 10 at: http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm

Additionally, the CDC laboratory provided 82 samples from their published negative study to FDA, who tested the samples blindly. Initial analysis shows that the FDA test results are generally consistent with CDC, with no XMRV-positive results in the CFS samples CDC provided (34 samples were tested, 31 were negative, 3 were indeterminate)

He said:

The primer sets we used for studying CDC samples were the same ones published in our paper. The primer sets should amplify both XMRV and MLV-related virus gene sequences we identified in our PNAS study.

 

Are you sure about this, Recovery Soon? All I have read is Cort saying he has recovered his health using LP and Amygdala training. Why? Ielieve it it is to further his own personal interests, including protecting his sworn ally, CFIDS Assn of America, from being deposed as King of the Hill among the community of people with CFS and to ensure the income of his buddies who are employed by the CFIDS Assn of America. What income does Cort make from his "advocacy" for people with CFS? Ask real questions and you might get real answers.

Where did I say I recovered my health using Amygdala???? I wish to God it was true I truely do. I've never even tried LP. Unfortunately while my quality of life is better my ability to exercise has changed only a little, I am still sleeping in my car because I cannot tolerate the apartment or even the balcony and much remains to be done.

What do I make? Phoenix Rising is now a non-profit and you'll be able to see what it brings in. I anticipate my salary will be about $600 a month. I could do far better at McDonalds.

 

....

I take the liberty of reposting the things that I am not happy about in the article.

Cort, I humbly suggest you change the name of your piece from
"Article: Four Viruses? The Alter XMRV Paper Arrives"
to
"Article: XMRV - like HIV and HTLV, a member of a larger family"
or something similar. The existing title is misleading.

...

Also, his inference that there are "four viruses" is just wrong. XMRV is a variant MLV. He apparently doesn't get that, or doesn't want to stop trying to make out the XMRV variant isn't important.

....

From IACFS/ME Newsletter Volume 3, Issue 1 April 2010.

Dr. Mikovits said in answer to a question:

"""""""""""""""""""""""""""""""""""""""""""""""
.....

The 6 full length XMRV clones: 3 from prostate cancer tissue biopsies from men in Cleveland and 3 from
leukocytes from female CFS patients in the Western United States drawn in 2006-2008 were 99% similar.
We did not despite repeated attempts isolate ANY other variants from those individuals
suggesting that the virus is very low replicating and unlike HIV does not have quasi species.

....
"""""""""""""""""""""""""""""""""""""""""""""""

 

It is precisely because the blog is negative that I have spoken out:

It’s possible but hardly likely that both findings are correct. If retroviruses are usually found in’ swarms’ even within the same person’s body then it seems more likely that both groups are missing part of the swarm. Dr. Alter reported, in fact, that WPI researchers were finding more variation over time.

Myra McClure says the same thing, that it's different. If this were a real issue Milovits would not now be co-charing the international conference. It is negative speculation and misinterpretation. And it is what the psych lobby do. I can't change that but I know a man who can.

We are meant to be happy after the Alter paper it's great news. Alter tells us it confirms Lombardi et al. He says the WPI study was better. We do not need to have spin, like the Chicago Tribune food writer spouts from a fellow patient.

You missed my point in fact you missed an entire sentence; ie 'both groups are missing part of the swarm'- is that incorrect?. I'm trying to say two things - both are right and both are wrong....I'm not saying the WPI is wrong about XMRV - I meant to say that the WPI missed the MLV's (as it turns they haven't - they just didn't report on them, but they are in their patent application) and that the Alter group missed XMRV...

I'm not saying XMRV is not there! There are magnitudes more evidence for XMRV being there than the MLV's. they were able to grow it, find antibodies to it, etc - as I pointed out in my paper. You have negative interpretations of alot of statements - that I had never thought of.

You can't help but be divisive can you? - Hence the comment comparing me to Trish Tsoudero's. I end up gnashing my teeth over the innuendo's that pepper your posts. I/m trying to work with you - I have altered parts of the paper to assist you and I'm put in the same box as Myra McClure and Trish Tsouderos! Nice!

 

you are welcome look for Cort's pervasive attacks on Judy's PR skills, his clear favoratism of Racy opinion over hers in his interview with them both and his exuberant reposting of Trine's article yourself.

You are also welcome to search yourself, though I am sure it will be in vain, for a single instance where he has provided a real critical analysis of the activities and methods of the CAA.

I refer you to post 237

Precisely. Neither of these examples qualify as Sexism by ANY stretch. They are differences of opinion, and you are labeling them as something sinister. So sinister, they can only be detected by you.

Please.

 

I am reposting my original comments:


On True Objectivity, and the Need for Clarity

I appreciate very very much the quality and tone of the latest points made here by Parvofighter and RustyJ.

Getting things right is extremely important. In bringing up the things I am about to bring up, it is not my intention to slander or to attack Cort, but merely to point out why some people have become extrmely frustrated with his reporting style:

Cort seems to often share an attitude that has become increasingly common in journalism, which is that emphasizing controversy is good, and that all sides of an argument have equal merit. This attitude is a distortion of the original idea of objectivity. I say distortion, because objectivity, originally, was about looking with clear eyes at the facts. When one does this, it usually very quickly becomes apparent that not all arguments in fact have equal merit. Looking objectively means not just looking at what people are saying, but at why they are saying it, and what their history and credibility is on the issue. It means distinguishing off the cuff, ill informed remarks, from those that are straight from the source, rooted in direct experience, and/or based on a high investment of time and understanding. It also means consulting a diversity of sources rather then relying on those with which one is comfortable and friendly.

Cort deviates even from this principle (all arguments have equal merit) when it comes to both Judy Mikovits (and to a lesser degree, the WPI) and to the CAA. I have never once read anything where he questioned the actions, and by extension, the credibility of the CAA. In the case of the CAA and Dr. Vernon, whenever anyone puts forward a criticism, Cort is quick to jump in to defend, and when no solid argument at all exists for what he says, he is very quick to point out that we do not know what is going on behind the scenes. We do not know everything these people are doing to help us and all of the flak they are dealing with. Fair enough, we do not.

However when it comes to Mikovits, he does not extend the same courtesy. There also we do not know what is going on behind the scenes. There also, we do not know all of the crap they are dealing with. Instead of accepting that he does not fully understand why the WPI approaches things the way they do, he never misses an opportunity to question their credibility. I am personally deeply offended by the attacks on Judy Mikovits's PR skills on this site. To me, this stinks of sexism, though I am sure this was not the intention. This is because there are thousands of examples of male scientific geniuses out there who have been tolerated for poor social graces. However when it comes to women it is a constant theme. If we can't attack the actual work, we attack the way they present it. And as soon as there is the slightest hint there might be a problem with the actual work we pounce gleefully.

If Cort wants to convince me that he has no bias, then he will have to either start extending the same benefit of the doubt to Judy Mikovits that he extends to the CAA, or, he will have to start asking real, critical questions about what the CAA does, how they do it, and why.

Finally, as for the accusation that he deliberately obscures things - I am not entirely sure it is deliberate, but he does certainly obscure. I remember I once spent many hours doing some careful revisions to the Wiki here. I had created a questionaire format that would have gone a long way to help us understand people's symptoms, their treatments, and why they worked for some and not for others. If used, this questionaire might have helped us distingush between different sub-types of ME/CFS. By doing that it might have helped us understand what treatments work for who. But, when I came back the next day, he had deleted it all and replaced it with a vague list, that, once again was based on the premise "gosh this stuff is so complex, how can we ever really make sense of it all!" This is just one example.

I would therefore, like to reiterate a point made by a few here; that patients come here for information, yes, but they could also really really use some clarity. Cort does well on the first - he provides lots of information, however his record on the second point, clarity, is not that great. I hope a sincere effort will be made to improve in this area.

 

1. The beginning of this thread made it perfectly clear that many people here fully support Cort. This does not change the fact that some do not.

2. When people tried to set Cort straight on some important details, something they have tried to do many many times before (and as it has fallen on deaf ears they have become frustrated) they were attacked for daring to criticize him, and for their tone, which, given the history, is actually understandable, if not exactly tactful.

3. Everything is great at the other forum. I have come back to try to get an important activism project going.

4. While back, I have felt compelled to try to counter certain pieces of disinformation. My post, which I invite you to actually read, is a clear and very polite articulation of a set of serious issues. I think it offers a good explanation, if people actually care to read, of why people are frustrated.

"They" were not attacked for "daring to criticize him", it was the tone and manner in which that criticism was presented.

Regarding the other forum, and well, with all due respect, that's not the street talk. I applaud your efforts re "Project Enough", and wish you well on it.

I read your post, see my reply. (It would be helpful if you would mention the post #, so that others can find it if they choose to.)

 

I am reposting my original comments:


On True Objectivity, and the Need for Clarity

I appreciate very very much the quality and tone of the latest points made here by Parvofighter and RustyJ.

Getting things right is extremely important. In bringing up the things I am about to bring up, it is not my intention to slander or to attack Cort, but merely to point out why some people have become extrmely frustrated with his reporting style:

Cort seems to often share an attitude that has become increasingly common in journalism, which is that emphasizing controversy is good, and that all sides of an argument have equal merit. This attitude is a distortion of the original idea of objectivity. I say distortion, because objectivity, originally, was about looking with clear eyes at the facts. When one does this, it usually very quickly becomes apparent that not all arguments in fact have equal merit. Looking objectively means not just looking at what people are saying, but at why they are saying it, and what their history and credibility is on the issue. It means distinguishing off the cuff, ill informed remarks, from those that are straight from the source, rooted in direct experience, and/or based on a high investment of time and understanding. It also means consulting a diversity of sources rather then relying on those with which one is comfortable and friendly.

Cort deviates even from this principle (all arguments have equal merit) when it comes to both Judy Mikovits (and to a lesser degree, the WPI) and to the CAA. I have never once read anything where he questioned the actions, and by extension, the credibility of the CAA. In the case of the CAA and Dr. Vernon, whenever anyone puts forward a criticism, Cort is quick to jump in to defend, and when no solid argument at all exists for what he says, he is very quick to point out that we do not know what is going on behind the scenes. We do not know everything these people are doing to help us and all of the flak they are dealing with. Fair enough, we do not.

However when it comes to Mikovits, he does not extend the same courtesy. There also we do not know what is going on behind the scenes. There also, we do not know all of the crap they are dealing with. Instead of accepting that he does not fully understand why the WPI approaches things the way they do, he never misses an opportunity to question their credibility. I am personally deeply offended by the attacks on Judy Mikovits's PR skills on this site. To me, this stinks of sexism, though I am sure this was not the intention. This is because there are thousands of examples of male scientific geniuses out there who have been tolerated for poor social graces. However when it comes to women it is a constant theme. If we can't attack the actual work, we attack the way they present it. And as soon as there is the slightest hint there might be a problem with the actual work we pounce gleefully.

If Cort wants to convince me that he has no bias, then he will have to either start extending the same benefit of the doubt to Judy Mikovits that he extends to the CAA, or, he will have to start asking real, critical questions about what the CAA does, how they do it, and why.

Finally, as for the accusation that he deliberately obscures things - I am not entirely sure it is deliberate, but he does certainly obscure. I remember I once spent many hours doing some careful revisions to the Wiki here. I had created a questionaire format that would have gone a long way to help us understand people's symptoms, their treatments, and why they worked for some and not for others. If used, this questionaire might have helped us distingush between different sub-types of ME/CFS. By doing that it might have helped us understand what treatments work for who. But, when I came back the next day, he had deleted it all and replaced it with a vague list, that, once again was based on the premise "gosh this stuff is so complex, how can we ever really make sense of it all!" This is just one example.

I would therefore, like to reiterate a point made by a few here; that patients come here for information, yes, but they could also really really use some clarity. Cort does well on the first - he provides lots of information, however his record on the second point, clarity, is not that great. I hope a sincere effort will be made to improve in this area.

Lots of words. Still no evidence of Sexism.

 

Tone

From: The Holt Guide To English:

Concerning the writer: CONTROL OF TONE AND FEELING. Does the unrestrained expression of feeling achieve its purpose or boomerang upon the writer? Does the channeling of feeling necessariy work against sincerity of tone? pg. 163

ADVICE Control the tone of writing so that a worthwhile idea has its full effect. pg.166

IMO, Excellent use of tone and some of the most persuasive writers on the PR forum:

Dolphin: Journalists sometimes get things wrong particularly about science - it is not like a peer reviewed article where one may take weeks to write it. It doesn't mean we should stop them writing. Cort has comment facilities at the bottom if people think there are mistakes. I think his articles are useful. If people think they can do better than Cort, they are welcome to write pieces.

CBS: ETA: If I were looking for ammunition to support my presumption that CFS patients have emotional issues, I'd find a lot more ammunition in the vitriol of some posters than I would ever find in anything that Cort has ever written. Note to anyone from the psych lobby reading this - V99 DOES NOT REPRESENT ME - I'm more like Cort (or at least I'd like to think I am)!

Wayne: Yes, I'm quite sure Cort can take care of himself. But there's a lot of people who are affected by the needless negativity. Some of us finally decided to speak out using some pretty diplomatic language.

Cort: I was happy to make all of those mostly small changes - and it seemed to me that the Forum was doing it job - it was analyzing the paper, finding flaws and we were correcting them. We were acting as a community. With V99 it was a different world indeed.

Dannybex: The majority who have chosen to stay at Phoenix Rising clearly don't share your biased opinion. If your group is going so well -- then why have you voluntarily chosen to come back here?

 

So, what you are saying Dannybex is that, because I have attempted to explain here why people are frustrated with Cort I am biased? Wow.

 

No AWOL, you're putting words in my mouth. You're accusing Cort of being biased, but can't see the bias in your own posts.

 

I have offered a clear explanation of people's frustration. That is not bias, it is explanation.

 

I have offered a clear explanation of people's frustration. That is not bias, it is explanation.

Accusing someone of Sexism because you disagree with their opinion is very much bias.

 

Accusing someone of Sexism because you disagree with their opinion is very much bias.

I have already responded to this. I suggest you read more carefully.

 

I take the liberty of reposting the things that I am not happy about in the article.

Cort, I humbly suggest you change the name of your piece from
"Article: Four Viruses? The Alter XMRV Paper Arrives"
to
"Article: XMRV - like HIV and HTLV, a member of a larger family"
or something similar. The existing title is misleading.

Request not accepted. It was a catchy title and it reflected the very surprising finding of more viruses. Don't read too much into it.

The article is full of errors that anyone who just read the studies and repeated what they said would not make...unless they had an ax to grind or a spin to spin. Cort has a history of subtly spinning valid information to make it seem to say something else.

Please point out the error. If you're subtly spin valid information to make it say something else please point out where I did so. I would suggest that your 'spinning' is my interpretation. Spinning is really derogratory term. This is open field with lots of possible interpretations.....

One example is his contention that FDA said it was cohort, not method, that would account for CDC not being able to find XMRV.

Here's the statement in my paper

It suggested that methods in sample preparation may play a role and provided data indicating that the CDC and NIH cohorts may have been different.

I did report that that they reported that 'methods in sample preparation" (whatever that refers to) and I said they provided data indicating the two cohorts were different.

In fact, the FDA article specifically says that "Undefined difference in the methods of sample preparation (remember Vernon mentioned the chemical in the tubes they used for blood collection was inappropriate for viruses?) could be contributing to the discordant test results."
http://www.fda.gov/BiologicsBloodVac.../ucm223232.htm

Since its in the paper, twice actually - here's the second part

The other factor the FDA response cited was differences in sample preparation. Since that's all they stated its difficult to know what they were referring to. The Alter/Lo group found that testing plasma cut their positive rates in half compared to whole blood. The CDC used plasma - but so did the WPI in the original Science paper - and they, of course, had results similar to the Alter/Lo study. The FDA response did not, interestingly, suggest that they believed other problems with methodology played a role. However, the Alter/Lo paper discussed primer problems which may be similar to those Dr. Mikovits referred to in her video.

What problem do you have with that?

He once again, tries to make out that WPI didn't do what they did, or that it isn't as important as it is, while speaking out of the other side of his mouth and damning them with faint praise. Mikovits has been quoted all over the web as saying that they have been finding these other variants of MLVs, so his inference that they didn't find them is just spinmeistering and subtle slamming.

Please, I haven't seen those quotes at all and I imagine they only occurred recently.....I have been in touch with Dr. Mikovits - I emailed her - she did inform me of that. I'm waiting on her review of my updated paper.

Also, his inference that there are "four viruses" is just wrong. XMRV is a variant MLV. He apparently doesn't get that, or doesn't want to stop trying to make out the XMRV variant isn't important.

Who said XMRV isn't important? I refer you to this in the paper.

What is going with XMRV itself is not as important as it was before the Alter paper but it is still an unresolved question. Dr. Alter was quick to point out that the WPI initial findings and the overlapping evidence they presented were still far beyond what any other group had accomplished. Not only did they find the virus but they cultured it (Dr. Lo is working on that now), showed it could infect other cells and demonstrated an immune response had formed to it.

I stand by the comment that XMRV does loom as large now that Alter has uncovered a group of other closely related viruses. How could it? Now there are five viruses, if I have the number right.

Dr. Alter referred to them as viruses altho the paper usually calls them 'viral sequences' which is accurate: from his paper in the abstract:

We identified a genetically diverse group of MLV-related viruses

He emphasizes the murk and ignores the light in this research. He continually emphasizes how hard it is to know anything about this illness. His vested interest is in keeping it mysterious and murky, even if he had to help provide the mud with which to muddy the wa

How would you know anything about what my 'vested' interest is? (And why would I have that one?)

His frequent mention of contamination is another tactic of the denialists. He then goes on to say how it has been essentially disproven, but he keeps on mentioning it, bringing it back into play, thus keeping it alive. But I doubt that is why WPI will correct him. It probably has to do with his misquoting the FDA article and his inference that WPI hasn't got a clue when it comes to the MLVs that Alter/Lo/Komaroff found.

Jeez.......Actually its a tactic of someone trying to report all the news.


Harvey Alter and Shyh-Ching Lo both stated in the telebriefing that their work confirmed the work of the WPI. The opposite conclusion could be conferred from the existing article. That is inaccurate, and needs to be changed.

We believed that the findings would validate the WPI's results and, proving, once again that nothing is easy in chronic fatigue syndrome, they both did and they didn't. They did in the most important sense; the Alter/Lo study (Lo was the principal investigator) confirmed the major finding of the original Science paper- that retroviruses are highly prevalent in people with CFS and are found in much lower levels of the general population. After all the zeros and null findings of the previous studies, the Alter findings were remarkably consistent with the WPI's original findings (86% of CFS patients vs 68% and 7% of controls vs 4%). The fact that two accomplished researchers using their own samples and their own techniques duplicated the finding of mouse retroviruses in chronic fatigue syndrome was enormously beneficial.

Are you saying the Alter paper findings validated the presence of XMRV in CFS? Do you have a quote from Alter of that sort? I'm sorry but since they couldn't find XMRV they didn't do that. In all other respects they did support the WPI's findings and as I noted in the article it simply seemed a matter of both labs continuing to refine their techniques.

 

I have already responded to this. I suggest you read more carefully.

I read very carefully. You hedged your comments with the pervasive subtlety argument and provided examples which failed to demonstrate Sexism.

Still not holding water.

 

Enough of this nonsense.

Awol and v99, you have just wasted everybody's time - including your own - with a load of illogical arguments, unfounded allegations, and belittling of Cort and his blog. That is all.

There is absolutely no reason why Cort should tolerate this, or waste his time on it. Other people on this thread have made significant improvements to Cort's article, neither of you have offered anything of the sort. You are free to post alternative text - the text that you critics would have written - but typically of the critic you decline to offer an alternative.

Your behaviour on this thread would not be acceptable against any forum member and it should not be acceptable against Cort.

 

Enough of this nonsense.

Awol and v99, you have just wasted everybody's time - including your own - with a load of illogical arguments, unfounded allegations, and belittling of Cort and his blog. That is all.

There is absolutely no reason why Cort should tolerate this, or waste his time on it. Other people on this thread have made significant improvements to Cort's article, neither of you have offered anything of the sort. You are free to post alternative text - the text that you critics would have written - but typically of the critic you decline to offer an alternative.

Your behaviour on this thread would not be acceptable against any forum member and it should not be acceptable against Cort.

Wow again. Given the politeness of everything I said, which was, originally, simply an attempt to explain people's very real frustration, I find this comment quite amazing.

 

Knowing as I do, some of the history of all of this, I think it is important to note that this "vitriol" did not come out of nowhere. It is the result of the repeated experience of having facts used selectively and sometimes ignored. This tends to result in incredulity and frustration.

This reminds me of an old aspirin commercial -- "I know you've got a headache, but don't take it out on me!"

There's a lot of frustration and anger over how ME/CFS patients have been treated over the years, especially in the UK. But the anger needs to be directed at those who have done the damage, not those who are trying to help. When we act like injured animals, lashing out at everything and everyone -- including those trying to help -- we just play into the psych lobby's hands.

Sure, helping each other by courteously pointing out factual errors in posts is important, but taking allies out at the knees because they're not perfect is completely unnecessary.

Additionally, many of the complaints in this thread are matters of interpretation, not fact. Either the complainer doesn't like Cort's interpretation (and he's as much entitled to his own interpretation as anyone else) or they don't like their own interpretation of Cort's words -- which is their problem, not Cort's.

If factual - not interpretational - errors are pointed out civilly and with appropriate substantiation, I believe Cort would correct those factual errors, as he has done in the past.

If someone doesn't like Cort's interpretations, they should avoid reading his articles. He's entitled to his opinion even if other people don't like it.

A number of people here seem to have a distinct dislike of Cort's interpretations and opinions. I suggest that rather that beating up Cort because of his opinions, those people start their own website and write their own articles. If their website is more factual and contains interpretations and opinions other people find useful and valuable, then there will be many people visiting that website and getting the "right" information there. Easy.