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

 

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.

GHK, I'll leave the "pleasure" of answering your question about how much money he makes through this site to Cort, himself, but I can say with the utmost confidence that Cort is not in this for the money and that your suggestion to "follow the money" shows just how poor a judge of character you are. I strongly suspect your world view of everyone having an ulterior motive is going to take quite a blow. Have a seat.

 

How can we help Cort make this a better forum?
Now for the practical considerations: Cort, HOW do you want people to bring up factual errors? Would it be helpful if people took the time to rewrite a contested segment? Or do you just want a succinct bullet list detailing the error that you can wordsmith? Do you want the first comments through PM's? Will you respond to them? What are some tangible ways that members can make it easier for you to be willing to address errors? What are some tangible ways that we can make it easier for you to incorporate edits when factual errors are identified? Would it be helpful to have a "how you can help me" segment in Nuts and Bolts? Other than the obvious issue of addressing tone on both sides, is there something that would make this process of continuous improvement happen more swiftly and easily, so that seriously ill patients giving feedback aren't also burned out by the process?

Bottom line, the issue of how - or whether - factual errors are acknowledged and corrected is not something that is likely to disappear. Until Cort and the forum come to some understanding of "what works", and how best to do this, we will just keep spinning wheels.

Any other constructive ideas on how to move this beast forward?

Parvo,

This is an excellent suggestion. And a refreshing redirection of this thread. Maybe small teams of members could collaborate with Cort on an article and provide help with research as well as an array of perspectives before an article in published.

 

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.

 

If this community can't get facts right, who will?
As this forum grows, I would echo Rusty's sentiment that the burden of responsibility for accuracy increases on ALL forums. Does that mean that articles should be pristine at first posting? Absolutely not, and correction of facts has nothing to do with whether we appreciate the article in the first place. However when factual errors are pointed out, I would hope there is more of a thirst for being right, than for being perceived to be right.



Any other constructive ideas on how to move this beast forward?

Naturally, being the kind of person I am, there are a couple of things I'd change.
True, but only if you use artificial positive samples. A fundamental finding of the Lo/Alter study is that the virus you find in infected people is different, and it keeps changing over time.

I think you mixed up the business of integrating viral genes into nuclear DNA with integration into germline DNA, something much rarer. Curiously, no one has yet mentioned the possibility this virus might infect mitochondria, possibly bypassing the nucleus.

I agree that we do not know if Katz was referring to 'live' or spiked samples. It could very well be that he was referring to testing the ability of the different labs to find XMRV in spiked samples. I imagine he was actually.

You're right - I did mix those up; in fact I didn't even know there was a distinction between two . I fixed it.

Some people can discuss the facts without the vitriol

 

Parvo,

This is an excellent suggestion. And a refreshing redirection of this thread. Maybe small teams of members could collaborate with Cort on an article and provide help with research as well as an array of perspectives before an article in published.

I think this could be problematic, perhaps devaluing Cort's efforts and adding considerably to his workload. If there are factual errors (and I don't think this happens often) then simply checking with the source(s) would help limit this problem, - as any journalist should. I believe Andrea made this point.

I really don't have a problem with articles written from a unique perspective, providing the facts are correct. I do have a problem with how dissent or negative comments are received. Perhaps this is where our attention should be directed.

Instead of diving in to shore up loyalties, I would prefer it if people used the means already available. For example, Cort, who is well able to defend himself, has several methods of dealing with a poster's ire available to him. He can:

• Debate the facts of the issue without use of inflammatory language - which he nearly always does, and excels at.
• Send a PM to the person involved to try to resolve the issue, away from public scrutiny (advice someone on this site once gave me)
• Or as administrator take more permanent action

I think these are the sorts of things we should all be doing (other than the last point, that is).

Someone in this thread said something along the lines of... the facts are lost if the manner of delivery is abusive. My apologies if I have misinterpreted this. In response I would say, what sort of person ignores the facts being presented, irrespective of the manner of their delivery?

 

I know it's been quoted before, but Parvo's point deserves serious consideration by Cort particularly

How can we help Cort make this a better forum?
Now for the practical considerations: Cort, HOW do you want people to bring up factual errors? Would it be helpful if people took the time to rewrite a contested segment? Or do you just want a succinct bullet list detailing the error that you can wordsmith? Do you want the first comments through PM's? Will you respond to them? What are some tangible ways that members can make it easier for you to be willing to address errors? What are some tangible ways that we can make it easier for you to incorporate edits when factual errors are identified? Would it be helpful to have a "how you can help me" segment in Nuts and Bolts? Other than the obvious issue of addressing tone on both sides, is there something that would make this process of continuous improvement happen more swiftly and easily, so that seriously ill patients giving feedback aren't also burned out by the process?

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.

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 your existing article. That is inaccurate, and needs to be changed.

audio links to the telebriefing

Part 1: http://www.mediafire.com/?6phy8fyxxj4mhy9
Part 2: http://www.mediafire.com/?40esxfnjflnyzhz

 

Some people can discuss the facts without the vitriol

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.

 

If all the energy that goes into beating up our allies (fallible as they may be) were instead directed at fighting the UK psych lobby, we would all benefit immensely.

I agree with that. Very few letters to the editor are written (except for BMJ articles).

 

I agree with that. Very few letters to the editor are written (except for BMJ articles).

I would also put forward a vote for more energy put into countering the influence of our enemies. Project ENOUGH!!! was designed to help make sure small efforts turn into productive action by developping letters and information sources together.

 

With great power comes great responsibility.... another quote "To Whom Much is Given, Much is Required"... ... same idea.

This is absolutely true. Best to get your facts straight. If in doubt, have others fact check for you.

Too many lives are at stake to fail to check facts. To many have already suffered too much.

This would very much slow things down. Many people also want timely information. I was much more interested in reading Cort's piece on Tues/Wed than I would be if it came out at the weekend by which time I might have had my fill.

 

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.

I don't like that the word sexism has been brought into the discussion. Are we supposed to go around analysing everyone to see if they have so-called "sexist thoughts". Sounds like 1984. This sort of mud-slinging restricts freedom of expression. A little less focus on "ad hominem" attacks and a little more focus on issues would be good.

 

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.

I think that needed to be said.

 

Instead of diving in to shore up loyalties, I would prefer it if people used the means already available. For example, Cort, who is well able to defend himself

Who said it was anything about shoring up loyalties.

When I was healthy, I wouldn't like to see somebody get kicked or whatever. I'd wanted to speak up. This is similar.

There is a way to make corrections that focuses less on individuals and more on the facts.

Many of us get agitated quite easily with this illness so I don't think unnecessary aggressiveness should be encouraged.

 

I would also put forward a vote for more energy put into countering the influence of our enemies. Project ENOUGH!!! was designed to help make sure small efforts turn into productive action by developping letters and information sources together.

Yes, it is good. Hopefully it will lead to something. No letters so far but hopefully some will get there. I just read yesterday another of my letters was accepted. But I'm not going to take the lead with letters on project enough as I have a means to write letters by myself with the input of a couple of others (both forum members in fact - I won't name them without permission as don't want to overcommit them). But I am quite willing (as able) to help others.

ETA: there was Gerwyn's comment to retrovirology which was a good team effort. Comments don't have the same status of letters to the editor e.g. they won't show up in PubMed, but more comments would certainly be good.

 

I don't like that the word sexism has been brought into the discussion. Are we supposed to go around analysing everyone to see if they have so-called "sexist thoughts". Sounds like 1984. This sort of mud-slinging restricts freedom of expression. A little less focus on "ad hominem" attacks and a little more focus on issues would be good.

I clearly said I did not think sexism was the intention. I was explaining why I have a problem with his treatment of Mikovits. To me, this treatment echoes my direct experience of sexism, which, though it may indeed sound 1984, has not gone away and is on the rise. Anyway, I digress.

It is the pattern of behaviour in which one engages when one WANTS someone to fail that is what is important here, not the sexism example exactly, since obviously, Vernon and McCleary are both women and he defends them vigorously.

 

I clearly said I did not think sexism was the intention.

Does it matter? Once you say somebody is sexist, whether it is their intention or not, the (thought) "crime" is similar.

 

Does it matter? Once you say somebody is sexist, whether it is their intention or not, the (thought) "crime" is similar.

We live in a world in which sexism is deeply imbedded and is in fact quite difficult to avoid. We are all guilty of it from time to time, even those of us who have directly and severely suffered from it. I would therefore not take it as a "crime" but rather a tendency that we need to be highly aware of to avoid. I realize that for people who were adults in the 80's the declaration that something exhibits sexist traits might take on a different, more glaring and offensive tone than it does for my generation, but now, in the world today, it is possible to say that something someone does follows a sexist pattern without declaring that person to be irredeemably and offensively sexist overall.

 

Well I think saying somebody is being sexist can inhibit free discussion (in this case whether people think JM has done everything as we think is optimal). And is a form of ad hominem attack.
I don't think Cort or others should have to spend his time defending himself from such an ill-defined charge.
Reminds me a bit of McCarthyism - are you a red?

 

Well I think saying somebody is being sexist can inhibit free discussion. And is a form of ad hominem attack.
I don't think Cort should have to spend his time defending himself from such an ill-defined charge.

Ok, possibly. But I stand by it nonetheless. I can not, for the life of me, figure out why Cort is attacking a brilliant scientist who has done nothing but try to help our community, for her PR skills. PR? Doing great science is not enough? She has to be an expert in PR??? I have never ever in my life heard such a thing said about obviously socially impaired male scientists.

 

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.

Good morning GHK That was worth the wait. You're sort of rambling nonspecifically- But, let's start with your conspiratorial insinuation. While you deflect the onus on me to ask questions and get "real answers", without seeming to have any "real answers" yourself, you fail to form the basis of any legitimate position whatsoever to attack anyone from. This is generally the case with conspiracy theories- They're easy bombs to throw out- But not so easy to defend. "Ask real questions" is another way of saying: "I have no idea but I"ll deflect my own question to you with a sinister undertone to make it sound like I know something." After hearing your answer, it's pretty clear you don't.

More specifically, you make the point of Lightening Process and Amygdala Retraining. Cort has "regained his health?" Really? I believe he found some benefit in the Gupta program. You may not realize it, but there actually is mind-body connection, and doing things like meditation can offer some benefit to pain sufferers. I did the Gupta Program myself, and while it was obviously very far from a cure (or I wouldn't be here), it helped recommit me to my meditation practice, which is better than any supplements I've used so far. THAT DOESN"T MEAN I'M IN THE TANK FOR THE "PSYCH LOBBY." It means I"m open-minded and use common sense.

And while we're on that topic- Let me be controversial for a minute. The people who see the Psych Lobby at work in everyone, everything, and every single statement, and never cease to mention them in every single post, regardless of the subject matter, are themselves the Best Ally the Psych Lobby could ever ask for. Why, you ask? BECAUSE YOU LOOK CRAZY. Yes, the Psych Lobby is very damaging. Yes, they need to be defeated through science. Eventually they will be. But to come across as completely unnerved, ranting with every post EMPOWERS THEM. Ranting at someone who calls you crazy makes their point. That's Psych 101. Here's a role model- Annette Whittemore. Imagine her getting up at the WPI podium with her hair messed, yelling into the microphone "The Psych Lobby is Coming!!!! THe Psych Lobby is Coming!!!" There's a better way to handle it. (I know things are worse in the UK- I get it, please don't fill me in, I already know). It's just something to consider.

As for Cort's financial gain- Again, you are out of your depth. If he was earning revenue from this site, he would be doing so regardless of his point of view, so that's not an argument for or against. Unless, you are suggesting that he is receiving kickbacks, BRIBES, from Gupta, Lightening Process, CFIDS Assn, etc... Is that your position? This is all an elaborate ruse funded by an evil conglomeration of agencies with Cort as their Proxy?

I'm asking real questions here. Please give me some answers, GHK. (and be specific)

it is possible to say that something someone does follows a sexist pattern without declaring that person to be irredeemably and offensively sexist overall.

Actually- that's like saying someone follows a racist pattern, but isn't a racist. The mud sticks, and then falls on the accused to defend. Probably better to hold back on statements like that unless your 110% sure. It doesn't sound like you are.

Instead of diving in to shore up loyalties, I would prefer it if people used the means already available. For example, Cort, who is well able to defend himself, has several methods of dealing with a poster's ire

So does V99- who you're defending. So your point is?

This is not about shoring up loyalties. I don't know Cort from a hole in the world. But I know 2 years ago I had no place to go, other than my Doctor, to get up to speed on the issues of the day. And because of his massive efforts I now have a place to learn, and interact, which is quickly growing into a powerhouse of grassroots advocacy. So, I'm kind of willing to give him the benefit of the doubt on some errors.

Watching him get venomously attacked- not just errors pointed out (which is completely appropriate), but having his actual motives questioned, by someone who hasn't contributed anything other than emotionally charged opinions, is likely to garner some responses.

I don't think that qualifies as "Shoring up Loyalties."

And yes...I am still waiting for V99's article with baited breath.