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

 

Hi, Cort.

I just want to express my gratitude to you for hanging in there and maintaining this forum. Anyone who does what you are doing is bound to get some flak now and then, and you have certainly gotten your share! But what you are doing is maintaining a community, and that is very beneficial and important. I would compare it to the people at the stock exchange who establish and maintain markets for stocks. They do what needs to be done to keep a unified market going. Here, we are dealing in the marketplace of ideas, and to keep it going, we need a convener, just as the stock market does. You are that guy here, and I for one appreciate very much what you are doing.

Rich

 

Enough of this nonsense.

Hi Mark,

That's exactly what I've been thinking since I first checked in this morning. I just didn't want to wade into a line of thinking that strikes me as both endless and senseless. Thanks much for assertively saying what many of us are thinking, and what needed to be said.

Wayne

 

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.

You yourself have been polite as always awol and the majority of the blame lies with v99. But you have also been following up in generally polite terms with nonsense about how this relates back to previous issues with Cort, which are in fact just more series of the same kind of senseless arguments. Making out that the argument is happening because Cort doesn't listen and isn't reasonable even while he's listening too much and being too reasonable just looks like the role of cheering on a bully to me.

 

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.

That's because you're a racist and racists can't see such things. Don't ask me to prove that you're a racist, it's just a feeling I get. Racism is so subtle and pervasive it's hard to prove. Just take my word on it.

 

Hi Mark,

That's exactly what I've been thinking since I first checked in this morning. I just didn't want to wade into a line of thinking that strikes me as both endless and senseless. Thanks much for assertively saying what many of us are thinking, and what needed to be said.

Wayne

Yes Wayne, something also needs to be done, this kind of distraction serves no further purpose, and I'm sure we'll be discussing it further behind the scenes.


This thread is for discussion of Cort's article. Not argument about him. Any further off-topic posts will be a breach of the rules after ample warning.

 

You yourself have been polite as always awol and the majority of the blame lies with v99. But you have also been following up in generally polite terms with nonsense about how this relates back to previous issues with Cort, which are in fact just more series of the same kind of senseless arguments. Making out that the argument is happening because Cort doesn't listen and isn't reasonable even while he's listening too much and being too reasonable just looks like the role of cheering on a bully to me.

What I have actually said, is that there is a need for Cort to either give Mikovits the benefit of the doubt as he does for the CAA, or, provided in depth critical analysis of the CAA. One or the other in order to be objective. As long as he bullies Mikovits and the WPI he will probably find many of us leaping in to defend, just as he does for the CAA.

I have also said that while he provides abundant information, for which people are understandably grateful, there is also a need for clarity. Not all arguments are equal, not all suggestions or pieces of information are equally valid.

 

OK that last one's a cross-post awol so fine. But in reality your perspective on Cort re:CAA and Mikovits is just that his views don't exactly align with your own. You would have written the angle with a slightly different slant, a different angle, investigated certain angles more thoroughly. Allow me to doubt that your daily articles like this would scrutinise Dr Mikovits as thoroughly as you would the CAA. All you are talking about is a degree of bias; the subconscious preferences one has, the opinions that make humans...interesting. Everyone else can see this, because we too would have slanted things our own way and see bits where we differ slightly. That's why we're fed up with the argument.

 

For the record, I have never attacked the CAA myself (I have explained others' perceptions of the CAA which is different). Nor would I write articles doing it. But if writing an article about someone's science, I would give their own statements on that science high importance. I would also treat as highly suspect, journalist assesments of science (they are not experts) and the comments of those with a proven negative agenda against that science. I am trusting you will let this message pass, as your own created a false impression of me and what I am saying that required rebuttal.

 

To try to make some sense out of whatever came out of the argument - an issue which I've seen tearing through a number of different people's points of view - is this question which will now have to be answered:

Discrepancies between studies:
Cohort Selection?
Methodology?
Cohort Selection AND Methodology?

And in each case: what skullduggery may be involved? In other words, did the CDC - as Dr Venon appeared to allege - deliberately set out not to find XMRV?

These central questions - and the question of foul play - lie at the heart of this confusion.

Especially cohort vs method.

 

Rusty, I want to thank you for capturing exactly how I feel (your posts #172,174)

Big brother IS watching
A sign of the success of various ME/CFS forums is that they are being visited and indeed cited widely. Alan Dove and Dr Singh are just two examples. Similarly, this patient community IS being listened to - one just has to read Dr Alter's comments on the decision to publish earlier rather than later (i.e. before finding proof of viral integration), to get the sense that he realizes this community is in dire need of robust biomedical research.

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.

Many of us are in awe of Cort's prodigious output, particularly within the context of an ME/CFS diagnosis. However many of us have also experienced significant difficulty in effecting change matter-of-factly when the facts have strayed, and simply don't have the health and energy during relapses to slog through inordinate resistance and escalating invective. The reality is that this forum has a long history of skirmishes - often related to perceived bias, and incorrect facts. These skirmishes often escalate - rather than being systematically and matter-of-factly nipped in the bud by correcting factual inconsistencies. It's just the culture of this place. For all the effort Cort sometimes invests in refuting valid concerns, he could "just do it". I submit that when clear-cut errors are matter-of-factly acknowledged and corrected, this forum is a better place for it.

As the science on XMRV and MLV's explodes, it will be increasingly in our community's best interests for the various ME/CFS forums to be "go-to" sites, where information is indeed factual. And the forums which demonstrate nimbleness in addressing the occasional error will benefit in terms of credibility.

No one wants to be mired in conflict. Surely there must be a middle road between loyalty to the forum host, and sufficient humility to encourage continuous improvement. If forums like this can't address factual errors, why expect the media to do so?

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?

Exactly!.....lets talk solutions. Thank you Parvofighter.

Not one person here is against correcting misinformation, be it from Cort or anyone else. Most here also know all about the history of frustration coming from perceived notions that some distort the seriousness of this disease and how that may give fuel to our enemies. These disagreements are hardly news to anyone who has been around a while, but many of us want to look beyond those disagreements....and that cannot be done when frustration is allowed to influence objectivity.
No one wants the facts misinterpreted....but most don't care to have them force fed either. It's not very complicated.....The confrontations need to be more civil. Parvofighter's suggestion seems like a good idea.

 

For the record, I have never attacked the CAA myself (I have explained others' perceptions of the CAA which is different). Nor would I write articles doing it. But if writing an article about someone's science, I would give their own statements on that science high importance. I would also treat as highly suspect, journalist assesments of science (they are not experts) and the comments of those with a proven negative agenda against that science. I am trusting you will let this message pass, as your own created a false impression of me and what I am saying that required rebuttal.

I will let it pass for now, others can review the record. Anyone can and does judge any publication in context, as they do with Cort. No problem there. And you are continuing to discuss Cort, and you accused him of bullying Dr Mikovits (ridiculous) above, and of a 'proven negative agenda', so you seem not to get the point - no more of that nonsense, that's exactly the sort of thing I was talking about. You may want to continue the exchange, nobody else does. Enough now please.

 

Bingo.....lets talk solutions. Thank you Parvofighter

Parvofighter's post was excellent as always. I don't actually agree there's a serious problem there, but there is always potential for improvement I agree and I do agree with some of the sentiment about drafting and reviewing, so if anybody does have a solution or proposal to the supposed problem with Cort's articles, either discuss it privately with Cort or start a separate thread with a specific constructive proposal please - if nobody has one of them there's not a lot of point in raising the question.

 

another small correction: the "proven negative agenda" was not a reference to Cort. I was referring to the general need to carefully assess sources for articles.

 

Cort,

I don't entirely understand your refusal to change the title. Jace's point is quite valid. It is very misleading. There are not four viruses, and only the likes of McClure are trying to say that the paper does not back up the work of the WPI.

 

another small correction: the "proven negative agenda" was not a reference to Cort. I was referring to the general need to carefully assess sources for articles.

That is correct when I re-read it, so OK.
Any haste was due to just having wasted a couple of hours reading through this argument instead of reading and discussing the science as I had been hoping to do. Those sort of unexpected and unwanted time pressures are exactly how mistakes get made.

 

Cort,

I don't entirely understand your refusal to change the title. Jace's point is quite valid. It is very misleading. There are not four viruses, and only the likes of McClure are trying to say that the paper does not back up the work of the WPI.

"Four viruses?" sums up the central question that the study poses: are these really different, or not? They have been named as 4 viruses - that is what the studying is positing. So it's a perfectly fair question to ask to posit this question. That's what the study itself does. XMRV, CFS-1, CFS-2., CFS-3 are the 4 viruses now said to have been associated, and Cort puts a question after that and considers the question.

If you don't entirely understand his refusal to change the title for you then that is your fault.

 

are these really different, or not?

Or rather: is this finding and interpretation of the positive XMRV results being distinct from the group of 3 additional MLVs correct?

Everyone is wrestling and wriggling around with this conundrum but it doesn't seem to resolve neatly to me yet. Anyone who has the answer should post it.

 

Same but different: CFS is never ME or XMRV

The bottom line is this:

Cort does not believe CFS is a single neurological disease caused by one agent. Cort does promote stories about 'recovery' in CFS which goes against current medical knowledge about neuro immune disease. CFS, however, is not a neuro immune disease, (look at the diagnostic criteria). Cort is free to do this, it's his website not anyone elses. CFS includes people with unspecific reasons for having CFS. This is understandable. This is Cort's reason for his articles written supporting biopsychosocial explanations of CFS. It's Cort's decision.

Cort's acceptance of CFS being made better by 'anything' (entirely possible as CFS is 'anything' not a disease) this makes people with ME/neurological disease who were wrongly told they have CFS and who erroneously use the label CFS to describe their neuro immune disease, blow up in fury. This is understandable. The CDC have cruelly forced people with neuro immune disease to tell others, (and their doctors to tell them) they have CFS. The fact is, people with neuro immune disease CFS (of the Nancy Klimas/Dan Peterson/Cheney variety) exceed the diagnostic criteria for CFS, unless using Canadian Consensus definition which the authorities refuse to accept or use. There is no way out. The American health department refuse to accept the ICD-10 G93.3 coding and classification of Benign Myalgic Encephalomyeltiis, or ME as well. So people use the CFS, even if they don't have it. No other choice in America.

This creates a massive problem for patients both in a clinical setting, and even communicating with and amongst each other. 'We' (brand CFS) do not share the same abnormalities, symptoms, or disablities because as 'CFS' patients, there is no diagnostic test to confirm ANYTHING AT ALL. Meaning....................

i) People with CFS with neuro immune disease are allowed to use the label CFS and think themselves as having CFS. Cort supports these people.
ii) People with CFS without neuro immune disease are allowed to use the label CFS and think themselves as having CFS. Cort supports these people.

Ironically by Cort trying to be accepting of both sides of CFS, he meets the adoration and yet still the ire of many. The is unfortunate for Cort and unfortunate for people very ill who do not want anything said by influencial people (or read by influencial people) that will jeopardise their medical state. This observation encapsulates the entire V99 debate. It is non arguable, simple fact.

The only way to stop irritation on both sides, is for there to be a diagnostic test for CFS, or for a neuro immune disease linked to XMRV/MULV.

As XMRV/MULV approaches fruition, the biological disease 'camp' of CFS (the ME patients) thus want no more talk of Lightning Process/Gupta, which Cort promotes due to his free choice in doing this. The problem is until CFS diagnosis is changed, then indeed Lightning Process/Gupta can 'cure' some cases of fatigue states who have been told also they have a CFS. CFS is not a disease, it contains people who have a disease, but not all. So it's always going to be a circular argument on an ME CFS forum. Take ME out of the name ME/CFS, and then it won't. ME people will naturally side with biological disease causing agents as the single cause of their disease. They need it. People happy with CFS, and whose lives are not in risk of dying from 'CFS' do not need a single cause. Of note, the moderators on this forum side with the CAA view on CFS and often correct ME people who are pointing out psychological theories about CFS. This is Cort's choice, nothing to do with us. It could be if we pay to use this website. It's free, we don't pay.

A simple way to stop all the upset would be to rename this website/forum, aboutcfs.org and host this forum on www.forums.aboutcfs.org (taking out the 'ME') I am not sure this technically possible without moving the forum, and buying a new domain name for many $$$.

At the end of the day ME/CFS is always going to be like saying MS/CFS, or Parkinson's/CFS. Remember, the person to blame for 'CFS' is not Cort or his detractors but the psychiatric profession and the CDC. THE CDC CAUSED THIS TO HAPPEN. They KNEW the consequences. We reap the consequences as both ME and CFS patients.

There is no way to prevent personal bias and belief systems of what 'CFS' is, entering an online forum be these biological/psychological, or a bit of both. If one camp sides with another, the other camp will not be happy. This has happened and continues to happen. It cannot fundamentally be addresed due to the above information. All we can do in the mean time until the CDC reclassify CFS or create a new XMRV/MULV disease label is to possibly make it clear our own beliefs, when replying to people or making posts.

Cort, to his credit did this with a poster who was upset why he promoted an article on the Lighting Process (LP) on this forum. Cort gave his answer, and for clarity here it is:

''I'm going to draw the line where I always draw it: if people with CFS benefit from any therapy they are welcome to portray it here.''

Cort went on to say

I suspect that there are a going to be a percentage of people who do very well on LP. The reason I suspect that is that it seems to be true for people trying all sorts of protocols from the methylation protocol, antivirals, antibiotics, hormone therapy, homeopathics, to stems cells etc...some people will do very, very well on each of them and most people will do less well or not well. This is very wide disorder with all sorts of subsets and each of them is worthy of discussion. In the next couple of weeks, for instance, I'm going to present blogs on people who significantly improved using pregnenolone and 5-HTP.

http://www.forums.aboutmecfs.org/blog.php?b=364&page=2#comments

Cort has been honest in openly telling people his position on CFS, and there you have it. It may have been seen by more people had it not been in an article response comment but it was written and not secret or hidden. I suspect Cort's views fall inline with the CFIDS Association of America, although I do not know that unless Kim McCleary says so. The CAA doing this I feel could 'de-fuse' any confusion over if Cort is indeed an un-named CAA spokesperson or simply a 'fan' of the CAA, which some people feel could be more likely. There is no crime in being a 'fan' of any single CFS support group although it may be useful to state it so people know!

The only thing we can do is sit it out, correct mistakes (by anyone) in scientific reporting (how this debate started and what V99 did), and to make more clear our own personal views on CFS and ME when getting into discussions. This would save pages and pages of to and fro tennis match type debates where both sides cannot compromise. Why should they compromise? All we need is transparency, rather than fangirls and fanboys cheering for match point and the winners trophy.

In an ideal world of ten thousand word paragraphs we could state our views on CFS , such as:


I believe CFS to be an illness that encompasses many fatigue states

Or

I believe CFS to be a neuro immune disease that is most likely caused by an infectious agent leading to neuro immune disease that cannot be treated with psychological rehabilitation methods such as CBT/LP etc, or any other unproven method.


To keep the peace, we don't do this. We (myself included) constantly interchange CFS and ME/CFS, as we have no other way to describe what we are trying to say within a sentence. Lets try and remember this, that we are not a unified body of diseased people both here at Phoenix Rising and at home, just people with a label. For many this label does not or will not cost them their life, and for others it will and already has as they are dead. That is THE ever pressing and present reason V99 and other people want pin sharpe accuracy on scientific facts, less CAA bias, and less LP psycho stuff. Yet this isn't possible. Cort has made his choice that apparently mirror's that of the CAA. For fans of the CAA, why not have CAA bias? For them it's their choice and very sensible.

So to conclude, some brief thoughts:

All people who are very sick can do is to keep correcting errors in reporting on XMRV/MULV and I'm sure they will!.... until people with ME or neuro immune disease have a new label once the WPI/FDA work progresses. Situations like this will happen it's human nature to defend ones's self (on both sides).

All people with fatigue syndromes and CDC critera CFS can do is to appreciate the fact that people in their CFS camp with ME, have a single disease that makes them very very ill and so they will be often 'anti' holistic or psychological or unproven therapies, and anti CAA. Not because these ME people wish to upset you or Cort or the CAA, but because they are trapped in the wrong illness diagnosis and desperately need help after decades (literally) of not being able to go outside, leave the local town to maybe get a hair cut or travel to see relatives or attempt to have even basic ability to form friendships and relationships that severe neuro immune disease stops.

At the end of the day if you have friends/relatives/lovers/children who have died of 'CFS' then you will be furious of thoughts of psychological rehab or other wacky theories for 'CFS'. This is no different than theories on psychological rehab or other wacky theories for HIV/AIDS.

If we understand each other, we can be mindful of each other's reasons for taking the stances we do. Then we can be less disturbed by them and tolerate each other's polar views and allow each side to have their say. If, however, these views are illogical or factually in error, or at risk of harming people during this very sensitive political time we find ourselves in, then people can and surely willl point them out.

 

Let's start off with the assumption that everyone here has the intention of getting better, and nobody has a secret motivation to sabotage science at their own peril.

With that good faith assumption in mind, the process of pointing out factual errors is helpful, and will self-correct the dissemination of information to the benefit of everyone.

Including those watching the discussions from the outside. As far as I'm concerned this forum has already shown great promise as an agent of change. With the speed of new research flowing in it will soon become much more influential.

I personally don't understand a 10th of the science, but am learning a great deal from watching those who do.

 

"Four viruses?" sums up the central question that the study poses: are these really different, or not? They have been named as 4 viruses - that is what the studying is positing. So it's a perfectly fair question to ask to posit this question. That's what the study itself does. XMRV, CFS-1, CFS-2., CFS-3 are the 4 viruses now said to have been associated, and Cort puts a question after that and considers the question.

If you don't entirely understand his refusal to change the title for you then that is your fault.

They have talked of variants, not different viruses. They have also made it quite clear that this is less than the normal variation found within a single strain of HIV. The title is incorrect and misleading.