Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"

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I stumbled upon a thread on the mecfsforum that did seem pretty unfair and attacking on Dusty Miller.

The guilt by association thing is unfair, but it is still being used as a way of discrediting patients and their concerns about the way they are treated.

I don't know much about Wakefield, and haven't read much of what was said here, but I expect that those CFS patients most motivated to comment upon the case are those that feel he has been poorly treated - thus, an impression that CFS patients are more likely to be supporters of Wakefield than is really the case will be created amongst those browsing the forum. Seeing as Wakefield is so widely viewed as discredited, these sorts of silly things can damage the way we're viewed by others.

Maybe all we can do about it is put these little notes about, in the hope of reminding any 'outsiders' that things are more complicted that they'd instinctively assume. It is a complicated one though, and there is a tension between wanting to appear reasonable to those who are judging you unfairly, and wanting to maintain a freedom to speak freely and openly.
Who is Dusty Miller?
 
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I think many on this board are trying to create a false equivalency between the situation of Andrew Wakefield and the current situation with XMRV research. Not everyone here supports Wakefield or believes in his long-discredited theory about vaccines causing autism. Just because the press is often getting it wrong about where the XMRV research is right now, does not automatically mean that the press is wrong about its current reporting on Wakefield. (Wakefield got lots of enthusiastic press support from certain elements in the British press when he first published his "findings", so it's not like he's been a press pariah all along.)

I think we had all better agree to disagree about Wakefield on this board, because I don't think arguments about him are particularly relevant to the issues we face with our illness and the progress of good science and good reporting about it. I for one don't want to make common cause with Wakefield just because Wakefield is an underdog who goes against authority. Not every underdog who goes against authority is equally justified in doing so.

ETA: I got into it about Wakefield on another thread, not because I felt I would ever change the minds of anyone who is still really determined to believe him, but because I was concerned about the appearance of groupthink on this board and the fact that the commonly expressed views here about how we and Wakefield are all in the same unjustly persecuted boat are so rarely challenged. I personally don't care to be put in that boat, and anyone else who feels that way should feel free to say so. We can disagree civilly here, I hope, and this needs to be a safe place for people to have differing points of view.
And part of the "this needs to be a safe place for people to have differing points of view" argument means that those of use who are concerned with these latest allegations against Wakefield, and the tendencies they are part of, need to discuss them rationally and openly without being told to be quiet in case somebody's watching. 'Groupthink' is hardly going to happen when people are openly seen to disagree with each other.

I'm concerned that you seem to be implying you are somehow being silenced, because people disagree with you?

Again - I'm not arguing that we should uncritically 'believe' Wakefield, not at all, and I think you have a problem understanding this. THAT concerns me.
 

urbantravels

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I'm concerned that you seem to be implying you are somehow being silenced, because people disagree with you?
Not at all. Gotta work a lot harder than that to silence me. And for the record, I don't feel we need to censor ourselves because others are watching and judging our community. What I *do* want to do is encourage those who disagree to do so - civilly.

The anti-vax sentiment on this board can seem so pervasive that I'm sure many others who might not agree with that point of view don't feel particularly encouraged to dissent.
 
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I stumbled upon a thread on the mecfsforum that did seem pretty unfair and attacking on Dusty Miller.

The guilt by association thing is unfair, but it is still being used as a way of discrediting patients and their concerns about the way they are treated.

I don't know much about Wakefield, and haven't read much of what was said here, but I expect that those CFS patients most motivated to comment upon the case are those that feel he has been poorly treated - thus, an impression that CFS patients are more likely to be supporters of Wakefield than is really the case will be created amongst those browsing the forum. Seeing as Wakefield is so widely viewed as discredited, these sorts of silly things can damage the way we're viewed by others.

Maybe all we can do about it is put these little notes about, in the hope of reminding any 'outsiders' that things are more complicted that they'd instinctively assume. It is a complicated one though, and there is a tension between wanting to appear reasonable to those who are judging you unfairly, and wanting to maintain a freedom to speak freely and openly.
But, as a community (I'm not a patient), there are, in my opinion and this is what I'm trying to discuss, parallells with how people are treated in public 'science' discourses, and ignoring these may be done at the community's peril.

If taken to its logical conclusion, none of us may ever raise our heads above the parapet in case of being assigned guilt by association. Currently, Lombardi et al are being implied as making inappropriate claims in getting their paper published. Suppose that meme gathers momentum? We will all be in a terrible situation if we gag ourselves so that we don't look 'bad' to people with unpredictable, unreasonable peccadillos about what constitutes 'good' patients or their supporters.

But I agree with you about there being a tension in this area. Nevertheless, ME/CFS patient 'respectability' maintaining is one inexact science being played out on a slanted playing field with a team who have the power to keep moving the goalposts and a crooked ref (I've resorted to metaphor. sorry.)
 
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Not at all. Gotta work a lot harder than that to silence me. And for the record, I don't feel we need to censor ourselves because others are watching and judging our community. What I *do* want to do is encourage those who disagree to do so - civilly.

The anti-vax sentiment on this board can seem so pervasive that I'm sure many others who might not agree with that point of view don't feel particularly encouraged to dissent.
So you are happy for people to keep discussing this and to disagree with you openly then if they feel the need?

As regards 'dissent', people have to make their own choices whether they take part in a forum, you'd agree?
 

eric_s

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I agree that the case of Wakefield is quite separate from what is now being done to the WPI in some media. The claim is that Wakefield deliberately falsified information, and was being paid by some outfit to do so. I simply do not know whether this claim is well founded, but it is disturbing, and should be further investigated. Even if well founded, though, it does not by itself totally discredit the possibility that vaccines do damage to some people--that is a much larger question, and in my mind certainly remains open; XMRV was only recently discovered, and has never of course been tested for. Neither have other possible animal sourced retroviruses; the possibility remains that somehow such pathogens have entered the human blood system via vaccines. We shall have to wait and see. Chris
Yes, i agree. I would not say there is no connection between vaccines and autism. Once again, such a link is far from proven, as far as i can tell, and i'm not really able to judge the science anyway, but in light of some reports finding XMRV in a significantly higher percentages in autistic people as compared to healthies, and the possibility of a vaccine triggering replication of XMRV, i am open to that idea. The question wheter Wakefield faked things is a separate one.
 

Esther12

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If taken to its logical conclusion...
As you went on to say, I think it is about competing desires being in tension with one another rather than us being able to follow either ideal to it's most extreme position. I don't know how best to play this one, I'm not sure anyone does.

Dusty Miller is a retrovirologist, friends with the Ruscettis, and planning to work upon XMRV. Some of the CFS community seem to have been pretty prematurely rough on him imo.
 

eric_s

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But- if you are worried about being the victims of various 'guilt by association' - that ship sailed long ago!

And, by your logic - nobody in the ME community should be supporting Sarah Myhill either, or even just saying she's been treated inappropriately - but people are.

We are always, as a community, in danger of being attacked, just for daring to be ill or have family who are so. Every move we make is in danger of attack. We've had years of not being taken seriously, no matter that the situation is very serious.

Critiquing bad science or inappropriate press attacks on people like Wakefield is not supporting 'charlatans' and 'fraudsters'. It is contextualising the problems that dog the practices of 'science', and these do have specific relevance for the ME/CFS community.

We can't not study these issues, in order to contort ourselves to please others, in order not to cause multiple others with their own unpredictable (and predictable) prejudices thinking we 'look bad' and deciding not to take us seriously, who don't seem to be taking us seriously in the first place.

i don't know anything about Dusty Miller, but if he/she's doing something that's raising concern, then concern needs to be raised. But are 'attacks' really even happening? Objections do not constitute 'attacks', for example.
Maybe that ship has sailed, i don't know, but that does not mean we have to ceate more wind...

In regards to Dr. Myhill, i don't know much about her. I just don't have the time and capacity to follow every story, and since i don't live in the UK, it's not so important to me. Maybe she was indeed able to help some people, but i'll tell you honestly, when i hear things like "stone age diet", the "quack alarm" starts to ring in my head. Not saying that's what she is, i don't know, but yes, i don't think it helps us to be associated with a lot of controversial people. I prefer people like Alter, the Ruscettis, Silverman, Klein etc. When we have them and they stay on the case, i think we are close to "victory".

We definitely have to criticize bad science. That's what i'm saying, too. And only scientists can do this. So we need to unite more, raise more money and get good scientists to work, to prove the authors of bad science wrong. But with my limited knowledge of the Wakefield story, it looks as if he might have been the author of bad science here.

Dr. Dusty Miller is a world class retrovirologist, as far as i know, and people have been acting paranoid and aggressive instead of being happy to have someone of his caliber getting involved.
We need money for scientific studies, clinical trials etc. and if we want that money to come from governments or the general public it will be their perception of the situation that makes the difference. So it does matter how we look. But we should not wait for them. We need to do more ourselves, we can do much more.
 

Mark

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Having merged these threads, I'm not sure it was a good idea, just as I'm not sure it's a good idea to merge the subject of this thread - responding to a terrible Forbes article full of inaccuracy and misinformation, which is just the sort of rubbish the 'contamination papers' were designed to fuel - and various other ongoing persecutions that should have no obvious connection but seem to get insinuated into the discussion, which originates towards the end of the Forbes piece. It's cleverly done, to create a sort of subtle "guilt by association" feeling in the reader, which we risk spreading if we accept the equivalence - the only real connection between these cases is the one these 'attack dogs' create.
 
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Maybe that ship has sailed, i don't know, but that does not mean we have to ceate more wind...

We definitely have to criticize bad science. That's what i'm saying, too. And only scientists can do this.
I'm sorry but that is an untenable belief. First there is the problem of defining a 'scientist' according to rational principles, not an irrational appeal to authority.

Then there's the logical conclusion to this comment. So no-one else can think scientifically? No-one else can make critique of bad science? Why is anyone of us here then? What about Mary Anning? Should she not have been allowed to 'do science' because she was not officially a 'scientist'?

Dr. Dusty Miller is a world class retrovirologist, as far as i know, and people have been acting paranoid and aggressive instead of being happy to have someone of his caliber getting involved.
We need money for scientific studies, clinical trials etc. and if we want that money to come from governments or the general public it will be their perception of the situation that makes the difference. So it does matter how we look. But we should not wait for them. We need to do more ourselves, we can do much more.
This sounds grand, but you are expecting the community to place themselves into a situation they cannot win. They cannot afford, with the best will in the world, to miraculously provide all the money needed to do proper science on CFS. But on top of this unrealistic expectation, you are also expecting them (in order to win over contmptuous government agencies) to act like, well what? A Jane Austen minor character? (even Jane Austen heroines might be too strident for you for all we know because of your vague admonition). Your "it does matter how we look" is so vague, so fluid, again you are expecting the community to place themselves into a situation they cannot win.

Re Dusty Miller - all I know now he's being considered eminent and wonderful, and people are giving him a hard time. But alarm bells are ringing immediately, when the community is portrayed as unreasonable, but NO INFO is given as to what the disputes are about.

We need to do better than this as a community. I know - I can go and look myself. But can you not see that merely slagging off his objectors with vague perjorative descriptions of 'paranoid and aggressive' are ad hominem attacks, which means your reasoning is starkly fallacious, which makes your argument unreliable at best?
 
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Having merged these threads, I'm not sure it was a good idea, just as I'm not sure it's a good idea to merge the subject of this thread - responding to a terrible Forbes article full of inaccuracy and misinformation, which is just the sort of rubbish the 'contamination papers' were designed to fuel - and various other ongoing persecutions that should have no obvious connection but seem to get insinuated into the discussion, which originates towards the end of the Forbes piece. It's cleverly done, to create a sort of subtle "guilt by association" feeling in the reader, which we risk spreading if we accept the equivalence - the only real connection between these cases is the one these 'attack dogs' create.
That's a key issue, Mark. It is a frequent occurrence in rhetoric, this subtle 'guilt by association' insinuation. Obviously this creation of such is a rhetorical device that it's worth studying, if only to relieve ourselves of the unease and fear of being (incorrectly) found guilty by association such a rhetorical device is designed to engender, and which (i would argue) often, very effectively, prevents people, in various ways, from effective advocacy.
 

eric_s

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I'm sorry but that is an untenable belief. First there is the problem of defining a 'scientist' according to rational principles, not an irrational appeal to authority.

Then there's the logical conclusion to this comment. So no-one else can think scientifically? No-one else can make critique of bad science? Why is anyone of us here then? What about Mary Anning? Should she not have been allowed to 'do science' because she was not officially a 'scientist'?
I don't think i was wrong there. I did not introduce any criteria in my post determining who is to be considered a scientist. Basically, what i was saying is that only someone who understands a topic can make a serious judgment about the quality of something published in that area. And i think this is correct.
My point was more something else, anyway. I wanted to say that instead of getting angry over studies, articles etc. we consider bad science, we should try to produce more good science. And for that, again, we need scientists. I can't do it and i guess neither can you. But we can fund it or even organize it, and i think this is our job.
This sounds grand, but you are expecting the community to place themselves into a situation they cannot win. They cannot afford, with the best will in the world, to miraculously provide all the money needed to do proper science on CFS. But on top of this unrealistic expectation, you are also expecting them (in order to win over contmptuous government agencies) to act like, well what? A Jane Austen minor character? (even Jane Austen heroines might be too strident for you for all we know because of your vague admonition). Your "it does matter how we look" is so vague, so fluid, again you are expecting the community to place themselves into a situation they cannot win.
I TOTALLY disagree. We should never think this way and it is not true. A simple calculation. 2 million ME/CFS patients in Europe and North America. I'm pretty sure 75% of them can save 100 US Dollars per year, if they plan it. This makes 150 million US Dollars per year. It's not a miracle, it's even rather easy to be done. All we have to do is start doing it.

I don't know who Jane Austen is. And i would like to ask you to please stop talking this way, i'm trying to be civil.
Re Dusty Miller - all I know now he's being considered eminent and wonderful, and people are giving him a hard time. But alarm bells are ringing immediately, when the community is portrayed as unreasonable, but NO INFO is given as to what the disputes are about.
Then please go and read up about the story. I don't have time and energy to report it all.
We need to do better than this as a community. I know - I can go and look myself. But can you not see that merely slagging off his objectors with vague perjorative descriptions of 'paranoid and aggressive' are ad hominem attacks, which means your reasoning is starkly fallacious, which makes your argument unreliable at best?
I don't think what i have said can be considered ad hominem attacks because i did not attack a specific person and i did not criticize them in any area that was not relevant for this problem. I think the way people acted over there in that situation was not helpful and productive at all. I did not criticize some of their worries about how the study is to be conducted. Those worries may or may not be justified. I was criticizing how the discussion was conducted. This does matter too, because i still believe the image we provide is important and because we are dealing with people and if we offend and lose them, we are hurting ourselves.

I'm not looking for a discussion here. I gave my input regarding Wakefield, just as i'm interested to read other people's inputs. I don't think just because someone is voicing an opinion that is different from someone elses there has to be a fight until someone is shut up. People should read the different viewpoints and make up their own minds.
 

urbantravels

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But alarm bells are ringing immediately, when the community is portrayed as unreasonable, but NO INFO is given as to what the disputes are about.
The Dusty Miller blow-up was on the other forum, not here. Go take a look and see how reasonable you think the discussion was.
 

Cort

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That sounded like a real hack job on Forbes..having a business reporter tell Science they shouldn't have published a study was an eye-opener for sure.....Good lord!

i don't know anything about Dusty Miller, but if he/she's doing something that's raising concern, then concern needs to be raised. But are 'attacks' really even happening? Objections do not constitute 'attacks', for example.
Objections - raised in order to have a dialogue and come to an understanding have happened in the ME/CFS Forums regarding Miller's study.

So have 'attacks' that use innuendo, twisting words out of context, people trying to 'win' an argument no matter why, people putting being 'right' above finding out what is true....have also happened. Both have gone on.

It's a mix...Its a complicated situation.... the main voice there raised an interesting question about IAP....and it was a legitimate question. Miller's attempt to answer it was not responded to .......that same person also brought up the question of the VP62 clone - another legitimate question.... that same person later said Miller had no experience with MLV's (he has 20 years of experience).........it was a real mishmash, in my opinion, of reasonable questions and unreasonable statements.

The heated voices naturally draw more attention but there are calmer voices there as well.

Miller's full study will, I believe, be out soon and everybody will get a chance to examine it.
 
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Can we complain to the editor, because there are far too many factual inaccuracies in that article. (eg it is a prostate cell line, not mouse and the Science findings were replicated in clean labs).

Re- Dusty Miller, perhaps we should have a thread here demonstrating our support of his research?

edit- I personally am not writing a letter at the moment, so if anyone else wants to give it a go...
 

urbantravels

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I'd say definitely send a letter to the Forbes editor, can't hurt, and there's a small possibility it might help.

When I tweeted the Forbes article I wrote, "Does Forbes say 'Sell' just because the WSJ says 'Buy'?" (this would be in reference to XMRV). Seriously, I wondered if Forbes just wanted to take a contrarian view to the excellent coverage by Amy in the WSJ.
 

Wayne

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3,749 views | 0 recommendations | 20 comments

Those are the latest numbers on the Forbes article. I just posted one last comment, and won't be wasting any more time going back there. I like the 0 recommendations part, but was quite amazed at the 3,749 views.

This statement by Judy Mikovits: “causality is clearly a reasonable hypothesis that begs further scientific and medical research”

brought this reply by you? --- “they are obviously claiming that XMRV is a cause of CFS.”

Mr. Salzberg, I find your logic completely unfathomable. I am quite shocked that Forbes allows such poor quality journalism on their website.
 
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I don't think i was wrong there. I did not introduce any criteria in my post determining who is to be considered a scientist. Basically, what i was saying is that only someone who understands a topic can make a serious judgment about the quality of something published in that area. And i think this is correct.
My point was more something else, anyway. I wanted to say that instead of getting angry over studies, articles etc. we consider bad science, we should try to produce more good science. And for that, again, we need scientists. I can't do it and i guess neither can you. But we can fund it or even organize it, and i think this is our job.
But your words certainly gave the impression you think only some people with 'insider status' can 'do science'. I haven't got time to explain Mary Anning in detail to you, but she was a major discoverer of paeleantological evidence who was an 'amateur', and did not get her due recognition because of that. Indeed, you appear to have very narrow beliefs on what the ME/CFS community is 'permitted' to do ('our jobs' - raise money?). By your logic, some of us have not right to be critiquing bad science (you misrepresent that as 'getting angry') but should sit on our hands, or our hair, like Rapunzel, waiting for the prince (Mr 'good science') to rescue us, except for raising funds. By your logic, no-one should have done work showing the flaws of psychogenic explanations, because psychs are 'scientists' (that's an unsafe assumption, but they do claim to be and are accepted by others as such).


I TOTALLY disagree. We should never think this way and it is not true. A simple calculation. 2 million ME/CFS patients in Europe and North America. I'm pretty sure 75% of them can save 100 US Dollars per year, if they plan it. This makes 150 million US Dollars per year. It's not a miracle, it's even rather easy to be done. All we have to do is start doing it.
I'm sorry, but this shows an (to my mind, by now, inexcusable) ignorance of the rank poverty affecting many ME/CFS sufferers, and possibly an ignorance of the issue of poverty per se. That's even before we discuss that even your unrealistic scenario is still unlikely to be enough of a 'miracle' to get that panacea of 'research' completed. There are people out there living in 'Dickensian conditions' (a key advocate for ME/CFS sufferers' quote actually, not my own) who can barely afford heating or food (one of these has to suffer usually) because of the affects of psychogenic dismissal on benefits.

I don't know who Jane Austen is. And i would like to ask you to please stop talking this way, i'm trying to be civil.
I'm sorry, but making a literary reference is hardly uncivil, which is what you are implying, and it's unreasonable to expect somebody to 'stop talking this way'.


Then please go and read up about the story. I don't have time and energy to report it all.
Which may be why you resorted to accusing people of being paranoid and aggressive. Lack of ability, for whatever reason, to be able to follow something, does not mitigate ad hominem attack on members of this community, which is what you did.

I
don't think what i have said can be considered ad hominem attacks because i did not attack a specific person and i did not criticize them in any area that was not relevant for this problem.
Ad hominem fallacies (whether deliberately rhetorical or errors) do not have to attack specific people. Misrepresenting someone's argument as 'paranoid and aggressive' (or that of more people), rather than explain what's happening, was designed to make the reader believe certain people are 'paranoid and aggressive' rather than merely incorrect in their argument. People, for all I know, may be acting reasonably in their objections, and you won't present the evidence needed to present a case that this is otherwise.

I'm not looking for a discussion here. I gave my input regarding Wakefield, just as i'm interested to read other people's inputs. I don't think just because someone is voicing an opinion that is different from someone elses there has to be a fight until someone is shut up. People should read the different viewpoints and make up their own minds.
But you not looking for a discussion is futile. You put your opinion in a forum, you might get a discussion!

Regarding the 'Dusty Miller blow-up'. I'm still trying to find out the exact details. What has interested me in the interim is that allegedly, Dusty Miller accused a patient of probably believing in Cold Fusion, as a guilt by association ad hominem!

IF this is true (the smoke and mirrors problem that dogs all internet interaction seems to be particularly bad, with people claiming other people are Miller, Mikovits etc. so it might not be) then Miller's fallacy here is outrageous, and hardly likely to reassure people.

But - I would be interested in other people's careful analysis of what's been going on (I'm not interested in any "objectors are paranoid and aggressive memes". A summary of the argument would do!) I'd actually be grateful for a reasonable summary, it doesn't have to be completely neutral, just reasonable! If anyone can do that - thank you in advance.
 
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I'd say definitely send a letter to the Forbes editor, can't hurt, and there's a small possibility it might help.

When I tweeted the Forbes article I wrote, "Does Forbes say 'Sell' just because the WSJ says 'Buy'?" (this would be in reference to XMRV). Seriously, I wondered if Forbes just wanted to take a contrarian view to the excellent coverage by Amy in the WSJ.
I agree. Please feel free to write a letter.

In my eyes one cause for all this bad coverage is the fact that authors have no clue about virology and are too lazy to read the studies. Moreover it's much easier for them to take the contamination pathway. Why? Contamination is something everyone understands and gets the author into a position of moral superiority. Do you think he would be able to answer any virus related questions that needs a little understanding of the material? Definitely not BUT if it's contamination he wouldn't have to anyway. Why? Because there is no virus and therefore no need to understand things he probably could not understand anyway.