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

Messages
6
Check out the post on Forbes

Forbes has a history of extreme positions on medical subjects. I think this recent post should be read and responded to by those knowledgeable.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
On another thread people were discussing lawsuits. Now this is a case where i would say chances for success are pretty good, at a first glance.
But i don't know if the WPI really care that much about one such blog article and wheter it would be wise for them to do it.
 

LJS

Luke
Messages
213
Location
East Coast, USA
This article is the worst reporting I have seen on the contamination papers and XMRV in general. It states that the whole case of XMRV is solved and proven to be contamination with no possibility of something else going on and that the XMRV science paper should never have been published. We obvious still do not know the fate of XMRV and I feel the possibility of contamination needs to be taken seriously but some of the statements in this article go beyond bias.

Forbes: "Big Study Linking Chronic Fatigue To Virus May Be Fatally Flawed"
http://blogs.forbes.com/sciencebiz/...fatally-flawed/?boxes=businesschannelsections


...
Now it turns out that, like many initially exciting reports, this one has a much more mundane explanation: contamination.

As happens all too often when a “surprising” discovery is announced, the result turns out to be an experimental error.
...
In retrospect, Science shouldn’t have published the flawed study, and you could argue that peer review failed. On the other hand, the final resolution illustrates the self-correcting mechanism of science at its best. All of this is very reminiscent of the scientific response to Andrew Wakefield’s notorious 1998 study claiming that autism was associated with the MMR vaccine: multiple followup studies, most of them conducted far more carefully, failed to reproduce the results. But in that case, bad scientists (Wakefield) aided by gullible journalists and non-scientists (Jenny McCarthy, Jay Gordon) have kept the story alive, causing continuing damage to children in the form of preventable illnesses and even deaths.

Please leave comments on this article correcting the authors errors.
 

Riley

Senior Member
Messages
178
That is a terrible article. I don't have the energy to worry about the naysayers at this point. The science will be done regardless of what they think, and I believe xmrv will be proved one way or the other in 2011 with or without them.
 
Messages
6
I'd like to hear your tactics...

for dealing with the press promoting bad information (and I guess a Forbes writer's blog qualifies as the press).

I just heard an extremely ignorant Anderson Cooper abuse Andrew Wakefield on CNN. At the end of the 11 minutes Wakefield was starting to turn things around. If Wakefield has the courage to take that abuse, other advocates for reality should be ready to take it on, also.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Reply to Forbes Bad Article on XMRV

I'd like to hear your tactics... for dealing with the press promoting bad information (and I guess a Forbes writer's blog qualifies as the press).

I just heard an extremely ignorant Anderson Cooper abuse Andrew Wakefield on CNN. At the end of the 11 minutes Wakefield was starting to turn things around. If Wakefield has the courage to take that abuse, other advocates for reality should be ready to take it on, also.

Hi Spinhirne,

I've just recently begun trying to formulate a strategy on how I might best deal with bad information put out by the press. I'm starting by stumbling along the best I know how; I just posted this on the Forbes piece a few minutes ago. (I tried to be polite, even though I was fairly PO'd when I wrote it. LOL)

Wayne

Mr. Salzburg,

Your article certainly seems to have been written by someone with an agenda. Re: your assertion:

XMRV (Xenotropic murine leukaemia virus-related virus) is the virus in question – the one that Mikovits claimed is the cause of chronic fatigue syndrome.

To be clear, Judy Mikovitz and WPI have NEVER claimed XMRV is the cause of CFS. Your stating otherwise is an egregious error, something I would think you would be very careful not to do, given you’re writing for a prestigious organization such as Forbes.

You make other various kinds of misleading and controversial assertions. It certainly seems like you’ve never taken the time to get input for your article from either Judy Mikovitz or WPI. If you had, you would certainly have been much better positioned to write a balanced article. Why not give it a try? See what they have to say.

http://www.wpinstitute.org/news/docs/WPI_XMRV_010111.pdf
 

leelaplay

member
Messages
1,576
hi all, I think this was originally posted here http://genome.fieldofscience.com/2011/01/searching-for-cause-of-chronic-fatigue.html and Forbes jsut copied Prof (??!!) Salzburg's post. If I had more braincells at the moment, I'd love to send comments with all the science and great quotes, including from Coffin and one or 2 of the other authors, that have come up since the publication of "the contamination" papers. This guy seems to have missed them. Slow catch-up after the Xmas break maybe?

Wouldn't it be great if he realized what a fool he's made of himself, like Racaniello did, and like a real scientist, and a real man, admit that he wrote before he thought or had looked into the science and was wrong.
 

lancelot

Senior Member
Messages
324
Location
southern california
I just heard an extremely ignorant Anderson Cooper abuse Andrew Wakefield on CNN. At the end of the 11 minutes Wakefield was starting to turn things around. If Wakefield has the courage to take that abuse, other advocates for reality should be ready to take it on, also.

Anderson is only reporting the facts and this has nothing to do with ME/CFS. stop using our community to support your false beliefs with wakefield. he is a fraud just like the weasel.

As far as this forbes blog, who cares? is forbes an authority of health related issues? go post and educate the author=the end. Besides, you have to undertstand this is America where everyone is FREE to post their views without government censorship. We want to hear from all sides don't we? Always remember that in the end, the truth shall always prevail in the good ole' USA!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi, I just posted this to Forbes:

With special regard to the Hue paper, and contamination issues in general, nothing that has been published has proven the problem is contamination. I have read the Hue paper too.

They and others have only proven, yet again, that contamination is a possibility. This was already well known to retrovirologists, especially MLV researchers. There is nothing new here of any interest. XMRV researchers routinely test for contamination, and they design the experimental protocols so that if contamination occurs it will be obvious. The cases of contamination that have been reported are because everyone is checking. If contamination was such a big problem, why do so many studies using PCR finding nothing at all? The real issues lie elsewhere, and are not being debated in the media very much.

In any case none of the other methods used in the research have this problem, and they are used much more widely than simple PCR. PCR is a dead horse in this area. It like debating that a horse and cart is bad because of wheel ruts in the dirt roads, while jet airliners are cruising overhead. PCR is mostly being continued, in my view, because it is useful toward developing standardized high throughput mass blood screening for use in blood banks. We need to protect the blood supply, and banning ME/CFS patients from donating blood is not addressing the real problem, the masses of infected but currently healthy people.

Alex Young, aka alex3619
B.Sc. (biochemistry), B.Inf.(hons)
ME/CFS research advocate
 

Deatheye

Senior Member
Messages
161
Bhaa thanks for the terrible morning.. Worst article I've read for a while....
And the first and only comennt right now isn't anything bether. I wonder how he came to that conclusion even after Reading the Hue et al paper and the retraction.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I think the best way is to prove them wrong through finally producing the scientific evidence necessary for that.
Until then, there will always be people writing things we don't like. And as long as they don't coss the line of what's allowed under the law we can't and also should not keep them from doing that. Of course we can post comments, so that other readers know there are also other viewpoints, and maybe in some cases they might even see themselves that they were wrong.
But in the end only more evidence will make the decision.

And in case a statement is made, like in this article, that is in my opinion not true and hurts the reputation of a person or an institution like the WPI, they are free to take legal action against the author.

As far as Wakefield is concerned, i think we should be careful. I'm not a scientist and don't know much about his study (studies?), but i don't think it's a good idea if we suppot the wrong people, i mean charlatans, fraudsters etc.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
I think the best way is to prove them wrong through finally producing the scientific evidence necessary for that.
Until then, there will always be people writing things we don't like. And as long as they don't coss the line of what's allowed under the law we can't and also should not keep them from doing that. Of course we can post comments, so that other readers know there are also other viewpoints, and maybe in some cases they might even see themselves that they were wrong.
But in the end only more evidence will make the decision.

And in case a statement is made, like in this article, that is in my opinion not true and hurts the reputation of a person or an institution like the WPI, they are free to take legal action against the author.

As far as Wakefield is concerned, i think we should be careful. I'm not a scientist and don't know much about his study (studies?), but i don't think it's a good idea if we suppot the wrong people, i mean charlatans, fraudsters etc.

I'm sorry, but where are people 'supporting' charlatans and fraudsters and 'wrong people'?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
It might be like that in the case of Wakefield, but like i said, i can't judge it. But i would recommend being cautious.

We should not provide people with a chance to make us look bad. And supporting people who might have faked evidence might be dangerous in that regard. Just like i don't think it's smart to attack people like Dr. Dusty Miller in such a way as it happened on another forum.

In the end it won't make much of a difference, if XMRV is confirmed. But if it's not, and we are still in the situation that we have to convince people, i think we should look serious.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
It might be like that in the case of Wakefield, but like i said, i can't judge it. But i would recommend being cautious.

We should not provide people with a chance to make us look bad. And supporting people who might have faked evidence might be dangerous in that regard. Just like i don't think it's smart to attack people like Dr. Dusty Miller in such a way as it happened on another forum.

In the end it won't make much of a difference, if XMRV is confirmed. But if it's not, and we are still in the situation that we have to convince people, i think we should look serious.

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.
 
Messages
13,774
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.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
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.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
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