Chicago Tribune: Manipulation alleged in paper linking virus

[Angela Kennedy]

Personally, I think the way that Trine plucks forum posts from patients to illustrate her articles is disgusting - precisely because it can lead to the sort of self-censorship and restrictions you suggest. She should allow patients to discuss and express their views without feeling like they're representatives of all CFS patients. However, I don't think that we should try to shape our discussions in a way that avoids giving any quote which can be taken out of context and misrepresented - it would be almost impossible for us to do so.

Also - there are already an awful lot of quotes from patients that could be used to make us look terrible. At least Trine isn't trying to set us up to look insane (so far).

re Western blots looking the same - the new image we have includes an additional control lane, which clearly features different artefacts to the first. It does not require any expertise to realise that the artefacts on the two identical images were identical.

I'm presenting my own views on these matters - I suppose that could be called arguing one side. but sure you do the same? - As does everyone else. I try to keep emphasising my own uncertainty, and that I don't know what all this means, but still want to explain to other why I think this new image is problematic.

But Esther, some random image has turned up anonymously on the internet from nowhere that we know.

Perhaps we should start putting up pictures of cats, and saying they show Judy Mikovits is a witch with a familiar called behelzee-bubbles?

 

[SilverbladeTE]

When are folk gonna wake up and realize any damn positive research into ME is going to be deliberately sabotaged, researchers' reputations ruined, etc, hm?

Very powerufl people want all this to GO AWAY...and anyone bloody stupid or naive enough to think that cannot happen in ""Science", I suggest you go look at what's been going on, or often NOT going on, with Gulf War Syndrome...and Autism...and even Cancer (exactly how common do autism and cancer have ot get before folk realize the pot of water they are in has finally reached boiling point?)
and for easy grasp of this, go see how groups like "JunkScience" (ha, perfect name for 'em) trash Global Warming, and who funds JunkScience?

 

[Nielk]

I don't know why people are picking on Esther. She is just writing her thoughts on the subject. She keeps reiterating that it's only her opinion. This is not a court case here. It's just a forum where members should feel free to express their opinions. No one here needs to be an expert to have permission to express what they feel. If you are going to start censoring what you say because you are afraid what the press is going to pick up, we might as well shut this forum down.

 

[Esther12]

But Esther, some random image has turned up anonymously on the internet from nowhere that we know.

Sure - it could be a fake. I think we should all acknowledge that. If it is a fake, I think that it will be easily debunked as such. I'm eager to get some official comments on this, and see what's going on, but I don't think we should just assume it's a fake until then.

When are folk gonna wake up and realize any damn positive research into ME is going to be deliberately sabotaged, researchers' reputations ruined, etc, hm?

CFS, and a lot of other illnesses (although cancer seems to be treated as well as anyone could hope though - even if there is still a lot of prejudice around all ill and weak people) are treated badly.

CFS in particular has been a quack magnet, and a lot of poor quality research has been used to jusitfy the mistreatment of patients - but retroviruses are treated seriously. This was never going to be about 'CFS', but about the risk of a retrovirus being passed on through the blood supply. People may not care about CFS, but they do care about that.

Maybe at first, I felt that there was a danger that the mere association with CFS could mean that early negative studies were given more weight than they should have been - but following Lo/Alter, there was no doubt that this was being treated seriously. I don't see any reason to think this is a cover-up.

 

[Angela Kennedy]

Esther, the rational response is scepticism here. As I said. If I put up a picture of a random, anonymous cat from the internet, and said it was Judy Mikovits's familiar behelzeebubbles, I would expect you to be more sceptical! For various reasons of course, but one of which is, it's a random, anonymous picture of a cat!

The many objections that can be made to your beliefs that retroviruses in ME/CFS were being taken seriously are too many to say in this particular thread, but have been made many times before, even on this forum. And it's not relevant to this thread really. We'll be in danger of thread drift, which I don't want to see, as this issue in itself is of enough significance.

 

[Esther12]

I don't know why people are picking on Esther. She is just writing her thoughts on the subject. She keeps reiterating that it's only her opinion. This is not a court case here. It's just a forum where members should feel free to express their opinions. No one here needs to be an expert to have permission to express what they feel. If you are going to start censoring what you say because you are afraid what the press is going to pick up, we might as well shut this forum down.

Thanks Nielk. I had just been telling Eco that you sometimes need a thick skin to post about a contentious subject on a forum... luckily I'm calloused all over. I'm happy to have others explain why they think I'm wrong.

I am a bit knackered by it all though, so think now is time for a break and a lie down.

I hope everyone else is doing okay.

 

[FancyMyBlood]

When are folk gonna wake up and realize any damn positive research into ME is going to be deliberately sabotaged, researchers' reputations ruined, etc, hm?

Very powerufl people want all this to GO AWAY...and anyone bloody stupid or naive enough to think that cannot happen in ""Science", I suggest you go look at what's been going on, or often NOT going on, with Gulf War Syndrome...and Autism...and even Cancer (exactly how common do autism and cancer have ot get before folk realize the pot of water they are in has finally reached boiling point?)
and for easy grasp of this, go see how groups like "JunkScience" (ha, perfect name for 'em) trash Global Warming, and who funds JunkScience?

Please, there is no cover-up or conspiracy going on in this case. Stop connecting non-existent dots.

In retrospect, Coffin and many others actually deserve an apologize from the many people that tried to discredet his motives and attack his character. And while I really hate to say this because of the awareness she brought to ME/CFS research, Mikovits seems the one to blame here.

 

[ukxmrv]

I don't know why people are picking on Esther. She is just writing her thoughts on the subject. She keeps reiterating that it's only her opinion. This is not a court case here. It's just a forum where members should feel free to express their opinions. No one here needs to be an expert to have permission to express what they feel. If you are going to start censoring what you say because you are afraid what the press is going to pick up, we might as well shut this forum down.

I'm not trying to censor Esther or stop her posting

What I have asked her to do is make clear in her posts when she is posting her own "amateur patient opinion" on things like Western Blots which she says she knows nothing about or when she is quoting from a media source, text book or similar.

Esther is completely entitled to her opinions and entitled to express them here. It's only fair for her to let us know when they are just an amateurs opinion and when they are something she has read and is repeating (like making pronouncements about how background noise, artefacts etc should look like). An amateur wouldn't know.

Being open minded is a great way to be here.

 

[Wildcat]

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Esther12: At least Trine isn't trying to set us up to look insane
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No, Esther, But, Trine Tsouderos HAS set us up to look as though all ME sufferers are now resentful and dismissive about WPI and ME retrovirus work per se! -
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Trine has done that by selectively quoting a post from Phoenix Rising!

Trine Tsouderos quoted: Patients in online forums reacted swiftly. I have been a big supporter of WPI, sending them a lot of money whilst having only little. But this is very serious. At best they are incredibly sloppy and disorganized, one person wrote on the Phoenix Rising forum


I do not comment on the science, as I am not sufficiently knowledgeable to do so. But I have no hesitation in commenting on the ME politics, double speak, and journalism, as I am sufficiently qualified to do so.
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At this highly critical point, posts based purely on feelings are not helpful.

 

[Angela Kennedy]

Please, there is no cover-up or conspiracy going on in this case. Stop connecting non-existent dots.

In retrospect, Coffin and many others actually deserve an apologize from the many people that tried to discredet his motives and attack his character. And while I really hate to say this because of the awareness she brought to ME/CFS research, Mikovits seems the one to blame here.

Oh wow. The evil Mikovits meme, and poor, victimised Coffin: the same guy who likened Mikovits to Joan of Arc, patients to religious fanatics, and scientists as reasonable executionists only recently?

This whole post of yours is based on emotions (your own) and not fact. We need some facts please.

 

[Wildcat]

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But it is a serious issue that rotten journalists such as Trine, who selectively quote from ME forums, could create an environment in which we are all feeling censored in our rights to have normal forum discussions (for and against) all the issues that so affect our own lives.

 

[ukxmrv]

Yes, it is Wildcat,

But we are chosing the post on a public forum. We are also chosing to post on a forum that she has lifted quotes from as well.

That's why some patients are only posting to closed forums.

It's not a good state of affairs.

 

[FancyMyBlood]

Oh wow. The evil Mikovits meme, and poor, victimised Coffin: the same guy who likened Mikovits to Joan of Arc, patients to religious fanatics, and scientists as reasonable executionists only recently?

This whole post of yours is based on emotions (your own) and not fact. We need some facts please.

It's not about my emotions at all. If it was based on emotions I would support Mikovits, because regardless how small the likelihood of her continueing ME/CFS research is becoming, I'm sure Coffin won't do any ME/CFS research at all now XMRV is dead.

But instead my post is based on facts. Initially Coffin was supportive of the Lombardi paper, but as science advances it became clear to him XMRV was just a lab artifact and was probably not associated with any human diseases. Mikovits on the other hand kept 'believing' in XMRV and now in retrospect several of her statements are clearly wrong, or very 'muddy' to say the least.

About the alleged statements Coffin made about patients and scientist, I've never heard any of them and if true I condemn them, but I don't want to see the crocodile tears from people in the ME/CFS community that did the exact same to him and other scientists and patients.

 

[ukxmrv]

FancyMyBlood,

If Coffin is so fair, evenhanded and trust able why hasn't he commented on how the Silverman VP62 contamination error has impacted on the papers he co-authored or refers to?

That's what I would be expecting him to do.

 

[FancyMyBlood]

FancyMyBlood,

If Coffin is so fair, evenhanded and trust able why hasn't he commented on how the Silverman VP62 contamination error has impacted on the papers he co-authored or refers to?

That's what I would be expecting him to do.

Good question, but I'm afraid I can't answer it.

I hate to use this logical fallacy (appeal to authority) but since I'm not a (retro) virologist and the subject seems pretty complex (at least to me) I think you should ask it to real (retro) virologist.

 

[floydguy]

It's not about my emotions at all. If it was based on emotions I would support Mikovits, because regardless how small the likelihood of her continueing ME/CFS research is becoming, I'm sure Coffin won't do any ME/CFS research at all now XMRV is dead.

But instead my post is based on facts. Initially Coffin was supportive of the Lombardi paper, but as science advances it became clear to him XMRV was just a lab artifact and was probably not associated with any human diseases. Mikovits on the other hand kept 'believing' in XMRV and now in retrospect several of her statements are clearly wrong, or very 'muddy' to say the least.

About the alleged statements Coffin made about patients and scientist, I've never heard any of them and if true I condemn them, but I don't want to see the crocodile tears from people in the ME/CFS community that did the exact same to him and other scientists and patients.

The question remains whether this is a hatchet job or not. Nobody can withstand one if the powers that be decide to stir one up.

What about Alter/Lo? I've not heard any contamination accusations with them. Can one dismiss HGRV/MLV possibilities without more investigation into their research?

Sorry I don't trust Coffin. I think he's got a different agenda other than solving the mystery of ME. JMHO.

 

[ukxmrv]

And you shouldn't be so quick to defend him, FancyMyblood, until he and all the authors who published negative studies based on finding the VP62 clone answer this.

 

[Wildcat]

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What were John Coffin's views on HIV in 1981?? Totally dismissive, that's what.

 

[Sing]

Trine Tsouderos, the Rita Skeeter of the ME/CFS world (Harry Potter fans will understand). Yellow journalism comes to the science page.

Granted, it's a mess, but Trine Tsouderos will paint it in the worst possible light. If Science decides that there was manipulation, that would be news, but this is little more than reporting rumor. "A copy of her PowerPoint presentation circulating among an email group..." Now, there's a reliable source.

Well, we knew it would get ugly, and that those who are usually not supportive of ME/CFS patients would be all over this, gloating, so it's not surprising.

Wake me when it's over.

ix, you have hit the nail on the head, in my view. Trine as the Rita Skeeter of the ME/CFS world is a perfect comparison. Thanks for helping put this situation into perspective!

 

[Bob]

... Mikovits seems the one to blame here.

Why? What has she done?

Mikovits is outspoken, but that doesn't mean that she is fraudulent.

I can't see what there is to blame her for.