Chicago Tribune: Manipulation alleged in paper linking virus

[LJS]

http://www.chicagotribune.com/health/chi-chronic-fatigue-syndrome-paper-10032011,0,6792877.story

What I giant mess, the reputation of the whole institute is almost unrecoverable because of Mikovits actions. They should have looked into her claims well over a year ago when the red flags started showing up everywhere.

 

[ixchelkali]

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.

 

[Angela Kennedy]

Amazing how a research trial with MULTIPLE, SERIOUS discrepancies in methodology; in which dangerous claims are made about efficacy and safety; which patients and supporters are extremely concerned about; and in which the medical journal who published the trial publicly attacks those concerned with the discrepancies; and in which the medical journal's ombudsman, who has a known conflict of interest because he co-authors with one of the trial authors, does not even answer complainants: is ignored, while an allegedly incorrect image from a conference presentation is treated as serious misconduct, enough to report in a large newspaper, before the facts have even been established.

I'm talking of course about the PACE trial.

 

[Esther12]

It looks like there's some reason for additional concern about that slide.

A copy of it just got posted here:

http://forums.phoenixrising.me/show...ming-out-today&p=209691&viewfull=1#post209691

I don't really understand it properly, but it could be that Trine's instincts were right.

 

[Angela Kennedy]

It looks like there's some reason for additional concern about that slide.

A copy of it just got posted here:

http://forums.phoenixrising.me/show...ming-out-today&p=209691&viewfull=1#post209691

I don't really understand it properly, but it could be that Trine's instincts were right.

Can you explain more Esther? Because Trine Tsouderos's article looks like a cherry-picking, prejudicial, hyperbolic account of a possible non-event at the moment.

 

[Esther12]

Trine has been willing to cherry pick quotes/evidence to create a narrative which emphasises the quackiness of Mikovits, and the unreliability of her results and claims.

The new slide posted would seem to indicate some serious dishonesty in the presentation of results in the Science paper.

 

[Angela Kennedy]

It looks like there's some reason for additional concern about that slide.

A copy of it just got posted here:

http://forums.phoenixrising.me/show...ming-out-today&p=209691&viewfull=1#post209691

I don't really understand it properly, but it could be that Trine's instincts were right.

Now I've seen this, I find the "Trine's instincts were right" comment even MORE mystifying Esther! Some image has gone up on 'teh internets'?

 

[Angela Kennedy]

We seem to be going down THIS path...

http://www.youtube.com/watch?v=TAFVALRWDyk

 

[Esther12]

Now I've seen this, I find the "Trine's instincts were right" comment even MORE mystifying Esther! Some image has gone up on 'teh internets'?

It could be that...

If that image is authentic, and it would be a strange thing for someone to fake, as the WPI are almost certain to still have the original available for confirmation.

 

[ukxmrv]

I don't really understand it properly, but it could be that Trine's instincts were right.

Esther,

Why don't you wait until you do understand things properly before commenting?

 

[Esther12]

Esther,

Why don't you wait until you do understand things properly before commenting?

Because others have been commenting in support of the WPI and Mikovits (or one of the two, now that there seems to be some hostility between them).

If we only make supportive comments prior to having all the facts, then we're going to sway the discourse in an unjustified manner, and may mislead others.

 

[Nielk]

I agree with Esther that we have to keep an open mind here. You cannot keep supporting an institute or a scientist just because you like what they are saying. Something major happened here and you can be pretty sure that the issue is not whether Judy was willing to share cell linings with other scientist. There had to be a bigger reason for the WPI to let her go allegedly with the NIH grant. What does the WPI have left now? Things don't add up and the fact that there are inquiring minds is only natural..

 

[Angela Kennedy]

I agree with Esther that we have to keep an open mind here. You cannot keep supporting an institute or a scientist just because you like what they are saying. Something major happened here and you can be pretty sure that the issue is not whether Judy was willing to share cell linings with other scientist. There had to be a bigger reason for the WPI to let her go allegedly with the NIH grant. What does the WPI have left now? Things don't add up and the fact that there are inquiring minds is only natural..

What do you mean 'something major happened here'? This is all speculation and insinuation on your part.

What this community REALLY needs, urgently, are FACTS.

I'm working on FACTS, not emotional attachment to either the WPI or Mikovits.

 

[Angela Kennedy]

It could be that...

If that image is authentic, and it would be a strange thing for someone to fake, as the WPI are almost certain to still have the original available for confirmation.

But what if it's NOT authentic? You always encourage people not to believe everything on forums, etc. Why should people scrap that reasonable caution NOW?

 

[ukxmrv]

Esther,

You are not appointed or elected here as a devils advocate and we don't need someone to do that. You are choosing to make these comments when you admit that you don't know the science.

By all means talk about your own feelings but please don't keep going on about things with your personal judgements disguised as facts - that you then say you don't know enough about when asked why.

That's not helping things and could easily end up in a newspaper column or being quoted by people who want to exploit the situation.

I'm keeping an open mind on things and being cautious, that doesn't mean I'm jumping at every shadow and taking media reports as fact.

 

[Esther12]

But what if it's NOT authentic? You always encourage people not to believe everything on forums, etc. Why should people scrap that reasonable caution NOW?

I'm not saying that they should scrap that reasonable caution. I've not.

I don't know what to make of this new bit of evidence yet, and have tried to emphasise my own uncertainty (I expect that there are individual posts where I have failed to do this fully - but I have done so repeatedly in these discussions). But this new image does make the IACFS/ME slide more of a problem.

 

[Esther12]

Esther,

You are not appointed or elected here as a devils advocate and we don't need someone to do that. You are choosing to make these comments when you admit that you don't know the science.

By all means talk about your own feelings but please don't keep going on about things with your personal judgements disguised as facts - that you then say you don't know enough about when asked why.

That's not helping things and could easily end up in a newspaper column or being quoted by people who want to exploit the situation.

I'm keeping an open mind on things and being cautious, that doesn't mean I'm jumping at every shadow and taking media reports as fact.

The fact that I've been so open about my own limited understanding should mean that no-one takes any of my own opinions as facts.

There are some patients who claim considerable expertise on these matters - yet post transparent nonsense. An awareness of ones own limitations should not exclude one from the conversation!

 

[Nielk]

What do you mean 'something major happened here'? This is all speculation and insinuation on your part.

What this community REALLY needs, urgently, are FACTS.

I'm working on FACTS, not emotional attachment to either the WPI or Mikovits.

I gree that what we need are real facts but unless you were an ant on the lab in WPI and heard all the conversations going on behind closed doors, there is no way of knowing yet what really happened.
Until that time comes, I'm leaving an open mind and not making any rash decisions.

 

[ukxmrv]

The fact that I've been so open about my own limited understanding should mean that no-one takes any of my own opinions as facts.

Esther, you need to make that clear in each posting as what you write could be picked up by Trine or someone and appear in the press.

Please before it is too late, when you type what you feel make it clear it is a feeling and not a fact.

If you make a prouncement on Western blots and how you think they should look make it clear who you are quoting or why a simple patient would have any idea what the noise should look like (as an example). If you don't have the exprience you must be reading it somewhere and posting it here "as fact" when it is a quote.

At the moment you appear to be prepared to argue one side only and as a simple patient with limited understanding one would ask why.

 

[Esther12]

Esther, you need to make that clear in each posting as what you write could be picked up by Trine or someone and appear in the press.

Please before it is too late, when you type what you feel make it clear it is a feeling and not a fact.

If you make a prouncement on Western blots and how you think they should look make it clear who you are quoting or why a simple patient would have any idea what the noise should look like (as an example). If you don't have the exprience you must be reading it somewhere and posting it here "as fact" when it is a quote.

At the moment you appear to be prepared to argue one side only and as a simple patient with limited understanding one would ask why.

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 being constantly watched, and could be taken as representatives of all CFS patients. When many patients are already so disabled and isolated, many are only able to express themselves and reach out to others through forums like this, and it seems really callous to make that harder for them just to add some colour to an article. 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.