The real story about XMRV coming out today?

[Undisclosed]

PS: the information that was posted in the the Chicago Tribune The report included an image purporting to depict lab test results from seven blood samples, including two from chronic fatigue syndrome patients whose blood appears to show evidence of XMRV and five from healthy people whose blood does not.

But the leader of the team that authored the 2009 paper, researcher Judy Mikovits, apparently presented the same figure -- carrying different labels and supporting a different point -- in a talk given at a conference on Sept. 23 in Ottawa.

A copy of her PowerPoint presentation circulating among an email group also reveals an apparent third version of the image, with a third set of labels, when formatting is turned off.

An unamed source has given me the original evidence and information that was sent to Science and reported by the Chicago Tribune. I have in my possession the original power point slides and other evidence consist of mislabeling multiple images. I have asked Cort on whether this information should be posted on this site.

Eco

This slide has now been posted on the internet.

View attachment 6357

http://i56.tinypic.com/23r7fwx.jpg


This appears to be the third version of the slide, with a third set of labels, when formatting is turned off.

 

[Esther12]

I don't really know what I'm looking at, but it looks like that slide shows that the positives from CFS patients had 5-AZA added. It also looks like the negative controls did not have 5-AZA added, so we weren't comparing like with like. That does look pretty bad.

If this was a preliminary test, okay. But this is from the figure they chose to include in their Science paper, seemingly without mentioning the 5-AZA. It looks like something dodgy was going on. I don't thikn I have the interest/energy to commit to trying to understand the details of all this, but it's certainly another reason to be extremely sceptical of any claims being made about XMRV/HGRV until they have been independently validated.

 

[Wildcat]

Ecoclimber wrote here at 11.02 am on the 4th October:

You guys there is an embargo on evidence by Science.That is what I am going to discuss with Cort. This information may not be able to be release legally at this moment. This is what must find out. This person feels for their life. This is why they gave me the evidence. I saw it. It is valid and there has been a manipulation of data as ERV pointed out. You can do the experiment yourself. Eco.




Ecoclimber wrote: ..This person feels for their life.
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You have now totally scuppered any credibility I may have previously and generously accorded to your posts, Ecoclimber.

 

[Wildcat]

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Ecoclimber wrote: "I can tell you this though, that there are a number of research projects in the pipeline which I will not discuss here for fear of the negativity they will receive because they are not part of the WPI"
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Really that statement is just not supportable.
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There are so many patients here who are sceptical of the WPI, and in addition many patients here who support the WPI/XMRV/Mikovits retrovirus work, who are ALSO very interested/supportive of other ME research, as to render Ecoclimber's excuse for non-disclosure totally invalid.

 

[Esther12]

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Ecoclimber wrote: "I can tell you this though, that there are a number of research projects in the pipeline which I will not discuss here for fear of the negativity they will receive because they are not part of the WPI"
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Really that statement is just not supportable.
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There are so many patients here who are sceptical of the WPI, and many patients who support the WPI/XMRV/Mikovits retrovirus work, but who are ALSO very interested/supportive of other ME research as to render Ecoclimbers excuse for non-disclosure totally invalid.

I agree - some of Eco's claims about this forum are unfair. The people here are just a collection of different individuals, many of whom disagree with one another about almost every aspect of CFS, yet I'm not sure that even the most ardent WPI supporter is critical of all non-WPI research. Almost everyone here attracts some negative attention from others. Often, those irritated by a comment are most likely to respond to it - that's the same on most forums.

One needs a relatively thick skin if you are going to post any sort of contentious claim on any internet forum. That's just the way things are. With CFS, most claims are contentious - that's a pain for all of us, but hopefully it will start to change soon.

 

[Firestormm]

Yeah I picked up on that one too kjm. Not sure I know what the hell it means though. So darned kerfuddled now....

This slide has now been posted on the internet.

View attachment 6357

http://i56.tinypic.com/23r7fwx.jpg


This appears to be the third version of the slide, with a third set of labels, when formatting is turned off.

Esther,

Until some answers are forthcoming I would imagine there will be more 'disagreements' in the pipeline on just about every forum. These are particularly trying times especially for non-scientists like me.

I don't mind what the answers are but I would like some and I think the WPI need to be fairer to their supporters to be honest. The enquiries underway will take their time - but nothing prevents the WPI from saying more than they have.

Anyway, enough for me - off for a rest [sigh] ...

 

[Bob]

You guys there is an embargo on evidence by Science.That is what I am going to discuss with Cort. This information may not be able to be release legally at this moment. This is what must find out. This person feels for their life. This is why they gave me the evidence. I saw it. It is valid and there has been a manipulation of data as ERV pointed out. You can do the experiment yourself.

Eco

The accusation is that a presentation slide uses an image from the Science paper.
This is entirely different to the data in the Science paper being manipulated.
Totally different.

edit: Oh, I see, there are different accusations flying around now. I wasn't aware of that.

 

[Esther12]

The accusation is that a presentation slide uses an image from the Science paper.
This is entirely different to the data in the Science paper being manipulated.
Totally different.

Have you looked at the new image?

http://i56.tinypic.com/23r7fwx.jpg

If that's right, then the data in presented in Science was manipulated, and mention of 5 aza omitted.

 

[Bob]

But I am getting to the point of walking away from this patient community and washing my hands from you guys. What will this mean will be the lack of researchers working in this field especially retrovirologist, a lack of funding, and pulling any existing research projects that are currently ongoing of which I am invoked. I a trying to save the community from being exploited but I can just as easily walk away and never look back again at this patient community. I sick and tired of people questioning my motives before I had chance to make due on my promises.

Well, I am grateful for your single handed attempt at saving our community ecoclimber, but to be honest, your posts are so full of negativity and seem to totally lack a constructive approach to improving the situation for our community, that I think the forum and the ME patient community could survive without you.

I don't see why you can't carry out your alleged funding and research projects, without using the forums, if they offend you so much.

 

[Purple]

A copy of her PowerPoint presentation circulating among an email group also reveals an apparent third version of the image, with a third set of labels, when formatting is turned off.

Can you please be more specific as to what "when formatting is turned off" actually means? There is no feature/function in PowerPoint called "Turn off formatting".

 

[Esther12]

Can you please be more specific as to what "when formatting is turned off" actually means? There is no feature/function in PowerPoint called "Turn off formatting".

With powerpoint, you can include images in presentations but format them so that only some of the image is visible. If you have access to the original file, and not just the final slides, then you can view the whole image again.

 

[Bob]

Ecoclimber,

I don't think that it's appropriate for you to air your personal grievances against Judy Mikovits on this forum.

Apart from anything else, she doesn't have the ability to respond to your accusations, as she doesn't use the forum.

I don't know you personally, so I have no idea if any of the stories you tell us have any credibility, so therefore they are not relevent or interesting to me.

To me, it's all gossip, innuendo, hearsay and tittle-tattle.

I don't care if there may have been some vague agreement broken.

There may have been a million reasons why Judy (allegedly) pulled out of any (alleged) agreement, if there was one in the first place. It's all so meaningless.

Also, you contradict yourself. First you say it was Judy's fault, then you say there was too much controversy. So your stories do not have consistency. Not that I'm interested in them anyway.

You say you would have found a "cure" for ME.

If you are not happy with the controversy surrounding your supposed project, then why did you go announcing it and telling everyone about it on the forums? Why not just get on with it quietly.

I kind of resent you telling us all that it was our (the patients') fault that a "cure" for ME was not found because you had to pull out of your supposedly planned project. That's a slightly abusive attitude to take.

You keep on bringing your grievances from the other forum over to this one. This is very tiring for the rest of us, who are not interested in your petty squabbling that you've been engaged in on a forum that we do not visit.

Thank you for tantalising us with info about the large number of research projects in the pipeline, and then telling us that you will not discuss them with us.

 

[Bob]

Deleted (incorrect analysis of the images)

 

[Esther12]

So to me, this is evidence of a simple image mix-up in a slide presentation, and nothing else.

It could just be - but the slide itself only mentions 5-AZA for the positive samples, and the IACFS slide shows only the positive with 5AZA, but now has samples from patients without 5-AZA in two of the slots.

It would need to be a collection of errors of labelling for this to not be problematic for the results presented in the Science paper, especially as the labelling on the original seems closer to the labelling from the IACFS/ME slide than the labelling from the Science paper.

I think that the WPI and Mikovits have handled the controversy around their findings pretty badly, and that this is going to make people more willing to assume the worst of them - but there are now serious questions to be asked about the way they have presented their results. I don't think it would be fair to act as if this is conclusive evidence of result being misrepresented, but it is another reason to be sceptical of claims about HGRV/XMRV and CFS.

 

[Bob]

It could just be - but the slide itself only mentions 5-AZA for the positive samples, and the IACFS slide shows only the positive with 5AZA, but now has samples from patients without 5-AZA in two of the slots.

Oh, yes, I've got confused in my analysis, haven't I!

However, I don't think it needs to be labelled as being 'activated' for Judy to know that her positive controls were activated.

The image clearly has minimal labelling, and so there would presumably be full labelling attached elsewhere.

I don't think it's helpful to speculate based on the labelling of a single slide - it tells us nothing.

 

[ukxmrv]

I'm not following you Esther,

If I was presenting a slide or including one in a paper I would only include the data relevant to what I was trying to say.

What value would be gained from including the extra data?

(and please if you are going to reply with information gleaned from another person or a media report could you include their name or a reference to where you saw it. Then we will know how much of what people "think" comes from these sources)

 

[Esther12]

Oh, yes, I've got confused in my analysis, haven't I! I got it the wrong way around.

However, I don't think it needs to be labelled as being 'activated' for Judy to know that her positive controls were activated.

I have to admit, I feel a bit out of my depth with any attempt at 'analysis' myself.

I think it's all going to be a bit of guess-work until we get statements from the WPI, Mikovits, and maybe Science mag too.

I'm not going to pretend I know what all this means, but until (if) it's cleared up, it's another reason to be sceptical of claims made about XMRV/HGRV.

 

[Angela Kennedy]

..

@ Ecoclimber - "An unnamed source has given me given me the original evidence and information that was sent to Science..."

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Really, Ecoclimber - you will have to do better than that.

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We wish to deal with verifiable evidence here, not innuendo based on hearsay.

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And you have not provided verifiable evidence.

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Thank you Wildcat. This level of innuendo and hearsay is really worrying.

 

[ukxmrv]

No Esther, it's another reason for YOU to be sceptical of the claims made by XMRV/HGRV

I don't feel that way after examining all the evidence. You haven't presented any case for a logical reason for this. You can't explain why something might be important or not in science. It's just your feelings. That's OK but please do not present them as facts.

 

[Angela Kennedy]

Have you looked at the new image?

http://i56.tinypic.com/23r7fwx.jpg

If that's right, then the data in presented in Science was manipulated, and mention of 5 aza omitted.

Where does this new image come from? Who put it up on 'teh internets'?