The Race to Retract Lombardi 2009...

[Angela Kennedy]

I see how it can feel like bad faith, when some present themselves as fighting for scientific rationalism and Truth, but then shy away from looking at any of the issues of concern to patients... but I think that this is just humans being humans, and a bit lazy and biased. It's fair to criticise it, but I try to also be understanding and forgiving - I'm sure I make some highfalutin claims for myself that I utterly fail to live up to too - we all have our own interests, and areas of shameful ignorance and disinterest.

Sadly I think it is more than just 'human laziness'. For just one example, the BS thread in itself is predictable in how key players there respond -which is always in perverse attacking of ME/CFS sufferers and their supporters. The attacks on me and others in the ERV blog recently are predictable too- in that one can predict the form they'll take. While some people may be just exercising their humanity in being lazy and biased- the specific strategies adopted on those blogs/forums appear organised, because of its predictable ferocity against people.

That's more than laziness and bias- at the very least we have laziness and bias confounding the effects of hostile astroturfing/ideological 'trolling' on the BS thread alone - let alone the ERV blog and her hostile, personalised attacks on Mikovits.

 

[Lee]

Let me get this straight.

Anyone who doesn't go study and absorb the multiple publications and subsequent ongoing, decade-long controversy about the PACE trials and their analysis and subsequent use, and who after examining them doesn't to the same conclusions you come to - anyone who doesn't do that, but who comments on other aspects of ME/CFS science where they have some expertise, but in ways that you disagree with.. those (us...) people are lazy, biased, perverse, guilty of "hostile astroturfing/ideological 'trolling' " and can therefore be dismissed and ignored out of hand.

And that is such a reliable diagnostic that it can be brought out in any conversation, on any subject - say, a conversation on calls for retraction of Lombardi 2009... and it will by definition be relevant, because anyone who doesn't agree that it is relevant isa troll and harmful to 'patient interests.' So it's GOOD that the PACE topic drowns out the other conversations, because who wants to listen to those people anyway - they disagree with 'patients.'

That about right, Angela?

 

[Angela Kennedy]

Let me get this straight.

Anyone who doesn't go study and absorb the multiple publications and subsequent ongoing, decade-long controversy about the PACE trials and their analysis and subsequent use, and who after examining them doesn't to the same conclusions you come to - anyone who doesn't do that, but who comments on other aspects of ME/CFS science where they have some expertise, but in ways that you disagree with.. those (us...) people are lazy, biased, perverse, guilty of "hostile astroturfing/ideological 'trolling' " and can therefore be dismissed and ignored out of hand.

And that is such a reliable diagnostic that it can be brought out in any conversation, on any subject - say, a conversation on calls for retraction of Lombardi 2009... and it will by definition be relevant, because anyone who doesn't agree that it is relevant isa troll and harmful to 'patient interests.' So it's GOOD that the PACE topic drowns out the other conversations, because who wants to listen to those people anyway - they disagree with 'patients.'

That about right, Angela?

No. Completely wrong Lee.

As I would now expect from you, sadly, a complete ad hominem misrepresentation of my reasonable concerns (and that of other members of this community), in order to completely disregard them.

You can't even bring yourself to acknowledge that people have grave concerns about the PACE trial, and that those concerns might be justified. You can't even feign interest in what people might be worried about, and how there is a gross discrepancy between the impassivity, sanguinity, and uncritical acceptance of the PACE trial, while demanding Mikovits' head on a plate for something that was done to a slide on a powerpoint presentation, and why people might be concerned at that gross discrepancy in attitude: let alone apply any genuine scientific interest.

So much for the 'science'.

Interestingly, I see you've taken offence at my discussion of the BS thread and ERV blog comments (that is what you were responding to, and attempting to misrepresent my views on). You obviously see yourself as one of those, and that is important, because it indicates where you are coming from.

 

[kurt]

Until there is sound biomedical evidence that ME is a physical (not psychiatric) disorder these debates will multiply endlessly.

There is no substitute for sound biomedical research.

There already is abundant biomedical evidence that ME is a physical and not psychiatric disorder. We are getting more and better evidence now, but there has been evidence for a long time now.

Personally I think we are victims because we have very few advocates, we suffer from lack of acceptance, more than lack of evidence. Medicine is a territorial profession, nobody likes to share resources with new diseases. Total lack of humanity in medicine, which is really sad.

 

[kurt]

MOD - please keep to the topic and discuss the topic and do not insult forum members. Nobody is better than anyone else here, everyone has the right to their views, we do not allow personal attacks on this forum (See the forum rules).

 

[Lee]

"You can't even bring yourself to acknowledge that people have grave concerns about the PACE trial, and that those concerns might be justified."

Acknowledged: People have grave concerns about the PACE trial and those concerns might be justified. Angela, please stop attributing to me your fantasies about what I might be thinking. And stop attacking me personally - stick to the science. I thought that was one of the rules here.

"You can't even feign interest in what people might be worried about, and how there is a gross discrepancy between the impassivity, sanguinity, and uncritical acceptance of the PACE trial, while demanding Mikovits' head on a plate for something that was done to a slide on a powerpoint presentation, and why people might be concerned at that gross discrepancy in attitude: let alone apply any genuine scientific interest."

This is the same attack on me that you just said I am not justified in claiming you are making - if I won't discuss the PACE trial with you in the way that you want, then my contributions about anything else become unscientific.

"So much for the 'science'."
You're an arbiter or the ME/CFS community, AND for science? Bully for you. Stop burying the discussion with irrelevant, off-topic flooding about PACE, an d perhaps you 'll find that there is science being discussed in these threads

 

[Lee]

kurt:

My apologies for contributing - there comes a point whee the incessant attacks (from just a couple people) need to be responded to, and I reached that point.

 

[Bob]

"So much for the 'science'."
You're an arbiter or the ME/CFS community, AND for science? Bully for you. Stop burying the discussion with irrelevant, off-topic flooding about PACE, and perhaps you'll find that there is science being discussed in these threads

If the subject of the thread is about the retraction of a scientific paper, then I don't think it's off-topic to discuss the wider issue of retractions, and to use other papers as examples of inconsistency.
Also, Lee, you have been burying the science yourself, with your own very strong opinions which are not supported by the known facts.
If you would stick to the science yourself, you might find that you don't provoke such a strong reaction.

 

[currer]

When it is a question of the MEDICAL sciences, it is important to incorporate a respect and concern for patient welfare into the approach to a subject.

We need to acknowledge that this is where science and the humanities interact, where there are important ethical imperatives, otherwise harm can be done.

I am disturbed by your approach, Lee, because you frequently reveal an attitude which does not acknowledge the questions we discuss on these threads ultimately affect the welfare of real people, for whom we should have respect.

It is important to listen to the patient's story.

A medical/scientific approach which fails to do this rapidly becomes abusive, because of the inherent power imbalance between patients and the medical establishment, as we can see in the PACE dispute.

 

[Lee]

"there are important ethical imperatives, otherwise harm can be done."

Yes. This is precisely why data falsification disturbs me so much , and in part why there is no such thing as 'minor' data falsification.

This effects people's lives - do it right. If JM sasy that there is evidence that 5AZA induces viral expression that is not seen in patients without induction, and you show us a gel that claims to have uninduced and induced patient samples, and here is the gel that demonstrates it - she better show us uninduced and induced patient samples.

Telling us that it doesn't matter because - 'trust me - the uninduced patient samples looks just like controls, and I know i just lied to you about this being a patient sample, but trust me on this. It does.' Really - is not science, and it is not respecting the impact of the science on patients lives.

JM lied to patients and scientists about what her data was. When I insist that it is never ok under any circumstance to lie to patients or scientists about the data, I'm told I'm not respecting the patients? Because, look, here is the PACE trial where we claim that scientists might have lied about their data, and look how disrespectful to patients that is?

Really?

 

[JT1024]

Lee and others,

I cannot come on the site a refute everything. Simpy do not have time or resources/

Despite that, I totally support Dr Mikovits and Ruscetti.

Wish I was up to providing more detail at this time but I am not.

Everyone is entitled to their pinion. AI know where I would invest my $$ if I had them!

 

[Bob]

It is important to listen to the patient's story.

A medical/scientific approach which fails to do this rapidly becomes abusive, because of the inherent power imbalance between patients and the medical establishment, as we can see in the PACE dispute.

Yes, it is the patient perspective (some patients - not all) that understands why a retrovirus could be a good fit for this disease, and why some of us are so interested in seeing the possibilities, that the initial research raised, being fully explored.

I hope that non-patients can take a bit of time to try to see things from a patient's perspective to understand this.

 

[Bob]

JM lied to patients and scientists about what her data was. When I insist that it is never ok under any circumstance to lie to patients or scientists about the data, I'm told I'm not respecting the patients? Because, look, here is the PACE trial where we claim that scientists might have lied about their data, and look how disrespectful to patients that is?

I think that I've said consistently that we do not know the full circumstances of the omission, and so we should wait for the results of the Science investigation.
I think this is what many of us want - We don't wish to accuse (and in your case, condemn) the authors prematurely, without knowing the facts.
Yet you continue to repeat your opinions over and over again, as if they are the whole truth, as if you have some sort of special hot line to the Science editors.

 

[biophile]

Still working on a response for the more off-topic issues, but I am still willing to consider evidence from Lee, who anecdotically claims Mikovits actually admitted to outright data falsification in person in public in front of lots of people! Since I was not present at the conference when that allegedly happened, and cannot find a reliable URL to investigate these claims (not that I've looked much), how can I know? I'm not criticizing Lee in particular here (yet), it's just that it seems there are so many assfacts floating around in the ME/CFS world, assfacts which are presented to us as a matter of fact with minimal evidence that we are supposed to swallow uncritically lest we be accused of tin-foil hat conspiracy theories and hatred for anyone who disagrees with us.

P.S. - I recently showed a picture of an actometer with a neutral mannered explanation about the background of the PACE Trial actigraphy situation to a good friend who doesn't know much about ME/CFS or PACE and believes in psychological factors and would have no problem accepting that these therapies may help or even cure the condition. His response [edit: towards the reason given by PACE as to why actometers weren't used again at 52 week followup] was: "that's a bullshit excuse".

 

[Bob]

Still working on a response for the more off-topic issues, but I am still willing to consider evidence from Lee, who anecdotically claims Mikovits actually admitted to outright data falsification in person in public in front of lots of people!

Mikovits and/or Ruscetti have been quoted in an online article as admitting omitting the detail that 5AZA was used on a specific Western Blot test which was published as an image in the Science paper (fig 2c). The Science editors are carrying out an investigation into the facts surrounding this. We don't know all the details surrounding why this detail was not included, except that Mikovits/Ruscetti said it was not 'germane' to the study. It was a small part in a very complex study, so I think it is premature to judge the situation without knowing the full facts. It could have been an editorial decision for all we know.

The other issue is that some negative lanes in the same Western Blot image were re-labelled to indicate a difference test with negative results. Lee says that this is misleading, and that the actual negative results should have been shown to the reader. Whereas to me, this just looks like a space-saving short cut. It might have been sloppy, but I can't see that it is misleading because they were using a negative result to indicate a negative result.

Anyway, it is being investigated, and it's irrelevant what we think about it because we don't know the full facts (e.g. what demands were being placed on them by the peer reviewers and the editors - remember that they had to carry out loads of extra work for the peer reviewers, and there was pressure to save space due to editorial restrictions).

 

[Bob]

P.S. - I recently showed a picture of an actometer with a neutral mannered explanation about the background of the PACE Trial actigraphy situation to a good friend who doesn't know much about ME/CFS or PACE and believes in psychological factors and would have no problem accepting that these therapies may help or even cure the condition. His response was: "that's a bullshit excuse".

Yes, well, we do know what the truth is regarding the actometers, don't we biophile.
They were ditched for the same reason that the Chalder Fatigue scoring was changed from bimodal to likert, and the same reason that all of the proposed protocol analyses were ditched in favour of the messed-up 'post-hoc' analyses.

 

[Lee]

Bob:

"I can't see that it is misleading because they were using a negative result to indicate a negative result."

This continues to astound me, it really does.
here, let me try again.

Lets say a patient goes to his doctor, and says, 'Doc, I did something really stupid 5 months ago with someone I met in a bar. Two weeks later I got what felt like flu, and now I notice my glands are swollen. i suspect I may have been infected by HIV. Can you test me?"

SoDoc taeks a blood sample,and sends it to the clinical lab, and a week later the clinical lab sends back a report saying "HIV negative", with teh test results attached.

But the doc takes a look at the actual test results, which are labelled 'HIV Test Results, and notices that it is actually a negative test result for Syphilis.

So he calls the lab, and says, "This is wrong."

The lab tells Doc, "That's ok. Trust me, he's negative. We just substituted one negative result for another, and relabeled it so it loos like an HIV test result."

""It simplified the slide primarily for a patient audience," the Lab says. "This is not in anyway inappropriate for a presentation as long as the data are correct, and they are.""

-----------

As a doctor, or a patient, are you going to now trust that result?

The entire point of the slide i question, at the presentation in Toronto, was a comparison of a patient negative without 5AZA, to a patient positive with 5AZA. But there was no 'patient negative without 5AZA' data on the slide. None. She relabeled a control negative to look like a negative patient sample, and told her 'primarily patient' audience that it was a patient negative. The key comparison she told us that slide showed us, did not exist anywhere on that slide, even though she told us it did.

None of this is opinion. She did it. its a fact. That's a quote up there from Mikovits in the Nature article of a couple weeks ago.. She told us she was showing us a patient negative without 5AZA, as one part of THE key interpretation of that slide, but she showed us no such thing, and she knew it. She justified it.

That is data falsification. By definition - false presentation of data.

And having seen it, i don't trust that point, or that scientist, any more than I would trust the HIV test result, or the lab that lied about the result they falsely labelled and sent and said, 'trust me, you aren't infected.'.

 

[Angela Kennedy]

@Bob:

"I can't see that it is misleading because they were using a negative result to indicate a negative result."

This continues to astound me, it really does.
here, let me try again.

Lets say a patient goes to his doctor, and says, 'Doc, I did something really stupid 5 months ago with someone I met in a bar. Two weeks later I got what felt like flu, and now I notice my glands are swollen. i suspect I may have been infected by HIV. Can you test me?"

SoDoc taeks a blood sample,and sends it to the clinical lab, and a week later the clinical lab sends back a report saying "HIV negative", with teh test results attached.

But the doc takes a look at the actual test results, which are labelled 'HIV Test Results, and notices that it is actually a negative test result for Syphilis.

So he calls the lab, and says, "This is wrong."

The lab tells Doc, "That's ok. Trust me, he's negative. We just substituted one negative result for another, and relabeled it so it loos like an HIV test result."

""It simplified the slide primarily for a patient audience," the Lab says. "This is not in anyway inappropriate for a presentation as long as the data are correct, and they are.""

-----------

As a doctor, or a patient, are you going to now trust that result?

The entire point of the slide i question, at the presentation in Toronto, was a comparison of a patient negative without 5AZA, to a patient positive with 5AZA. But there was no 'patient negative without 5AZA' data on the slide. None. She relabeled a control negative to look like a negative patient sample, and told her 'primarily patient' audience that it was a patient negative. The key comparison she told us that slide showed us, did not exist anywhere on that slide, even though she told us it did.

None of this is opinion. She did it. its a fact. That's a quote up there from Mikovits in the Nature article of a couple weeks ago.. She told us she was showing us a patient negative without 5AZA, as one part of THE key interpretation of that slide, but she showed us no such thing, and she knew it. She justified it.

That is data falsification. By definition - false presentation of data.

And having seen it, i don't trust that point, or that scientist, any more than I would trust the HIV test result, or the lab that lied about the result they falsely labelled and sent and said, 'trust me, you aren't infected.'.

Oh dear God! (speaking as an atheist)

A labelling of a research slide in a powerpoint presentation - or even a research paper, is NOTHING like a laboratory test result in a clinical setting!

**********

You REALLY think the two situations can be compared, even though it's been shown that Coffin was aware of the 5AZA situation, indicating that this relates to a peer review process of a PAPER, NOT a clinical patient's test result, even though deciding what to put in and keep out of papers to keep with peer-reviewers' recommendations is a complex issue and aclinical test on a single patient is on the other end of the complexity spectrum. You are STILL claiming she presented data 'falsely'.

Wow.

 

[Angela Kennedy]

If the subject of the thread is about the retraction of a scientific paper, then I don't think it's off-topic to discuss the wider issue of retractions, and to use other papers as examples of inconsistency.
Also, Lee, you have been burying the science yourself, with your own very strong opinions which are not supported by the known facts.
If you would stick to the science yourself, you might find that you don't provoke such a strong reaction.

Thank you Bob. As this thread IS about retractions, the PACE trial IS relevant here, which is why I believe other people brought it up, and why I've responded.

 

[Lee]

"That you are trying to compare the two shows how little you know about research!"

I give up. Go ahead and continue to believe and argue that it is normal in science, perfectly ok and even appropriate, to intentionally show data that one knows is not what she says it is.

All I can say is, if science really worked that way, it would have made my experiments and papers one hell of a lot easier to do and write. Probably all of them would have been full of unrepeatable false data and claims, but never mind - it's less confusing that way.

I'm done - I'll leave you all to keep explaining to each other why the science doesn't disagree with what you want it to be saying, and how appropriate and supportive it was of Judy Mikovits to not to risk confusing you by actually showing you the data she said she was showing you.