Ruscetti Acknowledges Reuse of WB Image

[Bob]

Hi, Some seem worried about the different treatment of controls from patients. Let me draw attention to the ScienceInsider quote:

"Mikovits described how she had treated cells from two CFS patients with a chemical, 5-Azacytidine, that takes methyl groups off DNA."

The bolding is mine. The facts are only coming out slowly and too many are leaping to unsubstantiated conclusions, either for or against various points of view.

Two patients tested differently? My guess is this was a test of an idea that they weren't sure about but ran anyway. Since it was only two patients it was way too small to include as any kind of evidence in the Science paper and was quite rightly omitted in my view. If scientists had to explain everything in minute detail then they might as well be submitting video logs of everything they do. This was not a significant factor at the time of publication of the Lombardi paper.

Later on they realized this could be important, which is why I think it was mentioned in Ottawa. Since this is minor evidence it is more proper to discuss this at a conference than in a major paper.

This whole episode is a non-event blown up to something major by media coverage. If there is a problem then the investigation by Science will uncover it, and I trust them more than I do unsubstantiated accusations. Wait for their report.

The real news is that Dr. Judy Mikovits is no longer with the WPI. This has real ramifications. This includes changes made to the research capacity at the WPI and issues over research rights.

Bye
Alex

Yes I agree Alex...

Although the 5-aza issue doesn't look particularly good to me at this point, I think that we really need to understand the whole picture before we jump to any conclusions.

 

[Angela Kennedy]

@joshua levy, and actually, sam carter, LSJ, ecoclimber etc.

have nothing to apologise for! I was reserving judgement on the idea the slides were the same, based on my own rational scepticism, and the fact they looked a bit different to me, but I really didn't know, which I admitted. I was, and remain, quite right to be concerned about the unsubstantiated claims being made, anonymous images turning up from nowhere.

Abbie Smith's bad behaviour and bad faith attempts to ruin a scientist's reputation remains the case- even more so now! She is wrong about so much else. I'm not at all wrong about that.

I know of at least one occasion where there was a discrepancy in Simon Wessely's data that was pointed out, and we have a whole load of discrepancies from the PACE trial. When are you going to get concerned about those? **********Moderation: Text removed. Please refer to the PR forum rules for appropriate and respectful posting.

 

[*GG*]

forum modification

I think we could use "don't like this post"

GG

 

[Angela Kennedy]

Well, the Ottawa conferences was something like 2 years after the Lombardi paper. So your theory is that the made a first draft of the slide, and then a later draft was used in Lombardi, and then two years later, they mistakenly used the earlier draft in putting together the presentation for Ottawa? Does that sound likely to you? It seems really, really unlikely to me. I suppose it's possible. If you are really desperate to construct a chain of events where the mistake is one of sloppiness and not malfeasance, maybe it is the best you can do. It's the exact opposite of Occam's razor.

Remember that there were at least two types of labels that were all changed. The patient numbers, I agree are pretty meaningless. But the 5-aza labels are very important. And I think there was a third label, but am not sure.

Joshua (not Jay!) Levy

Shock horror! People use material and images from work they've been doing for years! Quick, call the police!

I think Joshua may not be so aware of the world of academic research. Seriously, this is a schoolboy error on his part.

 

[dannybex]

I don't see you claiming certain people related to psychogenic explanations and the PACE trial have 'lost credibility'. You do not imply or declare fraud or scientific misconduct, even though the evidence of multiple and severe discrepancies in methodology and claims based on those have been available on this forum for months.

I can't speak for Sam, Eco, etc., but IMO, I would guess that it's hard to lose credibility when it was never there in the first place.

d.

 

[Enid]

I just find it difficult to believe any scientist would intentionally set out to dupe (or resort to fraud) and ruin their professional reputation/credibility forever.

 

[Ecoclimber]

...I know of at least one occasion where there was a discrepancy in Simon Wessely's data that was pointed out, and we have a whole load of discrepancies from the PACE trial. When are you going to get concerned about those?...

I would not expect those comments frankly from people claiming knowledge about scientific process- but the same applies to this discrepancy in an image at a conference! It shows your bad faith that you DO behave SO inconsistently.

For number one, I don't live in the UK, you do. This is America. I have limited knowledge of what goes on in another foreign country let alone the UK concerning ME patients. I am not totally sure what PACE is quite frankly. But I do know that Simon Wessley dictates policy that is totally abhorrent to ME patients. He is totally incompetent in regards to this issue. He has caused the suffering and death of many UK patients with his psycho-babble nonsense. He probably needs psychiatric care more then most. He has ties to disability insurance companies specifically Unum that drive his agenda more or less. So I can't figure out why UK patients cannot find a UK researcher that will help you guys. You do have your own representatives. If he worked here, there would probably be a class action law suit under the RICO Act, Racketeer Influenced and Corrupt Organizations Act which has been used successfully by some patients to go after disability insurance companies.

I agree completely about your analysis concerning Simon Wessely and Pace.


Eco

 

[citybug]

In addition to the addendum, and everywhere in the paper saying the cells were activated, WPI had a link with a ton of information about methods at the time and also said they would share all their information with any scientists interested in doing the research. And they have given a lot of slide talks to researchers including this one.

 

[currer]

Hi Eco,

The British government actively promotes the psychiatric interpretation if ME, and has done so for a generation despite several high profile deaths of sufferers from their physical symptoms and the increasing prevalence of this disease in the population.

Our government's control is also evident in the reporting of the recent XMRV link to ME. The Alter paper, for example, was completely suppressed. I would be astounded if any GPs in this country had even heard of this paper.

We cannot bring any kind of legal case on behalf of sufferers without MEDICAL EVIDENCE that the psychiatric model for this illness is wrong. Research into the biomedical basis of ME has been blocked for years and only psychiatric investigations funded - so we have no medical evidence.

This is why nothing CAN be done here to change the situation, and why the work of American researchers like Judy Mikovits is so important to us.

This appalling history also makes us very suspicious of the motives of those who attack the credibility of researchers like Judy Mikovits who are uncovering a biological cause for this disease.

Conspiracy theories abound because to authenticate ME would lead to extra expense for the Treasury, which has to pay welfare benefits to the long term sick.

In fact, (and I have to be secretive here, too,) I have been told by those who know about policy making on this subject in Britain that the politics in this field is massive and misguided.

For number one, I don't live in the UK, you do. This is America. I have limited knowledge of what goes on in another foreign country let alone the UK concerning ME patients. I am not totally sure what PACE is quite frankly. But I do know that Simon Wessley dictates policy that is totally abhorrent to ME patients. He is totally incompetent in regards to this issue. He has caused the suffering and death of many UK patients with his psycho-babble nonsense. He probably needs psychiatric care more then most. He has ties to disability insurance companies specifically Unum that drive his agenda more or less. So I can't figure out why UK patients cannot find a UK researcher that will help you guys. You do have your own representatives. If he worked here, there would probably be a class action law suit under the RICO Act, Racketeer Influenced and Corrupt Organizations Act which has been used successfully by some patients to go after disability insurance companies.

I agree completely about your analysis concerning Simon Wessely and Pace.


Eco

 

[Sam Carter]

@joshua levy, and actually, sam carter, LSJ, ecoclimber etc.

...



I know of at least one occasion where there was a discrepancy in Simon Wessely's data that was pointed out, and we have a whole load of discrepancies from the PACE trial. When are you going to get concerned about those? Oh wait, you're a Specific Issue Antagonist - cherry picking in your 'scientific' concerns. Massive discrepancies in research that could cause the death of ME/CFS patients don't even cross your radar. I don't see you claiming certain people related to psychogenic explanations and the PACE trial have 'lost credibility'. You do not imply or declare fraud or scientific misconduct, even though the evidence of multiple and severe discrepancies in methodology and claims based on those have been available on this forum for months.

I would not expect those comments frankly from people claiming knowledge about scientific process- but the same applies to this discrepancy in an image at a conference! It shows your bad faith that you DO behave SO inconsistently.

Angela,

I've put many thousands of hours of work over the last five years into deconstructing the PACE Trial and I do consider it a kind of scientific fraud; I had a letter criticising the FINE Trial published in the BMJ; I've challenged the pseudoscience of Mickel Therapy, Reverse Therapy and the Lightning Process.

This might in fact make me a kind of Specific Issue Antagonist, just not the sort you allege.

Could I suggest you amend you post? It's more than a little wrong.

Sam

 

[Bob]

I've put many thousands of hours of work over the last five years into deconstructing the PACE Trial and I do consider it a kind of scientific fraud; I had a letter criticising the FINE Trial published in the BMJ; I've challenged the pseudoscience of Mickel Therapy, Reverse Therapy and the Lightning Process.

Many many thanks to you Sam, for helping our community.

 

[Bob]

For number one, I don't live in the UK, you do. This is America. I have limited knowledge of what goes on in another foreign country let alone the UK concerning ME patients. I am not totally sure what PACE is quite frankly.

I appreciate that you can't get involved in everything Eco, but if you ever wish to find out more about the PACE Trial, then please feel free to ask. We definitely need as many people as possible to expose it.

The PACE Trial is an outrageous example of worst scientific practises, and I don't know if I can use the term 'fraud' in the legal sense, but in every other sense it stinks.
They have managed to turn a failed study, whereby CBT makes no significant difference to physical disability whatsoever, and on average all patients are left severely disabled at the end of the trial, into one in which it is widely reported that 30-40% of patients 'recovered'. This is a complete lie. In fact the 'recovery' data has not been released.

When patients complain about the study, we are told that we are 'extremists' (even Prof Malcolm Hooper has been accused of this), and legitimate complaints have been dressed up as 'threatening behaviour'. And the scientific establishment say we are being ungrateful because it is a 'gold standard' study.

Even the Lancet has erroneously reported a 30% 'recovery' rate, in the accompanying comment, and although they have acknowledged the mistake, they will not take the mistake off their website.

I wish more people would turn their attention to the PACE Trial, because it as good as proves that ME is not a psychological illness, and that ME does not respond to psychological interventions.

Severely ill patients were not included in the study, however the authors say that the results (which they still insist are wonderful) should be equally applied to all ME patients. The PACE Trial's sister project, the FINE Trial, demonstrated that psychological interventions are of no long-term value to severely ill patients.

Then there is the issue of not using internationally recognised entry criteria... I could go on all day...

 

[Sam Carter]

I appreciate that you can't get involved in everything Eco, but if you ever wish to find out more about the PACE Trial, then please feel free to ask. We definitely need as many people as possible to expose it.

The PACE Trial is an outrageous example of worst scientific practises, and I don't know if I can use the term 'fraud' in the legal sense, but in every other sense it stinks.
They have managed to turn a failed study, whereby CBT makes no significant difference to physical disability whatsoever, and on average all patients are left severely disabled at the end of the trial, into one in which it is widely reported that 30-40% of patients 'recovered'. This is a complete lie. In fact the 'recovery' data has not been released.

When patients complain about the study, we are told that we are 'extremists', and the scientific establishment say we are being ungrateful because it is a 'gold standard' study.

Even the Lancet has erroneously reported a 30% 'recovery' rate, in the accompanying comment, and although they have acknowledged the mistake, they will not take the mistake off their website.

I wish more people would turn their attention to the PACE Trial, because it as good as proves that ME is not a psychological illness, and that ME does not respond to psychological interventions.

Severely ill patients were not included in the study, however the authors say that the results (which they still insist are wonderful) should be equally applied to all ME patients. The PACE Trial's sister project, the FINE Trial, demonstrated that psychological interventions are of no long-term value to severely ill patients.

Then there is the issue of not using internationally recognised entry criteria... I could go on all day...

Great summary of the PACE Trial problems, Bob! There are so many of them I'm not sure I would know where to start ... or where to finish

 

[Angela Kennedy]

Angela,

I've put many thousands of hours of work over the last five years into deconstructing the PACE Trial and I do consider it a kind of scientific fraud; I had a letter criticising the FINE Trial published in the BMJ; I've challenged the pseudoscience of Mickel Therapy, Reverse Therapy and the Lightning Process.

This might in fact make me a kind of Specific Issue Antagonist, just not the sort you allege.

Could I suggest you amend you post? It's more than a little wrong.

Sam

Sam, are you actually called, in real life, Sam Carter? Because I've never seen your comments or work on PACE, FINE, or the Lightning Process.

If not, then I have nothing to go on except your claim. That has to be unreliable because you are therefore an anon, if you are not actually Sam Carter, and you cannot produce the evidence to support your claim of all this work.

But you have shown a tendency towards the Specific Issue Antagonist type with regard to detracting Lombardi et al, this latest farce with these images.

This is a prime example of why more people should use their real names on these forums, and be brave enough to stand by their comments. I do. If I get things wrong, I get things wrong. But I don't make claims I cannot substantiate.

 

[Angela Kennedy]

I should point out that I have put thousands of hours work into analysing the PACE trial also- since it began. I do have a specific expertise of the literature pertaining to this, as well as to key people working on it publicly (as opposed to pseudonyms or anons).

That's not a claim to authority by the way- but it is relevant here.

 

[Wonko]

With respect Angela you are not a member of a discriminated against group, I am a member of several, I am a pwME, I dont work, and even worse I claim to be too ill to work. With my actual name along with the other information about me on this forum it would be easy for anyone who wants me to find me and take actual personal action against me - the facilies exist as they have been used against others by our wonderful government, and given I'm in a group our government has decided to specifically target i would rather be annonimous if thats ok with everyone.

 

[Bob]

Sam, are you actually called, in real life, Sam Carter? Because I've never seen your comments or work on PACE, FINE, or the Lightning Process.

If not, then I have nothing to go on except your claim. That has to be unreliable because you are therefore an anon, if you are not actually Sam Carter, and you cannot produce the evidence to support your claim of all this work.

But you have shown a tendency towards the Specific Issue Antagonist type with regard to detracting Lombardi et al, this latest farce with these images.

This is a prime example of why more people should use their real names on these forums, and be brave enough to stand by their comments. I do. If I get things wrong, I get things wrong. But I don't make claims I cannot substantiate.

I don't know Sam well, but he is not as you are describing him Angela.
Sam is a legitimate member of the forum, and I find him reasonable, friendly and engaging.

 

[Bob]

With respect Angela you are not a member of a discriminated against group, I am a member of several, I am a pwME, I dont work, and even worse I claim to be too ill to work. With my actual name along with the other information about me on this forum it would be easy for anyone who wants me to find me and take actual personal action against me - the facilies exist as they have been used against others by our wonderful government, and given I'm in a group our government has decided to specifically target i would rather be annonimous if thats ok with everyone.

In case you weren't aware, Angela was not directing her comments at you Wonko.

But I do agree that some people need to remain anonymous on the forums. Not everyone can be as forthright as Angela.

And just for the record, Angela is a member of a discriminated group. She is the parent of a child with ME.

 

[Angela Kennedy]

With respect Angela you are not a member of a discriminated against group, I am a member of several, I am a pwME, I dont work, and even worse I claim to be too ill to work. With my actual name along with the other information about me on this forum it would be easy for anyone who wants me to find me and take actual personal action against me - the facilies exist as they have been used against others by our wonderful government, and given I'm in a group our government has decided to specifically target i would rather be annonimous if thats ok with everyone.

Actually Wonko, I'm not demanding that other people immediately start using their full name, because I do understand the problems- only too well- of what you are saying. I've been personally attacked in many ways because of my own determination to use my own name and openly stand by my own actions in supporting the ME/CFS community.

Nevertheless, this is a major problem that I'm describing. There is no easy answer, but it means this community needs to develop extra vigilance and rational scepticism on these forums against agent provocateurs, and one way to do this is to look at the amount of 'Specific Issue Antagonism' going on.

But what I cannot do, and none of you should, is just accept blindly, without challenge, when random anons claim to be 'scientists' and have 'special knowledge' of situations, or focus on attacking Judy Mikovits and accusing her of fraud, misconduct, and of being a bad, bad girl, while ignoring something as important as the discrepancies of the PACE trial.

P.S. I am a member of a number of discriminated groups actually! But I understand what you mean.

 

[Sam Carter]

Sam, are you actually called, in real life, Sam Carter? Because I've never seen your comments or work on PACE, FINE, or the Lightning Process.

If not, then I have nothing to go on except your claim. That has to be unreliable because you are therefore an anon, if you are not actually Sam Carter, and you cannot produce the evidence to support your claim of all this work.

But you have shown a tendency towards the Specific Issue Antagonist type with regard to detracting Lombardi et al, this latest farce with these images.

This is a prime example of why more people should use their real names on these forums, and be brave enough to stand by their comments. I do. If I get things wrong, I get things wrong. But I don't make claims I cannot substantiate.

I'm unreliable, a coward, an "anon", the maker of unsubstantiated claims and a Specific Issue Antagonist (specialising in farces).

Such flattering appelations, Angela. If I update my CV accordingly, will you provide a reference?