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Trial by Error continued is PACE a case of research misconduct

Snowdrop

Rebel without a biscuit
Messages
2,933
@jodie100

Put it this way. Is there not anything that can be said by you about inaccuracies, inconsistencies coming from Esther Crawley or others. What about the nephrology conference where she was teaching others how to avoid being accountable by denying freedom of info requests by calling them vexacious. Or intimating that her job working as an ME researcher is comparable to someone being shot out of a cannon at a fun fair. All researchers should expect criticism of their research at some point. She was quite welcome by D Tuller to respond regarding the libelous blog she accused him of. Still waiting.

I haven't seen one good word from you on David Tuller.

In order for anyone in the UK to start getting appropriate research and treatment the motives of the BPS need to be exposed and their clinging to GET/CBT as the gold standard which it is by default there being no real treatment available (other than what one can get to treat symptoms if lucky) --they keep pushing the narrative because they want to prevent change from happening.

Advocacy will never be perfect. D Tuller has shown he's willing to be corrected when factual errors are pointed out. How about a little appreciation for the work and a raised voice for pointing out the egregious inaccuracies of PACE --you seem to be good at parsing out exact details. Where's the love for the ME community and all of us here who struggle every day. And we continue to struggle thanks in part to PACE.

Do you disagree with DT's overall conclusions on PACE?
 
Messages
2,087
Are you seeking to argue above that the time families spend caring for people with M.E. should be valued at zero? On what basis do you suggest this?
You are also failing to report the most important comment by Professor McCrone in his responses to comments on the article. His main point was "What should be stressed above all else is that there is uncertainty around all of these cost and outcome estimates and therefore the acceptability curves are the more informative indicators of the relative cost-effectiveness of these interventions." I feel it is highly irresponsible to be discussing it in the manner you are when it is obvious you do not understand it ."

Jodie could you clarify your point around valuing time at zero - my understanding is that this is what the authors proposed - I could have misinterpreted your comment though.

Just curious why you choose to defend that statement by McRone as being the most important - perhaps it is but if there is so much uncertainty isn't the logical question to ask why the paper was published, or at least question the results?
 

MEPatient345

Guest
Messages
479
Here's the response to all this from david on Facebook, in case some people aren't on FB:
---------
I know there's been some concern about the comment on the most recent blog post--that some can see it and others can't. I have checked in the system and can see the comment there. I don't know why it's not appearing. I suggest that Jodie100 repost it. I'm pretty stupid with technology so it's possible something happened that I don't understand, but I hope reposting it solves the problem. I would never remove a comment just because it was critical of me or my work.

In terms of the substance of the comment, I want to thank Jodie100 for pointing out mistakes. I’ve never pretended to be infallible. I make mistakes sometimes, so I appreciate having readers alert me to inaccuracies. I don’t particularly enjoy having to correct things, but of course I do that when I have to. In fact, in this case the corrections make it clear that the PLoS One article has more problems than I had indicated.

The main analysis is NOT the one promised in the statistical analysis plan—and they did not explain why they made that switch, as they are obligated to do. Moreover, while I mistakenly assumed they included the zero-cost assumption in their sensitivity analyses, the fact that they did not, as Tom Kindlon pointed out in his comments. They need to provide adequate reasons for such major changes—they can’t just make changes because they want to, without a really, really good explanation. I'm not sure why Jodie100 seems to have no problem with such blatant and unexplained outcome-switching. Professor McCrone's statement that it is hard to know how to measure these things is not an explanation for why they switched everything around. Researchers are supposed to follow their own protocols and statistical analysis plans.

As for whether they misrepresented the results of the sensitivity analyses, they clearly did. They claimed the sensitivity analyses proved the results were “robust” under the alternative assumptions, and that changing the value of informal care made no difference. As Simon McGrath pointed out, that is simply not true with the minimum wage assumption; with that assumption, the cost-effectiveness results from a “societal perspective” are substantially different. And Professor McCrone acknowledged as much in his response—that valuing it at less would change the results. It is pretty straightforward to see that this is a contradiction of the claim made in the paper itself, as both McGrath and Kindlon noted years before I did.

Professor McCrone then provided alternative reasons for relying on the assumption that they did—to value informal care at less than full value was unfair to families. Jodie100 seems to be making the same point, in effect suggesting that the zero-cost assumption is my own idea. I am only highlighting in my post that they said they would do X, Y and Z, and instead did other things. That’s bad science. The point is that the PACE team seems unable to write papers without engaging in outcome switching that appears to present better results than they would have gotten under the methodological approaches they promised in exchange for the five million pounds of taxpayer funds they received.

I disagree 100% with the idea that it is inappropriate to raise the question of research misconduct. The entire PACE enterprise and the various studies are such a mess that it’s obvious this question is floating around and needs to be aired. I and many others have thoroughly documented that the PACE investigators have misrepresented their material interests in the results and have misrepresented the data—including in the PLoS One paper.

Determining if such misrepresentation rises to the level of “research misconduct” is a matter of interpretation of the language in the UK guidelines and whether the self-evident misrepresentations are egregious enough to qualify. I feel it is responsible journalism to let readers know how the UK scientific world defines “research misconduct,” describe the misrepresentations at issue, and pose the question as to whether they rise to that level. The best way to resolve the question and reach an authoritative conclusion is for an investigation conducted by independent experts to thoroughly examine the evidence and the conduct of the trial. I feel comfortable pointing out major misrepresentations and suggesting that such an investigation is needed. Jodie100 thinks I should not raise the question at all without forcefully making the case myself. I just don’t agree.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
@TiredSam I am afraid you have misread my comment.

I'm afraid I haven't.

@TiredSamWhat it is intended to say is some people are distressed or vulnerable , some M.E. activism( referring to the activism style, not individuals) including from people without M.E. is aggressive or ill-informed.

I know. Correcting inaccuracies in David Tuller's work is a valuable service, I appreciate it, as I'm sure he does. Why didn't you just leave it at that? Adding some speculation on the assumed characteristics of various ME sufferers didn't add anything to your message, and using the labelling language and cliches of the BPS brigade was bound to detract from your helpful contribution and put people's backs up.

@TiredSamIt is obviously not trying to apply all those characteristics to everybody or necessarily simultaneously.

Yeah I got that, thanks.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Everyone, I encourage you all to view Dr Nigel Speight's lecture at the CARE4ME Conference.

And then try to convince yourself that Wessely, White, Crawley and the rest of their little club have not committed grave criminal offenses.

The phrase "deliberate indifference" comes to mind.

If I did a brake job on a car, and a brake line was seen to be leaking, and it was pointed out to me, but I sent the car back to the customer who then had a wreck, should I be let off easy, just because I didn't intend to kill anyone?
 
Messages
2,391
Location
UK
David Tuller: Jodie100 thinks I should not raise the question at all without forcefully making the case myself. I just don’t agree.
DT is absolutely right here. If important questions were only ever asked by those fully qualified to answer them, we would still be in the dark ages. I always worry when people insist this is how it should be, because I always feel it to be a psychological sleight of mind to stop people asking questions about things they prefer to remain under wraps.
 

user9876

Senior Member
Messages
4,556
The Plos One article valued informal care at the opportunity cost based on national mean earnings

Even using the mean earnings is misleading because the value is skewed by some on very high wages and high bonuses in the city. The median wage would be more normal.

Then in terms of valuing carer wages maybe to be accurate they should look at below the minimum wage because travel time is often insufficient and it eats into wage levels.
 
Messages
2,125
Everyone, I encourage you all to view Dr Nigel Speight's lecture at the CARE4ME Conference.
Have sent this to all the usual news people;
Towards the end of the presentation Dr Speight talks about the horrific 'treatment' of Emily Collingridge who died in 2013; I found an article in the Telegraph By Naomi Whittingham written about it:
"
Severe ME presents challenges that the NHS is ill-equipped to deal with. Sufferers are acutely sensitive to any stimulation, making the noise and bustle of a busy hospital a form of torture. Sympathetic staff will do their best to ease the agony of sensory stimulation, but there are those who continue to view these symptoms as the patient simply being difficult. Many of us have been so traumatised by being in hospital that we would risk our lives rather than consider admission.

A year before her death, Emily penned an appeal for greater awareness of the reality of living with ME, writing: “I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day.”

Her life was claimed by an illness that, at its most severe, has been compared to Aids and terminal cancer, yet which is trivialised far too often. Right to the end, Emily had to fight against the belief that she ''only’’ had ME."

http://www.telegraph.co.uk/news/health/10137694/Emily-didnt-only-have-ME.html
 
Messages
2,158
Then in terms of valuing carer wages maybe to be accurate they should look at below the minimum wage because travel time is often insufficient and it eats into wage levels.

Does anyone know whether they valued the cost of carers at the rate agencies charge per hour, or the rate carers are paid per hour?

I pay a care agency £13.77 for a carer to come for half an hour. She gets paid £4.50 for that half hour plus mileage allowance, so it probably comes out at less than minimum wage. And it's a zero hours contract with no holiday or sick pay.

I hate having to employ exploited workers, but I have no option for personal care. I employ other people to do cleaning and some other housekeeping and cooking, so at least I can pay them better wages.

If I had a family member available and willing I would not have any of these expenses.

Not sure why I'm going off topic here - probably because I had my PIP medical yesterday, and that's what I rely on to pay for help, though I am lucky to have a pension and some savings.

Apologies for derailing the thread. :oops:
 

JohnCB

Immoderate
Messages
351
Location
England
"This thread has been very aggressive ..."

There is a major difference between being aggressive and assertive. If people always went about saying people were being aggressive, when in fact they were being justifiably assertive ... where would we be? (Answers on a postcard please).

If someone speaks to you face to face and says they disagree with you, that is assertive. If people stand around you in a circle being "assertive", then the situation has become aggressive.

In a rational debate, you really only need to state the disagreement the once, as a rebuttal to the original statement. We don't all need to pile in on top of someone who makes remarks that don't fit with the group ethos. We are rather prone to doing that. In this situation, the debate is no longer rational, but ad hominem by virtue of the repetition.

I know that I have often held my tongue on this forum, as with most of us here I feel quite vulnerable. I do not have the energy to do repeated replies and I suffer badly quite quickly from cognitive overload. I have often ignored remarks that I felt were misjudged where the response I might have made would go against the group-think.
 
Messages
2,391
Location
UK
If someone speaks to you face to face and says they disagree with you, that is assertive. If people stand around you in a circle being "assertive", then the situation has become aggressive.

In a rational debate, you really only need to state the disagreement the once, as a rebuttal to the original statement. We don't all need to pile in on top of someone who makes remarks that don't fit with the group ethos. We are rather prone to doing that. In this situation, the debate is no longer rational, but ad hominem by virtue of the repetition.

I know that I have often held my tongue on this forum, as with most of us here I feel quite vulnerable. I do not have the energy to do repeated replies and I suffer badly quite quickly from cognitive overload. I have often ignored remarks that I felt were misjudged where the response I might have made would go against the group-think.
My line of work is full of strong willed people (I no doubt count as one of them) and our engineering discussions will sometimes get pretty enthusiastic - not always by any means - and if anyone crosses the line it invariably gets reined in.

Personally I don't see anything in this thread that would count as aggression, but I readily admit it is very subjective. An example from this thread would be interesting.

Edit: However rereading your post re repetition, I can see your point. Trouble is each one of us will have a different contribution some of which will be new but not all.
 
Messages
2,087
We don't all need to pile in on top of someone who makes remarks that don't fit with the group ethos.
I agree with the sentiment of you post but I don't think the issue in this case was primarily because the remarks don't fit the group ethos.

In this particular case I found Jodie's remarks to be quite inflammatory to begin with, there are many ways of pointing out an error, accusing someone of not understanding the situation is wide of the mark, in particular because David Tuller probably understands this situation better than most, and has always indicated a willingness to correct himself when necessary.

Edit: However rereading your post re repetition, I can see your point. Trouble is each one of us will have a different contribution some of which will be new but not all.

I agree - I think this is inherent in forums such as this, we aren't one group we are individuals, repetition by different people is not necessarily ganging up, it is people expressing their opinion.

A thread sometimes has an equal split of opinions but sometimes it doesn't, And when it doesn't I recognise it might be uncomfortable for people if a lot of people strongly disagree with them.
 
Messages
724
Location
Yorkshire, England
I would just add that for many of us, this is a rare place where we socialise and people listen to us, and we are heard, so there is a natural tendency to want to add to the discussion(s). When people make a point and we agree or disagree we like to add nuances that we feel others have left out of their post.

There is also the fact that for some or most, typing out and thinking of their post takes time and effort, and at least for me, there is a will to post it, even if between the starting of the writing and the finishing, someone else has made a similar point. This leads to burst of posts on 'hot' topics with similar subject matter.

Like this post by me now I guess.
 
Messages
1,478
I would just add that for many of us, this is a rare place where we socialise and people listen to us, and we are heard, so there is a natural tendency to want to add to the discussion(s). When people make a point and we agree or disagree we like to add nuances that we feel others have left out of their post.

There is also the fact that for some or most, typing out and thinking of their post takes time and effort, and at least for me, there is a will to post it, even if between the starting of the writing and the finishing, someone else has made a similar point. This leads to burst of posts on 'hot' topics with similar subject matter.

Like this post by me now I guess.
I agree
 

JohnCB

Immoderate
Messages
351
Location
England
My line of work is full of strong willed people (I no doubt count as one of them) and our engineering discussions will sometimes get pretty enthusiastic - not always by any means - and if anyone crosses the line it invariably gets reined in.

I worked in engineering too, many years ago. Sure, we had enthusiastic discussions, but we did not, in general at least, all take it in turns to criticise one individual. In a physical meeting, the chair should ensure that doesn't happen anyway. Once a meeting is over most people are able to quickly move on to something else. Worse was where I saw individual customers on their own at site and getting bullied by customer managers (not my own direct experience but I saw the consequences in a colleague). Then the customer complained when he quit.

Here, the computer is part of my home. But it may be a mistake to think that these enthusiastic meetings are innocuous - workplace stress is a very real thing. There is a viewpoint that people suffer CFS like illness for that very reason. Here in ME land we cannot quite from our daily life.

Personally I don't see anything in this thread that would count as aggression, but I readily admit it is very subjective. An example from this thread would be interesting.

It is highly subjective. What the protagonists claim as banter is often perceived by the recipient as bullying. I think any thread where it appears that one individual is repeatedly on the receiving may well have crossed the line. All the strong willed people exposed to this workplace enthusiasm may include people putting on a front and heading for a breakdown.

BTW My contributions here are not about Jodie. My comments are in reference to the claim that there is no aggression. Supposedly the people on the forum are our friends and fellow sufferers and they deserve a good standard of consideration from us at the very least. We don't now how others are affected so we should be erring on the safe side. In the current jargon, this out to be a safe space.

I'm not going to review the thread and dig out an example. That's not my purpose. My purpose is to address the claim that there is not aggression. It is a common problem with internet groups that people feel they can go over the top from behind the safety of their own terminal coupled with the feeling that others beyond the modem aren't quite real anyhow. This isn't a problem specific to PR, and PR is probably better than other forums I have seen, but all the same it does happen on occasion.
 

JohnCB

Immoderate
Messages
351
Location
England
I would just add that for many of us, this is a rare place where we socialise and people listen to us, and we are heard, so there is a natural tendency to want to add to the discussion(s). When people make a point and we agree or disagree we like to add nuances that we feel others have left out of their post.

There is also the fact that for some or most, typing out and thinking of their post takes time and effort, and at least for me, there is a will to post it, even if between the starting of the writing and the finishing, someone else has made a similar point. This leads to burst of posts on 'hot' topics with similar subject matter.

Like this post by me now I guess.

Sure, I know the feeling that I want to post once I have put the effort into typing. I have done it. I have even stated in a post that I am doing exactly that. However most posts don't take so long to type and the gap between other posts is rarely that short (I find it rare to see more than one additional post arrive while I am typing). I know people want to join in and to be heard, but we can tell before we post whether anything has been added to the thread - there is an alert just above the typing box.

We still owe it to our fellow sufferers to show compassion, even if we think they are wrong headed and totally mistaken. I always review and often edit between typing a post and hitting send. I have done that since I was doing email on a 300 baud modem on Compuserve circa 1990. Here we can see other posts in real time. It is reasonable to ensure that one does not cause distress. It isn't necessary to abandon a post. Words can be removed or modified. It is just the situation where there is a burst on a hot topic t
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I agree - I think this is inherent in forums such as this, we aren't one group we are individuals, repetition by different people is not necessarily ganging up, it is people expressing their opinion.
There is a clash between the need for robust discussion and the need to be sensitive to patients and other posters. Its not resolvable without giving up on something.

My own background is in science ... and debates can be quite robust there too. They have to be. Such argumentation is not hostile in science (with occasional exceptions) but part of how it works.

Advocacy can also be perceived as hostile, and sometimes it is, but mostly its just sticking to trying to move things forward.

There are indeed people who use ad hominem and emotional arguments on ME and CFS matters. Stick around long enough and you will see it occasionally.

There are indeed people who cannot handle such things. Many are close to being unable to operate a computer at all, they are too sick.

In many cases if there is a problem in focus resulting in clashes then its a good idea to separate various parts of the thread into alternative threads. Other than that I don't see any workable solutions.

There will always be problems, and its regrettable, but I cannot see a way around it that satisfies all points of view and all needs. Without robust discussion you can get groupthink, and without consideration of patients you can get hostility, either real or perceived. Very occasionally I have seen examples where you get both hostility and groupthink, though very rare on PR and not so rare some other places - and most of that was some years ago during some very stressful debates. Those of you who were around then might like to think back to the discussions during the XMRV debates.
 
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