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Dr David Tuller: Prof Sharpe's Intemperate Remarks -For Whom is He Speaking?

Countrygirl

Senior Member
Messages
5,398
Location
UK
http://www.virology.ws/2018/06/25/t...-intemperate-remarks-for-whom-is-he-speaking/

Trial By Error: Professor Sharpe’s Intemperate Remarks–For Whom Is He Speaking?
25 JUNE 2018
By Steven Lubet

Steven Lubet is the Williams Memorial Professor at Northwestern University Pritzker School of Law, where he specializes in professional responsibility and ethics.

Let’s assume that everyone on the PACE team, and all of their colleagues in the biopsychosocial school, always acted in complete good faith. Let’s agree that they all want nothing more than to help ME/CFS survivors, and they sincerely believe that CBT and GET are safe and effective treatments. Let’s grant the claim that they are committed to following where science leads, and they have no desire to cling to preconceived notions. Let’s allow that the methodological problems in the PACE trial were committed in error and were not intended to skew the results.

Let’s accept all of that because (1) it allows us to focus on the important task of encouraging valid research, without the distraction of personalities; (2) the PACE trial and others like it will still fall of their own weight; and (3) it is easier and more persuasive to make the case based on facts and numbers, rather than by challenging the motives of the PACE investigators.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
they are malign
there's famous saying (Heinlein's Razor)

Never attribute to malice that which can be adequately explained by stupidity, but don't rule out malice

from experience, stupidity often becomes malice because they realize they did wrong and then cover it up, which makes it malice

after so long, with many obvious "arse saving" remarks used in things (see "The Legend of Camelford" especially), it's obvious what has been going in that they KNEW they were talking crap and thus it is cold bloodedly malign premeditated abuse
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
https://www.brainyquote.com/quotes/robert_a_heinlein_137026

https://en.wikipedia.org/wiki/Hanlon's_razor

“the use of parliamentary priviledge (sic) to knowingly make libellous comments about a large group of researchers knowing that they can’t respond (U.K. spelling original).”

The number of derogatory remarks made by many about ME and CFS patients is scandalous. Further we now have seen claims that at least some PACE participants were intimidated into giving the answers that were wanted. Where is the forum for raising these issues and demanding answers? Ummm ... here, and other patient forums., and social media in general. I think nearly all long term patients would have even experienced similar derogatory comments from medical practitioners. I know I have. We not only have a right, we have a duty to object to this behaviour, though its fully understandable why we have not made much more of an obvious complaint against most who do this.

We cannot prove malice or deceptive practices in PACE for every case except one, which I keep mentioning. The other cases are suggestive, and very suggestive taken in combination, especially since all the biases are in one direction, but its not proof. That one exception is the use of SD in the calculation of normal on SF36PF data, which is an undefined function on this data set, and known to produce a particular bias, which PDW even wrote a paper about in 2007. We cannot be sure this was malicious, but given the PDW paper we can show it was deceptive. This strengthens the probability that more of the obvious failures were deliberate.

We do not need to show malice or even general deceptive practice however. What we can do is show failure in the trial methodology and analysis, which we have done. Some of these failures are obvious to anybody who looks and can spot fallacies. That would include many scientists, doctors, lawyers and politicians. The main reason there is not more of an outcry is most have never bothered reading the PACE trial. I think they should take MS up on his implied suggestion and actually read what was done. Other failures require a little knowledge, like what data set was used as a reference set for SF36PF, or that the protocol used for the 6 minute walking test also has a known bias.

The main goal is to demonstrate that GET in particular is a poor therapy, and should never be used in ME, and the evidence that supports this. The counter-evidence is weak or irrational, or demonstrates methodological failure. From this we need to demand funding for quality biomedical research.

Now I fully expect there will be a time when we take legal action. Right now this is difficult in many legal jurisdictions, including the UK. That might not always be the case. In legal settings, in civil court, its often the case you do not need to prove things, you have to show them on a basis of high probability. The big issue though is about proving harm. As we know its difficult, and in a legal setting is extremely difficult as there is a requirement for strong evidence. I suspect we may not win many or even any legal cases over such harms in the past. What we can do though is ensure that, given current evidence, anyone prescribing GET in the future faces some kind of disciplinary or legal action. While NICE continues to recommend GET in the UK this will be difficult to do.

I am aware of an anecdotal claim that we are winning many legal cases right now, many of which are not made public due to confidentiality. However these are claims about insurance payouts, not currently about the use of GET. The technology now exists to prove beyond far more than reasonable doubt that we are functioning very badly, far worse than many who get insurance payouts for disability.

Now if there is a properly organised and resourced Royal Commission with appropriate terms of reference all this could change very rapidly. Such an enquiry was unthinkable, but the political climate has changed. We can however be sure there will be enormous political pressure to prevent such an enquiry or severely limit its scope. There is also the problem that someone suitable to run such an enquiry would have to be found.
 
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