Michael Sharpe skewered by @JohntheJack on Twitter

This could be a different tack. Ask whether MS believes it's OK for people with ME to donate blood or organs for transplant.

ETA: on second thinking he might just say he hasn't the expertise to judge yes or no.

 

MS insists ME/CFS self-report measures are adequate "because that is how the illness is defined". Can he clarify how it is that an illness which so impacts people's real/actual (i.e. not perceived) physical capabilities, can be defined to take no account of that.

 

They've already answered that with their mediation analysis. It's because it agrees with their theory that CFS is a "subjective" condition.

 

Maybe making a final comment (yours) and not ask a question rather than giving MS the final word on his terms. So, stating that he did not adequately answer questions regarding outcomes and recovery numbers (perhaps with a link to why they are suspect) would be a better option.

 

OK, so ask how PACE proved that CFS is a subjective condition, not an objective one.

 

This...absolutely this.

 

Probably... But I just. can't. stop!
https://twitter.com/user/status/999343238128553985

 

I would ask:

"You and your co-investigators have publicly said - on more than one occasion - that all changes to the analysis of the trial outcomes were independently approved by the Trial Steering Committee. Can you tell me on what date the TSC approved the decision to lower the SF-36 physical function score to 60 as part of the recovery criteria - and can you please quote the exact justification for this change (as recorded in the minutes of the relevant TSC meeting)?"

 

Sharpe thinks questions in parliament about ME and PACE are unhelpful...
https://twitter.com/user/status/997496853427052544

https://twitter.com/user/status/998572441013313536

https://twitter.com/user/status/999331184634101762

 

What I don't get is how a bunch of supposed scientists can supposedly "test" a theory by only acknowledging results that (very weakly, given bad trial methodology) support that theory, and disregard everything else. Surely the whole point of real research is to try and disprove your own theory, and rejoice in your own success if you fail to do so; and rejoice in the success of the scientific process if you do disprove it. It's called good science.

 

Good science is critical rationalism, ala Popper. They seem to practice positivism, or one of its variations. Shore up as much data showing you are right, and ignore everything else ... its up to someone else to show that you are wrong, and with this much data showing you are right ....

Its very old school "science" that I think (and I could be wrong) every scientific discipline has abandoned, since the late 50s or early 60s.

This addition of points without other consideration is how politics is played, or rhetorical persuasion in general.

 

Indeed
This time they may have taken enough rope to hang themselves with, people will have dire conditions who are "misdiagnosed", increasing numbers of international news stories of people dying form treatable diseases will make a big dent, but the fact that many people will have to suffer or die to discredit obvious lies is unconscionable

This is ridiculous, as a scientist he is supposed to search for the truth no matter how personally uncomfortable. Only answering one question, attaching self serving conditions, giving vague answers, ignoring data he doesn't want to see is not in keeping with the Hippocratic oath or a scientists responsibility to the truth.

I would ask what would it take to convince him that ME/CFS is a biological condition that requires medical treatment in the same vein as MS or AIDS or Parkinsons.


If he says it is not or nothing than he is admitting he is a reality denier.

If he says something ridiculous then he has painted himself into a corner which can be used to refute him later.

His likely answer will be our research says what it says. Reality deniers explain away anything they don't want to know because if they didn't then they would not be denying reality. Its typically useless to engage with them because you might as well argue with a brick wall

 

It's a bit worrying that twitter can create a misleading impression of engagement and discussion, but that the pertinent points can be ignored and so disappear. Authority figures can also amplify the attention given to the points that they want to engage with, helping to shape public perception of their critics. At least it seem that the new longer tweets allow for some real points to be made though.

Was Sharpe really just endorsing the view that having a parliamentary committee examining his work is some sort of harassment?

I think any emphasis on the 'is ME a biological condition?' question is likely to be unhelpful. Even just raising it plays into so many prejudices about ME patients/PACE critics, and I've never seen it lead to an interesting discussion either. Is schizophrenia a biological condition in the same vein as Parkinsons? Does it matter?

 

If so too bad, they ultimately control the purse strings and his credibility

Its raised because we are shut out of recognition, research money and in many cases subjected to harmful treatments due to his lies.
That said as i mentioned reality deniers by definition will not answer truthfully, hence there is little point in trying to change their minds. That said ignoring them is not the best idea either, lets them control the narrative, and that convinces the masses quite successfully
I support "skewering" them but not trying to convince them, its a waste of energy we don't have.

 

Random question for MS ; has he seen 'Unrest', what did he think of it?

 

He has, but he deleted his tweet about it (thread here)...
https://twitter.com/user/status/989765181658906625

 

No, me neither...
https://twitter.com/user/status/999551530771591169

 

He's right, but misleadingly so. PACE assumed people had a physical disabillity (deconditioning) entirely recoverable from if people could be fixed psychologically. So the point about PACE and BSP'ism for PwME, is not that the condition is assumed to be entirely psychological, but that recovery from ME/CFS is blocked due to entirely psychological problems. And therefore deemed that recovery from ME/CFS is entirely feasible with psychological treatments alone. A fine distinction, but crucial, which MS is skating around. Maybe Carol Monoghan needs to be made aware of this?

 

I don't think that you'd be able to find a quote of them saying this. They normally phrase things carefully, giving themselves plenty of wriggle room, and if people then go too far in their criticism it can easily back-fire. I think that it's so difficult to get the language right on this issue that it's normally counter-productive to even raise it (unless you happen to be writing some 100 page document that has time to go into all the details, but that sadly few people will ever read!)