Michael Sharpe skewered by @JohntheJack on Twitter

CBT? I hear it's good for activity avoidance.

 

Maybe Dr Sharpe should figure out that when several thousand nerdy internet geeks have focused in on his research efforts it is highly likely that a handful of those are more intelligent than him and/or know more about the subject than him. (In fact these people have demonstrated these talents in peer reviewed publications.) And the only people supporting his point of view are three rather sad alternative practitioners in freezing Lapland or the watery wastes of Holland. (I jest a bit there. I am a big fan of these places and their people.)

There are so many different ways in which the PACE study fails that Dr Sharpe has the pleasure of seeing his opponents get into arguments about whose critique is most rapier-like. When a notable lawyer joins the fray he thinks of new reason why it is no good and everyone is quite confused. When his old friend Simon joins in he just writes it off as a dud anyway.

 

Superheroine.

 

Do it!! Do it!! And i'll ask Wessely if he want to meet up for a dandelion and burdock.

 

https://twitter.com/user/status/1008747414407303169

 

for people on twitter there is a google app (for chrome) 'twitter archiver' or for mozilla 'twitter save' addon;

 

Can somebody tell me the max file size I can upload here?

Seems all these screen captures are a bit too bulky. I've only taken the tweets out of the first 200 posts in this thread - ie 10 pages of 67, and even dividing that into two pdf files, it seems it is still too large to upload here.

 

I believe it's limited to 1MB max per file.

 

Would it be easier to start a new thread just for uploading the screenshots? Then you could just upload them as jpegs.

 

Just a suggestion, would it be best to capture the most recent tweets and work backards as the latest exchanges seem to contain the biggest humdingers?

 

I'm using OneNote to capture and paste into Word (to then convert to pdf). Much easier than saving each one as a jpeg.

I'll just trundle through as I'm doing so far. I'm at post 300 now. I can always email the docs to someone else to save for the eventuality that the tweets evaporate at a later date.

 

Not sure if this of any help, earlier I tried copying over some of these links from threads of tweets to read them over at a later date. I'm twitter illiterate so not sure how well they'll work but here they are anyway:


https://twitter.com/user/status/1008731852142710785


https://twitter.com/user/status/1008722131171999744


https://twitter.com/user/status/1007212870080266241


https://twitter.com/user/status/1005748795261554689


https://twitter.com/user/status/1008413427231084544


https://twitter.com/secretspartacus...o/iframe/twitter.min.html#1008683762367041537

https://twitter.com/sfmnemonic/stat...o/iframe/twitter.min.html#1008329868944306180

https://twitter.com/RobertHMcMullen...o/iframe/twitter.min.html#1007278073010704385

https://twitter.com/DrCSGillberg/st...o/iframe/twitter.min.html#1005015724082057216

https://twitter.com/sfmnemonic/stat...o/iframe/twitter.min.html#1007282400458571779

https://twitter.com/richardvallee/status/1008474060706246663
https://twitter.com/WesselyS/status...o/iframe/twitter.min.html#1007505766717231105

https://twitter.com/sfmnemonic/stat...o/iframe/twitter.min.html#1008399982494396416

https://twitter.com/davidtuller1/status/1008410791916126208
https://twitter.com/profmsharpe/sta...o/iframe/twitter.min.html#1008411137162010624

 

I've been saving screenshots of most of MS's tweets for a couple of weeks now. I can start on SW too if you like.

 

I am too slow for this ultralong and exciting thread, sorry. (Could be of interest for communication sociology, though - a forum thread that reports live from a debate taking place on twitter, at the same time commenting on all possible aspects of the debate)

Thus, apologies in advance in case of being redundant.

I posted this as reply to @Robert 1973 to acknowledge his awareness of the precise wordings of the PACE trial - which I unfortunately do not have (too long since I read the paper). I have learned I will refer to alleged "unhelpful" instead of "false" beliefs in the future.

ATM, I would like to try to clarify the aspect in my comment on contradictory premises of the PACE trial re the alleged "unhelpful" illness beliefs by PWME.

[ https://www.s4me.info/threads/micha...ohnthejack-on-twitter.3464/page-64#post-82285 ]

Underlying I think is the assumption that PWME are unwilling to accept a possible psychological factor in their illness, based on an alleged general disapproval of Psychiatry or Psychology, or at least on an alleged fear of being stigmatized. (This became clear in their responses to the PACE critisms. Unfortunately, the PACE defenders' arguments were in part backed by some wordings in the media coverage of the debate, and also to some extent in the social media, e.g. that new evidence of biological abnormalities would prove that ME was a "real" as opposed to a mental illness and the like, ignorig that mental illnesses are also real.)

IMO this assumption about PWME is false. I think many pwme in the first months or years of their illness, when they repeatedly get the information from their doctors that there are no findings directing to a biological cause of their illness, are open to seek psychological consult. Only when this doesn't help and psychologists or psychiatrists won't acknowledge this fact, they begin to mistrust the therapist (as it was in my case).

( @Carolyn Wilshire:would be interesting whether there are studies addressing this issue - also relating to "MUS"/ "Functional Disorders"? -- how high is the actual percentage of patients with these diagnoses generally rejecting psychological explanations of their illness?)

Thus, the question, why people who assume that they detoriate severely from exercise would participate in a trial which investigates the benefits of exercice, is similiarily applicable to the question why peoble who generally dislike psychological explanations of their illness would voluntariliy participate in a trial where they have to undergo CBT.

What does this mean for the understanding of the trial?

Perhaps there a diverse points:

A) That the PACE investigators didn't cling to the BPS narrative of ME/CFS, just believed that GET/CBT would work better than nothing, without an underlying hypothesis/ being able to explain why?

B) That the PACE investigators did cling to the BPS narrative, but saw the possibility of only mildly delusional patients who could improve by GET+CBT?

C) That the trial investigators did cling to the BPS narrative, and based on the contradiction described above, assumed that the majority of trial participants would consist not of ME sufferers, but on sufferers of unspecific fatigue who actually are deconditioned and would improve?

etc.

I will stop here -- the implications of each point should be quite obvious. Sorry for not being able to put this thougts in a shorter form.

 

I think it's fair enough. I fear walking in front of a moving bus, and rightly so - it's a very healthy fear, and is a preservation trait I'm very happy to go along with in such situations. PwME's fear is not "fear of exercise" but "healthy fear of excessive exercise", the threshold (potentially a composite of various factors) varying for each individual. Ignoring rational fears is risky, and the risks have to be considered.