A general thread on the PACE trial!

Just clicked on Richard Bentall's profile to see what he was saying, other than complaining about CFS researcher being so rudely treated, and it was him describing an MP an "amoral sociopath".

https://twitter.com/user/status/1091038356358746118


Then a few accusations of lying, eg:

https://twitter.com/user/status/1091079380607135745


Any double standards there?

 

Bang up to date Cochrane review of trials (includes my own) that included exercise component (various control treatments). Compared to passive control (I guess you'd say this was the counterfactual) benefits for fatigue with no evidence of adverse effects:

Er, no. Bang up to date Cochrane review just of exercise was trashed and withdrawn. The one before that was also seen to be seriously deficient by the Cochrane editorial office and withdrawal was requested.

Dr Bengal sounds as if his next claim might be 'as long as we still have the British Empire things are fine'. And Illingworth is a jolly good batsman.

 

Dr Bentall, not Bengal
(and perhaps something for the Limerick thread?)

 

Sometimes the spellchecker adds a little spice and I leave it like that!

 

more Bentall; thread on membership of ME Society worsening outcome.
https://twitter.com/user/status/1090715502031355906

 

Not sure why it became such an issue with cfs. But ME Society directed a lot of hostility to psychs and it was quite demoralising.

Almost as bad as that Gandhi fella, wot!

 

In NY I was once heading to visit my nephew in Kew Gardens, a neighborhood in Queens. I sent a message to a friend that I was heading there, and auto-correct changed it to Jew Gardens. Now, the neighborhood is popular with members of my tribe, but still.

 

Bentall is a FINE trial author. Now he has allegedly retired from CFS research due to behaviour from patients. That FINE and PACE showed the treatment didn't work couldn't have anything to do with that.

 

evidence that exercise and therapy can help all sorts of conditions

Probably the same worthless evidence?

Exercise is not a good idea for flu, aortic stenosis, haemophilia, osteogenesis imperfect, septicaemia, emphysema, tuberculosis, measles, aortic aneurysm, septic arthritis, ...

 

In fact coeliac is not the only odd one out: https://www.s4me.info/threads/marke...ic-fatigue-syndrome-2018-alaedini-et-al.3167/

 

I'm sure I read somewhere that the NHS is sending the message through the ranks to stop recommending GET, but it will take 2 years to inform all doctors. Was this a dream/nightmare?

Can someone please point me to the place? Heartfelt thanks. Needed ASAP to challenge idiot Consultant.

 

It was probably a dream. It wouldn't take 2 years. NICE could issue a treatment alert and stop it in an instant if they wanted to.

 

Are you maybe getting confused with the timeline for the new NICE guideline? Maybe someone heard about it and misinterpreted its implications perhaps?

 

@Lucibee Yep. If they wanted to. Crucial point. So no repeal of GET then?

@Barry it's bound to be me who's confused. Must look up the new NICE guidelines when not splatted with PEM. Thanks.

 

Can someone help me find some PACE- documents? I 'm looking for (1) the Q&A that used to be on the QMUL website and (2) the reanalysis the PACe authors published at the time the data was being released.

Many thanks in advance,

 

The updated link is here: https://www.qmul.ac.uk/wolfson/research-projects/current-projects/projects/pace-trial.html

I'm not sure whether the original info is still all there though. I seem to recall someone (maybe @Tom Kindlon ?) posted an updated link to the PACE trial authors' own reanalysis according to the original protocol (for improvement) a few months (weeks?) ago... but I can't now find it.

ETA: Aha! Here it is: THE PACE TRIAL: ANALYSIS OF PRIMARY OUTCOMES USING COMPOSITE MEASURES OF IMPROVEMENT https://www.qmul.ac.uk/wolfson/medi...col_based_analysis_final_8th_Sept_2016(1).pdf

it was filed under "News"