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"PACE Trial Participants – were they exploited?" (September 10) by Peter Kemp

Tom Kindlon

Senior Member
Messages
1,734
I find it shocking to see the 3 press releases that went out saying the improvement rate was 60% when we now know that if the 3rd primary outcome measure overall improvers had been reported at the time the figure was only 21% for the GET and 20% for CBT. The article lists lots of media coverage that then reported this figure, among other things]




The Medical Research Council

http://www.mrc.ac.uk/Newspublications/News/MRC007706

UK’s largest CFS/ME trial confirms safe and effective treatments for patients.

Two effective treatments benefit up to 60 per cent of patients with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME), according to a collaborative trial funded by the Medical Research Council (MRC) and UK government departments.



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Kings College London

http://www.kcl.ac.uk/iop/news/records/2011/feb2011/SafetreatmentsforCFSME.aspx

Two effective treatments benefit up to 60 per cent of patients with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) Professor Trudie Chalder from King’s College London and a co-author,said: ‘We have found that both CBT and GET can safely help a significant number of patients…”



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Queen Mary University of London:
http://www.qmul.ac.uk/media/news/items/smd/44140.html
Two effective treatments benefit up to 60 per cent of patients with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis
 
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NL93

Senior Member
Messages
155
Location
The Netherlands
Yeah wow.
And even then the 60% claim was quite ridiculous because 45% of the SMC improved as well with their loose improvement criteria. That only leaves 15% benefit.
And now we now it's even lower than that when following the original protocol.

They have clearly made misleading claims and it's starting to get more and more obvious to see.
 
Messages
29
I wonder if the participants were told where their own results lay within the data.
I had CBT at Kings I think just after the trial itself but didn't participate.
I always wondered how my own results were quantified....Was I deemed to have been a success.?
 
I believe they have a similar way of working to Dr Nick Riviera
upload_2016-9-15_18-7-39.jpeg

along the lines of...if they didn't make you seriously worse, then they cured you, and if you did get worse, then you don't count. ;)
 

PhoenixDown

Senior Member
Messages
456
Location
UK
I find it shocking to see the 3 press releases that went out saying the improvement rate was 60% when we now know that if the 3rd primary outcome measure overall improvers had been reported at the time the figure was only 21% for the GET and 20% for CBT
The medical care only group did 10%, so only 10% of patients were better off with CBT or GET. Also "Recovered" could mean only working a few extra steps on the walking test.
PACE-per-protocol.png


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Seven7

Seven
Messages
3,444
Location
USA
Yo do realized the ok was 60% vs the 73% where normal people reported being "sick" so the threshold for normal people to be sick somehow is higher than what is consider ok for us. hmmmmmmmmmmm see the sf36 table comparison.