Tom Kindlon
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Press release: "PACE Trial: The Making of a Medical Scandal" avail. to journalists. Please highlight
- Thread starter Tom Kindlon
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Pretty serious direct challenge to PACE. 
Couple of minor points might need double checking:
1.
"CBT and GET cured around 30% of patients"
I thought PACE used 'recovered/recovery' and 21%. Or was that only the formal claim in the paper itself, and they then used 'cured' and 30% in the press release/conference flogging their great success?
2.
The 2/3 reduction in the improvement rate (from 60 to 21%), after reanalysis according to the protocol, was originally calculated and published by the PACE team, not by Wilshire et al.
However it should also be pointed out that the PACE team did this only after they had been ordered by the court to hand over the recovery data to Mr Matthees. In other words, they re-calculated the improvement rate because their hand was forced by the public revealing of the recovery data. They did not do it willingly.
Couple of minor points might need double checking:
1.
"CBT and GET cured around 30% of patients"
I thought PACE used 'recovered/recovery' and 21%. Or was that only the formal claim in the paper itself, and they then used 'cured' and 30% in the press release/conference flogging their great success?
2.
The 2/3 reduction in the improvement rate (from 60 to 21%), after reanalysis according to the protocol, was originally calculated and published by the PACE team, not by Wilshire et al.
However it should also be pointed out that the PACE team did this only after they had been ordered by the court to hand over the recovery data to Mr Matthees. In other words, they re-calculated the improvement rate because their hand was forced by the public revealing of the recovery data. They did not do it willingly.
Esther12
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I thought the same. Would be good to get any press release water-tight.
JaimeS
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Pretty serious direct challenge to PACE.
Couple of minor points might need double checking:
1.
"CBT and GET cured around 30% of patients"
I thought PACE used 'recovered/recovery' and 21%. Or was that only the formal claim in the paper itself, and they then used 'cured' and 30% in the press release/conference flogging their great success?
2.
The 2/3 reduction in the improvement rate (from 60 to 21%), after reanalysis according to the protocol, was originally calculated and published by the PACE team, not by Wilshire et al.
However it should also be pointed out that the PACE team did this only after they had been ordered by the court to hand over the recovery data to Mr Matthees. In other words, they re-calculated the improvement rate because their hand was forced by the public revealing of the recovery data. They did not do it willingly.
Seriously, incredibly important to get these details very, very right. Anything inflated or incorrect will of course be pounced on. As it should. Besides, it's plenty bad without any whiff of fabrication.
taniaaust1
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I have an idea, Im wondering if any Australian media would be interested in how an Australian - Mr Mathees, took the UK ??? to court (what/who did he take to court?) to expose the truth which is shattering the previous thinking on ME/CFS. It would be great if some Aussie media could interview him and tie that with what's happening now and what is about to come out in the Journal of health psychology as it would make for a more interesting story here in Australia. (good story for one of our current affair shows with an aussie twist)
Does anyone have the email for Mr Mathees for me to pass on if I contacted some media places about this? Does anyone know how to get in touch with him? There is so many untold stories around ME/CFS and this is one which should be told.
and what is Mr Mathees full name? (im stuck in bed today but could make a couple of phone calls if I have enough details to pass on)
lafarfelue
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@taniaaust1
From what I gathered from other pieces about the situation, Mr Mathees is pretty ruined after that long battle with the PACE group. Probably worth putting some feelers out for him to contact others, rather than forcing intrusive contact on him.
Hopefully it will all come to light over time.
From what I gathered from other pieces about the situation, Mr Mathees is pretty ruined after that long battle with the PACE group. Probably worth putting some feelers out for him to contact others, rather than forcing intrusive contact on him.
Hopefully it will all come to light over time.
Completely agree. The basic facts are bad and stark enough on their own.
So the real question, as always, comes back to why is it taking so long to get them accepted and acted upon? Who benefits from that obfuscation and delay? Certainly isn't patients or broader society.
JES
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Pretty serious direct challenge to PACE.
Couple of minor points might need double checking:
1.
"CBT and GET cured around 30% of patients"
I thought PACE used 'recovered/recovery' and 21%. Or was that only the formal claim in the paper itself, and they then used 'cured' and 30% in the press release/conference flogging their great success?
2.
The 2/3 reduction in the improvement rate (from 60 to 21%), after reanalysis according to the protocol, was originally calculated and published by the PACE team, not by Wilshire et al.
However it should also be pointed out that the PACE team did this only after they had been ordered by the court to hand over the recovery data to Mr Matthees. In other words, they re-calculated the improvement rate because their hand was forced by the public revealing of the recovery data. They did not do it willingly.
I think recovery was reported as 21% or 22%, never seen a 30% number (recovery was found to not be statistically significant in the re-analysis when the original protocol was used, which required "very much better" instead of "much better" in the subjective questionnaire). What made the confusion worse was that the "normal range" that 60% reached in the 2011 paper was mistakenly reported as recovery by Bleijenberg and Knoop in their commentary of the 2011 paper.
Esther12
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That was the 30% figure, not 60%: "In accordance with this criterion, the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%—although not very high, the rate is significantly higher than that with both other interventions." I bet that was where the figure came from.
Furthermore, if I remember correctly, the PACE authors got to see that accompanying and very favourable editorial before it was published, and failed to correct that 30% figure.
If so, then they not only changed the protocol to inflate the recovery figure from 7 to 22%, but also then allowed it to be further arbitrarily inflated in the editorial by more than a third to 30%.
The word 'cured' might have been used by Chalder at the
Tom Kindlon
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The press release has been updated today. It is now more accurate.
Tom Kindlon
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I am in contact with Alem Matthees' family. Unfortunately last time I heard he is still out of action.
Invisible Woman
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Please send him and his family our best wishes and gratitude Tom. I'm so sorry that the cost to him has been so high.
That in itself you'd think would make it a major story for Australia, but of course it could only happen if Alem Mathees was not further harmed or intruded upon as a result. As you say, there may come a time.
@Tom Kindlon We have a list of Scottish health journalists and will send round press release to them tomorrow. If anyone's on twitter be sure to @ any journalist/newspapers so they see Tom's tweets!
A freelancer has got in contact asking if we have any case studies of patients with CBT/GET so put the word out. If there's any Scottish folks on here please give me a message. (feel like my story's already been told and would be good to have other people sharing theirs)
A freelancer has got in contact asking if we have any case studies of patients with CBT/GET so put the word out. If there's any Scottish folks on here please give me a message. (feel like my story's already been told and would be good to have other people sharing theirs)
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JaimeS
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NHS is national, so any cost-saving measure is good for society -- playing devil's advocate here, I'm aware this is an infuriating statement!
Jonathan Edwards
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The best plan might be to get Aussie media people to contact either David Marks at the journal (who sent out the press release) or perhaps David Tuller, who can vouch for Alem Matthee's role and, being in journalism, provide the sort of material needed. Mr Matthees himself may find media intrusion a big problem even if he may be pleased to have people interested. I don't have authority to post personal emails but these are probably fairly easy to pull up off the net.
aquariusgirl
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Is there any outfit that does investigative journalism in the UK? Anything like Pro Publica in the US?
Panorama?
Panorama?
I've been listening to The Inquiry on radio 4 lately, they take a topic and go into depth for 25 minutes, might be something for PACE. On the other hand they always have 4 viewpoints, so the BPS crew would probably get 6 minutes, which would be nauseating to have to listen to. Unless it was 6 minutes of making fools of themselves of course, which they seem to do every time they or their stooges open their mouths these days.
alex3619
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The more the wider medical and scientific communities get to see the evidence, the harder it will be for persuasive rhetoric that is short on evidence and reason to persuade anyone. Is the tide turning? Should we have a milestone thread on this edition?