Tom Kindlon
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Couple of minor points might need double checking:
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.
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.
Completely agree. The basic facts are bad and stark enough on their own.Besides, it's plenty bad without any whiff of fabrication.
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.
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.
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.
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.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 am in contact with Alem Matthees' family. Unfortunately last time I heard he is still out of action.@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.
I am in contact with Alem Matthees' family. Unfortunately last time I heard he is still out of action.
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.@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.
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.
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.