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PACE trial commentary in JHP from Dr Charles Shepherd, ME Association

Cinders66

Senior Member
Messages
494
I agree with what used to Be MEA position that PACE money should have gone in biomedical research and would have been much more bang for the buck etc. I disagree with today's conclusion that what we desperately need are activity management trials on a heterogeneous CFS cohort. Activity management is something patients can do or have to do right now, in the absence of any thing like proper treatment. I guess the purpose would be to show preference over GET but Biomedical research could equally demolish the GET argument (you're less likely to prescribe exercise for people who's cells are shown to not metabolise glucose and the BPS model was based on the assumed absence of organic explanations ) as well as actually get treatments and we already know that pacing /activity management is mainly of most value to the newly ill, not the 100,000 or more who've been ill years and are entrenched or severe.
 
Messages
2,391
Location
UK
Then let it be on the record that they were given the chance and neglected to do so by offering them the opportunity regardless?
Yes I agree. If an uphill struggle can in some way become part of a "public audit trail", it could still prove very useful in the future, and harder to wriggle out of, when questions are later asked why it was such a struggle to do the right thing.
 
Messages
13,774
I agree with what used to Be MEA position that PACE money should have gone in biomedical research and would have been much more bang for the buck etc. I disagree with today's conclusion that what we desperately need are activity management trials on a heterogeneous CFS cohort. Activity management is something patients can do or have to do right now, in the absence of any thing like proper treatment

Yeah, I'd much rather be left alone to decide for myself how to manage my activity, rather than risk more research on how my condition should be managed from the sort of institutions who thought PACE was acceptable.
 
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Large Donner

Senior Member
Messages
866
Is it just me, or does Richard Horton's automated reply read like one of those 'stranded traveller' email scams?

"Thank you for your message. I am currently travelling and my iphone has died unexpectedly so I am unable to offer direction to the rest of the Lancet's editorial team.

Please urgently send me a loan via Western Union so I can buy a replacement and get back to ensuring the journal I edit maintains its' reputation for withdrawing questionable research papers in a timely manner (by which I mean 'whenever hell freezes over').

Please let me know when you have transferred the monies.

Travel safely,

Richard"

I just sent him a hundred quid, I haven't been taken in have I? :confused::(:oops:
 

MEMum

Senior Member
Messages
440
I had a vague memory that Horton had announced he was retiring from the Lancet this summer, around the same time that PDW said he was retiring from clinical practice! Was I just dreaming?
 

Large Donner

Senior Member
Messages
866
The Countess of Mar is currently in correspondence with the RCGP to try and set up a meeting at the House of Lords - mainly to discuss GP medical education and ME/CFS and GP attitudes to patients with ME/CFS

Fair enough.

We can certainly discuss PACE if a meeting occurs

But we dont need to wait for them to give us permission to meet with them. We could just list all the failings of the PACE trial in an official complaint and send it to them.

But I think it will be a real uphill struggle to persuade the RCGP (or any other Royal College) to criticise the PACE trial in public or in private

By writing to them and alerting them to all the critiques and the signed letters, by now hundreds of academics etc, they have no choice other than to acknowledge the failings of the PACE trial and the damage it is causing or to ignore it in their response.

They are going to look pretty foolish if they don't comment on a trial that forces their members to continue to prescribe the given treatments now based on a trial that can see people ill enough to enter the trial whilst simultaneously meeting the definition for recovery.

They simply cannot defer to the NICE guidelines on this basis it would be a ludicrous position to take.
 

Solstice

Senior Member
Messages
641
Is it just me, or does Richard Horton's automated reply read like one of those 'stranded traveller' email scams?

"Thank you for your message. I am currently travelling and my iphone has died unexpectedly so I am unable to offer direction to the rest of the Lancet's editorial team.

Please urgently send me a loan via Western Union so I can buy a replacement and get back to ensuring the journal I edit maintains its' reputation for withdrawing questionable research papers in a timely manner (by which I mean 'whenever hell freezes over').

Please let me know when you have transferred the monies.

Travel safely,

Richard"

Maybe we should ask Joe Lycett to deal with him?

https://streamable.com/d6bh4
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Maybe his iPhone has false end of life beliefs. Just thinks it's dead ... but somewhere in its phoney ( :p ) subconscious lurks the hidden truth.
[Satire] This reminds me of a very old comment of mine. They are secretly planning the Zombie Apocalypse! You see people only think they are dead when they are buried, but when these types of psychiatrists perfect their methods they will be able to use CBT to raise the dead! Since we are nearly zombies already we are the perfect test subjects.
 
Messages
2,125
"I am unable to offer direction to the rest of the Lancet's editorial team."

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