HOW DID I MISS THIS GEM? I can only claim brain fog! 
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The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman
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I was thinking, what would it take for us to move on?
I think an apology form the authors, specifically, acknowledgement that the "positive results" are purely on subjective questionnaires and this is not only what patients are interested in, as proof of efficacy. (we want objective measures of improved functioning to be primary outcomes in clinical trials). They need to stop telling the lie that patients are only interested in subjective outcomes. They need to acknowledge that they exaggerated the results (of recovery at the very least) and that this has harmed patients.
Finally we need a commitment to start listening to patients, making an effort to see things as we do (stop thinking we care about mind-body dualism bullshit - we criticise psychological therapies due to lack of efficacy, not ideology). They need to make an effort to ask about and understand our needs, rather than to guess what they think they are. Lastly, ask for explicit and ongoing feedback on how their decisions are affecting our community - they need to realise that they may be causing harm even when they think they are helping the community.
I think an apology form the authors, specifically, acknowledgement that the "positive results" are purely on subjective questionnaires and this is not only what patients are interested in, as proof of efficacy. (we want objective measures of improved functioning to be primary outcomes in clinical trials). They need to stop telling the lie that patients are only interested in subjective outcomes. They need to acknowledge that they exaggerated the results (of recovery at the very least) and that this has harmed patients.
Finally we need a commitment to start listening to patients, making an effort to see things as we do (stop thinking we care about mind-body dualism bullshit - we criticise psychological therapies due to lack of efficacy, not ideology). They need to make an effort to ask about and understand our needs, rather than to guess what they think they are. Lastly, ask for explicit and ongoing feedback on how their decisions are affecting our community - they need to realise that they may be causing harm even when they think they are helping the community.
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I'm afraid that doesn't go nearly far enough for me. They need to leave the field entirely. Whatever skills they think they have are irrelevant to ME and have only caused harm. They have no business being involved in ME research at all. They have studiously ignored all the biomedical research of the last 25 years and do not even have a basic understanding of statistics necessary to run a trial. They have nothing to offer, and should get out of the way for those that do.
The removal of the bad science from medical advice and pointing out to doctors and others that the trial didn't show what was claimed. Stopping of campaigns to stigmatize patients. Stopping of lobbying for CBT/GET.
We should remember the current situation is that they are using the PACE reported results to influence treatment policy and doctors attitudes. They have not moved on from this and are continuing to push their views even though the results don't back them up. In doing this they are causing patients particular problems.
We should remember the current situation is that they are using the PACE reported results to influence treatment policy and doctors attitudes. They have not moved on from this and are continuing to push their views even though the results don't back them up. In doing this they are causing patients particular problems.
Thanks for your input to this as a doctor.
Presumably if not directly related to a particular article would it need to be declared in all the relevant articles published at that time in the journal?
What is the protocol for declaring excessive luxury holidays like this in the NHS and with the GMC rules?
It was in 2002. There was absolutely no need to travel to the other side of the world for a conference which could have been done in some budget conference centre in England.
If it is a healthcare company it is not as bad as if it were disability insurer related in which the interests of both parties are diametrically opposed.
Presumably if not directly related to a particular article would it need to be declared in all the relevant articles published at that time in the journal?
What is the protocol for declaring excessive luxury holidays like this in the NHS and with the GMC rules?
It was in 2002. There was absolutely no need to travel to the other side of the world for a conference which could have been done in some budget conference centre in England.
If it is a healthcare company it is not as bad as if it were disability insurer related in which the interests of both parties are diametrically opposed.
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Retraction of PACE and reassessment of all subsequent trials and guidelines that rely on it's 'findings',
and removal of the 'Chalder Fatigue Scale/Questionnaire' as a reliable method of 'measuring' fatigue.
The latter would render most, if not all, of their 'research' (rightly) completely irrelevent.
eta: removal of the Oxford criteria for research and diagnosis would have a similar result.
and removal of the 'Chalder Fatigue Scale/Questionnaire' as a reliable method of 'measuring' fatigue.
The latter would render most, if not all, of their 'research' (rightly) completely irrelevent.
eta: removal of the Oxford criteria for research and diagnosis would have a similar result.
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2nd April was a Wednesday in 2003, if I can be a smart alec.
Just occured to me that in the Texas debate Simon Wessely, in speaking for it's abolition, got to show off his debating skills whilst denigrating a large population of people. If anybody spots a theme here ...
Just occured to me that in the Texas debate Simon Wessely, in speaking for it's abolition, got to show off his debating skills whilst denigrating a large population of people. If anybody spots a theme here ...
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A lot of the participants were from New Zealand, so it wasn't the 'other side of the world' to them. I'm more concerned about the funding behind it.
Gaslighting is the correct term, I agree.
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I am also with Snow Leopard and TiredSam.
We are at the point where nothing less than the removal of the PACE/BPS cultists from any position of significant authority is going to allow the field to properly progress, and start dealing with the appalling human carnage left in their wake.
They are the barrier to productive progress. Nothing can 'move on' until they and their influence are removed from the game.
They have to go.
Now.
'Through slavery to freedom.'
Totalitarian filth, by any other name.
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I am also with Snow Leopard and TiredSam.
We are at the point where nothing less than the removal of the PACE/BPS cultists from any position of significant authority is going to allow the field to properly progress, and start dealing with the appalling human carnage left in their wake.
They are the barrier to productive progress. Nothing can 'move on' until they and their influence are removed from the game.
They have to go.
Now.
'Through slavery to freedom.'
Totalitarian filth, by any other name.
Conference programme had two lectures a day for 3 days, total 3 and a half hours for each of those days, and two free days for optional excursions.
Nice work if you can get it.
Were there really no anti corruption, conflict of interest rules?
Nice work if you can get it.
Were there really no anti corruption, conflict of interest rules?
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The discrediting of the oxford criteria to the point that using oxford and CFS in the same sentence is likely to get your paper rejected.
On the 'I don't believe it's possible in the best case due to this' side:
Improvement of the use of stats in the psych community, an understanding of and more care taken about blinding and the influence of the placebo effect.
Open peer review, including notes on which parts of the paper each reviewer has looked at, and a requirement that it's all got to be looked at.
Extra scrutiny of abstract and summary sections, so language such as 'improvement' or 'we believe CFS can be effectively treated' cannot be used without (if appropriate) caveats such as 'clinically irrelevant improvement' or 'effectively treated (which was not observed in this trial)'.
On the 'I don't believe it's possible in the best case due to this' side:
Improvement of the use of stats in the psych community, an understanding of and more care taken about blinding and the influence of the placebo effect.
Open peer review, including notes on which parts of the paper each reviewer has looked at, and a requirement that it's all got to be looked at.
Extra scrutiny of abstract and summary sections, so language such as 'improvement' or 'we believe CFS can be effectively treated' cannot be used without (if appropriate) caveats such as 'clinically irrelevant improvement' or 'effectively treated (which was not observed in this trial)'.
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For those not watching this particular area, this has been used to justify a number of changes for new claimants to ESA/UC, or those with changes.
The base amount of ESA/UC is set at the same amount of unemployment benefit. On top of this was an amount reflecting how severely disabled you are, as there are higher general living expenses for the disabled.
This extra amount has been removed for all but the most severely ill, as it is a 'perverse incentive' not to return to work.
Evidence for this is solely comprised of old poorly controlled studies that did not study the disabled that concluded 'work makes you free'. (well, almost).
In addition to this, previously for those under 25, they would have the rate of their basic allowance increased to the over 25s rate, as it's usually reduced because it's assumed young people have fewer costs. Together these changes for the under 25 amount to a 45% cut in payment.
They mean that anyone contemplating moving into employment is now faced with a slashed income if that employment goes wrong.
The base amount of ESA/UC is set at the same amount of unemployment benefit. On top of this was an amount reflecting how severely disabled you are, as there are higher general living expenses for the disabled.
This extra amount has been removed for all but the most severely ill, as it is a 'perverse incentive' not to return to work.
Evidence for this is solely comprised of old poorly controlled studies that did not study the disabled that concluded 'work makes you free'. (well, almost).
In addition to this, previously for those under 25, they would have the rate of their basic allowance increased to the over 25s rate, as it's usually reduced because it's assumed young people have fewer costs. Together these changes for the under 25 amount to a 45% cut in payment.
They mean that anyone contemplating moving into employment is now faced with a slashed income if that employment goes wrong.
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Being invited to a meeting like this does not need to be declared and I do not think it needs to be. When I first showed that rituximab worked in RA I was invited to a similar party in Hawaii by the company that makes the drug. I felt I had earned that after ten years hard grind. And there were no strings attached. Maybe it adds 2 cents to the cost of a rituximab treatment, but then I did not get paid otherwise and 2 cents out of $6000 is not bad.
But as trishrhymes says, the concern here is exactly why these people were invited to a meeting and by whom. What large contract for psychotherapy had been secured to justify this? And why was Keith Petrie doing the welcome address? What is for certain is that the delegates would not have been paying their own attendance fees. The only explanation I can think of is that a certain group of people, which if you discard the local NZ hangers on boils down to some familiar names, were doing very nicely even in 2003 getting support either from insurance companies or healthcare systems through a subcontracting company to provide belief-modifying services. That probably comes as no surprise to some old hands here but this seems slightly more tangible evidence than what I have heard before.
The competing interest would not be the attendance at the party but the reason why the party was held.
But as trishrhymes says, the concern here is exactly why these people were invited to a meeting and by whom. What large contract for psychotherapy had been secured to justify this? And why was Keith Petrie doing the welcome address? What is for certain is that the delegates would not have been paying their own attendance fees. The only explanation I can think of is that a certain group of people, which if you discard the local NZ hangers on boils down to some familiar names, were doing very nicely even in 2003 getting support either from insurance companies or healthcare systems through a subcontracting company to provide belief-modifying services. That probably comes as no surprise to some old hands here but this seems slightly more tangible evidence than what I have heard before.
The competing interest would not be the attendance at the party but the reason why the party was held.
Most people working in companies would be expected to declare gifts and hospitality in a gift register and it would be frowned upon to accept expensive things especially where your family are involved. The rules for civil servants are quite strict these days - it is considered unacceptable to buy them lunch but a simple working lunch (i.e. sandwiches whilst meeting seems ok). The issue is around being seen to be attempting to influence government or purchasing decisions. Companies have been fined very large amounts for inappropriate behaviours and so tend to be cautious (although not academics, drug companies or insurance companies it seems). The gift registers are intended to make things more transparent.
Thanks.
So you mean that the NHS does not have a declaration of interests for doctors. Even MPs and civil servants as stated by @user9876 have a strict disclosure requirements for any gifts and fees earned. This trip seems excessive and many professions would require transparency especially where family are invited to the so called meeting in a cook islands resort.
This is an interesting area to research. Follow the money.!!!
Could you confirm if all the lucrative fees that the PACE authors have earned from insurers would they not be declared in a central NHS and university financial register?
So you mean that the NHS does not have a declaration of interests for doctors. Even MPs and civil servants as stated by @user9876 have a strict disclosure requirements for any gifts and fees earned. This trip seems excessive and many professions would require transparency especially where family are invited to the so called meeting in a cook islands resort.
This is an interesting area to research. Follow the money.!!!
Could you confirm if all the lucrative fees that the PACE authors have earned from insurers would they not be declared in a central NHS and university financial register?
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I think the difficulty is that being invited to an academic meeting and given accommodation and dinner and transport reimbursement is a standard part of the job. I have reimbursed colleagues for thousands of dollars for flying to the UK long haul, staying in hotels and enjoying good conference dinners in return for their educational input to the conference. The difference is that the money was raised from paying delegate fees and educational grants from charities like Wellcome with no vested interest.
So being invited to a meeting in a comfortable environment is not necessarily a 'gift' or 'hospitality'. A meeting on Cook Island is probably not so different from a meeting in Canterbury for an Australian delegate. The room rates on Cook Island are high but where is the line to be drawn? It all boils down to who is doing the inviting and why - what alteration in behaviour on the part of the delegate might be expected to have preceded or followed this invitation?
In practice I think it would be impractical for medical academics to declare whenever they had expenses for meetings covered. But the situation is usually dealt with by the fact that delegates tend to have consultancy agreements with the relevant commercial interests if the source is commercial. So behind the party one would expect there to have been commercial consultancies that should be declared on publications. I think we know of those consultancies in fact. The party simply brings home to me just how close knit this group have been for a very long time.
So being invited to a meeting in a comfortable environment is not necessarily a 'gift' or 'hospitality'. A meeting on Cook Island is probably not so different from a meeting in Canterbury for an Australian delegate. The room rates on Cook Island are high but where is the line to be drawn? It all boils down to who is doing the inviting and why - what alteration in behaviour on the part of the delegate might be expected to have preceded or followed this invitation?
In practice I think it would be impractical for medical academics to declare whenever they had expenses for meetings covered. But the situation is usually dealt with by the fact that delegates tend to have consultancy agreements with the relevant commercial interests if the source is commercial. So behind the party one would expect there to have been commercial consultancies that should be declared on publications. I think we know of those consultancies in fact. The party simply brings home to me just how close knit this group have been for a very long time.
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The NHS does not have a declaration of interests. Doctors are entitled to receive fees for work outside the NHS and as long as those fees do not alter behaviour in the context of the nHS contract that seems legitimate. Some time back there was a fuss about pharmaceutical entertaining and that has been cut back very considerably, but by tightening the regulations for the companies rather than trying to track down every dinner each doctor had. Most doctors have not really had an option because all the major scientific meetings for professional colleges have a very big commercial presence. You cannot learn your job without accepting hospitality at some level.
I agree that this trip looks a bit glitzy. But I have been to very comfortable venues as an invitee of very respectable charitable bodies interested in getting top people together and realising they want space and comfort to interact in. Nevertheless, the programme here is very much the style of a commercial invitation. names of respectable charities are notably absent from the webpage.
The point that has been identified as one which can be used as a place to declare competing interest is scientific publication. It probably works quite well as the one place where you have to declare because to have an impact an academic needs to publish. So the issue here is whether or not a financial relationship to some commercial body that organised this meeting should have been declared as a competing interest in the publication that was the trigger for this thread. I think it should. Writing an article defending the scientific position of others who share a financial link to a commercial organisation would involve a competing interest.
I agree that this trip looks a bit glitzy. But I have been to very comfortable venues as an invitee of very respectable charitable bodies interested in getting top people together and realising they want space and comfort to interact in. Nevertheless, the programme here is very much the style of a commercial invitation. names of respectable charities are notably absent from the webpage.
The point that has been identified as one which can be used as a place to declare competing interest is scientific publication. It probably works quite well as the one place where you have to declare because to have an impact an academic needs to publish. So the issue here is whether or not a financial relationship to some commercial body that organised this meeting should have been declared as a competing interest in the publication that was the trigger for this thread. I think it should. Writing an article defending the scientific position of others who share a financial link to a commercial organisation would involve a competing interest.
@Keith Geraghty
Regarding Atlantis :
The UK arm of Atlantis Healthcare had £6.3 million in revenue and £233k profit claiming in the financials it is for behavioral changes. Bigger money than i expected, lots of business in this area.
https://beta.companieshouse.gov.uk/company/05897032/filing-history?page=1
I hadn't seen this before
Atlantis Healthcare addresses global health issues by empowering individuals to improve their health. We partner with healthcare providers, public health systems, insurers and pharmaceutical companies to deliver solutions that apply Health Psychology so better health outcomes can be achieved.
Insurers
We work with insurers to improve health and wellbeing and reduce the cost of care
http://www.atlantishealthcare.com/uk
I wasn't aware of these type of organisations. Were you aware of these organisations @Jonathan Edwards ?
Just wanted to thank Keith Petrie for stepping out of the shadows and allowing us this opportunity to shine a spotlight on his Behaviours over the years (and his financial interests) and providing a bigger picture of the PACE team shenanigans. And thanks of course also to John Weinmann of Kings college London (Wessely's uni).
Regarding Atlantis :
The UK arm of Atlantis Healthcare had £6.3 million in revenue and £233k profit claiming in the financials it is for behavioral changes. Bigger money than i expected, lots of business in this area.
https://beta.companieshouse.gov.uk/company/05897032/filing-history?page=1
I hadn't seen this before
Atlantis Healthcare addresses global health issues by empowering individuals to improve their health. We partner with healthcare providers, public health systems, insurers and pharmaceutical companies to deliver solutions that apply Health Psychology so better health outcomes can be achieved.
Insurers
We work with insurers to improve health and wellbeing and reduce the cost of care
http://www.atlantishealthcare.com/uk
I wasn't aware of these type of organisations. Were you aware of these organisations @Jonathan Edwards ?
Just wanted to thank Keith Petrie for stepping out of the shadows and allowing us this opportunity to shine a spotlight on his Behaviours over the years (and his financial interests) and providing a bigger picture of the PACE team shenanigans. And thanks of course also to John Weinmann of Kings college London (Wessely's uni).
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