PACE trial commentaries in the Journal of Health Psychology to be made open access

[AndyPR]

and exactly the same thing is now happening in Australia, a straight copy of how the UK has been doing it).

As an example, I just saw this;

Prof Rodney Phillips, Dean of Medicine at the University of New South Wales (UNSW) denies that Prof Lloyd’s trial would cause harm to participants and refuses to stop the trial or amend it in any way. The university says the people who are protesting ‘harbour resentment against the notion that CFS may have psychological causes’, while there is no evidence for their argument.

The letter from Prof Phillips was in response to the petition protesting a trial of a training module of graded exercise therapy (CBT) and cognitive behaviour therapy (GET) for health professionals. The petition was sent to UNSW’s Vice Chancellor Prof Ian Jacobs; the Mason Foundation; the federal health minister and the National Health and Medical Research Council (NHMRC). It asked them to stop UNSW’s trial of an education module for health professionals which treats chronic fatigue syndrome patients with GET/CBT, despite the evidence showing these therapies have no benefit and often cause permanent harm.

https://meaustralia.net/2017/03/30/...-training-trial-for-chronic-fatigue-syndrome/

 

[ScottTriGuy]

Very well said @Karen Kirke and @Sean

 

[Snow Leopard]

I’d like to shake the hand of the person who had the idea to ask you to advise on research strategies for ME/CFS..

That would be @charles shepherd

 

[Jonathan Edwards]

That would be @charles shepherd

No, in fact Richard and Pia Simpson of IiME!

 

[lilpink]

No, in fact Richard and Pia Simpson of IiME!

I thought so too... good on them

 

[Daisymay]

[QUOTE="Sean, post: 830387, member: 722"
From the start they were absolutely sure that they were right, and that the evidence would eventually catch up and confirm their hypothesis, and make heroes of them.[/QUOTE]

Or it was a set up right from the start, the insurance companies back in the '90's were saying CFS was a major problem and something had to be done about it, so it was more that the evidence had to be made (eg PACE fraud, NICE guidelines) to confirm the hypothesis not that they thought that it would eventually catch up and show their view to be correct.

So they knew it wouldn't catch up because they knew their view was wrong all along, but the view fits with the needs of the insurance companies and government benefit departments and for those promoting such views it has been very beneficial for their careers.

 

[Daisymay]

Or it was a set up right from the start, the insurance companies back in the '90's were saying CFS was a major problem and something had to be done about it, so it was more that the evidence had to be made (eg PACE fraud, NICE guidelines) to confirm the hypothesis not that they thought that it would eventually catch up and show their view to be correct.

So they knew it wouldn't catch up because they knew their view was wrong all along, but the view fits with the needs of the insurance companies and government benefit departments and for those promoting such views it has been very beneficial for their careers.

http://www.margaretwilliams.me/2003/unumprovident-sharpe-and-cbt.pdf

"The ME community is well aware of the long-time involvement of psychiatrist Dr Michael
Sharpe with the insurance company UNUM, of his association with Allied Dunbar and of his
recommendation to insurers that claimants with a diagnosis of ME/CFS should be subject to
covert video surveillance. The ME community will also recall that on 17th May 1995 Mike
Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held
in London entitled “Occupational Health Issue for Employers” (where ME was described as
“the malingerers’ charter”) at which they advised employers how to deal with employees who
were on long-term sickness absence with “CFS”. Moreover, the ME community is hardly
likely to forget that in UNUM’s “Chronic Fatigue Syndrome Management Plan”, ME/CFS is
described as “Neurosis with a new banner” and that same document states “UNUM stands to
lose millions if we do not move quickly to address this increasing problem”. Members of
Parliament are on record as being gravely concerned about the difficulties which their
constituents with ME/CFS suffer at the hands of UNUM, as recorded in the House of
Commons debate chaired by Sir Alan Haselhurst on 21st December 1999 (reference: Hansard
147WH-166WH). "

 

[Wolfiness]

I have a home spun theory about such people (but please note it is purely my own conjecture, derived from experience and lots of navel gazing).

Our minds cannot directly engage with the real world, so I think that each and every one of us must hold in our minds an operating model of what we perceive the real world to be ... and it is that which our minds interact with. Most people's model holds the concept of truth and therefore lies, and their actions are strongly driven by this, including those who maybe lie more than most would like.

But I think there is another operating model that certain personality types have, which is quite alien to most of us. I do not think this model includes the notion of truth, and thereby also not the concept of untruth. Instead I believe their strong motivational drivers are based on cause and effect - what actions must they do in order to achieve an effect they wish to achieve. Sometimes such actions will coincide with what we see as the truth, at other times with what we see as lies. But I do not think these people sense the world like this, it is just about cause and effect; I think the concept of truth and therefore lies is completely alien to them.

Are you familiar with the essay On Bullshit ?
https://en.m.wikipedia.org/wiki/On_Bullshit

 

[Wolfiness]

Thank you @Jonathan Edwards for this withering piece.

However, I think the claim that the effects of CBT and GET were maintained at two and a half years (Sharpe et al., 2015) is worth challenging again because it is not what any reasonably intelligent person would conclude. If there is no longer a difference in the level of improvement between treatment groups, then a preferential causal influence of one therapy or another cannot be claimed to be ‘maintained’.

I'm going to plead incapacity and ask someone to explain this. Does it mean that for Sharpe et al. to be right the CBT patients should have kept improving?

 

[BruceInOz]

Thank you @Jonathan Edwards for this withering piece.



I'm going to plead incapacity and ask someone to explain this. Does it mean that for Sharpe et al. to be right the CBT patients should have kept improving?

Not necessarily. There would need to be a difference between the groups at long term followup. But the smc group improved and caught up so there was no longer a difference.

 

[Wolfiness]

Not necessarily. There would need to be a difference between the groups at long term followup.

Ahhh, thereby maintaining the preference, gotcha. Thanks.

 

[arewenearlythereyet]

http://www.margaretwilliams.me/2003/unumprovident-sharpe-and-cbt.pdf

"The ME community is well aware of the long-time involvement of psychiatrist Dr Michael
Sharpe with the insurance company UNUM, of his association with Allied Dunbar and of his
recommendation to insurers that claimants with a diagnosis of ME/CFS should be subject to
covert video surveillance. The ME community will also recall that on 17th May 1995 Mike
Sharpe and Simon Wessely were the main speakers at a UNUM-supported symposium held
in London entitled “Occupational Health Issue for Employers” (where ME was described as
“the malingerers’ charter”) at which they advised employers how to deal with employees who
were on long-term sickness absence with “CFS”. Moreover, the ME community is hardly
likely to forget that in UNUM’s “Chronic Fatigue Syndrome Management Plan”, ME/CFS is
described as “Neurosis with a new banner” and that same document states “UNUM stands to
lose millions if we do not move quickly to address this increasing problem”. Members of
Parliament are on record as being gravely concerned about the difficulties which their
constituents with ME/CFS suffer at the hands of UNUM, as recorded in the House of
Commons debate chaired by Sir Alan Haselhurst on 21st December 1999 (reference: Hansard
147WH-166WH). "

I had a battle with UNUM who managed my company's loss of earnings insurance policy. Initially I had a 5 minute conversation on the phone with some guy from the insurer (non medical) , who then decided that I was fit for work. Their rationale for this was based on the fact that I waited for my diagnosis for nearly a year before getting signed off from work. They didn't look at any medical reports that I offered them, just refused to pay.

I persevered and eventually got the money out of them...I feel like I've won a bigger battle now I've read this.

 

[Wolfiness]

We reject the accusation that our ‘actions have arguably caused distress to patients’, for which Dr Geraghty offers no evidence.

Wow… just… wow.

Would it be possible to collect a few hundred brief, dignified patient testimonies to refute that outrageous and in fact distressing statement? Even if they don't believe us, I would like to tell them.

I've realised that justice isn't just about material rights and dues but about having your experience and hence your identity acknowledged by other people. Dr Peter Rankin, a neuropsychologist and Hillsborough survivor, has said,
"If your most significant experience is invalidated… and… not believed by the rest of the world, then you have to fight for that to be corrected otherwise you don't really exist as a person."

White et al.'s actions have undermined my basic dignity by pressuring me to believe things I knew weren't true, smearing me when I dissented and now denying my existence. It is profoundly distressing. There's a subjective outcome of the PACE trial for you, Professors.

 

[AndyPR]

Wow… just… wow.

Would it be possible to collect a few hundred brief, dignified patient testimonies to refute that outrageous and in fact distressing statement? Even if they don't believe us, I would like to tell them.

I've realised that justice isn't just about material rights and dues but about having your experience and hence your identity acknowledged by other people. Dr Peter Rankin, a neuropsychologist and Hillsborough survivor, has said,
"If your most significant experience is invalidated… and… not believed by the rest of the world, then you have to fight for that to be corrected otherwise you don't really exist as a person."

White et al.'s actions have undermined my basic dignity by pressuring me to believe things I knew weren't true, smearing me when I dissented and now denying my existence. It is profoundly distressing. There's a subjective outcome of the PACE trial for you, Professors.

This, to my mind, is an interesting thought. No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them but I think it could be of some use to accumulate evidence for this.

I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.

 

[arewenearlythereyet]

This, to my mind, is an interesting thought. No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them but I think it could be of some use to accumulate evidence for this.

I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.

Now that's something I can sign up to!

 

[Wolfiness]

No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them

Of course. But the main proof of distress is someone saying they feel distress, no? Which we know they already know about because they've skulked around this forum.

We would just have to make it clear that our distress is not based on a misapprehension of their position. That Chalder is wrong when she continues to declare that patients dislike CBT/GET because we misunderstand it as implying that ME is a purely psychiatric disease.

 

[alex3619]

Are you familiar with the essay On Bullshit ?
https://en.m.wikipedia.org/wiki/On_Bullshit

Interesting. I have been saying for a long time now that psychobabble proceeds by persuasive rhetoric, and not by evidence or reason. That would, if this theory is right, qualify it as bullshit.

 

[alex3619]

We might want to ask for only patients to sign it though.

You will need to qualify this though. Any ME or CFS patient? Or do you want to restrict it to UK? This needs to be very clear in the petition.

If any patient anywhere in the world, I would sign it if it was worded appropriately.

 

[Barry53]

This, to my mind, is an interesting thought. No doubt anything that we did to prove that we patients feel that we have been distressed by their actions would be dismissed by them but I think it could be of some use to accumulate evidence for this.

I know that there just seems to be so many petitions floating around at the moment but I think this could be one way of doing it - the Change.org platform allows for comments as well, so that people could leave more detail if they wished. Off the top of my head the petition could be "By signing this petition, I confirm that I feel the actions of the PACE authors have caused me distress". We might want to ask for only patients to sign it though.

Or an open letter focusing strongly on the aspect of harm (especially that attributable to PACE), with no distractions from this aim, but including whatever is necessary to support it, and nothing else. List of signatories to be very carefully considered - a vast list of interested parties would probably be ineffective, but a modestly long list of people with powerful tangible evidence of having been harmed - directly or indirectly - due to PACE.

 

[Wolfiness]

Partly I'm just flabbergasted they have regressed to this level of denial, because it's such a doddle to disprove it. Not only is distress "very evident among the patient community" as Professor Edwards has said, it is implicit in their own representation of PACE critics.

Obviously tangible harm is hugely important. But my main objection here is philosophical. As scientists they can argue about p-values or case definitions or whether the Countess of Mar is harassing them. They do not get to tell me who I am. That's my prerogative. Yet after 16 years of ME I was genuinely shocked to learn last year that listening to patients is considered a core duty of doctors. I honestly thought they thought their job was to explain to patients why we're wrong. And worse, I tried to believe them.