The PACE trial [pro]: It’s time to broaden perceptions and move on. Keith Petrie, John Weinman

Stewart

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I think it was found that Wessely was making these vague allusions as long ago as 1993 in the Elliot Slater lecture when he said, if his lecture notes are accurate, "hysteria, the mention of the word in the context of ME brings me palpitations and makes me worried about the safety of my family....."

See, it is not only he who is in danger, but also his family. Who from is a complete mystery. He might wish to clarify the matter. No doubt the risks increased with every retelling of the story to admiring disciples.

I took that to be Simon's (somewhat inappropriate) idea of a joke - "I'd rather not mention hysteria in connection with ME, I might put my family at risk!" - rather than a serious claim that threats had been made (or might be made) against him (or his family). I think the 2011 BMJ article by Nigel Hawkes was the first time he explicitly claimed to have received death threats - but feel free to correct me if you know of any earlier date when he made such an allegation.

Two further thoughts I had:

If "no threats" have been made to PACE researchers, as Trudie Chalder admitted to the Tribunal, where does that leave Simon Wessely? Because he *was* a PACE researcher, much as he might like to pretend he wasn't. He ran one of the seven trial centres. If he genuinely has received credible death threats why didn't the PACE team use that evidence at the Tribunal hearing to support their claim of an organised campaign of harassment by dangerous CFS extremists?

In the same vein, why didn't they use any of the abusive emails - that they all claim to have received - to illustrate the unreasonable opposition to the trial? The Tribunal judgement makes it clear that Trudie presented postings from Phoenix Rising to show the strength of opposition - why not use the abusive emails instead (or in addition) ? When you combine the PACE authors seeming reluctance to make these abusive emails public with Simon's tendency to misrepresent the nastiest blog posts he can find as examples of the 'sulphurous' emails he's received, you can't help but wonder if the abusive emails are in reality not as abusive (or as numerous) as has been claimed...
 

Binkie4

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http://www.rcpsych.ac.uk/policyandp.../ppec/ppecblog/informedconsent-thenewlaw.aspx

I thought it might be relevant to append the RCPsych's policy on informed consent updated since Montgomery vs Lanarkshire. In view of the discussion on many threads of the forum about the harms of GET, the manipulation of patients into trying GET, Nice guidelines and GET, I hoped it might be use to remind ourselves of the current RCPsych guidelines.

How this fits with modifying patients' beliefs about treatments a la Petrie and Weinman I am not sure. How does this fit in with "patients must do what they are told".
 

Daisymay

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http://www.rcpsych.ac.uk/policyandp.../ppec/ppecblog/informedconsent-thenewlaw.aspx

I thought it might be relevant to append the RCPsych's policy on informed consent updated since Montgomery vs Lanarkshire. In view of the discussion on many threads of the forum about the harms of GET, the manipulation of patients into trying GET, Nice guidelines and GET, I hoped it might be use to remind ourselves of the current RCPsych guidelines.

How this fits with modifying patients' beliefs about treatments a la Petrie and Weinman I am not sure. How does this fit in with "patients must do what they are told".

I don't think anyone would ever consent to CBT/GET if they were fully informed as is required by law and also by the GMC professional guidelines on consent of the facts.

Even before the Montgomery case which led to the 2015 change in the law on consent, doctors should have been complying with the GMC professional guidelines on consent which had been in place since about 1998 or there abouts, can't remember exactly:

http://forums.phoenixrising.me/inde...ndmark-change-to-the-uk-law-on-consent.41989/

"It should be noted that the Montgomery case, which led to this change in the law, was won not because the new law on consent was applied retrospectively but because the consultant was in breach of the GMC professional guidelines on consent which were extant at the time of the birth: (5)

"By allowing the Appeal, it has been recognised that the Supreme Court is reflecting what the General Medical Council (GMC) has been setting out in its guidance on consent to medical treatment for many years - to fully advise a patient of the options for treatment, the risks of each option and the benefits of the option, and it is then for the patient, not the doctor, to advise which option they wish to choose."(10)

All doctors, researchers and health professionals who have for years prescribed CBT/GET without fully informing patients of risks, alternative treatments etc have been in breach of these GMC guidelines on consent."


And:

"If this patient, and others in the survey, had been fully informed as was required by GMC professional guidelines, and is now required by law, it is highly likely they wouldn't have consented to CBT/GET and immeasurable harm and suffering would have been avoided.

It should be noted that the new law on consent also applies to other medical professionals, for example occupational therapists, physiotherapists, nurses, psychologists etc, who may also provide CBT/GET. They too could face litigation if they fail to adhere to this law:

" Doctors, and other healthcare professionals, are now under a clear duty to take reasonable care to ensure that patients are aware of all material risks. This judgement aligns the law with the guidance on consent set out by the General Medical Council."(6)


Yet psychiatrists and other medical professionals ignore the GMC guidelines and the law with impunity.
 

RogerBlack

Senior Member
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902
"By allowing the Appeal, it has been recognised that the Supreme Court is reflecting what the General Medical Council (GMC) has been setting out in its guidance on consent to medical treatment for many years - to fully advise a patient of the options for treatment, the risks of each option and the benefits of the option, and it is then for the patient, not the doctor, to advise which option they wish to choose."(10)

All doctors, researchers and health professionals who have for years prescribed CBT/GET without fully informing patients of risks, alternative treatments etc have been in breach of these GMC guidelines on consent."

Note that while the first paragraph is a statement by the supreme court, the second is not.

It is at least arguable that the second is true, but such a statement carries no weight in comparison to the first.
 

Yogi

Senior Member
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1,132
Had a proper read of this article and if this is the best they can do it is looking good for us.

It doesn't address any of the issues but simply regurgitates baseless claims which have proven to be false.

Some real beauties here:

The study’s findings that cognitive behaviour therapy and graded exercise can moderately improve outcome in CFS created a storm of criticism led mainly from patient groups attacking the study’s findings (The Lancet, 2011) and even the researchers themselves (Hawkes, 2011; The Guardian, 2011).

- Lie. No these were all exaggerated and fabricated as a narrative for the media to silence critics. Under oath they were unable to prove these in court.



These issues and other points raised have been responded to by the PACE authors in detail in this journal (White et al., 2016). They have also previously answered a number of similar rounds of critiques (Sharpe et al., 2016; Wessely, 2015; White et al., 2016).

-Lie. No they haven't! They have refused to respond to Tuller and other informed people directly.



In our experience as health psychologists, patients with other illnesses such as cancer, renal disease, heart disease or chronic respiratory problems are usually very keen to adopt psychological interventions that can reduce fatigue, improve functioning and well-being.

- Lie and very misleading. Those other illnesses have psychological interventions as an adjunct therapy not as primary treatment. PWME are refused beneficial medical treatment and given CBT/GET as directive therapy to fix false illness beliefs. Completely different.



There is a strong resistance by some people who have CFS to any psychological interpretations or interventions, which are at variance with the way they view their illness.

- Lie.
No it is because they don't work and the CBT/GET research of PACE and other smaller studies are fraudulent as shown now.


Another aspect of people’s causal beliefs about illness is that they often demonstrate a modern-day version of Cartesian dualism and a rather crude division between mind and body. Thus, for the same illness, people may believe strongly in either a physical or a psychological cause, sometimes in a rather simplistic way.

-
Lie. No, patients accept that mind and body is linked. It is doctors and in particular psychs who have this cartesian dualism. Also insurance companies pay for physical disability and not for mental disability. This is a complete lie and fabrication of the facts. Psychs refuse to accept the neurological classification of WHO as G93.3 but mislead and manipulate it to a mental classification F48.0. This is cartesian dualism. The PACE authors also advise insurers who benefit from this.



In reality, most diseases are caused and perpetuated by a complex mix of behavioural and physical factors and hence will be best managed by a range of treatments (e.g. lifestyle change, self-management and medication). A failure to appreciate this may inevitably result in sub-optimal management and poorer outcome.

- Lie. No patients also accept this but the PACE authors and associates have manipulated the BPS model for their own and insurers financial gains.



The continued debate on the PACE trial seems to miss the fact that science is incremental. One study rarely has all the answers, especially for a heterogeneous and complex condition such as CFS.

-
Lie. The PACE trial has had a gigantic step in changing guidelines around the world and the effect on treatment for the DWP and insurers. It has also had a massive impact on preventing biomedical research given the widely touted benefits in the media about the success of exercise on ME.



The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area. Who would want to set up a scientific base camp in an area where you will get continuously attacked should your research findings or clinical trials support an unpopular treatment? The opportunity cost of continuous criticism of the PACE trial over 6 years ago is likely to be a considerable reduction in researchers wanting to research to further understand CFS or do further treatment trials.

- Lie. No nice try, complete red herring and disproved in court of law. Psychiatrist Fraudsters may be deterred in producing fake pseudo science for commercial gains by this criticism. Real scientists are not put off and the evidence is biomedical scientists are increasing despite these threats by psychs of militant threatening patients putting off researchers.



Declaration of conflicting interests The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Big Lie. Atlantis Healthcare is the biggest COI one could have in this article. This needs to be raised with JHP and the authors regulatory bodies for this omission.

P.S. They have not even acknowledged the actual real psychiatric harm on patients on imposing harmful treatments and misleading and lying to patients.
 
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Yogi

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1,132
And just when I though I had seen it most if it.

There is a lot more to these PACE guys and their associates. I had never seen this. Who has paid the expenses for holiday (sorry conference) for them in the Cook Islands.

More on Keith Petrie and his COI's.




http://www.meactionuk.org.uk/Cook_Island_Psychological_Interventions_in_Physical_Health.htm …

Would be interesting to find out who paid for this and were they declared if required to do so during their publications at the time.
 
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Valentijn

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15,786
An impressive bunch of quackery:
  • Stress and speed of wound healing: does emotional writing help?
  • Short and long-term immune changes following emotional writing
  • Psychosocial Intervention in Persons Dealing with Cancer: Rationale, Empirical Support, and Proposed Health-Related Mechanisms
  • The effects of emotional writing after myocardial infarction
  • The use of a brief distraction technique as a coping strategy during cancer genetic assessment
  • Psychosocial risk factors for irritable bowel symptoms following camplylobacter gastroenteritis: A prospective investigation
And seriously?:
  • Non-insight minimal and maximal interventions for maximally annoying patients
What's missing:
  • CFS
  • PACE

Some blatantly bizarre theories of healing completely biological issues with psychological techniques. And maybe they're no longer feeling quite so confident in trashing CFS or talking about how awesome they feel PACE was.
 

TiredSam

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Winfried Rief

Non-insight minimal and maximal interventions for maximally annoying patients

Well how utterly charming. One to keep an eye on in Germany I think.

EDIT: The title of this presentation is ambiguous. It's not clear whether Herr Rief gave advice on how to deal with those patients who were most annoying, or how to maximally annoy your patients. Judging from the behaviour of the attendees in the 14 years since, it could well have been the second.
 
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JaimeS

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The effects of emotional writing after myocardial infarction

I predict lots of metaphors about the heart and... the HEART.

Y'know.

The use of a brief distraction technique as a coping strategy during cancer genetic assessment

Quick, look over there! YOUHAVECANCER.

Wow.

And maybe they're no longer feeling quite so confident in trashing CFS or talking about how awesome they feel PACE was.

Whether they are or aren't, they're going to have to pretend to be excited about it until the end of time, I think


....huh. So shares were... all from the UK. Shocking. Shocking, I tell you.

The list from Twitter is pretty hilarious, though. No one even steps up to defend or even express a more neutral view. For those who are too brain fogged to read, it can be summarized as "what bunk!"

J
 

char47

Senior Member
Messages
151
The way their 'approach' is wrapped up in talk of 'empowering patients' is very creepy and quite seriously worrying.
Indeed, i was immediately reminded of the DWP's language about "supporting" people back into work, and about how they cant in good conscience leave people to "languish on benefits". Anyone who's ever been in a properly abusive. controlling relationship will recognise this behaviour. It's vile. Virtuoso gaslighting.

Can you think of a more dystopian sentence? This blows me out of the water. "Giving patients the power to OBEY." How positively 1984

I agree. It's Orwellian. The use of the word 'non-adherence' is interesting I feel. Substitute 'non-compliance' which is really what they're attempting to correct and things sound considerably more distasteful. If that's even possible.
Yeah it makes one shudder. But what gets me is how many people just seem to lap it all up. Deeply frightening imo.
 

JaimeS

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I
But what gets me is how many people just seem to lap it all up. Deeply frightening imo.

I don't know that there are many true believers. I think it's mostly monetary and status-based reasoning, but couching it in friendlier-seeming language allows lazy people to skim past, and those who are using said language to feel better about their actions. It's the same reason a mafia boss says "sleep with the fishes" instead of "kill them now and dump them in a large body of water" and his flunky says "you want me to take care of it, boss?" which -- surprisingly enough -- also means "kill them now and dump them in a large body of water". (A lot of things translate to this in mafia-speke, I guess.)

Everyone in the room knows what sleep with the fishes means and taking care of it means. Everyone knows what's being said and what's meant by what's being said. But they use that metaphorical language anyway. The point is, we use innuendo about what we're doing when we know society wouldn't approve, or when we ourselves know we ought to be ashamed.
 

sb4

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Ahh, the ol' "don't listen to my detractors as a very small minority of them used threats"

I am particularly annoyed at "science is incremental" this attitude is stifling new theories in areas where the incremental additions are built on a false foundation.

The problem is that mind based therapies (meditation, working through unhealthy thoughts, biofeedback, etc) definitely do help somewhat so they can always use this evidence to point to this kind of treatment being beneficial. Unfortunately it's not until a physical biomarker is found that this can be dismissed as a secondary treatment.
 

Snow Leopard

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I don't know that there are many true believers. I think it's mostly monetary and status-based reasoning, but couching it in friendlier-seeming language allows lazy people to skim past, and those who are using said language to feel better about their actions. It's the same reason a mafia boss says "sleep with the fishes" instead of "kill them now and dump them in a large body of water" and his flunky says "you want me to take care of it, boss?" which -- surprisingly enough -- also means "kill them now and dump them in a large body of water". (A lot of things translate to this in mafia-speke, I guess.)

You seem to know a lot about this mafia-speak. :ninja:

Seriously though, lots of people want to believe that CFS is primarily due to psycho-social factors, because the alternative makes them uncomfortable - it means that society has been deliberately neglecting/ignoring the needs of patients for decades. It's easier to blame individuals for their own misfortune.
 

slysaint

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You seem to know a lot about this mafia-speak. :ninja:
91267204-288-k347197.jpg
 

Jonathan Edwards

"Gibberish"
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And just when I though I had seen it most if it.

There is a lot more to these PACE guys and their associates. I had never seen this. Who has paid the expenses for holiday (sorry conference) for them in the Cook Islands.

Would be interesting to find out who paid for this and were they declared if required to do so during their publications at the time.

This looks like a conference with invited participants paid for by a health care company. I have been to similar events. As far as I can see it happened in 2003 but that may be a mistake. Simon Wessely seems to have had his whole family invited. Keith Petrie did the welcome which suggests that the company has something to do with him.

My immediate thought is that the company involved had a large windfall contract, probably from a government healthcare system and this was a thank you. Taken in the context of the Department of Employment being involved in PACE the whole thing looks seriously dodgy. I too would be interested if anything more can be unearthed.
 

duncan

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2,240
Everybody loves a boondoggle.

When the world is criticizing your ideology, and your ship not only has sailed, but is in the process of capsizing, what is the only reliable fix? Road Trip!!

But someone should volunteer it is only a short term fix...
 

Large Donner

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In reality, most diseases are caused and perpetuated by a complex mix of behavioural and physical factors

Can we have a reality based source for this statement please? Physical factors is such a broad term it can basically mean anything you want it to mean and include deniability if your model is later proven wrong or flawed.

and hence will be best managed by a range of treatments (e.g. lifestyle change, self-management and medication)

Lifestyle change....
Ermmmm that's what we are all doing and the change in lifestyle was brought upon us by the disease.

Self-management..... ah so not CBT and GET based on failed models then but Pacing as we keep bloody telling you!

Medication......What medication??!!!
 
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JaimeS

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Seriously though, lots of people want to believe that CFS is primarily due to psycho-social factors, because the alternative makes them uncomfortable - it means that society has been deliberately neglecting/ignoring the needs of patients for decades. It's easier to blame individuals for their own misfortune.

It's also because it means that by living a clean and virtuous life, they are invulnerable to harm. Quoting myself:

Yet the power of negative thinking, a la 'the Secret', is still a favorite rationale of the public. By being lazy -- or Type A overachievers, depending on who you ask -- we have primed our bodies to express illness. This expresses 'belief in a just world': the sick must have done something to earn their illness, or else anyone can get it for no reason at all, which would be unfair and therefore impossible. Yet a perceived moral high ground has no protective power. Anyone can get a chronic illness.
 
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