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New PACE paper, more SMC spin.

Messages
13,774
Not out yet but there's this from the SMC, although it then got taken off-line:

January 13, 2015
CFS/ME: the next step in the controversy


There are few issues that have created more controversy for researchers than CFS/ME. This disease affects around 250,000 people in the UK and in severe cases results in patients being mostly bedridden and unable to do more than minimal daily tasks such as brushing one’s teeth.

Whilst researchers agree that the disease is real, some patients fear that this potentially debilitating disease is viewed as ‘all in the mind’ and as a result researchers, their findings and even journalists reporting them, have been attacked for their perceived bias. Perhaps the most controversial piece of research was the PACE trial, published in 2011, which suggested that Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) were the most effective ways of treating people.

At that time the researchers were unsure as to why these therapies worked the best. Now, publishing in The Lancet Psychiatry, researchers are able to explain how these therapies work and the, inevitably controversial, implications.

Experts came to the SMC to discuss issues such as:

  • What are these therapies and how do they work?
  • How big an impact do these therapies have on the quality of someone’s life?
  • Do they stop the illness from returning?
  • What does that tell us about the cause of the illness?
  • Are these therapies being widely used?
  • What needs to be done to improve treatment for CFS/ME?


Speakers:

Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry, Psychology & Neuroscience, Kings College London

Dr Kimberley Goldsmith, BRC Lecturer in Clinical Trials, Institute of Psychiatry, Psychology & Neuroscience, King’s College London

Removed from google, but saved by @maxwhd here: https://twitter.com/maxwhd/status/555130020939591682/photo/1

More of the pretence that patients are foolishly angry because they're just so misguided in their understanding of psychiatry and mental health, rather than because PACE are refusing to release results for the outcomes laid out in the trial's protocol and have instead being spinning things to make CBT and GET look better:

https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

Oh the cruel harassment of an FOI request asking for the release of important data! Imagine being so brutally attacked as to be accused of bias! Imagine - the very idea of researchers wanting to hype their results, and being aided by lazy journalists. It's heart breaking. I wonder if they'll do sad faces while talking about 'stigma', even as they try to promote and hide behind this bigotry.

Maybe the British science press might be willing to do a bit of independent research... but I doubt it. The PACE 'Recovery' paper didn't get any press despite being promoted by the SMC, but I think that was largely because reporters remembered having uncritically parroted the even more positive claims about recovery when the first paper came out. "They're now saying only 22% recovered? What cautious researchers, I remember thinking that it should be a third, or maybe 30-40%!" The post-hoc 'recovery' criteria which led to the 22% claim has now been criticised as 'contradictory' by the recent P2P Evidence Review for defining 'normal' fatigue and disability in a way that overlaps with their own criteria for 'abnormal' fatigue and disability - maybe some 'experts' repeating the things patients have been saying for years will mean a couple of journalists actually take the time to think things through for themselves.

Also, I like how they now use the dismissive 'all in the mind' phrase to encapsulate patient's foolish fears. This old discussion from Wessely and Shorter is of interest here imo:

Wessely. Professor Shorter-it is fascinating to hear you
talk on psychology, but can I take you back to history?
You said two things-first, that you have learned that the
essential way of dealing with these problems clinically is
to take them seriously, emphasize their genuine nature and
so on. That is clinical skill and clinical judgement.
But you also said that the way in which these syndromes
finally go is when the word gets out that they are
really "all in the mind" and not to be taken seriously.
There
is a clear irony and contradiction between what is good
clinical practice for the individual, and what you propose
would ultimately alter the disease attributions. How are we
to resolve this irony?

Shorter. I do not see a contradiction here at all. The physi-
cian has a whole bag of psychological tricks for dealing
with chronic psychosomatic illness, chronic somatization.
It is very important not to legitimate these toxic diagnoses,
and there is no doubt that multiple chemical sensitivity and
chronic fatigue syndrome are toxic diagnoses, because they
cause the patients to become fixated upon their symptoms
and to dig in even further so that they acquire a sense of
hopelessness.
Now, you do not have to endorse the patient's illness
representations in order to treat the patient in a humane and
serious way in the patient-doctor relationship. You do not
have to contradict the patient. You can diplomatically slide
over the illness attributions in silence, at the same time
taking the patient's symptoms seriously in other ways.

Wessely. Suppose a transcript of the proceedings here was
circulated among a group of patients who believe they
have toxic dental amalgam or suffer from multiple chemi-
cal sensitivity, it would be clear that the clinicians in this
audience would no longer get any patients. Once it was
known that they had presumably endorsed the views they
had heard at this symposium, that would be the end of their
clinical practice. They would no longer be able to do the
good things that you have said. So there is a fundamental
tension between the public good, and the clinical necessity
of treating patients, and it's one that is hard to resolve.

Shorter, The tension is between the need to be effective
health care educators and the need to have patients. This is
clearly a moral choice, and I am sure everybody in this
room would opt for the side of the good guys saying, "Our
role as physicians is to educate the vast public, which
consists of millions and millions of people, that we are
dealing with hocum here, rather than to cling to these few
extra patients. We have plenty of patients after all who
have plenty of other problems".

http://forums.phoenixrising.me/showthread.php?14523-1997-Wessely-thing-(minor-more-morality-and-philosophy-than-CFS)

Just to remind people, this is how the PACE mediation results were presented earlier:

How do treatments for chronic fatigue syndrome work? Exploration of instrumental variable methods for mediation analysis in PACE – a randomised controlled trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care
Kimberley Goldsmith
1*, Trudie Chalder1, Peter White2, Michael Sharpe3 and Andrew Pickles1

  • * Corresponding author: Kimberley Goldsmith
Author Affiliations

1 Institute of Psychiatry, King's College London, DeCrespigny Park, London, SE5 8AF, UK

2 Wolfson Institute of Preventative Medicine, Queen Mary, University of London, EC1M 6BQ, UK

3 Department of Psychiatry, University of Oxford, OX3 7JX , UK

For all author emails, please log on.

Trials 2011, 12(Suppl 1):A144 doi:10.1186/1745-6215-12-S1-A144

The electronic version of this article is the complete one and can be found online at: http://www.trialsjournal.com/content/12/S1/A144


Published: 13 December 2011
© 2011 Goldsmith et al; licensee BioMed Central Ltd.

This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Objectives
Background

Chronic fatigue syndrome (CFS) is characterised by chronic disabling fatigue. The PACE trial compared four treatments for CFS and found that for therapies added to specialist medical care (SMC), cognitive behaviour therapy (CBT) and graded exercise therapy (GET) were more effective than adaptive pacing therapy (APT) and SMC alone in improving physical function and fatigue. What are the mechanisms of these treatments? CBT and GET may affect outcomes through thought processes and behaviours (mediators). Traditional Baron, Judd and Kenny (BJK) methods for estimating mediation effects can be subject to bias; instrumental variable methods (IV) can address this problem. The aims were:

To explore potential IVs for causal analysis of mediation in PACE.

To compare IV estimates to those obtained using BJK methods, which are unbiased only under restrictive assumptions such as no unmeasured confounding.

Methods
Two treatment arms were compared at a time. BJK methods were applied using three ordinary least squares (OLS) regression models. IV methods were applied by compiling a list of baseline variables that could act as IVs in interaction terms with treatment arm and then assessing these using OLS with the mid-treatment measurement of the putative mediator as the outcome. Instrument strength was assessed using the R2 change between models with main effects only and with the interaction term. Two-stages least squares regression (2SLS) was used to estimate effects in the presence of IVs. Collective instrument strength was assessed using an F test and partial R2.

Results
The IVs were weak, with a maximum R2 change of 0.03. The five strongest IVs were therefore used in the 2SLS in each case. There was modest mediation of CBT and GET effects (approximately 20% of the total effect). The IV-derived estimators were somewhat different in magnitude than the BJK estimators and were less precise. There is scope for modelling a common effect of mediators on outcomes across trial arms.

Conclusions
There was evidence for modest mediation of CBT and GET effects. Potential IVs for the study of PACE treatment mechanisms can be found, however, these were weak. Combining trial arms may allow for more efficient analysis using IVs.

Sounds like they've been sexed up since.

I wonder if they'll mention the evidence from PACE that CBT and GET just lead to minor improvements in questionnaire scores in a nonblinded trial - like homeopathy and lots of other worthless interventions. When pushed to include more objective evidence as part of the PACE trial, as actometers were only used at baseline, they stated:

"We have used several objective outcome measures; the six minute walking test [1], a test of physical fitness [2], as well as occupational and health economic outcomes [3]. Although we originally planned to use actigraphy as an outcome measure, as well as a baseline measure, we decided that a test that required participants to wear an actometer around their ankle for a week was too great a burden at the end of the trial. We will however test baseline actigraphy as a moderator of outcome."

http://www.biomedcentral.com/1471-2377/7/6/comments

None of them showed imporovement for CBT or GET other than a statistically significant improvement for the 6mwt post-GET that did not meet the criteria for clinical significance that was used for the other PACE outcome measures.

Since that point we've also had the public release of old data from CBT trials showing that CBT led to improvements in questionnaire scores, but not in the amount of activity patients could actually do when measured objectively with actometers: http://www.bmj.com/rapid-response/2...-released-showing-there-was-not-statistically

What do we reckon the new results will be presented as? More confounds sold as breakthroughs?

  • People who report improvements in symptoms also reported being more positive about treatment... therefore we must put the most positive spin on treatments possible in order to promote these empowering cognitions!
  • People who report improvements in symptoms also reported feeling less depressed... important but controversial evidence that disability is perpetuated by emotional disorder in these patients. Sadly this will be rejected by some stubborn dualists!
  • People who report improvements in symptoms will also report feeling less concerned by symptoms... we must convince patients not to worry about symptoms. The negativity around this condition is oh so very destructive!
  • People who are most likely to believe that they have control over symptoms are most likely to report an improvement in symptoms.... there's no potential problems with bias in a non-blinded trial. Don't worry about that!
  • People who think that their problems have a psychological cause are most likely to report improvements following psychological therapies... if only we could convince everyone of the importance of psychosocial perpetuating factors, then the NHS could devote even more resources to cheap and effective CBT!
 
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Messages
13,774
PS: Maybe we should keep this thread for any press coverage/spin, and start a new thread for the emergence of the paper?

Also... probably worth not putting too much time into keeping up with this now if you're doing things for the P2P. The whole 'antipsychiatry'/fear of stigma bigotry really bugs me though - hard not to be pissed off by it.
 

A.B.

Senior Member
Messages
3,780
Whilst researchers agree that the disease is real, some patients fear that this potentially debilitating disease is viewed as ‘all in the mind’ and as a result researchers, their findings and even journalists reporting them, have been attacked for their perceived bias.

A straw man is a common type of argument and is an informal fallacy based on the misrepresentation of an opponent's argument.[1] To be successful, a straw man argument requires that the audience be ignorant or uninformed of the original argument.

http://en.wikipedia.org/wiki/Straw_man
 

charles shepherd

Senior Member
Messages
2,239
There is likely to be extensive media coverage in the UK press of this new Lancet paper once the embargo is lifted at midnight.

The MEA has a statement that has already been sent to the press and this has resulted in a number of enquiries from the serious health correspondents.
 

chipmunk1

Senior Member
Messages
765
Whilst researchers agree that the disease is real, some patients fear that this potentially debilitating disease is viewed as ‘all in the mind’ and as a result researchers, their findings and even journalists reporting them, have been attacked for their perceived bias.

of course it is all in the mind.

has there ever been a treatment with medications aside from antidepressants? Answer: No
Has there ever a therapy that wasn't mostly behavioural? Answer: No

Since the treatment has never differed from a psych treatment one has to conclude.

Either it is viewed as all in the mind or it is at least treated as if it were all in the mind.

all this talk about "science" is disgusting. Psychobabble is at best a social science at worst a pseudoscience.

they should stop pretending they are scientists with a good understanding of the human brain. This will be possible maybe 50-70 years from now. Not today. Surely not with 100 year old freudian theories or behavioural idiocy from the fifties.
 

Daisymay

Senior Member
Messages
754
Groan......

Charles, Ian LIpkin spoke at the SMC to journalists (and to SMC employees) when he was over for the UK Collaborative Conference did he not?

How did it go?

What was the reaction of the journalists and the SMC?

One would have hoped that having heard someone of the calibre of Lipkin talk about his (and others) research on ME, stating therefore that it is an organic disease, journalists would have seen the light and seen that the psychiatric paradigm is invalid.

Did that happen in any shape or form?

Thanks.
 

user9876

Senior Member
Messages
4,556
There is likely to be extensive media coverage in the UK press of this new Lancet paper once the embargo is lifted at midnight.

The MEA has a statement that has already been sent to the press and this has resulted in a number of enquiries from the serious health correspondents.
I hope you remind the press that this is a group that redefined recovery to be not quite as well as the trial entry conditions and are suppressing trial results as defined in their original protocol. And suggest that the press should ask in any press conferences why results from the PACE trial are being kept secret.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Shorter, The tension is between the need to be effective
health care educators and the need to have patients.

Dumb. Dumb. Dumb. How could they allow themselves to be recorded while admitting that they lie for profit?
 

A.B.

Senior Member
Messages
3,780
of course it is all in the mind.

has there ever been a treatment with medications aside from antidepressants? Answer: No
Has there ever a therapy that wasn't mostly behavioural? Answer: No

Since the treatment has never differed from a psych treatment one has to conclude.

Either it is viewed as all in the mind or it is at least treated as if it were all in the mind.

Yes, but this is not the reason why the PACE trial is being criticized. The PACE trial is about the claim that exercise and belief modifications can reverse the illness. It is criticized for nonsensical use of statistics, flawed patient selection criteria, nonsensical definition of recovery, and others. If we stick to objective criteria, the PACE trial is evidence that GET and CBT are not effective. Finally, there are also clear conflicts of interests: it was partially funded by the UK government agency that distributes disability benefits, and several of the investigators had ties to the insurance industry.
 

charles shepherd

Senior Member
Messages
2,239
Groan......

Charles, Ian LIpkin spoke at the SMC to journalists (and to SMC employees) when he was over for the UK Collaborative Conference did he not?

How did it go?

What was the reaction of the journalists and the SMC?

One would have hoped that having heard someone of the calibre of Lipkin talk about his (and others) research on ME, stating therefore that it is an organic disease, journalists would have seen the light and seen that the psychiatric paradigm is invalid.

Did that happen in any shape or form?

Thanks.

Reply:

Yes, Ian had to leave our London meeting earlier than planned to dash over to the SMC for a briefing with medical journalists before flying back to America

Before departing for SMC I understood (as did he) that a number of top rank health and science journalists were going to be there

Ian was briefed on key issues relating to ME/CFS here in the UK before he left for SMC

Unfortunately, I did not see Ian after the SMC meeting as he was then on his way to Heathrow and we never managed to find any press reports the following day

All rather strange…

Now you mention it I will try and find out what happened last September - if I have time to do the detective work!
 

chipmunk1

Senior Member
Messages
765
Now, you do not have to endorse the patient's illness
representations in order to treat the patient in a humane and
serious way in the patient-doctor relationship. You do not
have to contradict the patient. You can diplomatically slide
over the illness attributions in silence, at the same time
taking the patient's symptoms seriously in other ways.

Translation: You just tell them lies and it is ethical to do so.

Now i need to log-off and treat my helicobacter with positive affirmations.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
I'm surprised that the Lancet is going here again. I thought they might have learned at least some lessons about how not to mock an entire patient community, and lessons about how their peer review process totally failed to serve the public. But perhaps the Lancet Psychiatry is independent enough from the main publication to not be aware of the lessons that should have been learned. Or perhaps I just have far too much faith in human nature, and I shouldn't just assume that supposedly intelligent people take on board information and amend their world-view according to the evidence and information that they are presented with.
 
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Messages
13,774
I'm surprised that the Lancet is going here again. I thought they might have learned at least some lessons about how not to mock an entire patient community, and lessons about how their peer review process totally failed to serve the public. But perhaps the Lancet Psychiatry is independent enough from the main publication to not be aware of the lessons that should have been learned. Or perhaps I just have far too much faith in human nature, and I shouldn't just assume that supposedly intelligent people take on board information and amend their world-view according to the evidence and information that they are presented with.

When people are criticised some will take the time to look at the evidence and consider whether any of the criticism was justified, some will close ranks or just assume that their critics must be ill-informed or unreasonable.
 

Daisymay

Senior Member
Messages
754
Reply:

Yes, Ian had to leave our London meeting earlier than planned to dash over to the SMC for a briefing with medical journalists before flying back to America

Before departing for SMC I understood (as did he) that a number of top rank health and science journalists were going to be there

Ian was briefed on key issues relating to ME/CFS here in the UK before he left for SMC

Unfortunately, I did not see Ian after the SMC meeting as he was then on his way to Heathrow and we never managed to find any press reports the following day

All rather strange…

Now you mention it I will try and find out what happened last September - if I have time to do the detective work!

Thanks Charles, yes strange indeed, or perhaps not really.

Please do try and find out.

Have you noticed any glimmer of change in journalists views of me ME since that time?