Fight fire with fire - why not slam PACE academically?

[Hutan]

Some recent posts on PR have got me thinking about how to make the problems with PACE that are so obvious to us clear to a wider audience. For example, @Valentijn's recent post:

Yes, these are flaws which are inherent in other wikis. They suffer from a complete deference to published authority, with no allowance for basic rational scrutiny regarding the quality of that research (unless a bigger authority has done it). Hopefully we can learn from their problems and avoid them in the ME wikipedia.

It's the same story when trying to communicate with national authorities about flawed treatment guidelines for ME/CFS. They point to Cochrane reviews of published papers. End of story.

David Tuller's blogs and his interview are great. The letter signed by all sorts of eminent people is too. But I think what we need is a paper published in a major journal (the Lancet ) picking PACE apart. I know, there is so much to be said, it would be hard to fit it all in a single paper. But still.

And I don't mean arguing around the edges as to whether the economic benefit of CBT was calculated correctly. I mean making it clear that there was no long term benefit from the interventions by any objective measure, major lapses in proper scientific process and no proper evaluation of harms. I don't think we have to wait for the data before a formal critique can be published.

The article that @worldbackwards posted in this thread
http://forums.phoenixrising.me/index.php?threads/more-data-sharing-high-jinks.45759/
is worth a read. The story is of how a junior researcher found a major error in the papers of established researchers. It was only when the established researchers realised that a paper written by the junior researcher exposing the errors was going to be published that they finally issued a correction.

Too much to hope for that the psychobabblers would change their story now. But, having a well written published academic paper setting out the errors of PACE in our arsenal when we next try to point out the problems of PACE and GET and CBT might give others pause for thought.

 

[Lindberg]

In addition to what is said above, has anyone been in contact with UKRIO regarding PACE? It seems like charities involved can turn to UKRIO and ask for investigation about fraud and misconduct.

 

[A.B.]

The PACE authors know how to play the political game. Patients have been too naive in that regard.

In particular, we should attack the fact that the results are more consistent with placebo effects being documented than anything else, and then attack the presumed cost effectiveness, then suggest that the money spent on CBT/GET services be invested into biomedical research instead.

If the results had been accurately reported, PACE should have been the end of the psychosocial illness paradigm.

 

[Hutan]

UKRIO - indeed looks useful.
http://ukrio.org/about-us/

The UK Research Integrity Office (UKRIO) is an independent charity, offering support to the public, researchers and organisations to further good practice in academic, scientific and medical research. We promote integrity and high ethical standards in research, as well as robust and fair methods to address poor practice and misconduct. We pursue these aims through our publications on research practice, in-depth support and services for research employers, our education and training activities, and by providing expert guidance in response to requests for assistance from individuals and organisations.

Established in 2006, our aims are to:

• Promote the good governance, management and conduct of academic, scientific and medical research.

• Share good practice on how to address poor practice, misconduct and unethical behaviour.

• Give confidential, independent and expert advice on specific research projects, cases, problems and issues.

 

[Lindberg]

Swedens counterpart to UKRIO has looked into Macchiarinis research and among other things expressed concern about him not releasing rawdata...

 

[Lindberg]

Are either of you, Hutan or AB, from the UK? Would be good if someone from the UK could look into UKRIO more to see if it would be a good idea to get in contact with them. Perhaps Dr Charles Shephard or someone from ME Association?

 

[Esther12]

I think that there are lots of attempts at things like this, but the more people having a go the better imo! UK academia seems pretty resistant to acknowledging the problems with PACE, but the more people we have raising concerns in different way the more likely we are to get lucky with one of them.

 

[Keela Too]

UKRIO - indeed looks useful.
http://ukrio.org/about-us/

That looks an interesting site. However it seems they are rather more aimed at pre-emptive actions, rather than retrospective investigation?

Also I wonder how they are funded?
Would the advice be something the individual seeking their advice would have to pay for?

 

[Lindberg]

Perhaps UKRIO would be a good place to express concern about MAGENTA trial which is underway? And from there go to PACE?

But if someone with good insight into the UK politics and people connections first could take a look at the UKRIO board? That might give a hint if it could be a fruitful way to go or not...

 

[Yogi]

@Lindberg you are coming here with great info. I had never even heard of this organisation,

http://ukrio.org/get-advice-from-ukrio/

 

[Keela Too]

@Lindberg you are coming here with great info. I had never even heard of this organisation,

http://ukrio.org/get-advice-from-ukrio/

Ah .. well spotted... Free of charge for patients...

 

[Hutan]

Are either of you, Hutan or AB, from the UK? Would be good if someone from the UK could look into UKRIO more to see if it would be a good idea to get in contact with them. Perhaps Dr Charles Shephard or someone from ME Association?

Sorry, I'm from New Zealand. I agree that this is something someone like @charles shepherd would be well placed to do.

 

[Seven7]

I thought the same, best is to publish paper highlighting the issues " formally" we can write papers using the same data and conclude the right things

 

[alex3619]

I think that there are lots of attempts at things like this, but the more people having a go the better imo! UK academia seems pretty resistant to acknowledging the problems with PACE, but the more people we have raising concerns in different way the more likely we are to get lucky with one of them.

This has indeed been done, several times now. Its not easy to get them published in major journals though, and considering possible issues with reviewing and the editor at Lancet its extremely unlikely they will ever consider it. What typically happens is it winds up being published in some obscure journal and very few doctors will ever see it.

Considering how many methodological issues there are with PACE it would be very hard to write them all up in a single paper to an academic or scientific standard. Tuller had to gloss over things and it was still very long, and his article was then published in Virology blog. A great number of papers, each looking in depth at a single methodological flaw, while briefly mentioning others in the discussion section or introduction, might be a way to go.

 

[slysaint]

Canadian Consensus Criteria (CCC)

SELF-HELP STRATEGIES (SHS)
A hypothesis underlying the use of Cognitive Behaviour Therapy(CBT) for ME/CFS is based
on the premise that the patient’s impairments are learned due to wrong thinking and
“considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the
interaction of cognition, behaviour, and emotional processes. The patient merely has to
change their thinking and their symptoms will be gone. According to this model, CBT should
not only improve the quality of the patient’s life, but could be potentially curative”
Supporters suggest that “ideally general practitioners should diagnose CFS and refer patients
to psychotherapists for CBT without detours to medical specialists as in other functional
somatic syndromes”.
Proponents ignore the documented pathophysiology of ME/CFS,disregard the reality of the patients’ symptoms, blame them for their illness, and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the
clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc.
Dr. A. Komaroff, a Harvard based world authority, stated that the evidence of biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of
underlying psychiatric distress. It is time to put that hypothesis to rest”. Some physicians,
who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them “CBT”. We urge such doctors to use the term “Self-Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy”.

 

[Dr Speedy]

Some recent posts on PR have got me thinking about how to make the problems with PACE that are so obvious to us clear to a wider audience

Using the conclusions from the following excellent review more will help: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review doi http://dx.doi.org/10.16966/2379-7150.124

 

[Esther12]

Using the conclusions from the following excellent review more will help: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review doi http://dx.doi.org/10.16966/2379-7150.124

That reminds me - you mentioned saying that some of the errors in that paper others had pointed too were, in fact, not errors. I don't think I ever got details of that, and when I started looking through it did seem that there were problems weith the paper.

Some details here:

http://forums.phoenixrising.me/inde...t-in-me-cfs-a-review.43937/page-2#post-714894

What do you think?

 

[Dr Speedy]

It's obviously clear that many people are not aware that I'm severely affected which means I do not have the power to counter the things all the time etc. There are a number of people on this forum who criticize not only this 1 but many other papers, without valid arguments even though they do not see that themselves; but if scientists and professors known for critical analyzing papers and winning awards for publishing them call it an excellent paper which will be used as a reference by many than that says it all.

I think it's more than time that people start to use the fact that the review showed that the PACE trial had a NULL effect and also that the PACE trial proved again that ME/CFS is a physical disease.

 

[Esther12]

I think it's more than time that people start to use the fact that the review showed that the PACE trial had a NULL effect and also that the PACE trial proved again that ME/CFS is a physical disease.

It showed that the PACE researchers are dodgy , but I don't see how PACE proved that ME/CFS is a physical disease.

Lots of people are seriously ill here but we still try to discuss one another ideas, probe and explain our arguments. Lots of scientists and professors said PACE was an excellent trial that led to excellent papers.

 

[barbc56]

if scientists and professors known for critical analyzing papers and winning awards for publishing them call it an excellent paper which will be used as a reference by many than that says it all

I would certainly hope not. I think it goes beyond that.

It doesn't mean that there are many scientists who passively accept a published paper. It probably means that other scientist are agreeing with the methodology used in the PACE study which is different.