de Meirleir's involvement in 'catastrophisation' studies

[A.B.]

Another thing they said in their responses, re the use of subjective questionnaires, is that patients should be trusted to make assessments of their own health. Such a statement either displays incredible ignorance re the nature of their research, or a highly developed sense of irony. Considering that CBT, for the PACE trial, was designed solely to treat maladapative cognition, it means that the premise of the trial was precisely that patients cannot be trusted to assess their own health, and that their 'faulty' thinking should be treated. It's interesting that there was no way of telling whether the patients' beliefs were accurate when a patient reported an improvement; Patients' beliefs were just assumed to be accurate at the end of the trial, whereas they were assumed to be maladaptive at the beginning of the trial. Unless they are still ill, of course, in which case they must still have maladaptive illness beliefs.

Good observation. I think they just needed to downplay the lack of objective improvement.

 

[barbc56]

@Bob

Somehow, I had missed this justification of the PACE trial. Thanks.

Circular reasoning is certainly circular!

Barb

There's a famous study, I believe with asthma medication, where patients reporting improvement did not correlate with physical findings of improvement. I will look for this but just in case it takes me some time to find it, thought I would mention it.

 

[A.B.]

There's a famous study, I believe with asthma medication, where patients reporting improvement did not correlate with physical findings of improvement. I will look for this but just in case it takes me some time to find it, thought I would mention it.

This one http://www.nejm.org/doi/full/10.1056/NEJMoa1103319 ?

Results
Among the 39 patients who completed the study, albuterol resulted in a 20% increase in FEV1, as compared with approximately 7% with each of the other three interventions (P<0.001). However, patients' reports of improvement after the intervention did not differ significantly for the albuterol inhaler (50% improvement), placebo inhaler (45%), or sham acupuncture (46%), but the subjective improvement with all three of these interventions was significantly greater than that with the no-intervention control (21%) (P<0.001).

I don't think it's a coincidence the babblers avoid objective measurements and proper control groups like the plague.

 

[Valentijn]

To see KDM linked with this nonsense seriously reduces his credibility.

It's not uncommon for the last listed author to have had very little involvement in a study. Sometimes it's the statistician, or an "expert" who is not part of the research team but who has given them some background info about the subject.

 

[Sidereal]

Or someone who just provided access to a patient sample.

 

[barbc56]

I found the study. On first glance it kooks like this study fits the BPS model but it's really t about experimental design.

However, from a clinical-management and research-design perspective, patient self-reports can be unreliable

http://www.nejm.org/doi/full/10.1056/NEJMoa1103319

The following article suggests that the term placebo response is more appropriate terminology than placebo effect.

http://www.sciencebasedmedicine.org/spin-city-placebos-and-asthma/

Barb

 

[barbc56]

It's not uncommon for the last listed author to have had very little involvement in a study. Sometimes it's the statistician, or an "expert" who is not part of the research team but who has given them some background info about the subject.

Just to play devil's advocate, if a researcher who believes in the BPS model had any role in studies like this we would be all over them.

I am not making a value judgement here and @Valentijn makes a very good point.

But it's food for thought.

Barb

 

[Dolphin]

It's not uncommon for the last listed author to have had very little involvement in a study. Sometimes it's the statistician, or an "expert" who is not part of the research team but who has given them some background info about the subject.

More commonly I think the most important authors are the first and last authors with decreasing influence from the second author to the second last author

 

[Daffodil]

I dont know why this is even an issue. everyone knows KDM prescribes actual prescription drugs for CFS. i see him myself.

maybe KDM just provided the researchers with some samples to test from his clinic or something..we dont know

 

[Valentijn]

I dont know why this is even an issue. everyone knows KDM prescribes actual prescription drugs for CFS. i see him myself.

Yup. Even when the psychobabblers find low cortisol and their own trial shows that small doses of hydrocortisone are helpful, they still bend over backwards to insist that it never be prescribed to CFS patients clinically. Whereas KDM tests for biological abnormalities and then treats them medically.

At the end of the day, action talks and bullshit walks

 

[barbc56]

At the end of the day, action talks and bullshit walks

.

That expression is hysterical!

Barb

 

[jimells]

I think the potential disadvantages of involving anyone who wants to join are unimportant and easily managed.

To my mind PR is a perfectly good place to have scientific debate.

Maybe if a few well chosen scientists show they are interested in engaging the others will get envious and want to have their turn!

I don't see any reason to restrict access to "scientist only". We haven't done it so far; it seems to work OK. I really appreciate the detailed discussions of published research even if I don't understand much of it. I just take what I can use and leave the rest.

I also occasionally visit the wattsupwiththat.com website. It's run by one of those Evil Climate Deniers (he is a meteorologist). The participants are a mix of actual working scientists and the general public. The debates are interesting. Like here, they dissect actual published research and data.

If more scientists would climb down from their ivory towers (the way Jonathan has here) Joe Sixpack might have a better opinion of them. And be a little more willing to cough up more dough for research.

 

[Dolphin]

Here's the GP study I alluded to before (Bowen et al., 2005):

 

[biophile]

Jonathon Edwards is a rare breed, dipping his feet into the same waters where the patient rabble swim. I bet his experience here generally contradicts the stereotype of forums being an overwhelming cesspool of hatred, negativity, conspiracy theories, quackery, anti-psychiatry, and stupid patients misinterpreting science to suit their agenda. On the other hand, he seems like a curious biomedical researcher, so is naturally going to be more welcomed.

The idea of debating with more researchers had been floated years ago, but some people were concerned that it would create distress by inviting the same 'psychobabblers' who some patients hold partly responsible for their suffering.

The chances of key CBT/GET proponents coming here to defend their ideas and research to the patient rabble are slim anyway. I get the impression that they more interested in academic prestige and that is where their efforts go. Another option may not be a patient forum but somewhere like PubMed Commons. This is limited to PubMed listed authors, but an alternative without this limitation is pubpeer.com where authors are contacted if their paper is commented on.

Hooper's work usually contains many gold nuggets amongst some ore, but it can appear to others as a long rant with arguments which may be sub-optimal. I do not mean any insult to Hooper, I really appreciate his efforts, I'm just being frank.

AFAIK, no one has succeeded in writing a comprehensive but concise summary of the PACE Trial. The story is still being told. The main PACE Trial thread on Phoenix Rising is over 2000 posts long, not to mention additional related threads. However there is a useful summary critique thread which needs to be updated.

 

[alex3619]

I've really found this thread very useful, veering as it does here and there into little gems of insight. I came across this little paper from 2009 which I found really useful (hope it wasn't posted already! If it was blame the fog )

http://bjp.rcpsych.org/content/195/1/3.long

In it it challenges the role of the biopsychosocial model and indeed it asks the very relevant question about priorities. Who prioritises which part? What emphasis is placed on the bio as opposed to the psych as opposed to the social? An interesting little read.

It also provides a good basis for challenging the 'doctor subjective' determinations of the causation and 'maintenance' of ME CFS.

This guy wrote a book on the topic, and I reviewed it on PR several years back, split over three blogs.

 

[Isabelle]

I have long considered it more a cult than anything else,

Apologies, just catching up.

Perhaps they need deprogramming Alex … or at least an intervention.

@NK17

I had a bad flare up after physiotherapy. The physio was busy writing up and insisted I keep going after I’d asked to stop. Being competitive (I was athletic before ME/CFS), or an idiot, (or both) I pushed on. The next day I could barely lift my head off the pillow.

Hope you are feeling much better.

 

[alex3619]

I had a bad flare up after physiotherapy. The physio was busy writing up and insisted I keep going after I’d asked to stop. Being competitive (I was athletic before ME/CFS), or an idiot, (or both) I pushed on. The next day I could barely lift my head off the pillow.

I was on physio for a year. I got worse and worse. It took 15 years after I woke up to the damage before I started to recover. A decade after that and I am mostly recovered from the physiotherapy. You are not alone in wanting to do this, but for me in 1987 I did not even have a CFS diagnosis, that was 2 years later.

 

[Isabelle]

I was on physio for a year. I got worse and worse. It took 15 years after I woke up to the damage before I started to recover. A decade after that and I am mostly recovered from the physiotherapy. You are not alone in wanting to do this, but for me in 1987 I did not even have a CFS diagnosis, that was 2 years later.

Don’t worry Alex. I didn’t go back. It was a shame though the physio before this one was really good. He had been in a hospital and worked with people with severe ME. Having seen severe ME he took ME/CFS very seriously. His approach was very slow and gentle—mostly hydrotherapy. No pushing beyond your limits. Then he left and I got the other guy …

 

[MeSci]

I was on physio for a year. I got worse and worse. It took 15 years after I woke up to the damage before I started to recover. A decade after that and I am mostly recovered from the physiotherapy. You are not alone in wanting to do this, but for me in 1987 I did not even have a CFS diagnosis, that was 2 years later.

I didn't get diagnosed for four years, and had to demand it. The GP seemed very reluctant to diagnose me, and I noticed how hostile he had become when I had an illness he couldn't attribute to anything (if he believed I was ill at all).

So the lying on the floor and struggling to get up stairs was before any diagnosis, when I was still completely in the dark and bewildered about what was wrong. Not resting, not pacing, not avoiding activity, not 'deconditioned'.

BTW, I can now often go up stairs even without my walking stick! Of course it's all thanks to the blessed St Simon Wessely and St Peter White and their wonderful CBT/GET...

NOT.

 

[JalapenoLuv]

I am still feeling my way with trying to understand the psychologists' model of CFS but there seems to me to be a contradiction here.

At first sight it would seem that pain and pain catastrophisation have to be correlated, if pain is subjectively reported and pain catastrophisation is the state of 'thinking pain is worse than it is'. So the correlation is in fact no correlation at all - just writing the same thing down two different ways.

But that must be wrong, if pain catastrophisation is what the psychologists say it is. If pain catastrophisation is thinking pain is terrible when in fact it is not so bad, then pain catastrophisation must be inversely related to pain. Pain catastrophisation cannot occur in a situation where the pain really is bad because it would not be catastrophisation. So they cannot correlate - they should counter-correlate.

Maybe I am oversimplifying but I sense muddled thinking in the psychology world. All they seem to have proved is that their way of measuring pain catastrophisation cannot be measuring that.

The idea is that if their negative beliefs exaggerate the pain that they likewise can be exaggerating the fatigue severity. Lukkahatai's meta analysis on 12 CFS studies came up with (J Psychosom Res. 2013 Feb;74(2):100-9):

Individuals with CFS grouped as high catastrophizers reported significantly greater fatigue severity than the non-catastrophizers [26]. Although the high catastrophizers and non-catastrophizers experienced the same number of CFS-related symptoms, the high catastrophizers reported significantly greater disruption of fatigue with their activities of daily living than the non-catastrophizers [Petrie K, Moss-Morris R, Weinman J. The impact of catastrophic beliefs on functioning in chronic fatigue syndrome. J Psychosom Res. 1995;39(1):31–7.[PubMed]]