Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

Hello all,

I'm pleased to report that our major critique and reanalysis of the PACE trial has been accepted for publication in BMC Psychology.

Title: Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

Authors: Me, Tom Kindlon, Alem Matthees, Robert Courtney, Keith Geraghty, David Tuller, and Bruce Levin.

Here is the abstract:

The fully formatted version will be available soon at the journal website and will be open access (I'll post a link as soon as one's available). But for those who can't wait that long, here is my own version, which the journal rules allow me to circulate.

Or you can download it here:
https://www.researchgate.net/public...recent_major_trial_of_graded_exercise_and_CBT

Thanks to all those not mentioned in the author list who contributed by reading our drafts, answering our questions, and discussing the issues with us.

 

Just read it ...very balanced And damming report ...I also had fun trying to work out who wrote each bit in the discussion

Thanks to all for this timely issue

 

Great article! I am looking forward to the published version. Many thanks to the authors for this important paper!

 

Very comprehensive, well written, and damning.

Thank you to everyone who was involved, however much they contributed. Grateful for all your efforts.

 

Excellent report that really lays bare the design flaws and the misleading/biased/contrived claims of 'recovery'. Thank you to all of the authors.

 

Oh wow! Huge! Thanks!

 

Excellent, clearly written, concise and damning!

Sincere thanks to all the authors for all your work and effort.

Now all we need is for the Lancet and powers that be to actually look at all the evidence, do their job and take action to halt the use (abuse) of CBT/GET as treatments for ME/CFS.

The longer this takes, the worse it looks for them and their institutions. There is no excuse.

 

douze points


"In sum, the analyses
that were the least complimentary to CBT and GET
never appeared in the published reports; the
analyses that showed these interventions in a more
favourable light were the only ones to be published."

"Turning now to the recovery rates, the late changes
to the definition of recovery made it much easier
for a patient to qualify as recovered. These changes
were quite substantial."

as SW said
"I don't mind people disagreeing on measures of recovery.
They changed the recovery measure because they realised
they had gone too extreme and they would have the problem
that nobody would recover"

 

Now this is what real science looks like.

Yes, it is now way past there being any reasonable or acceptable excuse for the medical profession and governments failing to deal with this properly.

 

It looks excellent, and is such an important paper. It's the culmination of years and years of determination and hard work to expose the truth about PACE and those behind this deserve massive gratitude. Well done!

 

Simply amazing. This is so good!!!

 

Excellent! I especially like ...

... which smacks very strongly of expectation bias, depending on what expectation the treatment had instilled. As the author's very insightfully identify, any real improvement would show no such discrimination.

 

This is excellent work. The truth was hidden in the data all along as was suspected. The conductors of the PACE study blatantly misrepresented the data for their own ends. This is most unconscionable because of harm caused to the patients in the study and beyond. Even with all this effort to uncover the truth, the fat cats behind this study will remain untouchable.

 

Just used my lunchbreak to plough through this... it's excellent. And just in time for submission to a NICE review!

 

If I remember right, GET participants were told that GET would give them better physical function.

 

Considering that an SF-36 physical functioning score of 85 is the bottom 7th percentile of the population, it is quite astounding that those "recovery" rates were 7% (CBT), 4% (GET), and 3% (control). Probably more than 7% of the population has chronic illnesses. The PACE trial in fact proves that CBT and GET do not work.

An SF-36 physical functioning score of 60 is somewhere around the bottom 1-2 percentile of the population. I really can't fathom how the Lancet published a paper with that "recovery" level. It's like the reviewers must have had no knowledge whatsoever about SF-36 and didn't bother to look it up but somehow were reviewers.

I mean, silly PACE trial researchers, why didn't they go just a tiny bit further and make the recovery level 0? Then they would have gotten 100% recovery rates for any and all diseases and accomplished much more!

 

In fairness to the Lancet, the recovery paper by PACE was published in Psychological Medicine in 2013. Lancet published the primary PACE paper, in 2011, that made the improvement claim.

White PD, et al.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.
Lancet. 2011; 377:823-36.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

White PD, et al.
Recovery from chronic fatigue syndrome after treatments given in the PACE trial.
Psychological Medicine 2013; 43:2227-35.
http://journals.cambridge.org/abstract_S0033291713000020

 

If only the Lancet were interested in fairness to us.

 

and in fairness to the truth, I wrote this to AfME on 14th March 2011 (please excuse errors):

"Dear AfME,

I am just skim-read your article about the PACE study on page 4 of the Spring issue of InterAction, and hope that your scientists will be producing a detailed critique of the study.

A very quick look at the main study paper reveals a number of areas which merit question. For example, an overwhelming proportion of people initially approached to participate were excluded, and the expectations of those who did participate appear highly atypical, but concur closely with outcomes. The study sample may have been an overly self-selected sub-group. It is likely, for example, to have excluded people who have previously tried GET and experienced adverse effects, as in your own studies.

Unfortunately I cannot spare the time to analyse the study thoroughly myself without remuneration, being a sufferer myself who is struggling to make ends meet and suffers severe adverse effects from over-exertion.

Regards,"

That was before my more-recent worsenings. I don't think there was any answer in the magazine; I certainly did not receive any answer myself.