Once again, the PACE authors respond to concerns with empty answers, 2017, Tuller

[MSEsperanza]

Tuller D. Once again, the PACE authors respond to concerns with empty answers. Journal of Health Psychology. 2017;22(9):1118-1122. doi:10.1177/1359105317703788

Abstract

In their response to Geraghty, the PACE investigators state that they have “repeatedly addressed” the various methodological concerns raised about the trial.

While this is true, these responses have repeatedly failed to provide satisfactory explanations for the trial’s very serious flaws.

This commentary examines how the current response once again demonstrates the ways in which the investigators avoid acknowledging the obvious problems with PACE and offer non-answers instead—arguments that fall apart quickly under scrutiny.

(This is a commnentary on: White PD, Chalder T, Sharpe M, et al. Response to the editorial by Dr Geraghty. Journal of Health Psychology. 2017;22(9):1113-1117. doi:10.1177/1359105316688953 )

 

[MSEsperanza]

The table of contents of the Journal of Health Psychology's 2017 Special Issue on the PACE trial is linked in the S4ME Science Library.

I thought it's worthwhile to post some of these articles on the forum so they're easier to find for people new to the topic.

I also found it worth to re-read them in the light of some individuals' and Royal Colleges' weird reaction to the new NICE guidelines on ME/CFS.

See also:
Edwards J. PACE team response shows a disregard for the principles of science. Journal of Health Psychology. 2017;22(9):1155-1158. doi:10.1177/1359105317700886

Thread here

 

[MSEsperanza]

From the response by the PACE team:

"We stand firmly by the findings of the PACE trial, which, along with other studies, provide patients, healthcare professionals, and commissioners with the best evidence that both CBT and GET are safe and effective treatments for this chronic and disabling illness. Others share this view (National Institute for Health and Clinical Excellence, 2011; NHS Choices, 2011; The Lancet, 2011, 2015).

"These findings are good news for patients who, in our experience, just want to get better. Of course, we need further trials, not only of CBT and GET but also other treatments. To this end, we hope that editorials such as that by Dr Geraghty do not discourage others from doing such research."

The references to those "who share this view" are:

1) National Institute for Health and Clinical Excellence, 2011
= Review of Clinical Guideline (CG53) – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of chronic fatigue syndrome, myalgic encephalomyelitis (or encephalopathy) in adults and children. Available at: https://www.nice.org.uk/guidance/cg53/evidence/review-decision-2011-546258781

The link now refers to the updated guideline: "This guideline has been updated and replaced by NICE guideline NG206."

2) NHS Choices, 2011
= NHS Choices (2011) Therapies ‘moderately improve’ CFS. Available at: http://www.nhs.uk/news/2011/02February/Pages/therapies-moderately-improve-CFS.aspx

Link doesn't work for me. Perhaps works only within the UK?

The other two references are editorials from The Lancet, the journal that published the PACE trial. No author name so presumably by the editor, Richard Horton?

3) The Lancet (2011) Editorial: Patients’ power and PACE. The Lancet 377(9780): 1808.
DOI:https://doi.org/10.1016/S0140-6736(11)60696-X

4) The Lancet (2015) Editorial: What’s in a name? Systemic Exertion Intolerance Disease 385(9969): 663. DOI: 10.1016/S0140-6736(15)60270-7

 

[Wonko]

Link 2 does not work in the UK.

 

[rvallee]

These findings are good news for patients who, in our experience, just want to get better.

Uh, never noticed that. Still they keep saying the old trope about how it's because we don't want to get better. They can say one thing and its opposite and no one but us even care. Whatever is useful at the time.

But then that's why they invented the trope of activists who aren't patients. Or whatever, always what's convenient at the time.

 

[SNT Gatchaman]

Just having a look through some of this earlier work.

The PACE investigators next answer a question Geraghty did not ask. They provide assurances that no participants met the “full criteria for recovery” at trial entry—that is, none were recovered on all four criteria. This statement, while true, is a diversion, since neither Geraghty nor anyone else (to my knowledge) has argued that any participants met the “full criteria for recovery” at entry. And while making that point, the investigators decided not to explain why anyone was recovered on any of the four criteria at baseline—and especially on the two measures that were used to determine whether patients were sufficiently disabled to be in the trial.

The second criticism concerned our secondary analysis paper about recovery (White et al., 2013). Dr Geraghty states that ‘… some trial participants had reached the level required to be classified as improved or recovered at trial entry’. This is incorrect; 3/640 (<1%) of participants had scores within the normal population ranges for both fatigue and physical function at trial entry, which was only one of the criteria necessary to be considered as recovered. To meet the criteria for recovery, a participant also had to have met additional criteria: no longer be considered a case of CFS (using the trial definition of CFS) and rated their overall health as ‘much’ or ‘very much’ better compared to trial entry. No participants met the full criteria for recovery at trial entry.

I love this bit, though I'm sure it's been noted elsewhere in the forum archives. As it's logically impossible to rate any differently to t0 at t0, it reduces down to "no patient can be regarded as recovered at entry because they weren't at entry." Or more simply: "no patient can be regarded as recovered at entry."