All very good points - thank you, @charles shepherd!
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No they don't. But, given that the next time Sharpe et al give a lecture or briefing on the subject they will claim said causation and quote PACE as exhibit A, it's a highly disingenuous position. It can hardly be said that the concerns surrounding this paper regarding it's ideological underpinnings are misplaced or somehow nothing to do with the authors.The marked antipathy of some toward this study, apparent in the correspondence and elsewhere, is perhaps related in part to the view, expressed by Shepherd, that the findings support “a simplistic and flawed model of psychosocial causation”. They do not.
Very vexatious.Given that they keep citing the additional treatments as rationale for ignoring the lack of differences between groups, it would be good if someone could pin them down on the fact that those who had additional CBT/GET didn't drag up the results.
What really annoys me about the response is this bit:
No they don't. But, given that the next time Sharpe et al give a lecture or briefing on the subject they will claim said causation and quote PACE as exhibit A, it's a highly disingenuous position. It can hardly be said that the concerns surrounding this paper regarding it's ideological underpinnings are misplaced or somehow nothing to do with the authors.
That would be great if it could be done by people not involved in the PACE trial
So am I missing something... what is happening regarding the release of the data?
They do, however, offer practical hope of useful improvement, a finding reinforced from the routine monitoring of the outcomes of the many patients who attend clinics that offer these and similar treatments.6
QJM.2013 Jun;106(6):555-65. doi: 10.1093/qjmed/hct061. Epub 2013 Mar 28.
3 comments on PubPeer
Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database.
Crawley E1,Collin SM,White PD,Rimes K,Sterne JA,May MT;CFS/MENationalOutcomesDatabase.
Author information
Erratum in
Abstract
- QJM. 2013 Jun;106(6):567.
BACKGROUND:
Chronic fatigue syndrome(CFS) is relatively common and disabling. Over 8000 patients attend adult services each year, yet little is known about the outcome of patients attending NHS services.
AIM:
Investigate the outcome of patients with CFS and what factors predict outcome.
DESIGN:
Longitudinal patient cohort.
METHODS:
We used data from six CFS/ME (myalgic encephalomyelitis) specialist services to measure changes in fatigue (Chalder Fatigue Scale), physical function (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and pain (visual analogue pain rating scale) between clinical assessment and 8-20 months of follow-up. We used multivariable linear regression to investigate baseline factors associated with outcomes at follow-up.
RESULTS:
Baseline data obtained at clinical assessment were available for 1643 patients, of whom 834 (51%) had complete follow-up data. There were improvements in fatigue[mean difference from assessment to outcome: -6.8; 95% confidence interval (CI) -7.4 to -6.2; P < 0.001]; physical function (4.4; 95% CI 3.0-5.8; P < 0.001), anxiety (-0.6; 95% CI -0.9 to -0.3; P < 0.001), depression (-1.6; 95% CI -1.9 to -1.4; P < 0.001) and pain (-5.3; 95% CI -7.0 to -3.6; P < 0.001). Worse fatigue, physical function and pain at clinical assessment predicted a worse outcome for fatigue at follow-up. Older age, increased pain and physical function at assessment were associated with poorer physical function at follow-up.
CONCLUSION:
Patients who attend NHS specialist CFS/ME services can expect similar improvements in fatigue, anxiety and depression to participants receiving cognitive behavioural therapy and graded exercise therapy in a recent trial, but are likely to experience less improvement in physical function. Outcomes were predicted by fatigue, disability and pain at assessment.
Here is the dataPACE Trial authors' response very misleading: whether APT/SMC-only groups got CBT/GET or not made no difference.
View attachment 14352
(Figure prepared by @Simon )
Lastly, the PACE investigators have previously complained inThe Lancet Psychiatryof “the apparent campaign to bring the robust findings of the trial into question”.5We think the further scrutiny that the follow-up study has brought casts further doubt on whether there ever were “robust findings”. The investigators should get more accustomed to rigorous post-publication peer review, which is not a campaign, but a reality of the 21st century.
Indeed. Where are the parents anyways.As children learn early, as long as there are no consequences, it doesn't matter what the parents say.
The authors argued: “In so far as the need to seek additional treatment is a marker of continuing illness, these findings support the superiority of CBT and GET as treatments for chronic fatigue syndrome”.
Although this finding might mean that all PACE treatments have similar long-term outcomes, we cannot draw this conclusion. This is because, as explained in the Article,2 the follow-up study was not, as suggested by Coyne and Laws, a continuation of the trial (with or without crossover), but rather a naturalistic follow-up after trial completion. During this follow-up period, more than half of participants originally allocated to standard medical care alone and to APT sought at least some treatment with CBT or GET. Consequently, the long-term outcome in these participants is not of standard medical care alone or APT alone, but of these therapies supplemented in many cases by CBT or GET.
Just read the all the letters - thanks to all who wrote, and it was particularly pleasing to see a robust critique from prominent academics in @Keith Laws and James Coyne.tbh, my main response is: the 500 word limit makes it really difficult to have a proper debate in Lancet Psych. A shame the PACE researchers didn't want to go through with the Mental Elf thing.
If I was reading that without prior knowledge, I don't think that I'd be able to conclude much from the exchange.
Would have been nice to have had some more critical letters in to cover more issues, but can understand people who wrote last time not bothering after PACE's last response. Thanks to all those who did write in. All letter raised important points, and I think that having Coyne and Laws write should also be really helpful for encouraging people to at least consider whether concerns' about PACE might have some merit.
Nothing new from the PACE crew.
Which of course ignores the fact this gain was from baseline, not compared with the control groups. The advantage of CBT/GET was only around 8 points at the end of the trial (a self-report measure in an unblinded trial) and there was no advantage at long-term follow-up, which is actually what this correspondence is all about.the authors said:While recovery for all participants receiving these treatments has never been claimed, a mean improvement of approximately 20 points on the medical outcomes study short-form 36 (SF-36) physical functioning scale from trial entry is, contrary to Frank Twisk's comments about the lack of treatment effect, clearly clinically meaningful.
Since when was 'widely acccepted' an acceptable scientific riposte to criticism?the authors said:The statistical analysis accounted for missing data using linear mixed effects models and made the missing-at-random assumption. These are widely accepted approaches, given that missing data assumptions cannot be properly tested;
This is correspondence relating to the paper in Lancet Psychiatry that reported on long term follow up of PACE trial participants
Nothing to do with release of PACE trial data
That is still being debated and resisted……..