White et al: Comment on: ‘Reports of recovery in chronic fatigue syndrome may present less than meet

[Esther12]

Dear Editor, Friedberg and Adamowicz reviewed our paper about recovery from chronic fatigue syndrome (CFS) after treatment in the PACE trial.1–3 We write in order to correct some errors of fact and interpretation in their review.

The authors suggest that we did not use any measures of patients’ perceptions of recovery. In fact we used the patient-rated clinical global impression change score of their overall health,4 which included those who rated their overall health as ‘much’ and “very much better”, and which was one of the five criteria counting towards recovery. In their account of our paper, the reviewers omitted to mention one of the criteria for recovery we used—being ineligible for entry into the trial.2

The reviewers themselves defined recovery as a ‘full return to health’, but this does not take into account the presence of comorbid conditions, which we found in about half of our patients,3 and which previous studies have found to be associated with non-recovery after cognitive–behavioural therapy (CBT).5 6

Friedberg and Adamowicz suggest that the lack of available behavioural treatment for CFS in practice means that our findings will have “little real-life impact on patient quality of life”. This may or may not be the case in the USA, but this is not the case in the UK6 7 and the Netherlands,5 where behavioural treatments are routinely available and have already been shown to help patients clinically, with similar recovery rates found in UK routine practice as were found in the PACE trial.6

The finding that patients were about three times more likely to recover after CBT or graded exercise therapy (GET) compared with standard medical care or adaptive pacing therapy (APT) is good news that needs sharing with healthcare professionals and patients. In our paper we were careful to point out the limitations of the study and our findings; our concluding sentence reading, “The relatively small proportion of recovered patients may reflect the heterogeneity of CFS; it should also spur us on both to enhance currently available therapies and to develop new and better treatments.” We would suggest that this cannot fairly be interpreted as our ‘trumpeting recovery outcomes’.

1 P D White,1 T Chalder,2 M Sharpe3

1 Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine, Queen Mary University of London, London, UK

2 Academic Department of Psychological Medicine, King’s College London, Weston Education Centre, London, UK

3 Department of Psychiatry, Psychological Medicine Research, University of Oxford, Oxford, UK

Correspondence to: Professor P D White, Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine, Queen Mary University of London, London EC1M 6BQ, UK; p.d.white@qmul.ac.uk Competing interests PDW is a member of the Independent Medical Experts Group; an advisory non-departmental public body, which advises the UK Ministry of Defence regarding the Armed Forces Compensation Scheme. PDW has provided advice to the UK Department for Work and Pensions regarding mental health issues. PDW does consultancy work for a re-insurance company. TC has received royalties from Sheldon Press and Constable & Robinson. MS has received royalties from Oxford University Press.

Provenance and peer review Not commissioned; internally peer reviewed.

REFERENCES

1. Friedberg F, Adamowicz J. Reports of recovery in chronic fatigue syndrome may present less than meets the eye. Evid Based Ment Health 2014;17:95.

2. White PD, Johnson AL, Goldsmith K, et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychol Med 2013;43:2227–35.

3. White PD, Goldsmith KA, Johnson AL, 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.

4. Guy W. ECDEU assessment manual for psychopharmacology. Rockville, MD: National Institute of Mental Health, 1976:218–22.

5. Knoop H, Bleijenberg G, Gielissen MFM, et al. Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Psychother Psychosom 2007;76:171–6.

6. Flo E, Chalder T. Prevalence and predictors of recovery from chronic fatigue syndrome in routine clinical practice. Behav Res Ther 2014;63:1–8.

7. Akagi H, Klimes I, Bass C. Cognitive behavioral therapy for chronic fatigue syndrome in a general hospital—feasible and effective. Gen Hosp Psychiatry 2001;23:254–60

Text in image is here, but a pain to read:

http://ebmh.bmj.com/content/19/1/32.short?rss=1

 

[Esther12]

We write in order to correct some errors of fact and interpretation in their review.

The authors suggest that we did not use any measures of patients’ perceptions of recovery. In fact we used the patient-rated clinical global impression change score of their overall health,4 which included those who rated their overall health as ‘much’ and “very much better”, and which was one of the five criteria counting towards recovery.

How is that an error of fact or interpretation?

White et al decided to deviate from their protocol and class those patients who had actively chosen not to rate themselves as being 'very much better', but just 'much better' as recovered. That's not patients rating themselves as recovered.

"How's your CFS doing post-CBT?" "I'm afraid that I'm not very much better, but merely recovered."

In their account of our paper, the reviewers omitted to mention one of the criteria for recovery we used—being ineligible for entry into the trial.

They also omitted to mention that you'd abandoned PACE's protocol recovery criteria by lowering the SF36-PF cut-off for recovery from 85 to 60, using the false justification "that approximately half the general working age population" had an SF36-PF score of under 85, when the data cited showed that in fact it was only 18%. It's very difficult to cover all of the problems with PACE's claims about recovery in detail. Pointing out omissions is not correcting errors of fact or interpretation.

The reviewers themselves defined recovery as a ‘full return to health’, but this does not take into account the presence of comorbid conditions, which we found in about half of our patients,3 and which previous studies have found to be associated with non-recovery after cognitive–behavioural therapy (CBT).5 6

How many of these comorbid conditions are diagnosed using criteria which overlap with CFS symptoms? A diagnosis of CFS also requires that many other health conditions are first excluded. White et al. have done nothing to show that concern about co-morbid conditions should do anything to change to definition of recovery from a 'full return to health'.

Friedberg and Adamowicz suggest that the lack of available behavioural treatment for CFS in practice means that our findings will have “little real-life impact on patient quality of life”. This may or may not be the case in the USA, but this is not the case in the UK6 7 and the Netherlands,5 where behavioural treatments are routinely available and have already been shown to help patients clinically, with similar recovery rates found in UK routine practice as were found in the PACE trial.6

Does that count as an error of fact or interpretation? If so, it's a pretty trivial one. Ref 6, the Flo paper, seemed pretty rough when it was first released, with them describing their own criteria differently throughout the paper. It did say it was an uncorrected proof, and I've not read it to see if it's been corrected since. Their criteria for recovery was again indefensibly lax though.

The finding that patients were about three times more likely to recover after CBT or graded exercise therapy (GET) compared with standard medical care or adaptive pacing therapy (APT) is good news that needs sharing with healthcare professionals and patients.

Not if it's based on subjective self-report measures in an unblinded trial using an absurdly lax post-hoc criteria for recovery. It's worthless and misleading news.

In our paper we were careful to point out the limitations of the study and our findings

Bullshit.

; our concluding sentence reading, “The relatively small proportion of recovered patients may reflect the heterogeneity of CFS; it should also spur us on both to enhance currently available therapies and to develop new and better treatments.”

If they think that the relatively small 22% recovery rate should spur people on to enhance therapies and develop new and better treatments, then surely if the 22% rate is an exaggeration, this exaggeration will have reduced people's commitment to research and develop new and better treatments?

We would suggest that this cannot fairly be interpreted as our ‘trumpeting recovery outcomes’.

They can suggest it all they want, anyone who takes the time to look at the specifics of their claims on recovery will see how seriously they have spun their results.

 

[Gijs]

In the Netherlands this therapy i.e. CGT/GET doesn't work at all in the real life.

Helpfull/No effect/Made worse
- (CBT) 29,9% n=115 30,4% 42,6% 27,0%
- (GET) 27,0% n=102 20,6% 42,2% 37,3%

file:///C:/Users/Marco%20de%20Boer/AppData/Local/Microsoft/Windows/INetCache/IE/OB35PD67/rapport-draagvlakmeting-cvs-me-2008.pdf

 

[jimells]

the reviewers omitted to mention one of the criteria for recovery we used—being ineligible for entry into the trial

They should hope no one actually notices this criteria. A participant who becomes housebound, for just one example, would be deemed ineligible for entry to the trial, and therefore could be counted as meeting this criteria for "recovery".

 

[snowathlete]

More spin. The audacity is quite astonishing but I guess they are hoping no one actually looks to close and just trusts their word for it all.

 

[Esther12]

They should hope no one actually notices this criteria. A participant who becomes housebound, for just one example, would be deemed ineligible for entry to the trial, and therefore could be counted as meeting this criteria for "recovery".

I'm assuming that wouldn't count... but I really don't know. The Oxford criteria requires that fatigue is a patient's primary symptom, so therefore, if treatment led to pain becoming more important than fatigue, they could count as no longer fulfilling Oxford. I had assumed that this would not count, but it looked from their recovery paper as if patients ended up not fulfilling Oxford, but fulfilling more demanding criteria. Until we get access to their data it's hard to say what was happening.

 

[barbc56]

Bullshit

I'll second that!

The reviewers themselves defined recovery as a ‘full return to health’, but this does not take into account the presence of comorbid conditions, which we found in about half of our patients,3 and which previous studies have found to be associated with non-recovery after cognitive–behavioural therapy (CBT).5 6

This sounds rather absurd.

If they found patients without a comorbid condition, I would estimate that one, maybe two persons in the entire UK might be helped. But I'm guessing here. It might be less!

Either way that doesn't seem to justify this as a therapy.

You do have to consider confounding factors but I don't think in the way it's being used here. While distinguishing them is important, at what point do the symptoms of comorbid conditions become an actual part of mecfs? Diagnostic criteria for exclusion, and we do have a few, but if the reality is that most have them then you're still back to the fact it doesn't help. I know this has to be an issue in a lot of studies and probably has probably been asked and answered but I've drawn a blankl.

Edit. I think I've confused comorbid condition and cofounding factors but I'll leave this part in case anyone wants to comment.

I'm not sure I'm making sense here. If anyone can figure out what I'm trying to say, enlighten me. Maybe direct me to a thread? If you can't just ignore this and I will go back to Esther's delightful default comment:

Bullshit!

Barb
Edit Deleted a bunch of text as I think this has probably been addressed before and could be a separate thread. Now I'm confused about which words to use to search. But I'll keep trying!

 

[Snow Leopard]

One day the wheels are going to fall off due to excessive spin!

 

[barbc56]

One day the wheels are going to fall off due to excessive spin!

Great analogy! I'll probably steal this!

Barb