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Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice

Tom Kindlon

Senior Member
Messages
1,734
[The recovery claims continue. Trudie Chalder was one of the principal
investigators in the PACE Trial where one could have normal physical
functioning with a SF-36 score of 60 i.e. disimprove on the measure
and be counted as recovered! This sounds like it may use a similar
threshold. I would be very interested in seeing a full copy. Tom]

http://www.sciencedirect.com/science/article/pii/S0005796714001429

Behaviour Research and Therapy

Available online 26 August 2014

In Press, Accepted Manuscript — Note to users

Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice

Elisabeth Floa, b
Trudie Chalderc

Show more
DOI: 10.1016/j.brat.2014.08.013Get rights and content
________________________________

Highlights

• This study investigates recovery from CFS in a routine practice.

• Approximately 18% of people with CFS recover after CBT.

• The study of CBT in routine practice demonstrated recovery rates akin to RCTs.

________________________________

Abstract

Cognitive behavioural therapy (CBT) is one of the treatments of choice
for patients with chronic fatigue syndrome (CFS). However, the factors
that predict recovery are unknown.

The objective of this study was to ascertain the recovery rate among
CFS patients receiving CBT in routine practice and to explore possible
predictors of recovery.

Recovery was defined as no longer meeting Oxford or CDC criteria for
CFS measured at 6 months follow-up. A composite score representing
full recovery additionally included the perception of improvement, and
normal population levels of fatigue and of physical functioning.
Logistic regression was used to examine predictors of recovery.
Predictors included age, gender, cognitive and behavioural responses
to symptoms, work and social adjustment, beliefs about emotions,
perfectionism, anxiety and depression at baseline.

At 6 months follow-up 37.5% of the patients no longer met either the
Oxford or the CDC criteria for CFS while 18.3% were fully recovered.
Multivariate analyses showed that worse scores on the work and social
adjustment scale, unhelpful beliefs about emotions, high levels of
depression and older age were associated with reduced odds for
recovery.

Recovery rates in this routine practice were comparable to previous
RCTs. There was a wide spectrum of significant predictors for
recovery.

Keywords

Chronic fatigue syndrome;
recovery;
Cognitive behavioural therapy;
follow-up;
longitudinal

Corresponding author. Norwegian Competence Center for Sleep Disorders,
Haukeland Universitetssjukehus, Jonas Lies vei 65, 5021 Bergen. Tel.:
+47 55 97 07 86; fax: +47 55 97 46 10.
 

Tom Kindlon

Senior Member
Messages
1,734
This journal doesn't seem to take letters to the editor based on its instructions for authors:
http://www.elsevier.com/journals/behaviour-research-and-therapy/0005-7967/guide-for-authors

I also searched PubMed for letters from this journal
and all it came back with was the following:


1.

Evaluation of therapeutic efficacy of behavior modification in a community setting.

Stolz SB.

Behav Res Ther. 1976;14(6):479-81. No abstract available.

PMID: 999591 [PubMed - indexed for MEDLINE]

Related citations

Select item 117702.

Imagery and relaxation with a burn patient.

Weinstein DJ.

Behav Res Ther. 1976;14(6):481. No abstract available.

PMID: 11770 [PubMed - indexed for MEDLINE]

Related citations
 
Messages
233
"Recovery was defined as no longer meeting Oxford or CDC criteria for CFS measured at 6 months follow-up."

That might be an issue. The 1991 Oxford criteria is rather broad with "severe, disabling mental and physical fatigue" >50% of the time for 6 months, and includes some other conditions, such as depression, bipolar, and perhaps even standard grieving after a loved one died. Even the 1994 Fukuda criteria is more exclusive.

I think SOC said it pretty well here, in the last part of her post:
My guess is that CFS (by the CDC and Oxford definitions) includes some forms of MDD as well as other mental illnesses, primary hormonal disorders, OI from multiple causes, fibromyalgia, self-limiting post-viral fatigue, over-training syndome, and others.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
So a treatment of choice has an approximate success rate of 18% even when using crummy criteria. :wide-eyed::jaw-drop::vomit::bang-head:

Claimed success rate. Claimed. Give therapy, change someone's attitudes, then ask them how they feel about it. Do NOT measure any objective outcomes like exercise capacity, engagement in work or social activity and so on. Do NOT admit that studies that use objective evidence show it is a failure. Do NOT admit that the statistical cutoff for normality (in at least the PACE trial) is based on invalid statistical inference on an invalid statistical data set. Oops, oops and more oops.
 
Messages
15,786
This entire paper is a hot sticky mess. It makes PACE look reputable by comparison :jaw-drop:

Criteria for "fully recovered" included a score of 65 or higher of SF-36 physical functioning, and feeling "better" or "much better". In one location it is listed as being "much better" or "very much better" for recovery, but everywhere else it's "better" or "much better". Meaning we can assume some people felt slightly better but generally not "very much better" or "much better", since they don't break down those results. And I'd assume everyone else did "very much worse" since they also withhold that data.

Even more hilarious is that the p value used for the grand claims in the abstract regarding "predictors" are p = 0.1. I have never seen a study try to pretend that p = 0.1 is statistically significant ... it's absurd.
 
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DanME

Senior Member
Messages
289
Hello my friends,

I ve just read the full study and I am in horror about the statements, the authors make. It is basically the old "it is all in our head and our fault" crap.

They lump Oxford and Fukuda together and state the two criteria were basically „similar“, but nevertheless had „no complete overlap“ (I see a contradiction here). Their main model is the old hat of avoiding activity after a virus. They say, CBT and GET were proven to be the most effective treatment in CFS, but full recovery was rare.

They had 200 non-randomised patients, diagnosed by NICE guidelines (having fatigue for the last 4 month) and assigned them to CBT sessions. The CBT was based on „fear avoidance“ and „unhelpful believes“. The patients had to to self report scales including a „perfectionism scale“ and a „pain acceptance scale“ (which was invited for CFS patients, yeah).

They state, according to Oxford, Fukuda and the self reports, 18% had a full recovery and 60% felt significantly better after 6 month.

Negative outcome was predicted by disability, catastrophising, depression, fear avoidance, unhealthy believes about emotions, an „all or nothing behaviour“, perfectionism, high parental expectations and embarrassment avoidance.

Other gems, I found: they state, some CFS patients had not been as healthy as the mean population, before they got sick. So they changed „to be recovered“ to be 1 SD from the population mean (nice bending of statistics here).

And they cite a study, which stated, only(!) CFS patients with childhood trauma had low cortisol levels (what?).

So in conclusion, they found exactly, what they predicted in the introduction. The patients were not randomised, they was no control group (maybe with some other treatment idea, like how to accept, that I am severely ill and how make the most of it?). They don’t mention biomedical research and findings, but say, they was no evidence to a pathognomonic manifestations (PEM?). They have no objective criteria at all. They cite quite old studies (mainly from 1990 to 2005). They lump three different criteria together with self reports. I am not a statistician, but I guess, you shouldn’t do that. They bend the statistics, saying most of the CFS patients were not as healthy as the mean population, before they got sick. But have no evidence for this claim. I also doubt the validity of some of the self report scales. And at the end it is all the patients fault, who could be better, if they just believed to be better.

I am embarrassed by all of this (hey, no embarrassment avoidance). This is not science. It is just a heavy confirmation bias. How can people see severely effected ME patients and still believe in the „activity avoidance“ claim? How can you be a doctor and have a PhD and do such a study? Basic study design? Basic statistics? The central theorem of falsification?

Alright. What confuses me the most, that this study comes partly out of Haukeland in Bergen, where Fluge and Mella do their fantastic work. How is this possible?
 

DanME

Senior Member
Messages
289
This entire paper is a hot sticky mess. It makes PACE look reputable by comparison.

Criteria for "fully recovered" included a score of 65 or higher of SF physical functioning, and feeling "better" or "much better". In one location it is listed as being "much better" or "very much better" for recovery, but everywhere else it's "better" or "much better". Meaning we can assume people felt slightly better but generally not "very much better" or "much better", since they don't break down those results. And I'd assume everyone else did "very much worse" since they also withhold that data.

Even more hilarious is that the p value used for the grand claims in the abstract regarding "predictors" are p = 0.1. I have never seen a study try to pretend that p = 0.1 is statistically significant ... it's absurd.

Oh, yeah, I was so angry reading this, I didn't recognise the p value mistake. I cannot believe it.
 

A.B.

Senior Member
Messages
3,780
I am embarrassed by all of this (hey, no embarrassment avoidance). This is not science. It is just a heavy confirmation bias. How can people see severely effected ME patients and still believe in the „activity avoidance“ claim? How can you be a doctor and have a PhD and do such a study? Basic study design? Basic statistics? The central theorem of falsification?

Alright. What confuses me the most, that this study comes partly out of Haukeland in Bergen, where Fluge and Mella do their fantastic work. How is this possible?

Psychobabble is misanthropic belief, not science. No matter what, it is ALWAYS the patient's fault. The poor therapists wouldn't have anyone to look down upon otherwise.

The case of Gert Postel shows that being a skilled psychobabbler is enough to make a career in the mental health field, even where there is no substance at all behind the babble. He literally invented diagnoses on the spot, and nobody suspected a thing.
http://en.wikipedia.org/wiki/Gert_Postel
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Other gems, I found: they state, some CFS patients had not been as healthy as the mean population, before they got sick. So they changed „to be recovered“ to be 1 SD from the population mean (nice bending of statistics here).

This dataset is exponential, and the median for working age people is 100. Mean is inappropriate to make inference from, as this includes sick people. Some CFS patients are indeed not as healthy as the general population prior to onset, or at least diagnosis ... so what? The relevance of this has yet to be established.

Any use of SD on an exponential data set is invalid. No conclusion drawn based upon that has any validity. Did they get advice from any statistician? Did they listen? Did they ask the right questions? Did they bother looking at the data set?

I think that if its correct they used a p value of 0.1 as cutoff this answers my questions. This paper is statistically nonsense.
 

Dolphin

Senior Member
Messages
17,567
Even more hilarious is that the p value used for the grand claims in the abstract regarding "predictors" are p = 0.1. I have never seen a study try to pretend that p = 0.1 is statistically significant ... it's absurd.
The one time I saw p<0.1 being used was by promoters of CBT in the CBT, CFS and Grey Matter Volume study by the Nijmegen team (De Lange et al. 2008) http://brain.oxfordjournals.org/cgi/pmidlookup?view=long&pmid=18587150

[I have also seen p<0.1 being used in multivariate analysis]
 
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Dolphin

Senior Member
Messages
17,567
And they cite a study, which stated, only(!) CFS patients with childhood trauma had low cortisol levels (what?).
Study used the so-called empiric criteria (Reeves et al., 2005) covering 2.54% of the population. Waste-of-time criteria in my mind which bring in all sorts of psych patients.
 

biophile

Places I'd rather be.
Messages
8,977
Loose criteria, non-randomized cohort, no control group, dependence on self-report in a study of perception-altering therapy, and p value cutoff of 0.1. What could possibly go wrong? Chalder, where are the PACE results for predictors, it's been over 4 years already since you've had the data? In addition to problems already highlighted by others, this paper also has several other errors and discrepancies, once again showing that peer review is inadequate. Here are just a few ...

In some places, the SF-36 cutoff is ≥65, in others it is >65.

Flo & Chalder said:
Some studies have thus set the cut-off for recovery at 1 standard deviation (SD) from the population mean (Deale et al., 2001; Knoop et al., 2007a).

Deale et al did not use 1 SD from the mean to establish thresholds. Unless it was cited for a population mean.

Knoop et al did use 1 SD from the mean but used a healthy (not general) population as this paper does (big difference).

Flo & Chalder said:
Previous studies have indicated a CFQ score of below 18 and a SF-36 physical function score of 65 or higher are both within 1 SD of the normal population mean score (Deale, et al., 2001; Jenkinson, Coulter, & Wright, 1993). These values were used as cut-offs in the present study.

This is misleading. Jenkinson et al's paper was about a working age population where 1 SD below the mean score is about 70, and 65 is only within 1 SD of the mean for males and females aged 55-64 years.

Deale et al do not use Likert scoring for the CFQ either; it used the much stricter bimodal score of <4 as the cut-off point, and this was established arbitrarily in a previous paper using ROC analysis, not mean SD. Deale et al do not mention anything about being within 1 SD of the population mean, but do cite Garratt et al for physical function norms:

"A cutoff score of 83 was used to denote good outcome, as it represents the ability to carry out moderate activities (e.g., carrying purchases, moving furniture). This cutoff was used in the original trial (3) and is similar to the mean in the U.K. general population (9)."

9. Garratt A, Ruta D, Abdall M, Buckingham J, Russell I: The SF36 Health Survey Questionnaire: an outcome measure suitable for routine use within the NHS? Br Med J 1993; 306:1440–1444

Flo & Chalder said:
A score of 65 or higher denotes being within 1SD of the UK population mean of 83 or higher (Deale, et al., 2001).

The actual population mean in the Garratt et al paper is 79.2. No SD is given but can be crudely estimated as 22.

Flo & Chalder said:
To recover may represent a return to premorbid levels of health and wellbeing. When previously defining recovery from CFS, studies have used the normal population statistics as a guide. However, for some CFS patients recovery as defined by the population mean may entail a level of good health they did not have before their CFS started. Likewise, “healthy” individuals could regard themselves as fully functional and still be under the population mean on health questionnaires. Some studies have thus set the cut-off for recovery at 1 standard deviation (SD) from the population mean(Deale et al., 2001; Knoop et al., 2007a).

DanielBR said:
They bend the statistics, saying most of the CFS patients were not as healthy as the mean population, before they got sick. But have no evidence for this claim.

alex3619 said:
This dataset is exponential, and the median for working age people is 100. Mean is inappropriate to make inference from, as this includes sick people. Some CFS patients are indeed not as healthy as the general population prior to onset, or at least diagnosis ... so what? The relevance of this has yet to be established. Any use of SD on an exponential data set is invalid. No conclusion drawn based upon that has any validity. Did they get advice from any statistician? Did they listen? Did they ask the right questions? Did they bother looking at the data set?

The involvement of Chalder (PACE) could explain the mean SD sloppiness. Maybe this is Flo's first paper on CFS? Yet, as bad as this sounds, at least they have attempted to justify the use of mean and SD, usually there is no explanation. I doubt CFS researchers have ever sat down seriously with population data to statistically evaluate what should represent recovery. Somewhere along the way CBT researchers have conveniently latched onto mean SD, and once it gave easy and absurdly low recovery thresholds allowing inflated recovery rates, it has become more common.

A physical function score of 65 is much higher than where I am now, but it is also insulting to claim it is "fully recovered". Considering my background and age, "fully recovered" is at least 95 and is a major difference to 65. Perhaps incumbent politicians could hire CBT researchers to redefine economic recovery at the next recession or GFC downturn.

We deserve better than this. Would CBT researchers be happy taking a pay cut or salary equal to 1 SD below the mean income of a general population that included the unemployed and retired?

Flo & Chalder said:
Somewhat surprisingly, more avoidance/resting at baseline was positively related to recovery as defined by physical functioning, while this association was negative in the univariate analysis (i.e., related to reduced odds for recovery).

So much for the alleged spiraling descent into increasing disability, then?
 
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Sean

Senior Member
Messages
7,378
We deserve better than this. Would CBT researchers be happy taking a pay cut equal to 1 SD from the mean income of a general population that included the unemployed and retired?

He he he…

This is the sort of pointed analogy/metaphor that we need to use.

So much for the alleged spiraling descent into increasing disability, then?

The assumptions underlying the BSP model really don't stand up to even modest scrutiny, do they?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
A physical function score of 65 is much higher than where I am now, but it is also insulting to claim it is "fully recovered". Considering my background and age, "fully recovered" is at least 95 and is a massive difference to 65. Perhaps incumbent politicians could hire CBT researchers to redefine economic recovery at the next recession or GFC downturn.

We deserve better than this. Would CBT researchers be happy taking a pay cut equal to 1 SD from the mean income of a general population that included the unemployed and retired?

So much for the alleged spiraling descent into increasing disability, then?

Fully recovered for most is 95+. Only with serious comorbidities could you claim otherwise.

I think many economists already run with the same playbook. We keep being told things are fixed. Yet I am waiting for the next and bigger economic crash. The last one was only a warmup. Nothing is fixed. Governments are afraid to take the difficult measures, and instead focus on scapegoating groups like the disabled.

We need lots of little anecdotes, aphorisms and quips. Then use them a lot.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
The median of a healthy population in their 30s is about 95, I'd say >85 for a young population and >80 for a older population is a fair cut off for 'back to normal'/'recovered' on the SF-36 PF scale.