Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS/ME (2018) Chalder et al

[MeSci]

An alarming-sounding study ("Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.")!

Source: Journal of Behavioral Medicine

Preprint
Date: January 25, 2019

URL: https://link.springer.com/article/10.1007/s10865-019-00010-x

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: A preliminary mixed-methods study
----------------------------------------------------------
Sheila Ali(1), Lucy Adamczyk(2), Mary Burgess(1), Trudie Chalder(3)

1 South London and Maudsley NHS Foundation Trust, London, UK.

2 Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

3 Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

* Corresponding author. Email: trudie.chalder@kcl.ac.uk

Received 22 February 2018
Accepted 05 January 2019
First Online 25 January 2019

Abstract

This mixed-methods study investigated factors associated with fatigue, disability and school attendance in young people with severe CFS/ME.

Participants' illness experiences were also explored. Questionnaires were completed at baseline (T1) and approximately 5 months later (T2).

There were 51 participants aged between 12 and 25, with a mean age of 18.8 years (SD 3.4).

At T1, participants reported severe fatigue and poor social adjustment. Stronger fear avoidance beliefs at T1 were associated with higher fatigue at T2, and with worse social adjustment at T1 and T2. Female gender was associated with lower work/school attendance at T1 and T2 but not with higher fatigue or worse social adjustment. Having accessed treatment was associated with reporting lower levels of work/school attendance at T1 and T2. Multivariate analyses of key outcomes identified significant associations between stronger fear avoidance beliefs and worse social adjustment at T2, and between female gender and lower work/school attendance at T2.

It was clear from the qualitative data that severe CFS/ME negatively impacted on many aspects of young people's lives. Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.

Keywords: Chronic fatigue syndrome, Adolescent health, Disability, Fatigue

 

[chrisb]

How do they equate severe ME with any sort of school attendance? One might expect issues over school attendance to be compatible with mild ME including recurrent periods of greater severity.

 

[Trish]

Oh, lucky us, we have a new terminology to learn to 'explain' our illness - the 'Stress-diathesis model'.

The aetiology of CFS/ME is uncertain (Richards, 2000). However a stress-diathesis model of CFS has been proposed. This posits that some individuals may have a greater risk or vulnerability to stress. This may be influenced by a range of different factors such as genes, psychiatric disorder, personality, self-esteem, adverse life events, and parental factors. The onset of CFS may be triggered by a viral infection, illness, or stressful event. Fatigue and CFS symptoms may subsequently be maintained long-term by perpetuating factors such as fearful beliefs about symptoms, excessive resting, and avoidance behaviour (Lievesley et al., 2014).

Basically it's the same old story - predisposing factors lead some of us to get sick when others wouldn't when we experience the same stressors. The model was developed in the 1970's to 'explain' schizophrenia, and later also depression.

Now Chalder et al are expanding it to include physical symptoms.

So that's the predisposing and precipitating bit dealt with (not). They don't seem to understand that giving a name to something doesn't explain it.

Then we have the same old same old 'fear avoidance beliefs' as the perpetuating factor.

Here's what the expected to find:

It was expected that stronger fear avoidance beliefs about symptoms at T1 would be associated with more severe fatigue, as well as poorer social adjustment and lower work/school attendance at T2.

It was also expected that access to treatment would be associated with higher work/school

Participants were recruited through the charity AYME. Questionnaire sent by post.
Oxford criteria used 'to minimise the likelihood of excluding people with CFS'.
Eligibility required a self reported diagnosis of CFS/ME, and they filled in a functional ability scale to see if their ME was severe.

51 participants but only 43 of them met Oxford criteria. (What?!)

The study didn't involve any intervention, it was just a set of questionniares and then the same questionnaires a few months later.

They were clearly hoping to find that having fear avoidance beliefs led to poorer improvement in fatigue - to give them an excuse to say it was the beliefs that caused the poorer outcome.

What they actually found was that those with fear avoidance beliefs were more fatigued and had poorer social adjustment at the start and at the finish. They said this supported their theory.

It didn't seem to occur to them that correlation doesn't imply causation and that it is more likely that the beliefs they were measuring were realistic understanding of inability to be active and socialise in people who were sicker.

(There was also an open ended section that asked patients to write about their experience with CFS and what they thought of the charity AYME.)

Bah humbug.

 

[Sly Saint]

"Data collection took place between July 2014 and May 2015"

"Participants were recruited from a charity for young people with CFS/ME. This setting was chosen because the charity had contact with a relatively large number of young people who were severely affected by CFS/ME."
(AYME)

"An additional requirement was that participants had severe CFS. This was assessed using the functional ability scale (Moss, 2005). This self-report rating scale describes levels of functioning in young people with CFS/ME. Possible scores range from 0 (very severely affected) to 100% (fully recovered), with lower scores indicating poorer functioning and more severe CFS/ME.

In phase 1 of recruitment, a score of ≤ 30% was required for inclusion in the study. An individual functioning at the 30% level would experience moderate to severe symptoms at rest, and severe symptoms following any activity. They would spend most of the day resting."

"In phase 2 of recruitment, in order to increase recruitment rates, the threshold for severity was raised to 50%."

"All participants reported that they had a diagnosis of CFS/ME and 43 participants (84.3%) met the Oxford criteria for CFS/ME (Sharpe et al., 1991)"

"Almost two-thirds of the participants reported having a comorbid illness in addition to CFS/ME (58.8%). Examples included fibromyalgia, depression, anxiety, and obsessive compulsive disorder (OCD)."

"Although this was a naturalistic study and not an evaluation of treatment, it is notable that the majority of participants reported that they had accessed some form of treatment, and yet the mean scores for fatigue and social functioning had not changed considerably by T2."

"Fear avoidance beliefs, which were found to be an important factor associated with social adjustment in this study, can be targeted using rehabilitative treatments such as CBT.

There is growing evidence that this type of treatment is effective for the treatment of CFS/ME.
CBT has been shown to be effective for the treatment of CFS/ME in adolescents and young people, in terms of reduced fatigue and increased school attendance (Chalder et al., 2010; Nijhof et al., 2012; Stulemeijer et al., 2005). Follow-up studies have shown that the positive effects of CBT can be maintained long term (Knoop et al., 2008; Lloyd et al., 2012)."

"We thank the team at the organisation Association of Young People With M.E., for recruiting participants and collecting data."

Conflicts of interest
Trudie Chalder received ad hoc payments for conducting workshops on evidence-based treatments for persistent physical symptoms; grants from NIHR programme grants, HTA, RfPB, Guy’s and St Thomas Charity, King’s Challenge Fund, Muscular Dystrophy, Multiple Sclerosis Society.

Personal financial interests: Trudie Chalder is the author of several self-help books on chronic fatigue and received royalties in the past. He received expenses and ad hoc payment for role as external examiner NUI Galway and Waterford Institute of Technology.

He received expenses for keynote speeches at UK Society for Behavioural Medicine, BABCP Conferences (travel and accommodation). He received ad hoc payments for conducting workshops on evidence-based treatments for persistent physical symptoms. Mary Burgess receives royalties for the self help book Overcoming chronic fatigue. Sheila Ali and Lucy Adamczyk declare that they have no conflict of interest.

Trudie Chalder appears to have had a sex change

 

[Trish]

The questionnaire used to 'measure' fear avoidance beliefs is stated thus:

Fear avoidance beliefs
This study used the fear avoidance subscale of the Cognitive Behavioural Responses questionnaire (Ryan et al., 2017; Skerrett & Moss-Morris, 2006; Stahl et al., 2014). The items measure fearful beliefs about activity, and beliefs relating to the avoidance of activity. The subscale consists of six items, each of them scored from 0 to 4. Scores were calculated out of a total of 24, with higher scores indicating stronger fearful beliefs about activity.

I can't find the questionnaire. It would be interesting to see what it is actually asking.

The second reference listed (by Moss Morris) is interesting because it's a similar study but on MS patients, and comes to a similar conclusion:

The behavioral variables including an all-or-nothing response to symptoms and rest/avoidance behaviours were also strongly associated with fatigue and social impairment. The degree of neurological deficit was not associated with either physical or mental fatigue, although it was associated with social impairment. Depression, anxiety, and remission status were also related to fatigue, and depression to social impairment.

These findings suggest that treatment approaches that challenge unhelpful cognitive interpretations and behavioural responses to symptoms, and address anxiety and depression, may be important in improving the overall management of fatigue in MS.

So they are making similar claims that CBT to overcome fear avoidance helps reduce fatigue in MS as well.

 

[Esther12]

Thanks Trish. Sounds like it could be worth a letter to the journal summarising those points?

 

[Hoopoe]

A high score on a fear avoidance scale doesn't mean that the behaviour of the patient is wrong and needs to be corrected. Someone with celiac disease would presumably score high on it.

Having accessed treatment was associated with reporting lower levels of work/school attendance at T1 and T2.

So treatment makes patients worse? Well, the authors would probably argue that correlation isn't causation.

Multivariate analyses of key outcomes identified significant associations between stronger fear avoidance beliefs and worse social adjustment at T2, and between female gender and lower work/school attendance at T2.

But at the same time, the authors want to suggest that fear avoidance beliefs cause worse outcomes.

 

[Trish]

Thanks Trish. Sounds like it could be worth a letter to the journal summarising those points?

I hope someone will do so. There are so many holes to pick in this pile of crap I barely know where to start. Self reported diagnosis, Oxford criteria, and some didn't even meet that but were still included, planned and approved as a study of adolescents but the majority were over 18, self selected sample, entry criteria changed after the start to include less sick, correlation used to infer causation etc etc.

So treatment makes patients worse? Well, the authors would probably argue that correlation isn't causation.

Yeah, I noticed that. ha ha!

The really disheartening thing is this is probably someone's PhD work, so yet another keen young psychologist being taught crap methodology and believing the narrative spun by Crawley Chalder about fear avoidance beliefs perpetuating ME.

 

[Trish]

@dave30th you are probably aware that Chalder, (and Moss Morris) and her minions are still churning out piles of this stuff. I think they are at the heart of the IAPT programs too.

 

[Esther12]

I hope someone will do so.

I was nudging you!!

 

[Trish]

I was nudging you!!

I know. I was avoiding the nudge! I haven't recovered yet from the effort of doing the AfME complaint letter, and the debate last week...

 

[Andy]

I was nudging you!!

And I'm sure that someone who is moderator, who compiles, with Kalliope, all of our News in Brief posts, and plays a vital role in the committee, and who does all of this while dealing with severe ME and looking after her daughter, who also has ME, probably deserves a break from letter writing after her excellent analysis of the latest AfME debacle.

 

[rvallee]

An alarming-sounding study ("Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.")!

Source: Journal of Behavioral Medicine

Preprint
Date: January 25, 2019

URL: https://link.springer.com/article/10.1007/s10865-019-00010-x

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: A preliminary mixed-methods study
----------------------------------------------------------
Sheila Ali(1), Lucy Adamczyk(2), Mary Burgess(1), Trudie Chalder(3)

1 South London and Maudsley NHS Foundation Trust, London, UK.

2 Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

3 Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.

* Corresponding author. Email: trudie.chalder@kcl.ac.uk

Received 22 February 2018
Accepted 05 January 2019
First Online 25 January 2019

Abstract

This mixed-methods study investigated factors associated with fatigue, disability and school attendance in young people with severe CFS/ME.

Participants' illness experiences were also explored. Questionnaires were completed at baseline (T1) and approximately 5 months later (T2).

There were 51 participants aged between 12 and 25, with a mean age of 18.8 years (SD 3.4).

At T1, participants reported severe fatigue and poor social adjustment. Stronger fear avoidance beliefs at T1 were associated with higher fatigue at T2, and with worse social adjustment at T1 and T2. Female gender was associated with lower work/school attendance at T1 and T2 but not with higher fatigue or worse social adjustment. Having accessed treatment was associated with reporting lower levels of work/school attendance at T1 and T2. Multivariate analyses of key outcomes identified significant associations between stronger fear avoidance beliefs and worse social adjustment at T2, and between female gender and lower work/school attendance at T2.

It was clear from the qualitative data that severe CFS/ME negatively impacted on many aspects of young people's lives. Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.

Keywords: Chronic fatigue syndrome, Adolescent health, Disability, Fatigue

This is still the original framing that Wessely et al promoted from the 80's. Nothing has changed to their rhetoric. Completely stuck in an ideologically-fixed frame of mind. "Could be". "May be." 3 decades of forcing their ideology through and still absolutely nothing to show for other than a disastrous experiment ruining millions of lives.

ENOUGH!

 

[Trish]

And I'm sure that someone who is moderator, who compiles, with Kalliope, all of our News in Brief posts, and plays a vital role in the committee, and who does all of this while dealing with severe ME and looking after her daughter, who also has ME, probably deserves a break from letter writing after her excellent analysis of the latest AfME debacle.

Thanks, Andy. I'm fine with being nudged. It shows someone thinks I could actually do something like writing to a journal, which is quite flattering.

 

[ME/CFS Skeptic]

Isn't there a mistake in the abstract? It reads:

Stronger fear avoidance beliefs at T1 were associated with higher fatigue at T2

That wasn't the case. I suppose they mean: "Stronger fear avoidance beliefs at T1 were associated with higher fatigue at T1."

 

[ME/CFS Skeptic]

The abstract reads:

Stronger fear avoidance beliefs at T1 were associated with higher fatigue at T2, and with worse social adjustment at T1 and T2.

Later on in the text, in the section where the results are mentioned, it reads:

stronger fear avoidance beliefs were associated with higher levels of fatigue at T1, and with worse social adjustment at T1 and T2

 

[ME/CFS Skeptic]

We all know most people read the abstract of an article, not the actual text. So many would get the false impression that this study demonstrated that fear avoidance beliefs predicted fatigue at follow-up, while it didn't.

Should we consider this an accidental mistake, given that virtually the exact wording appears later on in the text, but without the mistake?

 

[Snow Leopard]

The problem is they didn't measure fatigue. They recorded responses on a questionnaire (which was never tested for quality, in terms of relevance/understandability etc), at two time intervals and the questions themselves were retrospective and potentially subject to a variety of biases.

So any references to "fatigue" should actually be replaced with "reported scores on the fatigue questionnaire" for the statements to actually be valid.

 

[MEMarge]

Thanks Trish. Sounds like it could be worth a letter to the journal summarising those points?

It's in Journal of Behavioral medicine, so it's quite likely that most of the articles have similar flaws, not sure it's worth the time to write!

 

[Snow Leopard]

We all know most people read the abstract of an article, not the actual text. So many would get the false impression that this study demonstrated that fear avoidance beliefs predicted fatigue at follow-up, while it didn't.

Should we consider this an accidental mistake, given that virtually the exact wording appears later on in the text, but without the mistake?

yes, they need to correct the mistake. It's worth writing a comment that the abstract is wrong on Pubpeer at the very least.