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

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
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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

 

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.

 

"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."

Trudie Chalder appears to have had a sex change

 

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

 

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.

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

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

 

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.

 

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!

 

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

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

 

The abstract reads:

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

 

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?

 

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.

 

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!

 

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