Chronic Fatigue Syndrome and Occupational Status: A Retrospective Longitudinal Study, 2021, Chalder et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Abstract
Aims. This paper explores socio-demographic, work and clinical characteristics that are associated with occupational status among patients who were assessed at baseline and a follow-up point.

Methods. Longitudinal data were assessed from patients affected by CFS who attended an outpatient CFS attending a specialist CFS treatment service between 2007 and 2014. The main outcome of interest, Employment status at baseline and follow-up, was available for 316 patients. Data were also included on gender, age, duration of CFS, fatigue severity, type and number of treatment sessions, coping strategies, functional impairment, common mental disorders and physical functioning.

Results. Most patients were female (73%) and had been affected by CFS for longer than 2 years (66%). Patients were followed up for an average of 285 days and over this period 53% of patients who were working remained in employment. Of the patients who were not working at baseline, 9% had returned to work at follow-up. However, of those working at baseline, 6% were unable to continue to work at follow-up. Age, fatigue severity, functional impairment, cognitive and behavioural responses, and depressive symptoms impacted on a patients’ work status at follow-up.

Conclusions. The findings indicated that it is possible for people with CFS to remain in work or return to work, despite having had a disabling illness. Work-related outcomes should be targeted in all people of working age.

https://kclpure.kcl.ac.uk/portal/en...dy(adddfb1a-00d3-4521-b753-45bc01f192d5).html

eta: full paper posted here
https://www.s4me.info/threads/chron...y-2021-chalder-et-al.23314/page-2#post-396345
 
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That's an extremely uninformative abstract. Without numbers working and not working, the percentages are meaningless.

If 53% of those who were working at the start remained in employment, and 6% were unable to continue to work, what happened to the other 41%?
 
Conclusions. The findings indicated that it is possible for people with CFS to remain in work or return to work, despite having had a disabling illness. Work-related outcomes should be targeted in all people of working age
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Fixed that:

Conclusions. The findings indicated that it is possible for some people with CFS to remain in work, but less than 10% of those who had left work were able to return to work, this was likely due to having a disabling illness. Work-related outcomes should be used with great caution for all people with ME/CFS of working age.
 
Given the sample was selected from people attending an outpatient service, there has already been a significant preselection of subjects from the milder severity levels of CFS, presumably on the basis of a very broad definition of CFS, leaving open the question as to what percentage of their subjects would meet stricter definitions of ME/CFS requiring the presence of PEM.

Also the abstract does not really clarify the relationships between the subjects, the researchers and the specialist service: “patients affected by CFS who attended an outpatient CFS attending a specialist CFS treatment service between 2007 and 2014.” (Note the only way I can approach making sense of this sentence is to assume the abbreviation CFS is used as two different acronyms in the same sentence, that is both representing Chronic Fatigue Syndrome and Chronic Fatigue Service in the same sentence.)

Further was this data collected as part of the specialist services ongoing interaction with the patients, or were the subjects referred on the a distinct research project? It may be that the full article when published will clarify this, but, if the data came from patients still in contact with the service for the full period of the study, this means that there is further preselection of participants as those that refused treatment or who dropped out from treatment were also excluded. It is possible or probable that those with more severe symptoms and/or those with the symptom of PEM are more likely to drop out from a service providing graded exercise therapy.

It is clear that this sample is unlikely to be representation of people with ME/CFS as a whole, and it may also turn out not even to be representative of those at the milder end of the severity spectrum.
 
Peter Trewhitt said:
It is clear that this sample is unlikely to be representation of people with ME/CFS as a whole, and it may also turn out not even to be representative of those at the milder end of the severity spectrum.
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Indeed. It's one of the short surveys that could usefully be done with the DecodeME cohort eventually, to get a bigger and possibly more representative sample.

If it turns out that, as we suspect, many people with ME either can't work at all or have scaled back their household budgets because they could only manage part time hours or had to change to less demanding work, it could help shine more light on the hidden societal costs.
 
Sly Saint said: ↑
Work-related outcomes should be targeted in all people of working age.
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strategist said:
Why? We already have data on showing that CBT and GET do not have any effect on employment, other than maybe a small negative impact.
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I could really have done with someone advising me that I should be making plans to withdraw from work a lot sooner than I did! Not that this is what they mean, of course.
 
That the period of study from baseline to follow up was on average just 285 days or some nine months, can we have any idea how representative this is of overall long term employment issues? I attempted to continue working both full time and subsequently half time in the first six or so years of my ME, before a major relapse forced ill health retirement. Also in the subsequent twenty or years plus I have attempted some four different approaches to self employed income generation, some lasting a number of years, all of which were ultimately associated with further relapses.

Also the abstract seemingly uses ‘working’ and ‘in employment’ synonymously, which is not necessarily the case. I was on sick leave for the last year of my employment in my original professional career, but attending an outpatient clinic or participating in a research project would have been well beyond my capacity at that point in time.

Given the figures as presented here are completely uninterpretable, all we can concede is that an unknown percentage of the sample left some form or level of employment during the study and an unknown percentage of the sample returned to some form or level of employment during the study.

The authors finish with: “Conclusions. The findings indicated that it is possible for people with CFS to remain in work or return to work, despite having had a disabling illness. Work-related outcomes should be targeted in all people of working age.” I assume the implication is that intervention should be targeted at getting people remaining in work and/or back to work. Though on the basis of this data it could be argued with equal justification that intervention should be targeted at getting people out of work or discouraging them from attempting to return to work.

[edit - clarified some wording]
 
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This reads like a totally different paper - but seems to use the same data: https://academic.oup.com/occmed/article-pdf/69/6/453/30092523/kqz108.pdf
Introduction
International estimates suggest that 35–69% of people with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), are not working due to their illness [1]. With an estimated prevalence of CFS between 0.2 and 0.56% among adults in the UK [2] and the chronic nature of the illness, the high level of work incapacity contributes substantially to its huge economic cost. Indeed, the economic cost due to the discontinuation of employment in patients with CFS before they access specialist services in the UK is estimated at £100 million annually [3]. Even when patients are able to stay in employment, their performance is often impaired as they experience challenges in conducting work-related duties. Hence, many patients report being forced to cut down their hours or change jobs [1,4]. To further our understanding of the impact of CFS, it is essential to explore occupational outcomes, as they are a critical measure of prognosis and the cost of illness. This cross-sectional study examined work status among CFS patients and whether there were any differences in occupational outcomes by socio-demographic, well-being and illness characteristics.

Methods

Patients attending an out-patient chronic fatigue research and treatment unit in London were included in the current study after written consent was obtained (n = 746).
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Kitty said:
I could really have done with someone advising me that I should be making plans to withdraw from work a lot sooner than I did! Not that this is what they mean, of course.
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If I had this advice and decreased my expectations to part time professional work rather than a career I might still be in employment and have had a better life. Expectations of a career or improvement over time led to overdoing things and further decline.

Peter Trewhitt said:
I was on sick leave for the last year of my employment in my original professional career
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Ditto. I would have listed as employed (full time student) but could not even make it to my PhD lab, first on sick leave then leave of absence.

Peter Trewhitt said:
Given the sample was selected from people attending an outpatient service
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. . . with potentially three layers of selection bias from your commentary, what can really be said about patients in the study that is valid for the patient population at large? Its mildly suggestive at best, and that is being generous in the interpretation. At worst its a completely invalid argument. I would also like to add allegiance bias to that. These researchers are so tied to their school of thought that we need independent and objective confirmation of just about everything they touch. Whether or not they actually believe what they are writing is another question as well.
 
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