A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture..., 2022, Bernhoff et al.

A comparison of health-related factors between patients diagnosed with ME/CFS and patients with a related symptom picture but no ME/CFS diagnosis: a cross-sectional exploratory study

Abstract
Background

In chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), the capacity for activity and participation is strongly limited. The disease definition is very broad, and considering the lack of evidence for best treatment, it is important to understand what is ME/CFS-specific in the biopsychosocial perspective in comparison with similar syndromes. The objective was to study the difference between those diagnosed with ME/CFS and those with similar symptoms but no ME/CFS diagnosis for self-perceived level of physical activity, work ability, anxiety/depression, and health-related quality of life.

Methods
This was a clinical cross-sectional study with data collected from mailed questionnaires. The following variables were compared between patients diagnosed with ME/CFS (n = 205) and those with similar symptoms but no diagnosis (n = 57); level of physical activity, Work ability index (WAI), Hospital anxiety and depression scale (HAD-A/HAD-D), and RAND-36 Physical functioning, Role limitations due to physical health problems, Role limitations due to personal or emotional problems, Social functioning, Energy/fatigue, Bodily pain, Emotional well-being, and General health perceptions. The Chi-squared test (nominal data), the Mann-Whitney U test, the Student’s t test and regression analysis were used to analyze the data.

Results
The group diagnosed with ME/CFS had a more impaired physical and mental exertion ability as compared to the group that had similar symptoms but was not diagnosed with ME/CFS, shown by a RAND-36 lower index of physical role functioning, social functioning, energy, worse pain and poorer overall health (p ≤ 0.05). In contrast, no significant group differences emerged for weekly level of physical activity, work ability, anxiety/depression, and RAND-36 Emotional role limitation and well-being.

Conclusion
Our results indicate that those with a diagnosis of ME/CFS are characterized by an impaired ability for physical or mental exertion, worse pain, and poorer overall health as compared to individuals with similar symptoms but for whom ME/CFS-diagnosis was not established. The results may be cautiously interpreted as support when focusing on patients’ self-care in terms of management of energy levels. The results must however be verified in future studies.

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03769-x

 

"To manage the complexities of patients, a more flexible biopsychosocial approach is recommended [17]. Considering the broad definition of ME/CFS, it would be of interest to define what characterizes those with established ME/CFS diagnosis regarding self-perceived health factors compared to those with a related complex symptom picture who do not have a diagnosis."

Reference 17 is to Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies thread = https://www.s4me.info/threads/overc...-me-in-primary-care-2014-bayliss-et-al.30841/

 

The corresponding author, Gabriella Bernhoff, is listed as being affiliated with the ME Centre, Bragée Clinics, Stockholm, Sweden.

 

"The scoring of emotional or psychological ill-health (measurements of anxiety/depression, and emotional role limitations and well-being) reported in the present study was at the lower end (equals better health status) of reports in previous studies of the same population, which showed mean HAD-anxiety score 10.0 and mean HAD-depression 8.9 [44], while a study with patients with fibromyalgia [45] showed median HAD-anxiety 10.6 och HAD-depression 9.9. Surprisingly, no differences were found in our study between the diagnosed and the undiagnosed group regarding anxiety/depression, emotional well-being and emotional role limitation, so presumably none of these factors should have had an impact on the particularly low perceived energy level seen within the ME/CFS Group."

 

When you factor in the criteria, this is anything but broad. It's actually pretty specific, even obvious, to the point where even people who don't understand it can manage it, albeit unwittingly.

But what is the point of this study? This has been done dozens of times already. Literally, it's so overdone it's turned into coal. I swear the field of clinical psychology is borderline an experiment into mass amnesia, where things published dozens of times over can be hard to find, and things with no basis in evidence somehow found everywhere. I've rarely seen anything as useless and that includes NFTs.

 

There's a major structural inconsistency. While Bernhoff et al rely on Bayliss et al to invoke a biopsychosocial approach, Bayliss et al being reliant on NICE 2007, (see post 2 above) Bernhoff et al also rely on NICE 2021 as a reference for:

"The findings of impaired physical ability being characteristic in ME/CFS are, as could be expected, in accordance with previous studies [39]." Ref 39 = Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

yet Bernhoff et al make no attempt to account for the significant changes between the 2007 and 2021 Guidance, notably the downgrading of the two key BPS associated interventions of CBT and GET, this despite the fact that Bernhoff et al's reference 3 is to the very fact of these changes:

"In recent years, chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME), hereinafter referred to as ME/CFS, has been, and continues to be, a debated field [1,2,3]." Ref 3 = ME exercise therapy guidance scrapped by health watchdog Nice

Perhaps Bernhoff et al intend their phrase "a more flexible biopsychosocial approach is recommended" to address the change in NICE Guidance without having to acknowledge it outright. Though they might have given some clue as to 'more flexible than what ?' or 'more flexible toward what ?'.

 

Things that are easy to do and get funding for will get repeated. There's definitely a problem with the rewards for doing things already done. Maybe the decision-makers aren't aware of what's been published, because most of the studies aren't worth reading.

There's also a problem with rewarding badly-done studies. Maybe the decision-makers aren't adequately educated in the field that they're making decisions for?