Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study... 2023 Habermann-Horstmeier

Full title: Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective

Abstract

Background
ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that is predominantly viewed as a neuroimmunological multisystem disease, which is still unknown to many doctors in Germany or which they classify as a psychosomatic disease. From their perspective, ME/CFS patients report significant deficits in terms of medical treatment and a doctor-patient relationship (DP relationship) that is perceived as problematic. The aim of the present study is to more precisely analyse the process of finding a diagnosis as an influencing factor on the DP relationship in ME/CFS from the point of view of those affected.

Method
As part of an explorative qualitative survey, 544 ME/CFS patients (> 20 years; 455 ♀, 89 ♂) with a medical diagnosis of ME/CFS were asked in writing about their experiences with regard to the process of finding a diagnosis. The sampling was previously done by self-activation and via the snowball principle. The questionnaire to be answered was structured analogously to a focused, standardized guideline interview. The evaluation was carried out as part of a qualitative content analysis according to Mayring. Some of the results were subsequently quantified.


Results
The participants described what they saw as the inadequate process of making a diagnosis as a central factor in a problematic DP relationship in ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness, insist on their level of knowledge, ignore patient knowledge and disregard scientific information provided. They follow the standard program, think in “pigeonholes” and are incapable of systemic thinking. This has a significant impact on the DP relationship.

Discussion
From the point of view of ME/CFS patients, the process of making a diagnosis and the recognition of ME/CFS as a neuroimmunological multisystem disease are the central aspects of a DP relationship that they experience as problematic. In the past, findings classified as “subjective” and thus ignored, the pigeonholing that is characteristic of biomedically oriented medicine and a healthcare system that opposes systemic thinking when making a diagnosis have all been identified as factors that may have a significant impact on the DP relationship.

Open access (in German), https://www.thieme-connect.de/products/ejournals/abstract/10.1055/a-2197-6479

 

viewed by whom? its certainly not viewed as that by the vast majority of the medical profession, in any country afaiaa.

And if they mean viewed by patients as that, then i'd suggest that patients' insistence on a 'neuroimmune' paradigm (with insufficient evidence to support it), will not be helpful in the diagnostic process which is being studied.

Dont get me wrong, i totally agree about the pigeonholing & the way Drs think/behave regarding ME/CFS.

I'm just saying that trying to convince Drs to take on the "neuroimmune multisystem disease" thing, IMHO isnt helpful. As although there might be evidence to suggest all kinds of things biomedically, none of them are proven, & Drs are naturally going to be resistant to things which have little evidence to support them.

Edit: Well lol they ought to be! They seem to swallow the BPS stuff without even a blink, but YKWIM

 

A patient will not be taken more seriously by using medical terms and possibly pigeonholed as a 'difficult patient'.

 

exactly this, particularly when such terms are not exactly mainstream.