Experiences of ME/CFS patients with finding a doctor/rehabilitation & hospital stays/experts/health & pension insurance, 2024, Habermann-Horstmeier

(German fulltext)

Habermann-Horstmeier, L., Horstmeier, L.M. Erfahrungen von ME/CFS-Kranken (Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom) mit Arztsuche, Reha- und Klinikaufenthalten, Gutachter:innen sowie Kranken- und Rentenversicherungen. Präv Gesundheitsf (2024). https://doi.org/10.1007/s11553-024-01170-8

Habermann-Horstmeier, L., Horstmeier, LM Experiences of ME/CFS patients (myalgic encephalomyelitis/chronic fatigue syndrome) with doctor searches, rehabilitation and hospital stays, experts and health and pension insurance. Präv Gesundheitsf (2024). https://doi.org/10.1007/s11553-024-01170-8

Abstract

Background
There have already been indications in the past that patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are largely dissatisfied with the German healthcare and social system. Previous evaluations of the APAV-ME/CFS study had shown that they found the physician–patient relationship particularly problematic. The aim of this study was to analyze what other experiences they had had in the German healthcare and social system.

Methods
As part of an exploratory qualitative survey, 482 medically diagnosed ME/CFS patients (> 20 years; 402 women, 80 men) were asked about their experiences within the German healthcare and social system. The qualitative part of the questionnaire was structured analogously to a focused, standardized guided interview. The written answers were evaluated using a qualitative content analysis according to Mayring, which was supplemented by quantitative data as part of a mixed methods approach.

Results
Patients with ME/CFS reported that they had had predominantly negative experiences within the German healthcare and social system. This applies to all areas with which the ME/CFS sufferers had contact (e.g., general practitioners and clinics, rehabilitation facilities, healthcare and pension insurance companies, experts, courts and other authorities, and to a lesser extent physiotherapy and occupational therapy). In particular, the search for qualified physicians (97.5%) and rehabilitation measures for ME/CFS patients (93.8%) were rated predominantly negatively; 56.5% of the patients reported that their health had worsened as a result of rehabilitation or hospital stays, while for 36.6% it had remained the same.

Conclusions
ME/CFS patients feel let down not only by the medical profession, but by the entire healthcare and social system. Many are now disappointed and resigned. From the perspective of those affected, their situation can only improve if ME/CFS is recognized by the medical profession as a neuroimmunological multisystem disease, so that adequate medical and social care for ME/CFS patients can then be established on this basis.

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Zusammenfassung

Hintergrund
Verschiedene Studien zeigten bereits, dass an Myalgischer Enzephalomyelitis/Chronischem Fatigue-Syndrom (ME/CFS) Erkrankte mit dem deutschen Gesundheits- und Sozialsystem überwiegend unzufrieden sind. Sie empfanden v. a. das Arzt-Patient-Verhältnis als problematisch. Ziel dieser Untersuchung ist es zu analysieren, welche Erfahrungen sie darüber hinaus im deutschen Gesundheits- und Sozialsystem gemacht haben.

Methode
Im Rahmen eines explorativen qualitativen Surveys wurden 482 ärztlich diagnostizierte ME/CFS-Erkrankte (> 20 Jahre; 402 ♀, 80 ♂) nach ihren Erfahrungen innerhalb des deutschen Gesundheits- und Sozialsystems befragt. Der qualitative Teil des Fragebogens war analog einem fokussierten, standardisierten Leitfadeninterview aufgebaut. Die Auswertung der schriftlichen Antworten erfolgte über eine qualitative Inhaltsanalyse nach Mayring, die im Rahmen eines Mixed-methods-Ansatzes durch quantitative Daten ergänzt wurden.

Ergebnisse
Auch unsere Proband:innen berichteten von überwiegend negativen Erfahrungen innerhalb des deutschen Gesundheits- und Sozialsystems. Betroffen sind alle Bereiche, mit denen die ME/CFS-Erkrankten Kontakt haben (d. h. niedergelassene Ärzt:innen und Kliniken, Reha-Einrichtungen, Kranken- und Rentenversicherungen, Gutachter:innen, Gerichte etc., etwas weniger auch Physio- und Ergotherapie). Besonders die Suche nach qualifizierten Ärzt:innen (97,5 %) und Reha-Maßnahmen für ME/CFS-Erkrankte (93,8 %) wurden negativ bewertet. 56,5 % der Proband:innen berichteten, dass sich ihr Gesundheitszustand durch Reha- oder Klinikaufenthalte verschlechtert hat.

Schlussfolgerungen
Die ME/CFS-Patient:innen fühlen sich vom gesamten Gesundheits- und Sozialsystem im Stich gelassen. Viele sind enttäuscht und resignieren. Aus ihrer Sicht kann sich die Situation nur dann bessern, wenn ME/CFS von der Ärzteschaft als neuroimmunologische Multisystemerkrankung anerkannt wird, damit auf dieser Basis eine adäquate medizinische/soziale Versorgung von ME/CFS-Patient:innen aufgebaut werden kann.

 

Unfortunately, most MDs see nothing wrong with this because it's explicitly the goal. They don't want to see us. They explicitly want us out of their working hours. They don't mind what happens to us outside of their awareness, they just don't want to find us in their awareness. Probably the worst perverse incentive system ever: the more failure they produce, the better it feels for them. Because they see fewer patients this way. Not that they don't see any, but the more cruel and dismissive the system is, the better they feel about it because they see fewer of us, or for less time. There is not a single system in the world that can achieve anything with these conditions.

Which makes this:

Very annoying, because we do not 'feel' let down, we are. Explicitly so. As a deliberate goal. This is not some natural phenomenon. The people who make those decisions all have agency, they make conscious choices with the same information that is available to us. Using this 'things be happening' language contributes to the problem because it paints is as something that is just happening, rather than literally billions of deliberate conscious choices.

And as bad as this survey depicts the situation, one thing that has to be kept in mind is that everything in health care is graded on a giant upward curve. Experiences that would normally rate a 1/5 in most situations have a very strong floor effect where people will still rate it around a 3, a passing grade. This hides just how abysmal the situation is, and it does so in all health matters. But medicine is completely oblivious to this. So they keep getting ratings that would kick a Uber driver out of their gig on day 1 (actually you need a 4 and above so pretty much literally all of them would fail at it), but it still somehow rates around a 3/5, at worst a 2.5/5 like this study here. Just because of the strong upward grading curve. A grading curve that is causing a huge amount of problems.

And so we are in the problematic situation of marking your own work. Because barely 1-2% of MDs would find anything wrong here. So they deliver a test getting close to 0, but still get a passing grade. Hence they never learn that they are failing, in fact are getting explicit messages that everything is fine because the failure is systematically covered up. Because they mark their own work. And whenever it happens that their work gets marked as a failure, they just dismiss it and it doesn't affect their grade. Any education system with these features would be a total disaster. But if you'd allow teachers to grade up to hide this fact, no one would ever know. And so no one would care. Just like we are facing here.