Research published on 15th of November entitled ‘Experiences of ME/CFS patients with doctor searches, rehabilitation and hospital stays, experts and health and pension insurance' (Habermann-Horstmeier MPH & Horstmeier) analyzes people with myalgic encephalomyelitis/chronic fatigue syndrome experiences of the German healthcare and social system.
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 sufferers (> 20 years; 402 ♀, 80 ♂) were asked about their experiences within the German health and social system.
Results
Patients with ME/CFS reported that they had had predominantly negative experiences within the German healthcare and social system. This affects all areas with which ME/CFS sufferers have contact (i.e. general practitioners and clinics, rehabilitation facilities, health and pension insurance companies, experts, courts, etc., and to a lesser extent physiotherapy and occupational therapy).
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.
MEA Comment
We all know about the problems that people with ME/CFS still face in the UK when it comes to obtaining good information and guidance from health professionals on the diagnosis and management of ME/CFS.
But it’s worse or far worse in most European countries – as this report from Germany illustrates.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
