What name is given to the disease?
The most common term is still either “Chronic Fatigue” or “Chronic Fatigue Syndrome”. Often, it is accompanied by phrases like “of unknown aetiology”, “postviral” or “postinfectious”.
“Myalgic Encephalomyelopathy(-itis)” or “Encephalitis” started to emerge more and more over the last years and also tend to be accompanied by “Chronic Fatigue Syndrome”, resulting in the double name of ME/CFS.
It is customary in Switzerland to list differential diagnoses in one go on official reports, so ME/CFS is usually accompanied by mentions of possible “Neurasthenia”, “Depression” or “Depressive Disorders”, and “Psychosomatic / Conversion / Adjustment Disorders”. Different specialists also usually add additional possible diagnoses according to their specialisations and personal states of knowledge (most commonly: “Fibromyalgia”, “Multiple Chemical Sensitivity Syndrome”, different chronic infections, metabolic and immunological disorders).
Estimated numbers of patients
As of 2019, the population of Switzerland was estimated to be around 8.545 million people. By applying the most commonly referred prevalence rates of ME/CFS, we assume the number of ME/CFS patients to be between 16 000 and 34 000. No prevalence studies have been conducted in Switzerland so far.
Status of recognition
ME/CFS is currently recognised by a slowly increasing number of physicians – this due to a pro-active attitude of the patients themselves, as well as different awareness actions launched by the two local ME/CFS associations.
ME/CFS is sadly still not rooted as a separate, bona-fide diagnosis at neither executory, nor legislatory levels of healthcare. The regular patient will experience a high amount of disbelief, trivialization, simplification and ignorance.
Specialism used to treat ME
Since ME/CFS is not officially assigned to any specialism in Switzerland, the diagnosis can be made by any practicing clinician – most commonly by general practitioners and psychiatrists.
Average time before diagnosis
From our experience, most patients who received the diagnosis ME/CFS report the time to diagnosis to be between 2 and 5 years.
A small study is currently in the making to provide the basic characteristics of over 100 ME/CFS patients from the databank of one local clinic which openly tries to accommodate such patients as well as from a survey among the members of both Swiss ME/CFS associations.
In Switzerland, ME/CFS remains a diagnosis of exclusion and usually emerges as one of the last possibilities without even being explicitly backed up by concrete guidelines.
The clinicians knowledgeable of ME/CFS tend to resort to CDC (2019), IOM (2015), ICC (2011) or CCC (2003-2009). The CDC and the IOM criteria/guidelines are becoming increasingly popular due to their simplicity and practicability.
Disability status of patients
One of the most burning issues is the very low chance of acquiring disability benefits even by the bedbound patients – the validation process is not gauged for ME/CFS (or many other, less common diseases). The patients are usually sentenced to long and excruciating evaluations and lots of bureaucracy only to be pronounced healthy or fit to work in the end, or to find out that their percentual grades of incapacity to work are considered not enough (= less than 40%) for any disability benefits whatsoever.
The concept of post-exertional malaise (PEM) seems to be the most difficult to understand and accept by the officials.
The interest in ME/CFS in the medical and regular communities has risen significantly during the course of COVID19 pandemic. The entity of “Long COVID” is already considered a fact, and the similarities with ME/CFS are striking - to the point that many patients and clinicians consider “Long COVID” a subset of ME/CFS.
Patients with ME/CFS are a major time and bureaucratical burden to pioneering physicians willing to accommodate for such patients, since the healthcare system does not provide any efficient tools for handling ME/CFS. Also, patients with ME/CFS keep reporting their symptoms, life observations and new findings at very high rates – regular clinical work makes it impossible for most doctors to follow up on that. Moreover, the pioneering physicians who would not hold very high-esteemed positions in bigger hospitals and institutes are usually being ridiculed by their peers and the authorities who, at the same time, usually do not even make an effort of reading a single review on ME/CFS.
The need for a proper center for ME/CFS (offering proper work-ups and an official diagnosis, providing further care / coaching, conducting studies and keeping an official record of the patients) is evident. As of now, only 4 bigger hospitals and some practices are openly known to provide the patients with the diagnosis of ME/CFS and offer at least some sort of conservative/symptomatic treatment. The further infrastructure is lacking however, so even with the proper diagnosis the patients are mostly left on their own.
Since ME/CFS is still incurable, the priority should be to provide the afflicted with the proper diagnosis as soon as possible. Since ME/CFS leads to major everyday disability, unproblematic access should be granted to efficient means of preserving the existence of those patients.