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Original Article
Health system support among patients with ME/CFS in Switzerland
Rea Tschopp, PhD
a
,
c
,
d
,
*
, Rahel S. Ko
¨nig, MD
b
, Protazy Rejmer, MD
e
and
Daniel H. Paris, MD
a
,
c
a
Department of Epidemiology and Public Health, Swiss Tropical and Public Health Institute, Allschwil, Switzerland
b
Faculty of Medicine, University of Basel, Basel, Switzerland
c
University of Basel, Switzerland
d
Armauer Hansen Research Institute, Addis Ababa, Ethiopia
e
Seegarten Clinic, Kilchberg, Switzerland
Received 9 September 2022; revised 23 November 2022; accepted 25 December 2022; Available online ---
ﺍﻟﻤﻠﺨﺺ
ﺃﻫﺪﺍﻑﺍﻟﺒﺤﺚ:ﺍﻟﺘﻬﺎﺏﺍﻟﺪﻣﺎﻍﻭﺍﻟﻨﺨﺎﻉﺍﻟﻌﻀﻠﻲ/ﻣﺘﻼﺯﻣﺔﺍﻟﺘﻌﺐﺍﻟﻤﺰﻣﻦﻫﻮ
ﻣﺮﺽﻣﺰﻣﻦﻣﻌﻘﺪﻣﺘﻌﺪﺩﺍﻟﻌﻮﺍﻣﻞ.ﺗﻮﺍﺟﻪﺭﻋﺎﻳﺔﺍﻟﻤﺮﺿ
ﻰﺍﻟﻜﺎﻓﻴﺔﺗﺤﺪﻳﺎﺑﺴﺒﺐ
ﺿﻌﻒﺍﻟﻤﻌﺮﻓﺔﺑﻴﻦﺍﻟﻤﺘﺨﺼﺼﻴﻦﻓﻲﺍﻟﺮﻋﺎﻳﺔﺍﻟﺼﺤﻴﺔﻭﺍﻻﻋﺘﻘﺎﺩﺍﻟﺘﺎﺭﻳﺨﻲ
ﺍﻟﺨﺎﻃﺊﺑﺄﻥﺍﻟﻤﺮﺽﻟﻪﻃﺒﻴﻌﺔﻧﻔﺴﻴﺔ.ﻗﻴﻤﺖ
ﻫﺬﻩﺍﻟﺪﺭﺍﺳﺔﺍﻟﺘﺤﺪﻳﺎﺕﺍﻟﻤﺘﻌﻠﻘﺔ
ﺑﺎﻟﺼﺤﺔﺍﻟﺘﻲﻳﻮﺍﺟﻬﻬﺎﻣﺮﺿﻰﺍﻟﺘﻬﺎﺏﺍﻟﺪﻣﺎﻍﻭﺍﻟﻨﺨﺎﻉﺍﻟﻌﻀﻠﻲ/ﻣﺘﻼﺯﻣﺔﺍﻟﺘﻌﺐ
ﺍﻟﻤﺰﻣﻦﻓﻲﺳﻮﻳﺴﺮﺍ،ﻭﻣ
ﺎﺇﺫﺍﻛﺎﻧﻮﺍﻳﺘﻠﻘﻮﻥﺭﻋﺎﻳﺔﺻﺤﻴﺔﻛﺎﻓﻴﺔﺃﻡﻻ.
ﻃﺮﻳﻘﺔﺍﻟﺒﺤﺚ:ﺗﻢﺟﻤﻊﺍﻟﺒﻴﺎﻧﺎﺕﺍﻟﻜﻤﻴﺔﻭﺍﻟﻨﻮﻋﻴﺔﻣﻦﺍﺳﺘﺒﻴﺎﻥﺗﻢﺇﺟﺮﺍﺅﻩﺫﺍﺗﻴﺎﺑﻴﻦ
ﻳﻮﻧﻴﻮ
ﻭﺳﺒﺘﻤﺒﺮ2021ﺑﻴﻦ169ﻣﺮﻳﻀﺎﺑﺎﻟﺘﻬﺎﺏﺍﻟﺪﻣﺎﻍﻭﺍﻟﻨﺨﺎﻉﺍﻟﻌﻀﻠﻲ/
ﻣﺘﻼﺯﻣﺔﺍﻟﺘﻌﺐﺍﻟﻤﺰﻣﻦﻓﻲﺳﻮﻳﺴﺮﺍ.
ﺍﻟﻨﺘﺎﺋﺞ:ﻛﺎﻥﻣﺘﻮﺳﻂﺍﻟﻌﻤﺮﻋﻨﺪﺍﻟﺘﺸﺨﻴﺺ
38.8ﺳﻨﺔ.ﻛﺎﻥﺍﻟﺘﺸﺨﻴﺺﻓﻲ
ﺍﻷﻋﻤﺎﺭﺩﻭﻥ18ﻋﺎﻣﺎﺳﻴﺌﺎﻟﻠﻐﺎﻳﺔ.ﻛﺎﻥﻣﺘﻮﺳﻂﺍﻟﻮﻗﺖﻣﻦﺑﺪﺍﻳﺔﺍﻟﻤﺮﺽﺇﻟﻰ
ﺍﻟﺘﺸﺨﻴﺺ6.7ﺳﻨﻮﺍﺕ،ﻣﻊﺃﺧﺬ11.1ﻣﻮﻋﺪﺍﻣﺨﺘﻠﻔﺎ
ﻓﻲﺍﻟﻤﺘﻮﺳﻂﻭ2.6
ﺗﺸﺨﻴﺼﺎﺧﺎﻃﺌﺎ.ﺃﺩﻯﺿﻌﻒﻣﻌﺪﻝﺍﻟﺘﺸﺨﻴﺺﻭﺍﻟﻤﻌﺮﻓﺔﺑﺎﻷﻣﺮﺍﺽﺑﻴﻦﺍﻟﻤﻬﻨﻴﻴﻦ
ﺍﻟﺼﺤﻴﻴﻦﻓﻲﺳﻮﻳﺴﺮﺍﺇﻟﻰﺳﻔﺮ13.5٪ﻣﻦﺍﻟﻤﺮﺿﻰﺇﻟﻰﺍ
ﻟﺨﺎﺭﺝﻟﻠﺒﺤﺚﻋﻦ
ﺍﻟﺘﺸﺨﻴﺺ.ﺗﻢﺇﺧﺒﺎﺭﺍﻟﻐﺎﻟﺒﻴﺔﺍﻟﻌﻈﻤﻰﻣﻦﺍﻟﻤﺮﺿﻰ)90.5٪(ﻣﺮﺓﻭﺍﺣﺪﺓﻋﻠﻰ
ﺍﻷﻗﻞﺃﻥﺃﻋﺮﺍﺿﻬﻢﻧﻔﺴﻴﺔﺟﺴﺪﻳﺔ.ﺃﻋﺮﺏﺍﻟﻤﺮﺿﻰﺍﻟﺴ
ﻮﻳﺴﺮﻳﻮﻥﻋﻦﻣﺴﺘﻮﻯﻋﺎﻝ
ﻣﻦﻋﺪﻡﺍﻟﺮﺿﺎﻋﻦﺍﻟﻨﻈﺎﻡﺍﻟﺼﺤﻲﻭﺃﺷﺎﺭﻭﺍﺇﻟﻰﻧﻘﺺﺍﻟﻤﻌﺮﻓﺔﺑﻴﻦﺍﻷﻃﺒﺎﺀﻓﻴﻤﺎ
ﻳﺘﻌﻠﻖﺑﺎﻟﺘﻬﺎﺏﺍﻟﺪﻣﺎﻍﻭﺍﻟﻨﺨﺎﻉﺍﻟﻌ
ﻀﻠﻲ/ﻣﺘﻼﺯﻣﺔﺍﻟﺘﻌﺐﺍﻟﻤﺰﻣﻦ.ﺗﻢﻭﺻﻒ
ﺍﻟﻌﻼﺟﺎﺕﺍﻟﻤﻮﺻﻮﻓﺔﻣﻦﻗﺒﻞﺍﻷﻃﺒﺎﺀﺃﻭﺍﻟﺘﻲﺟﺮﺑﻬﺎﺍﻟﻤﺮﺿﻰﺑﺎﻹﺿﺎﻓﺔﺇﻟﻰ
ﻓﻌﺎﻟﻴﺘﻬﺎﺍﻟﻤﺘﺼﻮﺭﺓ.ﺍﻋﺘﺒ
ﺮﺍﻟﻤﺮﺿﻰﺍﻟﻌﻼﺝﺍﻟﺘﺪﺭﻳﺠﻲﺍﻟﺘﺪﺭﻳﺠﻲﺿﺎﺭﺍ،ﻓﻲﺣﻴﻦﺗﻢ
ﺍﻹﺑﻼﻍﻋﻦﻓﺎﺋﺪﺓ)ﺃﺛﻨﺎﺀﺗﻨﻈﻴﻤﻪ(ﺍﻟﻄﺐﺍﻟﺘﻜﻤﻴﻠﻲ/ﺍﻟﺒﺪﻳﻞ،ﻭﺍﻟﻤﻜﻤﻼﺕﺍﻟﻐﺬﺍﺋﻴﺔ
ﻭﺍﻷﺩﻭﻳﺔﻟﺘﺨﻔﻴﻒﺍﻷﻋﺮﺍﺽﺑﺪﺭﺟﺎﺕﻣﺘﻔﺎﻭﺗﺔ.
ﺍﻻﺳﺘﻨﺘﺎﺟﺎﺕ:ﺳﻠﻄﺖﻫﺬﻩﺍﻟﺪﺭﺍﺳﺔﺍﻟﻀﻮﺀﻋﻠﻰﺿﻌﻒﺍﻟﻤﻌﺮﻓﺔﺑﺎﻷﻣﺮﺍﺽﺑﻴﻦ
ﻣﻘﺪﻣﻲﺍﻟﺮﻋﺎﻳﺔﺍﻟﺼ
ﺤﻴﺔﻓﻲﺳﻮﻳﺴﺮﺍ،ﻣﻤﺎﺃﺩﻯﺇﻟﻰﺍﺭﺗﻔﺎﻉﻣﺴﺘﻮﻯﻋﺪﻡﺭﺿﺎ
ﺍﻟﻤﺮﺿﻰ،ﻭﺗﺄﺧﺮﺗﺸﺨﻴﺺﺍﻟﺘﻬﺎﺏﺍﻟﺪﻣﺎﻍﻭﺍﻟﻨﺨﺎﻉﺍﻟﻌﻀﻠﻲ/ﻣﺘﻼﺯﻣﺔﺍﻟﺘﻌﺐ
ﺍﻟﻤﺰﻣﻦﻭﻭﺻ
ﻒﺍﻟﻌﻼﺟﺎﺕﻏﻴﺮﺍﻟﻤﻨﺎﺳﺒﺔ،ﻣﻤﺎﻳﺰﻳﺪﻣﻦﺿﺎﺋﻘﺔﺍﻟﻤﺮﻳﺾﻭﻋﺐء
ﺍﻟﻤﺮﺽ.
ﺍﻟﻜﻠﻤﺎﺕﺍﻟﻤﻔﺘﺎﺣﻴﺔ:ﺍﻟﺘﺸﺨﻴﺺ؛ﺍﻟﻤﻌﺮﻓﺔ؛ﺍﻟﺘﻬﺎﺏﺍﻟﺪﻣﺎﻍﻭﺍﻟﻨﺨﺎ
ﻉﺍﻟﻌﻀﻠﻲ/
ﻣﺘﻼﺯﻣﺔﺍﻟﺘﻌﺐﺍﻟﻤﺰﻣﻦ؛ﺭﻋﺎﻳﺔﻃﺒﻴﺔ؛ﺳﻮﻳﺴﺮﺍ؛ﺍﻟﻌﻼﺟﺎﺕ
Abstract
Objectives: Myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS) is a complex chronic and debili-
tating multifactorial disease. Adequate patient care is
challenged by poor knowledge among health care pro-
fessionals and the historical misconception that the dis-
ease is psychological in nature. This study assessed the
health-related challenges faced by patients with ME/
CFS in Switzerland and examined whether they receive
adequate health care.
Methods: Quantitative and qualitative data were
collected through a self-administered questionnaire be-
tween June and September of 2021, among 169 patients
with ME/CFS in Switzerland.
Results: The mean age at diagnosis was 38.8 years. Only
one-third of ME/CFS affected children and youth were
correctly diagnosed before their 18th birthday. The mean
time from disease onset to diagnosis was 6.7 years, and
patients had an average of 11.1 different appointments
*Corresponding address: Swiss Tropical and Public Health
Institute, Kreuzstrasse 2, 4123, Allschwil, Switzerland.
E-mail: rea.tschopp@swisstph.ch (R. Tschopp)
Peer review under responsibility of Taibah University.
Production and hosting by Elsevier
Taibah University
Journal of Taibah University Medical Sciences
www.sciencedirect.com
1658-3612 Ó2023 Taibah University.
Production and hosting by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/
licenses/by-nc-nd/4.0/). https://doi.org/10.1016/j.jtumed.2022.12.019
Journal of Taibah University Medical Sciences (xxxx) xxx(xxx), xxx
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
and 2.6 misdiagnoses. A poor diagnosis rate and insuffi-
cient disease knowledge among health professionals in
Switzerland led 13.5% of the patients to travel abroad to
seek a diagnosis. Most patients (90.5%) were told at least
once that their symptoms were psychosomatic. Swiss
patients expressed high dissatisfaction with the health
system and indicated that physicians lacked knowledge
regarding ME/CFS. Therapies prescribed by physicians
or tried by patients, as well as their perceived efficacy,
were described. Graded Exercise Therapy (GET) was
perceived as harmful by patients, whereas pacing, com-
plementary/alternative medicine, and dietary supple-
ments and medications to alleviate symptoms were
reported to be helpful to varying degrees.
Conclusion: This study highlights that poor disease
knowledge among health care providers in Switzerland
has led to high patient dissatisfaction, and delays in ME/
CFS diagnoses and prescription of inappropriate thera-
pies, thus adding to patient distress and disease burden.
Keywords: Diagnostic; Knowledge; Medical care; Myalgic
encephalomyelitis/chronic fatigue syndrome; Switzerland;
Therapies
Ó2023 Taibah University.
Production and hosting by Elsevier Ltd. This is an open
access article under the CC BY-NC-ND license (http://
creativecommons.org/licenses/by-nc-nd/4.0/).
Introduction
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/
CFS) is a multifactorial, complex, chronic, stigmatizing,
physically debilitating disease whose etiology remains
unknown.
1
It simultaneously affects multiple systems of the
body in response to triggers. Several factors have been
associated with disease onset, such as infectious diseases,
autoimmune dysfunction, extreme stress, underlying genetic
predisposition, receptor dysfunction and toxins.
2e6
The
disease lasts more than 6 months but is often lifelong, and is
characterized by severe debilitating fatigue, post-exertional-
malaise, sleep disturbance, cognitive impairment, pains, and
other immunological, neurological and endocrinological
symptoms associated with the affected body
system.
7,8
Dysregulation of the immune system is a key feature
of ME/CFS, as indicated by elevated inflammatory and
immune processes and chronic neuro-
inflammation.
3,7,9,10
Other key features of the disease
include decreased metabolism and impaired mitochondrial
functions.
7
Infectious diseases, particularly viral diseases, are
believed to play important roles in disease onset and/or
shaping the disease course.
11
Symptoms are exacerbated by
triggers, including physical and mental activities or stress,
thus leading patients to experience so-called crashes, from
which recovery is very slow.
12,13
ME/CFS is often overlooked and historically was long
misclassified by physicians as a psychosomatic or psycho-
logical disease.
14
Consequently, patients were not provided
with adequate care, help or support.
15
Despite the large
existing body of scientific evidence on the physical
pathologies of ME/CFS, many health care workers still
lack knowledge or the disease, and most still believe in a
psychological underlying cause, as indicated by a recent
audit performed in hospitals in the UK (Hng et al., 2019).
In the US, more than 80% and 90% of adult and child
patients, respectively, have been estimated to remain
undiagnosed.
16,17
Generally, patients report poor
satisfaction with provided medical care.
18,19
Several factors
and barriers are regularly associated with poor health care
provision for ME/CFS. First, few physicians are
knowledgeable regarding the disease.
20,21
Timbol and
Baraniuk
22
have reported that patients with ME/CFS
admitted to the emergency department in the US for
predominantly cardiovascular problems (e.g., orthostatic
intolerance) have indicated that physicians attributed their
symptoms to stress, anxiety or psychological issues, and
had poor to no knowledge of ME/CFS. Patients must
travel long distances to find specialists
19,23
and usually
attend several appointments before a diagnosis is
made.
20,21
Moreover, financial barriers exacerbate the lack
of access to health care provision.
19,23,24
To our knowledge, Switzerland currently has no scientific
data on ME/CFS in its population. A meta-analysis by Lim
et al.
25
has estimated a pooled prevalence of ME/CFS of
0.4%, which would translate to at least 34,000 people with
ME/CFS in Switzerland, which is comparable to the
number of people with other recognized diseases, such as
multiple sclerosis.
26
In light of the globally poor disease
knowledge among medical professionals, we asked whether
the population with ME/CFS in Switzerland is receiving
adequate health care. To answer this question, we
conducted a preliminary epidemiological survey among
patients with ME/CFS. Herein, we present the health care
provision to patients with ME/CFS, on the basis of
quantitative and qualitative data.
Materials and Methods
Study design and participants
This study was part of a larger cross-sectional study
performed between June and September of 2021 in
Switzerland, including 169 patients with ME/CFS who were
18 years of age or older, who were recruited through the
largest Swiss ME/CFS association (Tschopp et al., submit-
ted). Purposive sampling was used. All members of the na-
tional Swiss ME/CFS association were informed of the study
(e.g., through mailing lists, newsletters, websites and direct
information provided during association meetings). Detailed
information on the study, the questionnaire and the consent
form was sent individually by mail to all people willing to
participate in the study. Written informed consent was
requested from all participants. Completed questionnaires
and consent forms were returned with a pre-stamped return
envelope.
Questionnaire survey
A paper questionnaire survey was self-administered by
participants, because of the ongoing COVID-19 pandemic.
R. Tschopp et al.2
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
Respondents were able to answer questions at their own
pace, given that responding to the questionnaire might
potentially have been exhausting.
Each questionnaire was coded with a unique numerical
ID number. The questionnaire was prepared in German and
French, and was pre-tested with four patients with ME/CFS
who did not participate in the survey, to ensure that the
questions were well designed and well understood. Questions
in the overall questionnaire included closed and open ques-
tions on the following topics: general demography, disease
history, therapies, socio-economic impact of the disease,
coping mechanisms and ME/CFS during the COVID-19
pandemic. Participants were invited to provide in depth,
detailed or additional information about their disease that
was not captured in the questionnaire.
Data management and statistical analysis
Questionnaire data were entered into Microsoft Access
and analyzed in STATA software version 16.1 (StataCorp
LLC, USA). Descriptive statistical analysis was used to
analyze the study population data and perform group com-
parisons. A p-value <0.05 was considered statistically sig-
nificant. Additional qualitative data collected in the
questionnaire as open-ended questions were entered into
Microsoft Excel and analyzed descriptively, and are reported
as illustrative quotations. Qualitative data from the open-
section were analyzed thematically.
Results
ME/CFS diagnosis
The mean age at diagnosis was 38.8 years (95% CI: 36.9e
40.7; SE ¼0.95). Half the patients were diagnosed between
the ages of 25 and 44 years (51.6%). None of the young
children (6e12 years) were diagnosed while being in their age
category, and only one-third (N ¼8/24; 33.3%) of all chil-
dren and youths with ME/CFS were diagnosed before their
18th birthday (see Table 1).
The mean time from disease onset to final ME/CFS
diagnosis by physicians was 6.7 years (95% CI: 5.5e7.9;
SE ¼0.60).
General practitioners (GPs) and specialists were both
involved in diagnosis (often in combination). Among the
138 patients diagnosed by specialized physicians, the
following top three medical specialties were described:
physicians in clinics specializing in general medicine
(N ¼47; 34%), psychiatrists (N ¼45; 32.6%) and neurol-
ogists (N ¼35; 25.4%). Other specialties described were
internists (N ¼19; 13.8%), physicians in psychosomatic
medicine (N ¼16; 11.6%), psychologists (N ¼15; 10.9%),
immunologists (N ¼14; 10.1%), cardiologists (N ¼5;
3.6%), pediatricians (N ¼2; 1.4%), physicians in tropical
medicine (N ¼1; 0.7%) and others (N ¼22; 15.9%). No
statistical differences were observed among patient genders
or the types of specialists providing the diagnosis. Twenty-
one patients (13.5%) sought treatment abroad (Germany,
the Netherlands, United Kingdom, Austria, South Africa
or USA) after no physician in Switzerland was able to
provide a diagnosis. Therefore, these patients received an
ME/CFS diagnosis from clinics and/or health specialists
abroad.
Before receiving their ME/CFS diagnosis, patients
visited an average of 11.1 physicians (95% CI: 9.4e12.9;
SE ¼0.86) and received a mean of 2.6 other diagnoses (95%
CI: 2.1e3.1), primarily mental health conditions (e.g.,
depression or psychosomatic disease), burn-out or neuras-
thenia. A total of 90.5% of patients were told at least once
before their final ME/CFS diagnosis that their symptoms
were psychosomatic.
A total of 115 patients described how they felt when they
received their ME/CFS diagnosis. Most of them experienced
a sense of relief in finally knowing their diagnosis (N ¼84;
73%), whereas 24 (20.9%) had negative feelings of sadness,
hopelessness or anxiety because of the poor prognosis, and a
loss of hope for healing, given the lack of available therapies
and support. The diagnosis of ME/CFS led some patients to
have less stress and anxiety (N ¼3); to experience a feeling of
finally being taken seriously (N ¼2); and to stop fighting the
symptoms, and learn to accept and cope with them (N ¼4).
Furthermore, the diagnosis enabled patients to focus on
healing, to adjust to a new lifestyle (N ¼1) and to be able to
explain their condition to others. After having a name for the
disease, patients were able to research the disease on the
internet and in books.
Patients’ feelings toward provided medical care
Most patients found physicians understanding and sup-
portive (N ¼112; 66.3%), whereas 106 and 63 patients stated
that physicians were arrogant and disparaging, respectively.
Sixty-five described “other” behaviors, such as physicians
being helpless and overwhelmed (N ¼12), not believing
patients (N ¼4), having no knowledge of the disease (N ¼8),
being prejudiced (N ¼1), being annoyed with patients
(N ¼3), showing no interest (N ¼2), humiliating patients
(N ¼1) and categorizing (N ¼1).
During the entire disease period, including pre-diagnosis,
patients left medical appointments with negative feelings
three times more often than with positive ones (e.g., feeling
happy, hopeful or taken seriously). Negative feelings were
reported by 113 patients who said that they were often not
taken seriously, 92 who felt hopeless, 86 who felt desperate,
60 who felt humiliated and 59 who felt ignored.
Of 168 patients, only two described the medical service
regarding ME/CFS as good, whereas 38 (22.6%) and 129
(76.8%) considered it bad and very bad, respectively. Only
16% (N ¼27) of respondents thought that physicians had
sufficient knowledge regarding ME/CFS. Table 2 highlights
quotations from participants regarding their feelings
toward the provided health care.
Table 1: Comparison of age groups at ME/CFS onset and at
diagnosis (N [155).
Age category ME/CFS onset ME/CFS diagnosis
6e12 years 5 (3.2) 0 (0.0)
13e18 years 19 (12.3) 8 (5.2)
19e24 years 21 (13.6) 12 (7.7)
25e44 years 89 (57.8) 80 (51.6)
45e64 years 19 (12.3) 53 (34.2)
65 years 2 (1.3) 2 (1.3)
Patients with ME/CFS in Switzerland 3
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
Table 2: Illustrative quotations from qualitative data collected from participants regarding their diagnosis, and their feelings toward the
provided medical care and prescribed therapies.
Disease diagnostic Patient’s feelings toward provided
medical care
Reported therapies
“The psychiatrist was the only one who
knew ME/CFS.” (Female, 55, BE)
“I gave up going to doctors. I am so
angry and frustrated. They have to learn
to see patients as collaborators and not
enemies.” (Female, 47, ZH)
“Before my disease, I have always been a
big sportsman, so GET was attractive to
me when prescribed. However, it
worsened all my symptoms.” (Male, 53,
BE)
“All doctors said I had depression, but
the psychiatrist said I had no
depression and that it was somatic.”
(Female, 41, GR)
“If I had money, I would go abroad to a
good doctor.” (Female, 59, LU)
“One of the first diagnoses was burn-out;
doctors asked me then to do a lot of
sports, which worsened my symptoms
terribly. Then around ten doctors said it
was psychosomatic, and I was sent to the
psychiatrist, who said I was mentally
healthy, and it was somatic, and I was
sick. Then I was finally diagnosed with
ME/CFS by a CFS specialist.” (Male,
38, ZH)
“I gave up going to physicians in
Switzerland, I went to London, where
I was diagnosed with ME/CFS. Back
in Switzerland, I shared the report with
my doctor, who said that CFS did not
exist.” (Female, 51, AG)
“Being taken seriously by a doctor
helped me to carry the burden caused by
the disease.” (Male, 38, BE)
“Previously, I was mis-diagnosed as
having psychosomatic issues and sent to
a rehabilitation clinic. I had to do a lot of
group activities to foster communication,
as well as aggressive massages and lots of
fitness. I had to stop, as I was getting
sicker and sicker.” (Male, 51, VS)
“It was a relief to know what is wrong
with me after 31 years, and understand
my symptoms.” (Female, 46, LU).
“It is important for GPs to know the
disease, because private clinics are too
expensive for follow-ups.” (Female, 46,
ZH)
“I was sent to a psychosomatic
rehabilitation clinic. They made me do
plenty of sports, which ultimately
harmed me. I went into a three month
crash afterwards. Nobody knew about
ME/CFS there.” (Male, 44, AG)
“I was relieved to receive a diagnosis;
after 10 years of being told it was all in
my head, I really started believing I
was mad.” (Female, 33, ZH)
“The specialist who diagnosed me is too
far away; it is impossible to do follow-
ups.” (Male, 69, AG)
“I went to a psychosomatic
rehabilitation clinic, where I had to do a
lot of sports. I left the clinic in a
wheelchair. I went into a 1.5 month
severe crash afterwards with fever and
worsening of all symptoms; these clinics
have to understand ME/CFS.” (female,
41, ZH)
“I am too weak to go the doctor and can
often only do telephone appointments.”
(Female, 54, AG)
“Many wrong diagnoses and therapies
(anti-depressives and physical activities)
worsened my condition over the years.”
(Female, 57, SG)
“There is no support; if my disease gets
worse, I will register with EXIT.
a
”
(Female, 46, LU)
“After the diagnosis of ME/CFS, I
stopped the anti-depressants, and I feel
so much better now.” (Female, 46, ZH)
“Before my ME/CFS diagnosis, I
received anti-depressants over many
years. All my symptoms worsened.”
(Male, 53, ZH)
“My worst experience was a doctor who
forced me to do a lot of physical
activities, which then worsened my
symptoms a lot.” (Male, 38, BE).
“The wrong therapies I received, that led
to severe worsening of the disease, make
me now fearful to go to new doctors.”
(Female, 31, AG)
a
EXIT: Swiss Society dedicated to human self-determination, including physician-assisted suicide.
R. Tschopp et al.4
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
Reported therapies
Before diagnosis, the most frequently prescribed inter-
vention by medical professionals (N ¼93) was treatment for
depression (N ¼93), regardless of patient gender (no sta-
tistical difference). In contrast, the top recommendations
from physicians who had properly diagnosed patients with
ME/CFS were primarily associated with energy conservation
strategies (N ¼78). The following strategies were also rec-
ommended by physicians (before and after diagnosis):
nutrition (N ¼48), medication to alleviate some of the
symptoms (N ¼39), pain management (N ¼34) and a focus
on mental health/wellness (N ¼27). Patients, in contrast,
prioritized energy conservation techniques (N ¼301), a focus
Figure 1: Tree chart comparing recommendations given by physicians (A) versus strategies that patients tried by themselves after diag-
nosis (open question) (B).
Table 3: Therapies tried by participants.
Strategy Number (%)
Pacing 150 (89.8)
Supplements 148 (88.1)
Alternative and complementary medicine 143 (85.1)
Pharmacological symptom therapy 130 (76.9)
Physiotherapy 109 (64.9)
Graded Exercise Therapy (GET) 98 (58.3)
Cognitive Behavioral Therapy (CBT) 85 (50.6)
Microbiotics/probiotics/stool transplantation 85 (50.6)
CBD oil 69 (41.1)
Others 40 (23.8)
Mitochondrial therapy 35 (20.8)
Patients with ME/CFS in Switzerland 5
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
on mental health/wellbeing (N ¼111), nutrition (N ¼96)
and pain management (N ¼50).
Figure 1 shows a tree chart with the recommendations
made by physicians during the entire duration of illness
(pre and post diagnosis) and compares the strategies used
by patients after diagnosis with ME/CFS.
We investigated the efficiency of the reported treatment
strategies. Table 3 shows the therapies tried by all
participants at least once during the course of illness. The
number of therapies tried by our patients with ME/CFS
ranged from 1 to 11 (mean: 6.5; 95% CI: 6.2e6.9; SD: 2.2),
and 82% of the participants reported trying multiple
therapies.
Figure 2 shows the average efficiency of each strategy,
which was assigned a score with the following scale:
5¼helped a lot, 4 ¼helped moderately, 3 ¼helped a bit,
2¼did not help and 1 ¼was harmful. Only pacing,
medication to alleviate symptoms, alternative medicine and
dietary supplements helped, on average, whereas GET was
reported to have been harmful.
Participants reflected, in their own words, on the therapies
that they received (Table 2).
Discussion
Although ME/CFS is diagnosed by exclusion of a broad
spectrum of possible etiologies and follows international
diagnostic guidelines, the lack for improved acknowledge-
ment and expertise in ME/CFS among physicians in
Switzerland is highlighted by the latency between the onset of
disease and establishment of a diagnosis (approximately 7
years). Given that more than 80% of patients remain undi-
agnosed,
27e29
this delay is likely to be an under-estimation.
Our results suggest that children are at particular risk of
remaining undiagnosed and consequently are exposed to mis-
management. Pediatric ME/CFS, which has an estimated
prevalence between 0.1% and 0.5% (Rowe et al., 2017) has
long lasting effects on children, e.g., high dropout rates in
school, limited access to education and entry into adulthood
with chronic disease. The peak age of disease onset in pedi-
atric ME/CFS is between 11 and 19 years.
30e32
Hence,
pediatricians’ awareness of the negative effects of this
disease must be addressed, and referral strategies with
sensitization for early symptoms must be established.
In our study, only two pediatricians among the 24 pedi-
atric patients provided an ME/CFS diagnosis. Overall, one-
third of the diagnoses were made by general medicine phy-
sicians or psychiatrists, and one-quarter were made by neu-
rologists. Only 10% of respondents were diagnosed by an
immunologist, although the disease is known to have major
immunological components.
3,10,33
ME/CFS appears to
remain poorly recognized among many medical experts and
specialists in Switzerland; thus, better awareness among
health professionals is urgently warranted. On average,
more than 11 different appointments were required, and
several misdiagnoses were made to establish a conformed
diagnosis of ME/CFSdsubstantially more than previously
reported in studies from other countries. Sunnquist et al.
23
have observed an average of four or more appointments in
the USA until diagnosis, and only 11.5% of the patients
with ME/CFS being treated and managed by adequate
specialists. Before the diagnosis, more than 90% of
enrolled patients in our study were told at least once that
their disease was of psychological nature and received
inadequate management. This result is in line with findings
from a recent audit performed in the UK showing that
91% of the health care providers considered ME/CFS at
least partly psychological and demonstrated poor overall
Figure 2: Average efficiency of prescribed treatments.
R. Tschopp et al.6
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
disease knowledge.
34
Swiss patients with ME/CFS have
therefore developed mistrust of, and resentment toward,
psychologists/psychiatrists. Interestingly, however, one-
third of the ME/CFS diagnoses were actually provided by
psychiatrists who rejected the psychological etiology under-
lying the specialists’ referrals and instead identified a somatic
health problem.
Health service provision was considered poor by patients:
only two of 168 patients stated that they felt adequately
managed, whereas 16% described that their physician dis-
played knowledge regarding ME/CFS. Overall, during their
entire time of living with the disease (pre and post diagnosis),
patients experienced negative feelings (desperation, not being
taken seriously, and feeling hopeless, humiliated or ignored)
three times more often than positive feelings after their
medical appointments. The poor diagnosis success rate in
Switzerland discouraged 13.5% of the study population from
traveling abroad and seeking diagnosis elsewhere.
Others sought online medical support, such as therapy
guidance with ME/CFS experts abroad, in countries where
ME/CFS is recognized and better known among physicians.
Patients with ME/CFS with high dissatisfaction with the
provided medical care have also been reported from Ger-
many, the UK and the US.
19,21e23
Although experts in ME/
CFS exist, they are few. Most physicians and health care
providers in Switzerland have limited knowledge of the
disease, as also reported in other studies.
21,22,34
Some
additional described barriers to heath care in our study,
were the lack of house visits by GPs for house or bed-
bound patients; the remoteness of specialized physicians,
thereby making access difficult for patients with ME/CFS;
and the difficulty in receiving follow-up care after diagnosis
because of the high cost of private clinics. Poor overall dis-
ease knowledge was also reflected in the therapies recom-
mended by physicians to patients. Before diagnosis, 93
patients received recommendations for treatment for
depression (e.g., use of anti-depressants or psychiatrist sup-
port), which patients perceived as harmful. Post-exertional
malaise and the pathology of ME/CFS, involving down-
regulation of the hypothalamicepituitaryeadrenal axis and
impairment of the central and autonomous system, differ
from pathologies causing depression
35
; Morris et al., 2007).
Of particular concern, psychotropic medications prescribed
for mood disorders and depression have shown detrimental
effects on mitochondrial functions through, e.g., decreased
carnitine availability, and impaired respiratory chain and
ATP production.
36e38
Mitochondrial impairment is a key
feature among patients with ME/CFS. Such medications
can therefore aggravate pre-existing impairments and
worsen symptoms. Patients were encouraged to increase their
physical activity or were sent to rehabilitation clinics in
which promoting physical activity was among the core
treatments. Those patients reported severe worsening of their
illness, sometimes to dramatic levels (e.g., months-long
crashes or being wheelchair bound). Of all types of therapy
attempted by patients, GET was the only one reported to
have harmful effects. Compelling scientific evidence has now
indicated the pathways and pathological mechanisms un-
derlying muscular fatigue and pains, as well as the neuro-
immunological impairment triggered by physical activity;
these findings support the counterproductive and harmful
effects of GET in patients with ME/CFS.
15,39,40
Until
dissemination of the available robust evidence indicating
that GET is detrimental and should no longer be used in
treating patients with ME/CFS, the misconception of
physical activity being beneficial in ME/CFS will remain
anchored in the psychosomatic dogma widely held by
health care providers.
41,42
After being properly diagnosed with ME/CFS, patients
received recommendations by their physicians to follow “en-
ergy-saving strategies.” Our study also indicated that pacing
was perceived by the respondents to be the most effective
strategy for alleviating some of the symptoms, beyond medi-
cations, complementary alternative medicine and diet. Nutri-
tional supplements in ME/CFS have shown little evidence of
benefit in the scientific literature,
43
although the current
evidence is insufficient to draw conclusions. The study
participants’ views on the efficacy of supplements were also
too heterogeneous to draw a conclusion; therefore, more
research is clearly warranted in this field. No approved
medical treatments are currently available for ME/CFS, and
no cure exists.
6
Our study showed that patients
independently tried several approaches to improve their
symptoms, with or without support from their physicians.
Supplements were commonly used (e.g., NADH, coenzyme,
vitamins and minerals) as well as approaches focusing on
pain relief (medication and alternative/complementary
medicine) and energy management (e.g., pacing and daily/
weekly energy management plans). Antiviral agents were
recommended in two patients, and one patient participated
in a clinical trial of an experimental drug. Antiviral agents
such as valaciclovir and valganciclovir have been described
to elicit some improvements in a small number of patients, in
whom EBV or HHP 6 were suspected as possible disease
triggers.
44e46
Therapeutic research and trials have focused
mainly on targeting immune modulation through the use of
antiviral agents, immunosuppressants, immunostimulation,
and mitochondrial support.
9,47e52
To date, rintatolimod, a
drug developed for cancer and aggressive viral infections,
which increases natural killer cell function and acts as a
TLR3 agonist, is the only drug that has been assessed
specifically for ME/CFS; however, it has not yet been
approved, except in Argentina.
53
The limitations of this study were those inherent to self-
administered questionnaire studies, including possible recall
bias. This study indicated that patients with ME/CFS in
Switzerland experience notable challenges in receiving
prompt diagnosis, adequate health care and support. The
disease may remain undiagnosed or mis-diagnosed for an
often unacceptable latency, which is associated with incor-
rect and sometimes harmful treatments. Swiss patients re-
ported high dissatisfaction with existing health care. The
study highlighted the lack of disease knowledge among
physicians. Because no diagnostic laboratory tests are
currently available, and no cure currently exists, improving
awareness and knowledge of ME/CFS among physicians and
health care providers is of paramount importance. In
Switzerland, an urgent need exists to improve the medical
care of patients with ME/CFS, and achieve better under-
standing and acceptance of the disease, ideally through
Patients with ME/CFS in Switzerland 7
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
stronger early integration into the curriculum of human
medicine training and continuing education.
If an adequate diagnosis can be made earlier in the disease
course, (i) a more reliable prospective evidence base could be
created to shape guidelines, inform healthcare policy and
provide a foundation for greater investment in research, and
(ii) adequate supportive treatment and correct management
could be initiated in a higher proportion of patients with
ME/CFS.
Source of funding
This research did not receive any specific grant from
funding agencies in the public, commercial or not-for-profit
sectors.
Conflict of interest
The authors have no conflict of interest to declare.
Ethical approval
This research received approval from the Ethics Com-
mittee of Northwestern and Central Switzerland (EKNZ,
Switzerland), and copies were sent to all other relevant ethics
committees in Switzerland (Basec nr. 2021-01098; July 2021).
Author’s contributions
RT conceived and designed the study, and conducted the
research. RT and DP provided the research material, and
collected and organized the data. RT, RK, PR and DP
analyzed and interpreted the data. RT, RK, PR and DP
wrote the initial and final drafts of the article. All authors
have critically reviewed and approved the final draft, and are
responsible for the content and similarity index of the
manuscript.
Acknowledgement
We thank the Swiss ME/CFS association for collabo-
rating on this study and providing logistic support. We are
greatly thankful to all participants with ME/CFS and their
families for their time and effort, which made this study
possible. We also thank Sophie Joy Mosko for help in editing
the manuscript. This study was funded by Swiss TPH.
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How to cite this article: Tschopp R, Ko
¨nig RS, Rejmer P,
Paris DH. Health system support among patients with
ME/CFS in Switzerland. J Taibah Univ Med Sc
xxxx;xxx(xxx):xxx.
Patients with ME/CFS in Switzerland 9
Please cite this article as: Tschopp R et al., Health system support among patients with ME/CFS in Switzerland, Journal of Taibah University Medical
Sciences, https://doi.org/10.1016/j.jtumed.2022.12.019
