When a 17-Year-Old Girl Is Diagnosed with Myalgic Encephalomyelitis: A Case Study from the Swedish Health Care System—A Parent Perspective

Abstract

This case study presents different strategies that were explored by the patient’s mother when her 17-year- old daughter was diagnosed with ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome (CFS). ME is not widely recognized in the Global as well as the Swedish population at large, and within healthcare, there are no standardized recommended treatments, partly due to the lack of published evidence-based studies. This case study aims to provide insights into how the Swedish healthcare system works, how different clinics and hospitals within it operate and interconnect; and how these contribute to health outcomes after 15 months of treatment.

Full text

Case Reports in Clinical Medicine, 2022, 11, 280-296
https://www.scirp.org/journal/crcm
ISSN Online: 2325-7083
ISSN Print: 2325-7075
DOI:
10.4236/crcm.2022.118041 Aug. 4, 2022 280 Case Reports in Clinical Medicine
When a 17-Year-Old Girl Is Diagnosed with
Myalgic Encephalomyelitis: A Case Study from
the Swedish Health Care System—A Parent
Perspective
Eva Bojner Horwitz1,2,3, Jonas Axelsson4, Olli Polo5, Leif Widebert6, Töres Theorell1,7,
Anabelle Paulino8, David Ullman9, Jonas Bergquist10,11
1Department of Music, Pedagogy and Society, Royal College of Music, Stockholm, Sweden
2Department of Clinical Neuroscience, Karolinska Institutet, Solna, Sweden
3Center for Social Sustainability, CSS, Karolinska Institutet, Solna, Sweden
4Amelie Clinic and Karolinska Institutet, Solna, Sweden
5ME-Center, Bragée Clinics, Stockholm, Sweden
6Hälsosjälen, Mölndal, Göteborg, Sweden
7Stress Research Institute, Stockholm University, Stockholm, Sweden
8Karolinska Institutet, Solna, Sweden
9Sophiahemmet, Barnsjukhuset Martina, Sweden
10Analytical Chemistry and Neurochemistry, Department of Chemistry—BMC, Uppsala University, Uppsala, Sweden
11The ME/CFS Collaborative Research Centre at Uppsala University, Uppsala, Sweden
Abstract
This case study presents different strategies that were explored by the pa-
tient’s mother (who is a researcher in music and medicine) when her 17-year-
old daughter was diagnosed with ME (Myalgic Encephalomyelitis), also known
as Chronic Fatigue Syndrome (CFS). ME is not widely recognized in the Global
as well as the Swedish population at large, and within healthcare,
there are no
standardize
d recommended treatments, partly due to the lack of published
evidence-based studies. This case study aim
s to provide insights into how the
Swedish healthcare system works, how different clinics and hos
pitals within it
operate and interconnect; and how the
se contribute to health outcomes after
15 months of treatment.
Keywords
Case Study, Myalgic Encephalomyelitis, Parent Perspective, Swedish Health
Care
How to cite this paper:
Horwitz, E.B.,
Axelsson, J
., Polo, O., Widebert, L., Theo-
rell, T
., Paulino, A., Ullman, D. and Berg-
quist
, J. (2022) When a 17-Year-
Old Girl Is
Diagnosed with Myalgic Encephalomyelitis:
A Case Study from the Swedish Health Care
System
—A Parent Perspective.
Case Re
ports
in Clinical Medicine
,
11
, 280-296.
https://doi.org/10.4236/crcm.2022.118041
Received:
June 29, 2022
Accepted:
August 1, 2022
Published:
August 4, 2022
Copyright © 20
22 by author(s) and
Scientific
Research Publishing Inc.
This work is licensed under the Creative
Commons Attribution International
License (CC BY
4.0).
http://creativecommons.org/licenses/by/4.0/
Open Access

E. B. Horwitz et al.
DOI:
10.4236/crcm.2022.118041 281 Case Reports in Clinical Medicine
1. Introduction
The patient C, currently 18 years old, had been struggling for 2.5 years with in-
fections, throat pain, exhaustion, and PEM (post exertion malaise). She had been
taken under the care of lung and respiratory specialists who tried penicillin for
her throat pain, but neither antibiotics, nor pain killers, nor nutrient supple-
ments had helped to resolve her symptoms. During this time, no further investi-
gations had been prescribed for a possible diagnosis of ME. After three years of
struggling with symptoms, anxiety and associated infections, a private clinic in
Stockholm, the Bragée Clinic, diagnosed C with ME according to the Canadian
criteria [1]. Upon further investigation, the same clinic also diagnosed a Postural
Orthostatic Tachykardia Syndrome (POTS) [2], a Chiari malformation [3] in the
left cerebellum tonsil and general hypermobility.
2. What Do We Know about ME/CFS?
It is estimated that 0.1% - 6% of the populations in the Western hemisphere suf-
fer from ME [4]. Women outnumber men by a ratio of 3:1. The age of onset va-
ries between 20 and 40 (investinme.org). First established in 1994, the diagnostic
criteria of ME have become more stringent over time [1] [5] [6] [7]. It can be
challenging to diagnose ME as there are currently no laboratory tests available
for an unequivocal diagnosis [8]. However, the Canadian criteria for diagnosing
ME are widely used as they provide a clear framework [6]. An expert consensus
on the diagnosis, service provision, and care of people with ME/CFS in Europe
was also recently published (European Network on Myalgic Encephalomyeli-
tis/Chronic Fatigue Syndrome [9].
Research on ME has identified abnormalities in the central as well as peri-
pheral nervous system, the immune system, and in the metabolism in patients
with ME/CFS [10]. Several research groups are investigating the link between
different viral infections and the development of ME [11] [12], including the role
that the Epstein-Barr Virus may have, something that has been discussed for a
decade [13]. Recently hypotheses have been offered to explain a possible rela-
tionship between hypermobility and cranio-cervical obstructions frequently ob-
served in ME patients [14], as well as potential mechanistic overlaps between
critical-ill patients and ME [15] [16] [17] [18]. Whilst it clearly affects the brain,
IQ is not reduced in ME patients—patients seem to be able to leverage a larger
portion of the brain to perform the same mental performance as patients who do
not have ME [19]. Also, the absence of depressions is common in ME [9].
In US researchers have been investigating the increase of pro-inflammatory
microglia activity in the CNS of ME patients [20]. In Norway [12], an increase in
autoinflammatory antibodies to beta-adrenergic and muscarinic receptors in the
central nervous system has been demonstrated. This was first shown by [21].
This has also been validated in two Swedish cohorts [22]. In the UK, impaired
transport of calcium between cells has been detected. In this research the trans-
port of calcium and magnesium ions are linked to the body’s temperature regu-

E. B. Horwitz et al.
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10.4236/crcm.2022.118041 282 Case Reports in Clinical Medicine
lation and experience of pain According to Finnish studies there may be a link
between ME and the sympathetic nervous system as well as between connective
tissue and blood circulation [23].
Work by Fluge
et al
. [12], offered ME/CFS patients some hope. Results from
their first study initially showed positive results that ME could be an autoim-
mune disease and therefore be treated accordingly. But in the second study, a
double-blind placebo-controlled Rituximab study, indicated negative results, al-
though a subgroup of patients did respond positively to the treatment [12].
Another hypothesis is that ME is related to a “gut-brain axis model” [11] [24]. If
this is the case dietary interventions could be of importance for ME patients.
American researchers [24] have found an increase in lipopolysaccharide content
(LPS) in the gut in a majority of patients with ME. One theory behind this is that
LPS leaks from the intestinal system to the bloodstream. Another American
study has discovered that the citric acid cycle in the mitochondria is disturbed in
ME patients. This disrupts glucose metabolism; glucose is converted to fatty ac-
ids which are then stored. These theories hypothesize that the mitochondria
have entered a form of “protective” mode that prevents them from producing
energy, which in turn may suggest an opportunity for treatment in somehow
“restarting” the mitochondria. Different studies in England, Switzerland and
Germany are focusing on the function of the microbiome [25]. Patients with ME
seem to have lowered diversity in their bacterial flora and at the same time ele-
vated levels of bacteriophagic viruses that attack bacteria [25]. This strand of re-
search suggests that if there is a disturbed balance between certain types of mi-
cro-organisms, the immune system may start to fight beneficial body bacteria
and cells.
In this patient’s own area, Sweden, there is ongoing ME research as already
mentioned above. Already in 2011, evidence for neuroinflammatory involvement
in ME/CFS patients was presented [26]. Furthermore, one study measured plasma
concentration of several immune parameters in plasma [11]. Another Swedish
line of ME research is Cranio-cervical obstruction [14]. Dr Jonas Bergquist and
collaborators are working with the hypothesis that ME may be triggered by sev-
eral different viruses such as EBV or influenza, and that partly the symptoms in
ME patients could overlap with other post-viral fatigue disorders and critical ill
patients. An elevated level of antibodies to HSP60 (a mitochondrial protein that
could be involved in energy uptake) has been observed in ME patients [11].
Other research on energy metabolism in ME patients suggests the immune sys-
tem changes behavior and attacks the body’s energy uptake and signaling sys-
tems, observations made by Swedish researchers already in 2013 [27]. This hy-
pothesis has recently been followed up by a home-visit study conducted by the
team from the ME/CFS Collaborative Research Centre at Uppsala University
(unpublished data).
From this short overview, one can conclude that the pathogenesis of ME is
very complex, much is known but the full picture is not yet fully understood.

E. B. Horwitz et al.
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10.4236/crcm.2022.118041 283 Case Reports in Clinical Medicine
Unfortunately, there still exist recommendation that ME patients should exer-
cise more in order to boost energy levels. While activity may temporarily im-
prove fatigue, it may also contribute to a post-exertional malaise (PEM) that is
common among ME patients [11]. PEM means that patients’ symptoms follow-
ing physical activity or mental exertion could increase 12 - 48 hours post exercise
and last for days or weeks [28]. Experimental treatments are occurring among
medical specialists. In a clinic in Mölndal, “
Hälsosjälen
(
Health Soul
)” an osteo-
path has been working with a technique known as the “Perrin Technique”; a
craniosacral technique aiming at increased space between the occipital lobe and
the first cervical vertebra. There are ME patients where the foramen magnum is
constricted due to pressure from a “Chiari malformation” or due to neck trauma
[14]. This technique is well-tested in US on many patients with ME [28]. In the
Swedish health care, there is still little consensus on how to treat ME patients.
The Bragée Clinique in Stockholm (a clinic specialized in diagnosis and treat-
ment of ME) recommends treatment with low dose Naltrexone [29], pacing [28],
sodium chloride—intravenous injections or oral treatments [28] and B-12 injec-
tions. Physiotherapy and occupational therapy are also recommended for the
patients to cope with their energy levels (Pacing). These interventions seek to
decrease pain and increase patients’ energy levels to some extent.
Parents of children suffering from symptoms of ME are largely coping on
their own. Although there are healthcare professionals such as MDs who have
specialized in ME work with patients, they simply do not have the time or
knowledge to improve outcomes reliably for their patients. We desperately need
to seek more knowledge of how the patients diagnosed with ME experience the
health care system, in order to improve this. The present case report offers first-
person account of how parents cope with the situation when their child is diag-
nosed with ME, POTS and hypermobility.
3. The Different Health Care Specialists and Their Advice
and Treatments
In the following part, thirteen different specialists’ recommendations to C and
narratives from the parents will be presented chronologically, from April 2021 to
June 2022.
The general practitioner at the hospital
:
April 2021.
The general practitioner wrote a referral to the ME Clinique, presenting the
following symptoms/questions:
“
For
1.5
years
,
C has had the following symptoms
●
recurrent throat infections with severe pain from tonsils
,
pharynx and ears
●
blisters in the mouth
●
feelings of exhaustion after light physical exertion
●
flu-like symptoms and feelings of dependence come in flares
●
intermittent pain in neck
,
jaw and knees

E. B. Horwitz et al.
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10.4236/crcm.2022.118041 284 Case Reports in Clinical Medicine
●
headache
●
muscle tension of shoulders/neck
●
hypersensitivity to sound
●
cold hands
●
feeling of fever without fever
●
slight dizziness when getting up from sitting and from lying down
●
a sensation of superficial sleep
●
fatigue and tiredness after cognitive and concentration-demanding
tasks in school
Symptoms in the last
3 - 6
months
●
brain fog
●
tachycardia when ascending
●
superficial breathing - costs of energy to breathe deeply
●
concentration difficulties
●
difficult to find words
●
extreme feeling of exhaustion after physical exertion
”
The ME specialist
May 2021. Diagnosed ME, POTS and general hypermobility
June 2021. Recommended Low Dose Nalprexone (LDN), extra NaCl solution,
and to drink as much as 2 liters water per day.
November 2021: Commenced B-12 injections and peroral Folic acid. Recom-
mended for IVIG (
intravenous gamma-globulin injection
) treatment, but after
three different referrals had failed it became obvious that no physician in Swe-
den was willing to take responsibility for this treatment.
August 2021: Antibodies test in Germany by CellTrend
April 2022: C started with adrenalin injections recommended from the ME
specialist to obtain a better perceived sleep pattern. C has received in total five
adrenalin injections and they seem to have resulted in improved sleep.
“
After several months of C
’
s symptoms
,
and several diagnostic assessments
including a Tilt test and MRI scan
,
the ME doctor diagnosed C with the condi-
tion
.
The diagnosis came as a shock both for C and us
.
We had begun to under-
stand that the symptoms C had been feeling could be related to neck pressure
.
The ME doctor said the pressure of the left cerebellum on the
1
st vertebra may
not be relevant for the ME diagnosis
,
but that a neurologist would need to verify
this
”.
The Neurologist
June 2021.
A Chiari with 7 mm pressure towards the foramen magnum was found on the
left cerebellum toncil. Two neurologists at Karolinska Hospital analyzed the MR
finding and provided their consensus that the Chiari finding had no clinical re-
levance for the ME-symptoms.
“
The neurologists were telling us that they could take part of C
’
s first vertebra
away and fixate the cerebellum
,
but we did not want to run the risk of that oper-
ation
.
We as parents recognized the importance of trusting the neurologists
’

E. B. Horwitz et al.
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10.4236/crcm.2022.118041 285 Case Reports in Clinical Medicine
consensus
.
At the same time
,
we were also skeptical at what the neurologists
were telling her
,
and as parents
,
we did not want to go through an operation on
her brain
”.
The occupational therapist
June 2021.
Information about PEM and base line
Pacing instructions
“
We found the tools and techniques from the occupational therapist
—
like a
lamp that served to visualize energy depletion as it occurred
—
very practical and
helpful
,
and they have been meaningful in C
’
s treatment
.
We have learnt how to
read her body signals
,
and if one learns to stop right before she gets over-
whelmed
,
her life is more bearable
.
Even seemingly simple activities can deplete
her energy
,
so she needs to prioritize energy to perform basic functions
.
We have
come to understand this energy exchange is like a
“
bank account
”—
you cannot
use more energy
/
money in your account than what you have
(
and you cannot
take loans on energy
)”
The osteopath
August 2021.
Mechanical work with osteopathy and the Perrin technique
Catherine visited an osteopath—specifically a doctor with 30 years of expe-
rience in psychosomatic medicine as well as ME—in Gothenburg once a week
for 8 weeks in autumn of 2021. The osteopath described the etiology as”
cranial
dysfunction with slight load on the lymphatic system
(
specifically in the left side
of the body
),
slight head trauma from Catherine having fallen on ice
,
and static
braces
”. The osteopath also mentioned Catherine’s previous bird flu infection as
maybe contributing towards ME.
The findings from the osteopath were suboccipital inhibition of movement,
inhibition in thoracic spine, findings of inhibited movement in the jaw (in terms
of muscle movement), and overall hypomobility.
At these baseline findings in September 2021, Catherine rated her pain about
6/10; her vitality 4/10; and self-rated health overall was 3/10. Two months later
in November 2021, her vitality was rated the same, her self-rated health 4/10,
and she was in greater pain in the throat area. Catherine described herself as not
feeling free, and somewhat locked.
The recommended treatments following this appointment included relaxation
movements and micro tractions in the upper part of the spinal cord; C0 - C1. In
response to the treatments, increased movement in C1 was achieved, and there
was more color to Catherine’s face. The doctor also recommended taking Cathe-
rine’s dental braces off, as they were static and counterproductive in relation to
the asymmetric part of cerebellum. The braces completely locked up the interre-
lated movement of the cranial bones and by that caused a decreased flow in the
cerebrospinal fluid. Catherine has since then felt at ease without them.
After
the
MR
,
in
March
2022,
there
is
a
finding
that
the
Chiari
malformation
is
not
as
obvious
as
before
.
Probably
,
we
can
trace
this
finding
to
the
osteopath
’
s

E. B. Horwitz et al.
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10.4236/crcm.2022.118041 286 Case Reports in Clinical Medicine
efforts
with
micro
tractions
in
the
C0 - C1
during
autumn
2021.
There
is
still
a
question
if
the
MR
signals
part
of
an
EDS
,
Ehlers
Danlos
Syndrome
(
which
is
a
common
finding
in
ME
patients
).
After
the
experts
analyses
of
C
’
s
MR
dated
April
2022,
there
were no signs
of
the
Chiari
and
no
detectable
vascular
changes
related
to
EDS
.
C
’
s
narrative
regarding
this
section
of
treatment
:
“
I
would
really
like
to
be
in
school
and
continue
with
my
courses
.
The
osteo-
path
treatment
has
made
me
believe
more
that
I
can
come
back
to
school
.
The
osteopath
has
given
me
more
self-respect
,
and
I
believe
that
I
,
within
a
couple
of
months
,
can
start
to
enjoy
life
again
.
He
has
given
me
more
patience
.
I
believe
that
I
need
more
of
this
during
a
short
period
of
time
ahead
.”
The
ACT-therapist
August 2021-May 2022.
Working with acceptance
How
do
you
accept
something
so
frustrating
to
live
with
?
Sure
,
there
are
therapies
that
can
help
you
handle
and
cope
with
your
thoughts
and
emotions
—
the
key
here
is
that
you
have
your
thoughts
,
but
you
aren
’
t
your
thoughts
.
About
every
second
week
,
the
meeting
with
an
acceptance
commitment
the-
rapist
(
ACT
)
has
helped
C
to
cope
with
her
ME
diagnosis
and
symptoms
.
Through
this
,
she
was
encouraged
to
share
her
thoughts
and
feelings
with
a
person
out-
side
the
family
.
These
meetings
have
been
conducted
digitally
1-
on
-1,
and
they
have
met
for
about
10
times
.
These
sessions
have
been
very
meaningful
in
the
sense
that
C
has
understood
that
she
is
not
alone
in
her
suffering
.
It
has
been
a
relief
for
C
to
hear
that
other
patients
have
been
able
to
work
with
tools
to
handle
a
situation
wherein
one
needs
to
put
one
’
s
whole
life
on
hold
.
With
mindfulness
and
meditation
tech-
niques
,
she
is
able
to
accept
that
she
has
hard
times
during
the
day
;
C
has
been
able
to
use
these
techniques
between
ACT
meetings
.
In
the
most
recent
session
,
C
told
the
therapist
that
she
doesn
’
t
need
the
therapist
anymore
as
she
now
feels
able
to
take
care
of
her
own
situation
.
This
has
been
a
positive
thing
to
observe
from
the
sidelines
as
a
parent
.
C
has
become
much
wiser
this
year
,
and
she
now
seems
to
have
a
very
mature
perspec-
tive
compared
to
when
she
started
school
.
This
has
been
a
silver
lining
of
every-
thing
that
has
happened
.
In
a
way
,
it
is
an
existential
“
win
”,
as
C
has
gained
deeper
wisdom
about
life
because
of
all
the
things
that
have
happened
.
The
Immunologist
August 2021, December 2021, April 2022.
Working with antiviral treatments.
Long-standing clinical experience links viral infections such as infectious
mononucleosis to the development of long-term illness. This experience is in-
creasingly supported by scientific evidence linking infection with Epstein-Barr
virus (EBV; the causal virus behind infectious mononucleosis) with immune
dysfunction [30] [31] [32], neurological diseases [33] [34], as well as ME/CFS

E. B. Horwitz et al.
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[32].
As an immunologist at the Karolinska University Hospital, Dr. Axelsson
works mainly with bone-marrow transplantations and cell therapies. However,
the relatively recent adoption of autologous hematopoietic stem cell transplanta-
tion as a treatment for multiple sclerosis (MS) has awakened an interest in ME as
another putatively virus-linked disease that involves the immune system. With
limited options to see such patients in his role at the hospital, Dr. Axelsson in
2017 co-founded the Amelie Clinic together with the family of a patient. The
clinic is a non-profit organization, organizationally and physically separate from
the Karolinska, dedicated to the treatment of, research on and education about
para-viral diseases, including ME, long-Covid [35], and chronic Lyme disease
[36].
Based on a thorough assessment of immune parameters a diagnosis of Eps-
tein-Barr linked immune exhaustion was made. Tests included serologic reactiv-
ity to common viral proteins, nucleotide analyses, immune cell populations by
FACS, and T-cell proliferation assays [37]. Treatment was initiated with valgan-
ciclovir (450 mg, bid), an antiviral treatment, and metformin (500 mg, bid), a
diabetes medication with immunomodulatory actions [38]. Due to eosinophilia
and an excessive mast-cell degranulation response, sodium cromoglycate in an
enteric formulation was also prescribed to be taken as needed.
The
Cardiologist
October 2021. Recommendation to take Inderal.
“
The
primary
care
physician
had
understood
that
C
’
s
POTS
warranted
a
visit
to
a
cardiologist
,
who
suggested
a
beta
blocker
(
Inderal
40
mg
).
This
was
in
view
to
improving
C
’
s
ability
to
move
around
the
house
,
from
bathroom
to
room
and
so
on
.
In
our
eyes
,
this
was
a
short-term
solution
,
and
we
were
wondering
how
long
someone
could
take
this
medication
without
long-term
damage
.
We
also
wondered
why
the
ME
doctor
and
cardiologist
had
not
been
able
to
work
to-
gether
from
the
beginning
—
at
this
point
,
C
had
already
spent
5
months
with
hyperactivity
in
the
heart
.
Although
we
were
happy
that
the
treatment
had
bene-
ficial
effects
(
reduced
tendency
to
tachycardia
),
we
now
wondered
what
it
must
be
like
for
families
who
may
not
be
able
to
bring
a
cardiologist
in
to
the
consid-
erations
for
treatment
.
There
has
been
no
follow-up
physically
with
the
cardiol-
ogist
since
then
,
and
we
do
not
know
why
.
We
wish
to
contact
him
”.
Funmed-Diet
November 2021.
“
The
doctor
presented
us
with
25
pages
of
analysis
.
It
was
a
chaotic
presenta-
tion
of
two
and
a
half
hours
.
C
herself
expressed
feeling
overwhelmed
by
the
in-
formation
and
did
not
want
to
go
through
with
the
proposed
treatment
of
start-
ing
antibiotics
for
the
gut
,
given
that
the
treatment
had
not
been
verified
by
the
scientific
community
.
We
felt
devastated
after
this
meeting
,
and
we
could
not
believe
that
medical
doctors
would
try
to
make
money
from
this
treatment
plan
.
After
a
second
meeting
with
the
FunMed
doctor
,
we
still
find
it
unbelievable
that
some
caregivers
say
that
they
have
experience
of
treating
ME
patients
but
ob-

E. B. Horwitz et al.
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10.4236/crcm.2022.118041 288 Case Reports in Clinical Medicine
viously
do
not
”.
The
Functional
Medicine
expert
:
November 2021.
Supplements to strengthen the liver, kidneys, stomach
Diet
This
expert
(
not
a
doctor
)
suggested
going
to
a
store
where
you
could
buy
supplements
to
strengthen
one
’
s
organs
.
Per
this
expert
’
s
suggestion
,
C
started
an
anti-inflammatory
diet
—
including
not
eating
meat
and
limiting
dairy
—
until
December
of
2021.
At
this
point
,
C
felt
that
continuously
having
to
monitor
what
to
eat
and
not
to
eat
was
too
frustrating
,
so
we
decided
to
simply
give
her
what
she
wanted
to
eat
;
in
other
words
,
she
ate
the
same
things
as
the
rest
of
the
family
.
She
has
continued
taking
the
supplements
,
but
not
as
consistently
as
be-
fore
”.
The
Massage
therapist
:
November 2021. Working with lymph drainage.
C
visited
a
massage
therapist
to
help
“
open
up
”
a
lymph
node
on
the
left
side
of
her
body
,
after
we
had
read
about
lymph
drainage
.
We
visited
a
few
times
,
and
after
each
visit
,
C
would
need
a
lot
of
rest
.
While
we
did
not
accompany
C
to
these
massage
therapy
sessions
,
we
know
from
the
after-effects
that
these
visits
were
too
draining
for
C
.
We
would
not
recommend
this
specific
plan
of
treat-
ment
to
others
if
one
were
low
on
energy
,
since
the
treatment
involves
releasing
muscle
tension
,
and
muscle
tension
is
actually
needed
to
aid
healing
”.
One
rec-
ommendation
from
the
massage
therapist
that
really
has
helped
is
supportive
sockings
.
ME
researcher
Spring 2022.
I
have
been
in
correspondence
with
Dr
.
Jonas
Bergquist
,
who
hypothesizes
that
ME
can
be
at
least
partly
triggered
by
Epstein-Barr
virus
and
influenza
in
resemblance
with
other
post-viral
fatigue
syndromes
.
His
research
is
being
con-
ducted
at
the
ME/CFS
Collaborative
Research
Centre
at
Uppsala
University
.
This
lab
has
partial
funding
for
finding
biomarkers
in
cerebrospinal
fluid
and
blood
from
ME
patients
.
He
has
shared
his
findings
on
neuroinflammatory
markers
,
on
autoantibodies
in
blood
and
disturbances
in
energy
metabolism
.
He
has
suggested
intravenous
gamma-globulin
injection
(
IVIG
)
treatment
,
which
influences
the
immune
system
activation
(
the
mechanism
echoes
that
of
a
vaccine
).
Although
this
treatment
is
expensive
in
Sweden
,
there
are
doctors
in
clinics
in
Sweden
,
Denmark
and
USA
who
administer
this
treatment
.
He
has
additionally
discussed
plasmaphoresis
or
immune
absorbtion
as
po-
tential
treatment
options
with
one
of
his
German
colleagues
(
Dr
Carmen
Schei-
benbogen
),
who
have
seen
improvements
in
a
subgroup
of
patients
with
ME
;
however
,
it
was
based
on
risk-benefit
evaluation
determined
that
C
would
need
to
be
experiencing
more
severe
symptoms
before
electing
to
undertake
this
sort
of
treatment
with
their
potential
side-effects
.

E. B. Horwitz et al.
DOI:
10.4236/crcm.2022.118041 289 Case Reports in Clinical Medicine
A
perspective
from
Norway
We
have
been
in
correspondence
with
a
professor
in
Pediatrics
from
Norway
(
whose
son
has
ME
).
The
first
piece
of
advice
this
professor
recommends
is
that
due
to
C
’
s
POTS
,
we
should
try
IVIG
[39].
One-third
of
his
colleagues
in
the
UK
have
had
good
results
when
it
comes
to
IVIG
treatment
,
although
the
professor
notes
it
can
take
up
to
12
months
after
treatment
to
see
results
.
The
second
recommendation
of
this
professor
has
been
to
try
plasmaphoresis
.
His
third
piece
of
advice
is
for
C
to
take
an
IV
saline
infusion
—1 - 2
times
a
week
in
conjunction
with
B-
12
injec-
tions
+
folic
acid
.
4. Results
Pacing seems to be the method that has given the best results of all the recom-
mendations C has received. In other words, coping and reading pre-signals of
available energy levels have been key. Additionally, B-12 injection treatments
have been proven to help ease symptoms, along with ACT treatment and sup-
portive sockings to decrease C’s POTS and hypermobility has also been some-
thing that has helped C lately.
Figure 1 presents C’s VAS scores made from 19th of May 2021-24th of May
2022, where 10 is “the worst possible overall health” and 0, “the best possible
overall health”. The different cyclic stages may be related to energy consumption
especially different cognitive activities, such as reading, hormone cycles, warm
temperatures, school visits and traveling. The last peak seen in the trend analyses
were evaluated when C. had high fever.
5. Discussion
With the unfolding of this case, and all the elements at play, what can we say
about firstly the role of the parent, living with a child who has been diagnosed
with ME, and secondly the Swedish health care system?
The
parental
role
Figure 1. Scores measures on a scale from 0 - 10, where 0 is related to the best possible overall health and 10, is related to the
worst possible overall health. C. has evaluated the scores every morning from 19th of May 2021-24th of May 2022.

E. B. Horwitz et al.
DOI:
10.4236/crcm.2022.118041 290 Case Reports in Clinical Medicine
As a parent, one is playing a key role in the “dramatic play” of what unfolds.
As C says, “How could an ME patient survive without support from a caring and
loving family?” Without a well-organized treatment process with continual res-
pectful and compassionate communication, it is likely, from our perspective,
that this case would have ended up with a patient in deep depression. The role of
the parents is not only to be a parent, but also to be a therapist, supportive
friend, pharmacist, researcher, social worker, and nurse, all at the same time
[40]. We might consider these roles as part of the healthcare system, but they
end up being the responsibility of the family. Considering this, we need to ask:
Who is taking care of the parents? Who is supporting the caring family in per-
forming these roles? Currently, it is very rare that there is organized mentorship
or methodology to take care of the caregivers. There is also a question of equality
here [41]; which patients have access to parents who can support them in this
way, and which patients do not?
Looking at what we have learnt through our investigations of C’s condition,
one can think of C’s ME as a branch that has fallen into a flowing river. Similar-
ly, with regard to the way the branch forces the water to flow in alternative ways,
C’s Chiari malformation is maybe occluding the cerebrospinal fluid. As a result,
her body is having to cope in a different way, which has resulted in a disease
targeting the immune, hormonal, cardiovascular, and cognitive systems. C’s
body has been coping with something that is poorly understood. At the age of
eighteen, many physical, emotional, cognitive, and hormonal systems are devel-
oping, and her body is still very much under construction. Every day, one can be
working with a varying baseline of energy and emotions. This adds a layer of
complexity to considering the options for treatment—how can one as a parent
know if they are doing the right thing, especially in relation to the rapidly
changing systems of the adolescent body?
A key question throughout this case study has been whether to perform an
operation that, although risky, could potentially increase the quality of life for
patients such as C. As parents, we have spent a great deal of time deliberating
whether an operation would be worth it. While time can help in weighing the
options, it is traumatic as a parent to see one’s child spend time suffering in or-
der to gain this wisdom. There is a steep emotional cost of waiting, and we our-
selves have experienced dark and difficult thoughts from the weight of responsi-
bility, trying to work out what the “right thing” is to do.
In all, we know little about this disease [42]. The existential weight of living
with such unknowns in relation to evidence-based research needs to be taken
more into account by our health care system and providers [42]. This combina-
tion of existential confusion and dread surrounding a rare disease can be diffi-
cult for the patient to handle [43], as major life events and day-to-day processes
alike can be brought to a sudden halt. As a parent, it can also be difficult to pro-
vide the child the confidence and reassurance that things will turn out okay. We
are left with the need to trust the process of diagnosis and treatment to avoid a
sense of total hopelessness. The importance of this belief cannot be overstated:

E. B. Horwitz et al.
DOI:
10.4236/crcm.2022.118041 291 Case Reports in Clinical Medicine
from our experience if the members of the support system lack belief, they can
add negative energy, anxiety, and despair into the process, which will hinder the
healing process. The feelings of parents that are not able to handle the uncer-
tainty of their child being ill could impact the patient in a detrimental way.
If a child with ME does not have a support family system, they would have to
exert even more energy taking them far beyond their coping limits.
At this point in our journey, we have reached a set of fundamental questions
about the relationship between patient-parents and the health care system. If a
patient cannot handle their symptoms, diagnosis or treatment alone, how can a
support network be created and maintained? As parents and family members of
patients, how can we support the healthcare system in Sweden? And how can
that health care system help them?
The
Swedish
healthcare
system
We conclude by examining what we can learn from this case study about the
Swedish health care system as it stands today.
A key problem faced in this case has been a lack of coordination. Why can the
medical field not coordinate doctors—specifically doctors with different areas of
expertise—in one clinic or a Centre of competences? This lack of coordination
can also be seen in relation to researchers. Why do doctors not coordinate with
researchers in the field?
The healthcare in Sweden needs to combine clinics and knowledge exchange
with researchers and parents. So why does this not happen? Lack of funding and
lack of organizational/management expertise are important contributing factors
[44]. There is also a crisis in the Swedish primary care since there are fewer pri-
mary care physicians per citizen in Sweden than in other comparable countries
[45]. This means that the Swedish primary care system is unable to handle ill-
nesses that are not accepted in mainstream medicine.
This issue extends to a lack of coordination between doctor and patient, which
often must be mitigated through external platforms of support. This can include
real-life support shown, for example, through the school system, or distributed
online. For instance, there exists a meaningful Facebook database where people
have shared their narratives with ME. In this Facebook page, patients share data
and treatment information. The administrator of the research page is very in-
volved with quality control, report validity, and the sharing of results. There ex-
ist various support systems in parallel. This means that patients and parents can
compare medicine treatments, diets, and rankings of experts [46]. Why can we
not bridge the gap between patient experiences and what doctors currently
know? Could this idea of developing platforms of support in between meetings
be a cost-effective way of handling the anxiety and despair in parents, the school
system, and healthcare staff?
Overall, there is a gap in the healthcare system, where 35,000 patients with ME
in Sweden are not able to get the help they need. To date, there have been no
other case studies published in Sweden partly since there is no one in the
healthcare system that can take responsibility for this process. When a parent

E. B. Horwitz et al.
DOI:
10.4236/crcm.2022.118041 292 Case Reports in Clinical Medicine
starts to lose trust in the healthcare system, one might enter a loop of distrust
between not only patient and doctor, but between patient/parent and society.
There is a danger in this process, not to mention the high financial and emo-
tional cost to the family, which ultimately ends up taking 100% responsibility.
ME research has started to become a priority in the wake of post-COVID re-
covery [47]. Post-COVID patients are prioritized because, in the eyes of our so-
ciety, they are suffering more than long-term ME patients [48]. This is unfortu-
nate and intolerable, in particular since the long-term chronic fatigue that de-
velops in some covid-19 patients may actually be ME. Who is ultimately in
charge of our society’s priorities related to new post-modern disorders? More
broadly, how can we use this shift as an opportunity to begin addressing the gaps
in coordination and care in the Swedish healthcare system?
6. Conclusion
This case study provides insights from a first-person parent perspective on how
Swedish healthcare works in a newly discovered ME in a 17-year-old woman.
Specific recommended medications, treatments, and therapies from 13 different
specialists are presented but coordination between them does not exist. When
you as a parent begins to lose confidence in the care, we end up in a loop of mi-
strust between not only the patient and the doctor but between the patient/parent
and society. More resources are needed to coordinate ME treatments with ME
research between different health care providers in Sweden.
Acknowledgements
Warmly thanks to MD, PhD. Jacob Theorell and MD, PhD Walter Osika for all
good advice and support during C’s, struggling with her ME. We also direct our
thanks to Open Medicine Foundation (OMF).
Conflicts of Interest
The authors declare no conflicts of interest regarding the publication of this pa-
per.
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