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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Biopsychosocial Model: A Review of Patient Harm and Distress in the Medical Encounter

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Abstract

Objective: Despite the growing evidence of physiological and cellular abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, there has been a strong impetus to tackle the illness utilising a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. This review seeks to account for this discord. Methods: A narrative review methodology is employed to synthesise the evidence for potential iatrogenesis. Results: We identify seven potential modalities of iatrogenesis or harm reported by patients: 1. difficulties in reaching an acceptable diagnosis; 2. misdiagnosis, including of other medical and psychological conditions; 3. difficulties in accessing the sick role, medical care and social support; 4. high levels of patient dissatisfaction with the quality of medical care; 5. negative responses to controversial therapies (cognitive behavioural therapy and graded exercise therapy); 6. challenges to the patient narrative and experience; 7. psychological harm (individual and collective distress). Conclusion: The biopsychosocial framework currently applied to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is too narrow in focus and fails to adequately incorporate the patient narrative. Misdiagnosis, conflict and harm are observable outcomes where doctors’ and patients’ perspectives remain incongruent. Biopsychosocial practices should be scrutinised for potential harms. Clinicians should consider adopting alternative patient-centred approaches.
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Disability and Rehabilitation
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20
Myalgic encephalomyelitis/chronic fatigue
syndrome and the biopsychosocial model: a
review of patient harm and distress in the medical
encounter
Keith J. Geraghty & Charlotte Blease
To cite this article: Keith J. Geraghty & Charlotte Blease (2018): Myalgic encephalomyelitis/
chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in
the medical encounter, Disability and Rehabilitation, DOI: 10.1080/09638288.2018.1481149
To link to this article: https://doi.org/10.1080/09638288.2018.1481149
Published online: 21 Jun 2018.
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REVIEW ARTICLE
Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial
model: a review of patient harm and distress in the medical encounter
Keith J. Geraghty
a
and Charlotte Blease
b
a
Division of Health Services Research and Population Health, University of Manchester, Centre for Primary Care, Manchester, UK;
b
Department
of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA
ABSTRACT
Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalo-
myelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utiliz-
ing a biopsychosocial model. However, many sufferers of this disabling condition report distress and
dissatisfaction following medical encounters. This review seeks to account for this discord.
Methods: A narrative review methodology is employed to synthesize the evidence for potential
iatrogenesis.
Results: We identify seven potential modalities of iatrogenesis or harm reported by patients:
1. difficulties in reaching an acceptable diagnosis;
2. misdiagnosis, including of other medical and psychological conditions;
3. difficulties in accessing the sick role, medical care and social support;
4. high levels of patient dissatisfaction with the quality of medical care;
5. negative responses to controversial therapies (cognitive behavioral therapy and graded exer-
cise therapy);
6. challenges to the patient narrative and experience;
7. psychological harm (individual and collective distress).
Conclusion: The biopsychosocial framework currently applied to ME/CFS is too narrow in focus and fails
to adequately incorporate the patient narrative. Misdiagnosis, conflict, and harm are observable outcomes
where doctorsand patientsperspectives remain incongruent. Biopsychosocial practices should be scruti-
nized for potential harms. Clinicians should consider adopting alternative patient-centred approaches.
äIMPLICATIONS FOR REHABILITATION
Patients with ME/CFS may report or experience one or more of the modalities of harms and distress
identified in this review.
It is important health and rehabilitation professionals seek to avoid and minimize harms when treat-
ing or assisting ME/CFS patients.
There are conflicting models of ME/CFS; we highlight two divergent models, a biopsychosocial model
and a biomedical model that is preferred by patients.
The biopsychosocial frameworkapplied in clinical practice promotes treatments such as cognitive
behavioral therapy and exercise therapy, however, the evidence for their success is contested and
many patients reject the notion their illness is perpetuated by dysfunctional beliefs, personality traits,
or behaviors.
Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant
patient-centredapproaches that give greater prominence to the patient narrative and experience
of illness.
ARTICLE HISTORY
Received 28 March 2017
Revised 22 May 2018
Accepted 22 May 2018
KEYWORDS
Chronic fatigue syndrome;
biopsychosocial model;
harm; iatrogenesis;
treatment; doctorpatient
relationship
Introduction
Estimates suggest around 250,000 people suffer from Myalgic
Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) in the
United Kingdom [1]. A general practice with 10,000 patients is
likely to include up to 3040 patients with suspected ME/CFS and
half of these patients will require specialist services [2,3]. The
World Health Organization (WHO) classifies ME as a neurological
disease [4]. ME is characterized by distinctive muscular symptoms,
such as muscle pain and weakness, together with neurological
symptoms and circulatory impairment [5,6]. Ramsay put forward a
clinical profile of ME as far back as the 1950s [7,8]. In the late
1980s, the medical profession rejected ME as a clinical entity and
proposed CFS, a general syndrome of fatigue [911]. In the US,
the Centre for Disease Control adopted CFS over ME, and in
the UK experts also adopted CFS. At that time, there was scant
evidence of neurological disease; thus ME nomenclature was
dropped in favor of a fatigue syndrome[12]. This divergence
CONTACT Keith J. Geraghty keith.geraghty@manchester.ac.uk Centre for Primary Care, Division of Health Services Research and Population Health, School of
Community Based Medicine, 7.29, Williamson Building, University of Manchester, Brunswick Street, Manchester M13 9PL, UK
ß2018 Informa UK Limited, trading as Taylor & Francis Group
DISABILITY AND REHABILITATION, 2018
https://doi.org/10.1080/09638288.2018.1481149
of models coincided with a general trend in medicine to
explain medically unexplained illnessesusing the principles of
biopsychosocial medicine [13], patient-centred medicine [14,15],
and a systems theory-based approach [16]; moving from biomed-
ical models of pathological disease, to a biopsychosocial model of
illness [17]. Within the biopsychosocial model, doctors are
required to consider three core factors; biological, psychological,
and social [18]. The premise is that by considering all three facets,
clinicians will be better able to diagnose and treat patients: so-
called holistic medicine. We define the application of the biopsy-
chosocial model in clinical practice as the biopsychosocial frame-
work. In the case of ME/CFS, the biopsychosocial framework has
been used to propose a model of CFS (ME being dropped) and a
rationale for intervention structured around three interconnecting
factors [precipitating,predisposing, and perpetuating] that are
said to link the biological, social, and psychological facets of CFS
[19,20]. Proponents of this BPS approach, such as Moss-Morris
et al., state that:
It is unlikely that CFS can be understood through one etiological
[mechanism]. Rather it is a complex illness .CFS is precipitated by life
events and/or viral illness in vulnerable individuals, such as those
who are genetically predisposed, prone to distress, high achievement,
and over or under activity. [There is a] self-perpetuating cycle where
physiological changes, illness beliefs, reduced and inconsistent activity,
sleep disturbance, medical uncertainty and lack of guidance interact to
maintain symptoms. Treatments based on this model including
cognitive behavioral therapy and graded exercise therapy are effective
at significantly reducing fatigue and disability in CFS [21, p.303].
Within the biopsychosocial model of ME/CFS, the symptoms
patients present with, such as fatigue, pain, cognitive deficits,
orthostatic intolerance, and exercise intolerance, are posited to be
perpetuatedby dysfunctional illness beliefsand sickness behav-
iors[22,12], embedded within a social and health system that
sustains illness seeking behaviors [23]. In response, interventions
like cognitive behavioral therapy are proposed to get patients
to change their perceptions of their bodily sensations; to not
view symptoms as sensations of biological dysfunction, but as
unhelpful thought processes[24]. Doctors are encouraged to
apply the biopsychosocial framework and to offer psychotherapy
to address unwanted cognitions and behaviors [25]. UK health
authorities recommend CBT and graded exercise therapy or GET
for ME/CFS, guided by research promoting the biopsychosocial
model [21,24]. The UK National Health Service patient information
website states, “…CBT works by breaking the negative cycle
of interconnected thoughts, feelings, physical sensations, and
actions[26]. This connection between thoughts, behavior, and
illness, is a key feature of the BPS-framework model of CFS
[1921,24]. Family doctors are encouraged to refer patients with
suspected CFS to psychological treatment centers for interven-
tions based on biopsychosocial principles [27,28].
Engel proposed the biopsychosocial modelas a vision of
more integrated and equitable medicine [17]. The utilization of
the biopsychosocial model is based on an intrinsic belief that it
will deliver positive benefits for patients with ME/CFS [13].
However, rather than being more satisfied, there is mounting
evidence that significant numbers of patients with ME/CFS feel
disbelieved and distressed following the medical encounter; par-
ticularly in response to BPS-styled treatment approaches that rec-
ommend psycho-behavioral therapies [2932]. The potential for
harm or iatrogenesis is not often considered within the biopsy-
chosocial paradigm, where there is an assumption of benevolence,
with little consideration of potential adverse outcomes [33]. The
biopsychosocial model is based on the notion that the inclusion
of all [bio-psycho-social], improves on narrowly focused
reductionist biomedical models [33]. This premise must not be
taken on face value, but be proven and robustly established par-
ticular attention needs to be given to the responses of patients to
such models and interventions [33,34]. Borrell-Carri
o et al. suggest
that The biopsychosocial model is both a philosophy of clinical care
and a practical clinical guide[35]. The model guides practice. In this
paper, we assess the potential negative impact of biopsychosocial
practices on patients with ME/CFS. The sociologist Illich, in his book
Medical Nemesis [34], states that medical models have the capacity
to cause harm at the individual, social, and cultural levels. Here we
must view iatrogenesis in a wider context, as coming from not just
healer (doctor), but also treatment approaches used by doctors.
Methods
We conducted a detailed search of medical databases, including
MEDLINE/PubMed, PsycINFO, Web of Science and Cochrane Library
and other databases (19802017), applying the search terms harm,
iatrogenesis,’‘distress,and dissatisfaction,to linked terms ME
and CFS(long title and abbreviations). Results revealed few articles
on the topic of harms or iatrogenesis in ME/CFS, and none from
the patient perspective. In response to the parsimony of evidence
on the subject, we opted to conduct a scoping narrative review.
Baumeister and Leary [36, p.311] write, Narrative literature reviews
service a vital scientific function narrative literature reviewing is a
valuable theory-building technique, and it may also service
hypothesis-generating functions. A narrative review is particularly
useful in studying the subjective nature of human experience,
particularly in health care environments [37], allowing for study of
the patient perspective in the medical encounter [38]. We widened
our search to identify relevant publications where ME/CFS patients
report harm,distress,dissatisfaction,complaints,orpoor
doctorpatient relationshipsfollowing the medical encounter. We
excluded press or media style articles but included gray literature,
such as patient organization publications. This literature is often
ignored in traditional meta-synthesis reviews. Two researchers
searched the literature and agreed on a list of themes/research
questions (17 below) to sub-divide harms or distress identified.
Unlike traditional meta-analytic reviews, we did not begin with a
prior hypothesis; we conducted an exploratory inductive review
that sought to identify evidence of harm or iatrogenesis within the
literature reported by ME/CFS patients in primary research studies
or surveys. We synthesize our findings under headings we term
modalities of harm. These are consensually agreed research
themes to emerge from the literature formulated within this narra-
tive review.
Key themes to emerge from the literature
Difficulties in reaching an acceptable diagnosis of ME/CFS
Proponents of the biopsychosocial model argue that there should
be minimization of medical investigations in patients with medic-
ally unexplained symptoms in order to prevent the adopting of
unhelpful illness behaviors [39]. The act of giving a patient a med-
ical label is considered potentially iatrogenic in such cases [39,40];
that it might lead to transgression into the sick roleor might
teach patients to stay sick[41]. The biopsychosocial literature
warns of the dangers of medicalizingunexplained symptoms
[42], with the assertion that giving a medical diagnosis may be
bad for patients [4244]. Yet, patients with ME/CFS often report
that getting a diagnosis is the single most helpful event for them
in managing their condition [45], and NICE guidelines emphasize
the importance of an early diagnosis [2]. Research has shown that
2K. J. GERAGHTY AND C. BLEASE
a delay in diagnosis has potentially harmful effects [46]. The
polemic around the nature of ME/CFS as a clinical identity has
arguably added to clinical confusion, with consequences for
patients in terms of reaching a diagnosis. Many doctors and allied
professionals lack knowledge of the condition and the skills to
diagnose and manage the illness [1]. The withholding of, or delay-
ing, a diagnosis has profound medical, financial, social, and psy-
cho-emotional implications for patients with ME/CFS [4548].
Medical training may be to blame, in terms of a knowledge deficit,
but medical dogma may also play a part. Many medical professio-
nals do not view ME/CFS as a serious medical condition [47].
Harvard-based ME/CFS expert, Prof. Komaroff states,
When skeptical physicians, many of whom are unaware of this
literature, tell patients with ME/CFS that there is nothing
wrong they not only commit a diagnostic error: They also compound
the patientssuffering [48].
Komaroff refers to the fact that many physicians are unaware of
the biomedical literature in ME/CFS pathophysiology; particularly
the literature around inflammatory and immune activation events in
this condition, as well as evidence of neurological inflammation
detected by brain positron emission tomography (PET) and mag-
netic resonance imaging (MRI) scanning. A growing number of
neurological studies show changes in brain pathology and patho-
physiology in ME/CFS patients, that might help explain symptoms
and differentiate ME/CFS from other illnesses or from healthy con-
trols. Detectable abnormalities include reductions in white and gray
brain matter, punctuate lesions, reductions in absolute cerebral
blood flow, increased ventricular lactate, changes in brain metabo-
lites, and brain temperature readings [48,49]. While these findings
are not universal to all ME/CFS patients they do indicate disease
pathology and support the WHOs neurological disease classification.
In contrast, the biopsychosocial model of ME/CFS places
greater emphasis on psycho-social factors of the illness. We see
this in Harvey and Wesselys outline of a biopsychosocial model of
CFS and Maes and Twisk illustrate how the biomedical model of
ME/CFS conflicts with the biopsychosocial model [50]. It is argu-
able, that these divergent models and a lack of consensus about
ME/CFS etiology and management has made it more difficult for
patients to reach a speedy diagnosis or access medical support
[29]. In many instances, ME/CFS patients have to battle doctors
for recognition and medical help.
Misdiagnosis, including of other medical and psychological
conditions as CFS
Within the BPS framework of ME/CFS, general practitioners [GPs]
and hospital specialists are asked not to undertake exhaustive
tests for patients with ME/CFS, as over investigation is deemed
iatrogenic and a drain on healthcare resources [23,25,39,40]. GPs
are encouraged to refer patients to specialist CBT clinics [27,28].
There is a risk related to this strategy; by minimizing medical
investigations patients may be wrongly diagnosed or undiag-
nosed. Grouping patients with unexplained symptoms into a
broad category [e.g., functional syndrome or chronic fatigue syn-
drome] carries a high risk of misdiagnosis. This concern is
observed in a review of 418 patient referrals to a specialist chronic
fatigue clinic, where 37% of referrals were rejected as inappropri-
ate, and of these, 61% had a likely alternative diagnosis [51]. In a
follow-up survey of patients assessed in-clinic, 43% had an alter-
native medical or psychiatric diagnosis [51]. Similarly, 40% of refer-
rals to a Newcastle CFS clinic were eventually diagnosed with
other conditions, 47% being diagnosed with a chronic disease,
20% a primary sleep disorder, 15% a psychological/psychiatric
illness (most commonly, depression, anxiety, and post-traumatic
stress disorder), and 4% a cardiovascular disorder [52]. This data
show GPs often misdiagnose ME/CFS and diagnose patients as
having ME/CFS who have other treatable conditions; with nega-
tive consequences for both sets of patients.
Difficulties in accessing the sick role, medical care and
social support
The biopsychosocial framework is increasingly used to assess ME/
CFS patientsright to adopt the sick role[53,54]. In the UK, doc-
tors play a role in assessing claimants for sickness benefits and
advise Government on social policies. The biopsychosocial model
has been used to develop a training manual of the UK
Department for Work and Pensions (DWP) for disability analysts
[55]; has helped shape NICE guidelines for ME/CFS [2]; and has
been used to design guidelines for medical insurance claims
assessors in the Netherlands [5658]. In this regard, BPS perspec-
tives are being used in assessing patientsrights to access medical
and social care. Interestingly, sufferers often report finding it diffi-
cult to access sickness benefits [31,32].
ME/CFS has been classified as a neurological disease by the
WHO since 1969 [59] and a growing number of researchers theor-
ize that ME/CFS might be a neuro-immunological condition
[6063]: yet the BPS framework does not account for ME/CFS as a
neurological or immunological disease instead, much of the pro-
BPS model literature on ME/CFS adopts what Nassir Ghaemi terms
the eclectic approach; whereby everything appears important, all
bio, all psycho, and all social factors [33]. Yet in clinical practice
(the BPS framework), there is strong emphasis on psychological
interventions (CBT and GET). While many patients with the condi-
tion prefer the neuro-immune explanation for their symptoms (as
they feel this accurately reflects their experience of the disease)
[64]; medical experts favoring a BPS model dislike the term ME,
claiming the evidence of brain inflammation or muscle disease is
not strongly established. In one sense, BPS interventionists treat
blindly and to go against the preferences of patients in terms of
disease name and explanation. Here medical authority takes pre-
cedent over the patient narrative. Patients with the condition
often challenge doctors on the meaning of symptoms or the
cause of the illness, rejecting BPS model explanations that symp-
toms are aberrations of belief [65]. Raine et al. found that UK GPs
negatively stereotype ME/CFS patients as combative,hostile,or
difficult[66]. Biopsychosocial discourse often portrays these
patients as possessing unhealthy personality traits, such as
maladaptive perfectionism[67,68]; yet such assertions are not
well supported, many studies find no significant differences
between ME/CFS patients and the general population with regard
to distinctive personality profiles [6972]. A Swedish study of
physiciansattitudes to CFS found that physicians often down-
grade the seriousness of this illness to non-diseasestatus and
view patients as being illness focused,demanding, and
medicalising[73]. Given community-based doctors have limited
knowledge of ME/CFS [74] and doctors display high levels of skep-
ticism in this illness domain [75], it is unsurprising that many
patients with ME/CFS report problematic clinical interactions
[2931,76]. Patient surveys conducted by patient organizations
confirm high levels of patient dissatisfaction in the medical
encounter. An Action for ME [AfME] survey [n¼2338] [31] found
that ME/CFS patients encounter multiple barriers to accessing
medical and social support; over 70% received no advice from
their GP on managing the condition; 80% of bedridden patients
were refused a home visit on some occasion; and the majority
reported difficulties accessing social welfare benefits.
HARM AND THE BIOSYCHOSOCIAL MODEL IN CHRONIC FATIGUE SYNDROME 3
Some authors that favor the biopsychosocial model question
the role of ME/CFS patient support groups, viewing them as risk
factors for perpetuation of the illness [13]. However, studies show
that many ME/CFS patients turn to peer groups for support and
to compensate for poor medical care [77]. Patient support groups
are a valuable resource of information and often empower
patients [78,79]. The narrative of the unhelpful patient group
exists within the BPS literature to explain patientshostility
towards the BPS framework. Many ME/CFS patients reject the BPS
model of their illness and resort to avoiding doctors and self-
management; in an illness that causes serious physical, social, and
financial dislocation [80]. Low levels of medical support, difficulties
accessing social care and benefits, and challenges to patientsper-
sonality traits and peer support systems, represent what Illich
might term individual, social and cultural harms [34].
High levels of patient dissatisfaction with the quality of
medical care
Above, we outlined how ME/CFS patients experience difficulties in
obtaining a diagnosis and accessing medical and social care.
These barriers appear to be more pronounced for patients with a
severe presentation of ME/CFS [81,82]. Furthermore, for those
patients who do receive care, a large number report dissatisfac-
tion with the medical support they receive [8183]. Dissatisfaction
is not simply related to problems getting a correct diagnosis, but
includes doctorsreluctance to perform tests and neglecting to
deal with patientscomplaints [31,65,83,84]. This is not surprising
given the BPS model of ME/CFS calls for minimization of medical
investigations. Deale and Wessely found that two-thirds of CFS
patients referred to specialist clinics were dissatisfied with the
quality of medical care they received [29]. Moreover, 79% reported
that doctors did not understand CFS; 50% found their doctor
skeptical or disbelieving; and 81% reported being given inad-
equate guidance on how to manage their illness [29]. In addition,
over half of patients were given a psychiatric diagnosis “…which
was unacceptable to them and associated with dissatisfaction
[29, p.1862]. In one survey, 28% of the patients rated their medical
care as pooror very poorand 22% received no medical care at
all [32]. Green et al. [p.861] assert that the medical profession is
responsible for causing distress in ME/CFS:
Both society and the medical profession have contributed to
the disrespect and rejection experienced by patients with ME/CFS.
They are often treated with skepticism, uncertainty, and apprehen-
sion and labeled as deconditioned or having a primary psycho-
logical disorder. Patients often make extraordinary efforts at
extreme personal and physical costs to find a physician who will
correctly diagnose and treat their symptoms; some are treated
inappropriately, causing additional harm[60].
Horton et al. report some positive experiences from patients
with ME/CFS around doctor-patient interactions in general prac-
tice, but conclude that positive accounts are often the result of
individual clinicians forming constructive therapeutic relationships
with patients [85].
A number of ME/CFS charities have carried out large-scale sur-
veys of their members. This data adds to the evidence of prob-
lematic doctor-patient relationships. One survey revealed that
over 30% of ME/CFS sufferers no longer see a GP and 59% had
not visited an NHS specialist in the previous year [86]. These fig-
ures are especially concerning given ME/CFS is a debilitating con-
dition that often greatly impacts on patientsquality of life [87,88],
leaving many vulnerable to secondary depression [89] and suicide
risk [90]. Despite these facts, BPS treatment models [10,13,19,21]
focus primarily on correcting dysfunctional beliefs and behaviors;
there is almost no inclination to offer suicide counseling or psy-
chological support with distress. Within the BPS framework there
appears to be a preference for corrective therapies, like CBT and
GET, rather than other forms of psychological support therapies.
Application of biopsychosocial model therapies: CBT and GET
While NICE recommends CBT and GET as evidence-based for ME/
CFS (2007), some commentators question the efficacy of these
recommendations. Twisk and Maes conclude that graded exercise
may be harmful to patients with ME/CFS, as forced exercise exac-
erbates symptoms of post-exertional malaise [91]. This concern is
echoed by observations from van Oosterwijck et al. [92], showing
that submaximal exercise exacerbates symptoms and induces
relapse in ME/CFS patients. Jason and colleagues suggest that ME/
CFS rehabilitation should be considered within a proposed energy
envelope theorythat draws a relationship between biological
dysfunction, over-exertion and fatigue [93]. This theory suggests
that ME/CFS sufferers who expend more energy than they have
available (beyond the envelope) experience greater fatigue and
impairment than those who balance their available energy. This
contrasts with the rationale for graded exercise therapies, which is
to steadily increase exercise irrespective of symptoms to even
push beyond symptoms and view them as anxiety-related fears or
dysfunctional beliefs. Jason et al. suggest careful pacing as an
appropriate treatment approach in ME/CFS, not the GET offered
under the BPS framework. Opposing models and treatment
approaches exemplify a lack of consensus among the medical
profession, with negative ramifications for sufferers.
The evidence for the success of CBT in ME/CFS remains con-
tested. A Cochrane review of psychological therapies for medically
unexplained illnesses, including ME/CFS, found only weak to mod-
erate improvement outcomes after CBT or GET [94]. While another
systematic review found inconsistent evidence of modest benefit
using CBT versus control treatments and more consistent evidence
of benefit using GET [95], it was noted that some trials used broad
entry criteria (i.e. trials may recruit patients with fatigue or mental
health complaints, rather than ME/CFS). The largest RCT in ME/
CFS treatment (the PACE trial) tested CBT, GET, and adaptive
pacing therapy (APT), compared with standard medical care (SMC)
[n¼640], and reported a 22% recovery rate among patients
receiving CBT and GET, compared with just 7% in SMC [96].
However, in PACE reported recovery had little impact on social
welfare benefit claims, health care usage, or rates of return to
employment [97]. Despite the reported benefits, most patients
were left in a similar position. Moss-Morris et al. observed a
decrease in self-reported fatigue using GET for ME/CFS [98], but
no increase in aerobic fitness [maximum oxygen uptake in an
exercise test]; while Wiborg et al. observed reduced self-reported
fatigue, but no substantial increase in physical activity levels
measured by actometers [20]. This discrepancy between reported
improvements in subjective ratings of fatigueand well-being
does not seem to translate into improvement in objective tests of
physical function [e.g., walking ability]. There are growing con-
cerns over the validity of evidence derived from clinical trials of
CBT and GET. N
u~
nez et al. [99] observed that CBT and GET did
not improve health-related quality of life. Recent reviews in this
area by Geraghty and Wilshire et al. detail how the PACE trial
team altered methods to assess benefits mid-trial, that arguably
inflated improvement and recovery rates substantially [100,101].
Wilshire et al. speculate a more accurate recovery rate of around
7% for CBT and GET, not the 22% reported in PACE. Given the
high rates of incorrect referral to CBT clinics [51,52] of around
40%, there is some concern RCTs may suffer from the same
4K. J. GERAGHTY AND C. BLEASE
problem of inclusion bias of heterogeneous patient cohorts with
high numbers of patients with psychiatric illnesses [102].
Some authors have raised concerns about the safety of CBT
and GET, suggesting that between 40 and 50% of patients with
ME/CFS report harms [103]. This concern is echoed by a review of
patient survey evidence by Geraghty et al. that shows that more
than half of all patients undertaking graded exercise report a
negative outcome [104]. An ME Association survey [n¼1428]
found that CBT had little positive impact on symptoms and GET
had a marked negative impact on symptoms for as much as
70%þof patients, with self-pacing being preferred over CBT and
GET by the majority of respondents [105]. This contrasts with
clinical trials that report CBT and GET to be safe treatments pro-
ducing no serious adverse outcomes [106108]. While it might be
argued that randomized controlled trials offer more reliable evi-
dence than surveys undertaken by patient groups, patient survey
evidence is consistent across multiple surveys, whereas clinical tri-
als of CBT/GET such as the PACE trial, have attracted considerable
criticism for potential methodological errors and biases [109].
Challenges to the patient narrative and experience
We note that a central feature of the biopsychosocial framework
in ME/CFS is to challenge patientsillness beliefs in order to alter
unwanted beliefs and behaviors [28,110,111]. The symptoms many
ME/CFS patients present with (fatigue, pain, cognitive deficits,
orthostatic intolerance, and exercise intolerance) are posited as
dysfunctional illness beliefswithin the BPS model of CFS
[12,13,19,21]. The clinicians role is to offer a cognitive-behavior
model to address perpetuatingfactors or unwanted cognitions
[12,1924]. We note above, many ME/CFS patients contest that
they are psychologically unwell or require psychological
interventions. Patient surveys from the UK, Norway, and Holland,
reveal similar negative responses to psychological treatments by
ME/CFS patients, with significant numbers reporting concerns
[104,105,112115]. Yet, patients may feel under pressure to enter
CBT/GET, given the lack of alternative therapies available to them
by health care providers [116,117].
Biopsychosocial discourse describes patient negativity towards
psychotherapy as indicative of illness seeking behaviors[23,25].
There is a strong emphasis on linking patientsbeliefs to treat-
ment outcomes [118,119]. Any patient who fails to engage in psy-
chotherapy may be perceived as not wanting to get well,or
attempting to maintain the sick role. Some studies suggest
patient support groups may impede recovery, or that relationships
with parents or partners may impact outcomes [120,121]. There is
an implicit inference that patients with ME/CFS are able to get
better if motivated to do so, or if they are kept away from nega-
tive influences (even family members). Such medical narratives of
ME/CFS shape how the medical profession and the public per-
ceive the illness. We might link this to the high levels of social
stigma and insecurity reported by ME/CFS patients [122]. Yet, this
constructed biopsychosocial narrative of ME/CFS is often rejected
by sufferers as inaccurate and misleading [65,123]. Here, we must
give more credence to patient surveys and qualitative studies that
consistently reveal patientsfeelings of injustice, epistemic and
hermeneutic [124].
Psychological harm: individual and collective distress
Attempting to impose a psychogenic rationale on patients with
ME/CFS may cause harm to an individual patient if this diagnosis
is inaccurate or contains inappropriate advice; and may be harm-
ful at the collective level [socio-cultural], if doctors promote
inaccurate descriptions of ME/CFS that differ from patientsexperi-
ences [124]. For example, patientspoor responses to CBT and
GET conflict with doctorspromotion of CBT and GET as safe and
effective treatments. In clinical practice, family doctors may pre-
sent a biopsychosocial model rationale of ME/CFS [125], with CBT/
GET professed as the only viable treatment options [10,13]. For
patients who adhere to their doctorsauthority, this may gener-
ate several potential iatrogenic outcomes. First, patients may have
to reconcile a conflict between their personal illness perceptions,
e.g., experiencing symptoms with strong perceptions of a physical
illness, versus a medical BPS model narrative of symptoms being
self-perpetuated [65,126]. Here, patients are drawn into a conflict
with their doctor concerning disease name, etiology, and treat-
ment [127,128]. Patients not acceding to the BPS model represen-
tation of their illness may reluctantly decide to withdraw from
seeking further medical assistance and may be left to suffer illness
in isolation. Indeed, there is evidence that many ME/CFS sufferers,
dissatisfied with doctorpatient interactions, opt out of traditional
medicine in search of alternative therapies [3032]. Second,
patients being led to believe they are not suffering from a bio-
logical illness might attempt to undertake normal physical activ-
ities, resulting in their illness worsening [129132]. Third, patients
might blame themselves for poor responses to treatments like
CBT of GET if unsuccessful; yet the therapy itself may be inappro-
priate. Fourth, patients offered CBT may perceive they are suffer-
ing from a psychological disorder, yet this might not be the case
[60]. Finally, collectively ME/CFS patients may perceive that the
medical community is promoting inaccurate descriptions of their
illness in medical publications and the media [48]. Taken together,
these factors may make it harder for patients to deal with their
condition and may affect their standing in society. There is robust
research to show that ME/CFS is associated with feelings of social
isolation, psychological distress, and loss of identity [124,133,134].
Discussion and conclusion
Discussion
The biopsychosocial model of ME/CFS (commonly cited in the
literature) proposes that the illness is, in part, a psychosomatic dis-
order, where patientssymptoms are perpetuated by dysfunctional
illness beliefs and behaviors that need to be challenged by physi-
cians or psychotherapists [13,19,21]. Promoters of this version of
the biopsychosocial model suggest psycho-behavioral therapies are
needed to reverse the condition. Many patients reject this BPS
model framework as inaccurate and stigmatizing. While there is
no compelling evidence that ME/CFS is a psychogenic illness, there
is an impetus in UK health policy to group patients with ME/CFS
into a medically unexplained illnesscategory and refer patients to
CBT clinics [IAPT guidelines] [135]. Yet evidence from such NHS
specialist clinics reveals high rates of diagnostic error for patients
being referred with ME/CFS [51,52] and the evidence for the effect-
iveness of CBT and GET is weak to modest, CBTGET are not cura-
tive treatments. In contrast, the US Institute of Medicine categorize
ME/CFS as a biological illness[136] and the US National Institutes
of Health point to immunologic and inflammatory pathology as
important features of ME/CFS [60]. The incumbent biopsychosocial
model of ME/CFS is arguably skewed towards the psycho-social
[13]. This model propagates an erroneous view that ME/CFS is
heavily influenced by a sufferer's psychological status. This model
indirectly blames the sufferer for perpetuating their illness and
asserts that the sufferer may end the illness by engaging in psycho-
therapy and exercise therapy [12,1925]. This model creates a per-
ception that ME/CFS is an illness of mind-body, something that can
HARM AND THE BIOSYCHOSOCIAL MODEL IN CHRONIC FATIGUE SYNDROME 5
be cured by positive thinking (talk therapy). This BPS model rhet-
oric may be partly responsible for influencing the way in which
doctors and health professionals perceive the illness, not as a ser-
ious physical or organic disease (a biomedical model), but as a psy-
cho-somatic syndrome (a biopsychosocial model). These two
models offer very contrasting ideas about what causes ME/CFS and
what generates symptoms. The BPS model posits that symptoms
are a consequence of patientsactions and thoughts, whereas the
biomedical model asserts that symptoms are a direct result of bio-
logical dysfunction, often triggered by infection [48]. The two mod-
els are incongruent and hamper progress in understanding the
illness and treatment development [50].
This review identifies evidence of significant dissatisfaction and
distress reported by many ME/CFS sufferers following encounters
with doctors and allied health professionals, highlighting a para-
dox; that while the BPS model is premised on the notion of being
more holistic and patient-focused, in ME/CFS, this does not
appear to be the case. Many sufferers find it difficult to access
good medical support, including eliciting empathy from doctors.
ME/CFS patients often recount having to fend off accusations of
hypochondria from doctors. Many sufferers report doctors being
hostile, disbelieving and combative. Not only is diagnosis often
delayed, once made, ME/CFS patients are often directed towards
unpopular psychotherapy interventions (CBT and exercise ther-
apy), thus many sufferers report giving up on mainstream medi-
cine. Unsurprisingly, many patients reject the BPS model that
posits that their illness is self-perpetuated by their actions and
beliefs. As such, we are concerned that the wider patient voiceis
often ignored in this illness domain. In one survey, ME/CFS
patients ranked the professionals they want to manage their con-
dition with GPs most popular [1502 first-choice], followed by
consultant physicians [627 first-choice]; while only 15 patients
voted for psychiatrists as their first choice [32]. Sufferers clearly
want GP-led medical care, rather than management by psychia-
trists in specialist CFS centers [the NICE recommended treatments
offered in the UK health system]. There is evidence that the best
place to manage ME/CFS is in primary care, under the care of the
patients family doctor, alongside self-management or pacing of
activities [105,137]. However, doctors, particularly frontline GPs,
remain poorly trained to identify or manage patients with ME/CFS.
This may explain why GPs often refer ME/CFS to CBT centers
they may feel there is nothing else to offer. We concur with
Childs et al. statement for the need to involve patients in treat-
ment planning and service design as a key priority [138]. There
appears to be incongruence between the wants and needs of
many ME/CFS patients and the treatments offered under the biop-
sychosocial framework.
We outlined how the biopsychosocial model applied in prac-
tice (the BPS framework) may generate a number of potential
harms for patients with ME/CFS (numbered 17 above). It is diffi-
cult to directly link reports of patient distress and harms to gen-
eric models, however, in ME/CFS the biopsychosocial model has
been extensively prescribed as a treatment model, thus our review
is justified in linking BPS practices with patientsreports of distress
and dissatisfaction. The justification for CBT and exercise therapy
originates from a BPS model of ME/CFS [12,1926]. Engel et al.
hoped that the biopsychosocial model would move the focus of
medicine away from viewing illness in terms of disease pathology,
to a more patient-centred approach that takes account of the
individual, their life-course, social history and mental health.
Ironically, ME/CFS patients argue that the BPS model applied to
their illness downplays the important role of biological abnormal-
ities and over-states the role of psychological and social factors.
ME/CFS patientsrejection of the BPS model highlights one of two
possibilities; either the biospsychosocial model applied in practice
generates the types of harms we have identified in this review, or
it diverges from the ethos of Engels thinking (i.e., it is not biopsy-
chosocial). We argue that the BPS framework applied in ME/CFS is
ade facto narrowly focused psycho-social model that fails to
consider and address wider salient biological, psychological and
sociological factors. Irrespective of semantic labels, there is a need
to carefully scrutinize models as they are applied [33]. Models
applied in practice have the ability to generate harms for patients
and these harms need to be identified and minimized. Where
harms are linked to the biopsychosocial model, such practices
should be reviewed or stopped in order to prevent iatrogenesis.
Limitations of this review
Narrative reviews of this kind are open to a range of problems,
mainly the bias of the inclusion and exclusion process for present-
ing data and interpreting data. These biases are present in this
paper, however, we have sought to mitigate their impact by
exploring contrary evidence and seeking to include multiple layers
of evidence to support our interpretation of harms identified. It
could be argued that harm is a subjective experience and that
patients reporting harm may be misrepresenting their experiences,
particularly in surveys that are open to recall or sampling biases.
However, given multiple academic studies and surveys of ME/CFS
patients reveal consistent dissatisfaction and distress, we suggest
the evidence of iatrogenesis we present, is reliable. This evidence
is open to further scrutiny and reappraisal.
Conclusion
The current biopsychosocial model applied in practice has the
capacity to generate harms and distress for patients with ME/CFS,
both within and outside the medical encounter. This review iden-
tifies seven modalities of iatrogenesisthat patients with ME/CFS
may experience. We observe significant levels of misdiagnosis, dif-
ficulties getting a diagnosis and accessing care, and consistent
patient dissatisfaction with care received. There are a number of
broad areas of medical practice we view as important in under-
standing harm in ME/CFS. These include: doctors challenging
patientsunderstanding of their illness etiology and symptoms;
doctors promoting treatments that are not favored by patients;
and doctors not fully involving patients (individuals or groups) in
clinical decision-making. We find that the current biopsychosocial
framework for the treatment and management of ME/CFS fails to
adequately incorporate the patient narrative. Conflict and harm
are more likely where doctor and patient perspectives remain
incongruent. We suggest that alternative patient-centred models
need to be developed and utilized in clinical practice.
Practice implications
While the etiology of ME/CFS remains unclear, the first do no
harmprinciple of medicine should continue to guide practice.
Doctors should respect the patient narrative, rather than seek to
impose illness models and interventions in a top-down fashion.
The simple act of acknowledging patientsconcerns and involving
patients in decision making, may avoid the distress, isolation, and
iatrogenic harm many ME/CFS sufferers report [139]. Nassir
Ghaemi [33] suggests that Karl Jaspersmethod-based medicine,
or William Olsensmedical humanist model, offer more patient-
centred and pragmatic approaches with few of the weaknesses of
the biopsychosocial model. The need for a concordant model of
practice is well established [140]. A pragmatic patient-centred
6K. J. GERAGHTY AND C. BLEASE
approach encourages physicians to be open about the limitations
of medical science whilst maintaining a traditional therapeutic
role [139]. Harm is an empirical reality of medicine and is poten-
tially measurable, and doctors and researchers should seek to bet-
ter understand iatrogenesis, with a view towards minimization.
Findings from this review should be employed to raise awareness
among health care professionals about the potential for iatrogen-
esis using biopsychosocial approaches, particularly in ME/CFS, but
also in other illness domains. Medical educators should include
teaching on ME/CFS in training programs, particularly for front-
line primary care doctors. Researchers should also investigate
alternative models and interventions that better meet the needs
of patients with ME/CFS.
Disclosure statement
Dr. Geraghty has received a grant from the UK ME Association to
study patientsexperiences of treatments.
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10 K. J. GERAGHTY AND C. BLEASE
... Our findings of high rediagnosis rates are in keeping with Geraghty and Blease, who found that 40% of referrals to one ME/CFS clinic were eventually diagnosed with another chronic or psychiatric illness. 42 This narrative review of the literature also determined that patients with ME/CFS report frequent misdiagnosis of their condition, possibly related to guidelines that recommend against overinvestigation of ME/CFS patients as a drain on resources, leading to underdiagnosis. 42 A review of 418 referrals to a specialist ME/CFS clinic revealed a 37% rejection rate owing to inappropriate referral and of those, 61% had a likely alternative diagnosis. ...
... 42 This narrative review of the literature also determined that patients with ME/CFS report frequent misdiagnosis of their condition, possibly related to guidelines that recommend against overinvestigation of ME/CFS patients as a drain on resources, leading to underdiagnosis. 42 A review of 418 referrals to a specialist ME/CFS clinic revealed a 37% rejection rate owing to inappropriate referral and of those, 61% had a likely alternative diagnosis. 42 Australian women participating in an online survey experience on average a 4 years wait for rediagnosis of their chronic condition The median time to rediagnosis was 4 years. ...
... 42 A review of 418 referrals to a specialist ME/CFS clinic revealed a 37% rejection rate owing to inappropriate referral and of those, 61% had a likely alternative diagnosis. 42 Australian women participating in an online survey experience on average a 4 years wait for rediagnosis of their chronic condition The median time to rediagnosis was 4 years. These findings are in keeping with the current literature. ...
Article
Background: The diagnosis of chronic conditions in women is complicated by the historical androcentricity in medical research. Sex and gender gaps in health research may translate to unequal healthcare for women. This cross-sectional survey study aimed to ascertain the median time to diagnosis, proportions of rediagnosis and time to rediagnosis for Australian women with chronic conditions. Methods: An online survey collected anonymous data from voluntary participants. Data were analyzed using Stata14. Cox Proportional Hazards model was used to analyze time to diagnosis and rediagnosis. Logistic regression analysis was used to assess the significance of rediagnosis rates by diagnosis, age at diagnosis, income, employment, state of residence, disability status, and Indigenous status. Results: The median time from first appointment to initial diagnosis was 6 months (range 1 day-50 years) (interquartile range [IQR] 3.74 years). The median time to rediagnosis was 4 years (IQR 9) with a range of 1 day-43 years. Almost half of the women (n = 161/343, 47%) reported their primary condition being rediagnosed. From the complete responses, 40% were rediagnosed from one organic condition to another organic condition, however, 32% of women originally diagnosed with psychological, medically unexplained syndromes, or chronic pain were later rediagnosed with organic conditions. Conclusion: Median wait times for a diagnosis for women in Australia, when factoring in high rates of rediagnosis and time to rediagnosis, was 4 years. It is important that clinicians are aware of the high rediagnosis rates in female patients with chronic conditions and understand the potential impact of systemic biases on the diagnostic process for women under their care.
... Points raised in this article focus on subgroups of the long Covid population where demonstrable physical pathology is lacking. As such, the arguments forwarded are transferable to other chronically ill and disabled patient groups where medical uncertainty predominates and conditions are positioned as 'medically unexplained', particularly where 'medically unexplained' is further understood as psychogenic (see O 'Leary 2018;Geraghty and Blease 2019). While the possibilities arising from a partnership between disability studies and medicine are numerous, this article focuses on the social relational model of disability (Thomas 1999;Thomas 2007) and the concept of psycho-emotional disablism (Thomas 1999;Thomas 2007;Reeve 2020) as candidates for inclusion in medical curricula. ...
... Lack of biomarkers renders application of a biomedical model challenging and opens the door to positioning subgroups of long Covid as 'medically unexplained symptoms'; a biopsychosocial model (Engel 1977) may thus be preferred. However, in the field of medically unexplained symptoms, a particular application of the biopsychosocial model has been critiqued for unduly psychologising chronic illness while dismissing patient narratives (Geraghty and Blease 2019) and it has been cautioned that long Covid may be susceptible to such influences (Hunt, Blease, and Geraghty 2022). While biomedical understanding and treatment of long Covid is crucial, and an ethically minded biopsychosocial approach may facilitate more holistic interventions, neither model can be described as holistic or structurally competent. ...
... This concept describes how disablism impacts on psycho-emotional well-being through manifestations of oppression sustained by the psychosocial imaginary and cultural representations of disability (Reeve 2006;Reeve 2020). Psycho-emotional disablism may manifest as marginalisation and epistemically unjust treatment of chronically ill patient groups within healthcare (see Blease, Carel, and Geraghty 2017;Buchman, Ho, and Goldberg 2017), whereby the detrimental impact on patient well-being has also been documented (Bê 2016;Geraghty and Blease 2019;De Wolfe 2012). A notable argument from within disability studies literature, which will be explored later in the article, is that structural and psychoemotional disablism may impact detrimentally on physical as well as psycho-emotional well-being, exacerbating impairment and furthering disability (see Bê 2016;Hughes and Paterson 1997). ...
Article
While critically informed approaches to medical education are increasingly advocated in literature, discussion of the potential role of disability studies in informing pedagogy and practice is largely lacking. The emergence of long Covid, alongside the strong possibility of a wave of covid-related disability, underlines an urgent need for medicine to develop more contextualised, nuanced and structurally competent understandings of chronic illness and disability. This article argues that the integration of thinking from disability studies into medical curricula offers a pathway to such understanding, informing a more equitable, holistic and patient-centred approach to practice. Further, a structurally competent, antiableist approach positions clinicians and patients as allies, working together within a structural context that constrains both parties. Such positioning may mitigate tensions within the clinical encounter, tensions that are well documented in the realm of marginalised chronic illness and disability. While the possibilities arising from a partnership between disability studies and medicine are numerous, the foci here are the social relational model of disability and the concept of psycho-emotional disablism, within a broader framework of critical disability studies. It is argued that inadequate healthcare provision and policy in the realm of long Covid can be understood as a form of structural and psycho-emotional disablism, arising from and reinforcing an ableist psychosocial imaginary permeated with neoliberal assumptions, and carrying a risk of furthering both disability and impairment. After considering long Covid through these particular lenses, the article concludes with a discussion of how a partnership between disability studies and a structurally competent approach to medical education might translate into practice.
... Exercise therapy, including aerobic exercises (e.g., walking, jogging, swimming, and cycling) and anaerobic exercises (e.g., strength and stability exercises), could improve physical function and reduce fatigue (Marques et al., 2015;Larun et al., 2017). However, some patients have expressed disappointment with GET because it can interfere with the outcome of alternative treatments and may indirectly exacerbate symptoms in patients (Goudsmit and Howes, 2017;Geraghty and Blease, 2019). Western conventional medicines such as immune modulators, antivirals, antidepressants, antibiotics, and medications to treat specific symptoms that are used for treating CFS have insufficient evidence for their efficacy and may cause serious adverse effects (Mücke et al., 2015;Smith et al., 2015;Yang et al., 2017). ...
Article
Full-text available
Objectives: This meta-analysis aimed to assess the effectiveness and safety of Chinese herbal medicine (CHM) in treating chronic fatigue syndrome (CFS). Methods: Nine electronic databases were searched from inception to May 2022. Two reviewers screened studies, extracted the data, and assessed the risk of bias independently. The meta-analysis was performed using the Stata 12.0 software. Results: Eighty-four RCTs that explored the efficacy of 69 kinds of Chinese herbal formulas with various dosage forms (decoction, granule, oral liquid, pill, ointment, capsule, and herbal porridge), involving 6,944 participants were identified. This meta-analysis showed that the application of CHM for CFS can decrease Fatigue Scale scores (WMD: –1.77; 95%CI: –1.96 to –1.57; p < 0.001), Fatigue Assessment Instrument scores (WMD: –15.75; 95%CI: –26.89 to –4.61; p < 0.01), Self-Rating Scale of mental state scores (WMD: –9.72; 95%CI:–12.26 to –7.18; p < 0.001), Self-Rating Anxiety Scale scores (WMD: –7.07; 95%CI: –9.96 to –4.19; p < 0.001), Self-Rating Depression Scale scores (WMD: –5.45; 95%CI: –6.82 to –4.08; p < 0.001), and clinical symptom scores (WMD: –5.37; 95%CI: –6.13 to –4.60; p < 0.001) and improve IGA (WMD: 0.30; 95%CI: 0.20–0.41; p < 0.001), IGG (WMD: 1.74; 95%CI: 0.87–2.62; p < 0.001), IGM (WMD: 0.21; 95%CI: 0.14–0.29; p < 0.001), and the effective rate (RR = 1.41; 95%CI: 1.33–1.49; p < 0.001). However, natural killer cell levels did not change significantly. The included studies did not report any serious adverse events. In addition, the methodology quality of the included RCTs was generally not high. Conclusion: Our study showed that CHM seems to be effective and safe in the treatment of CFS. However, given the poor quality of reports from these studies, the results should be interpreted cautiously. More international multi-centered, double-blinded, well-designed, randomized controlled trials are needed in future research. Systematic Review Registration : [ https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022319680 ], identifier [CRD42022319680].
... These recommendations may be appropriate for the patients in our study, as the amount of time it took to confirm the ME/CFS diagnosis was important to the patients, as was the experience of being taken seriously regarding all the symptoms the patient experienced. A recent synthesis of patients' reporting of harm in the medical encounter concludes that conflicts between healthcare professionals and patients might be avoided if a patient-centred approach is taken, allowing for the patient's narrative to guide care [13]there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. ...
... There have been some suggestions that syncopaltype AEs may be more common with Gardasil than with Cervarix, which contain different immunogens and excipients [27]. Although cautions have been sounded for some time about prematurely attributing medically unexplained symptoms to psychosomatism, e.g., [28][29][30][31], one study found no association between the post-HPV-vaccination (PHPVV) development of "somatoform" and "neurocognitive" syndromes with cell-mediated hypersensitivity to aluminum [32], a key adjuvant in all the HPV vaccine products marketed to date. ...
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For nearly a decade, case reports and series have emerged regarding dysautonomias—particularly postural orthostatic tachycardia syndrome (POTS)—presenting soon after vaccination against human papilloma virus (HPV). We too have observed a number of such cases (all following vaccination with the Gardasil product), and have found several to have detectable mast cell activation syndrome (MCAS) as well as histories suggesting that MCAS was likely present long before vaccination. We detail 11 such cases here, posing a hypothesis that HPV vaccination (at least with the Gardasil product) may have triggered or exacerbated MCAS in teenagers previously not recognized to have it. Only recently recognized, MCAS is being increasingly appreciated as a prevalent and chronic multisystem disorder, often emerging early in life and presenting with inflammatory ± allergic phenomena following from known mast cell (MC) mediator effects. There is rising recognition, too, of associations of MCAS with central and peripheral neuropathic disorders, including autonomic disorders such as POTS. Given the recognized potential for many antigens to trigger a major and permanent escalation of baseline MC misbehavior in a given MCAS patient, we hypothesize that in our patients described herein, vaccination with Gardasil may have caused pre-existing (but not yet clinically recognized) MCAS to worsen to a clinically significantly degree, with the emergence of POTS and other issues. The recognition and management of MCAS prior to vaccinations in general may be a strategy worth investigating for reducing adverse events following HPV vaccinations and perhaps even other types of vaccinations.
... Which also leads to high satisfaction among service receiver from the service provider through bridging the gap between them. This model also responds to the epidemic, pandemic [13], and post-acute services to plan rehabilitation [14] pathways in many communicable diseases as well as in chronic pain [15,16]. ...
Article
This study uses machine learning and natural language processing tools to examine the language used by healthcare professionals on a global online forum. It contributes to an underdeveloped area of knowledge, that of physician attitudes toward their patients. Using comments left by physicians on Reddit’s ”Medicine” subreddit (r/medicine), we test if the language from online discussions can reveal doctors’ attitudes toward specific medical conditions. We focus on a set of chronic conditions that usually are more stigmatized and compare them to ones well accepted by the medical community. We discovered that when comparing diseases with similar traits, doctors discussed some conditions with more negative attitudes. These results show bias does not occur only along the dimensions traditionally analyzed in the economics literature of gender and race, but also along the dimension of disease type. This is meaningful because the emotions associated with beliefs impact physicians’ decision making, prescribing behavior, and quality of care. First, we run a binomial LASSO-logistic regression to compare a range of 21 diseases against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), depression, and the autoimmune diseases multiple sclerosis and rheumatoid arthritis. Next, we use dictionary methods to compare five more chronic diseases: Lyme disease, Ehlers-Danlos syndrome (EDS), Alzheimer’s disease, osteoporosis, and lupus. The results show physicians discuss ME/CFS, depression, and Lyme disease with more negative language than the other diseases in the set. The results for ME/CFS included over four times more negative words than the results for depression.
Article
A particular application of the biopsychosocial model is associated in peer-reviewed literature and patient testimony with harms done to chronically ill and disabled people. These harms derive from an empirically unsubstantiated, neoliberal narrative emphasising the role of personal responsibility and effort in ‘recovery’ from ill-health, ignoring socio-structural contributors to chronic illness and disability. Notably, this biopsychosocial model ignores the health-related impact of welfare and disability insurance reforms which the model has been employed to justify. The model and associated interests can thus be recognised as socio-structural phenomena that should be acknowledged in any truly holistic biopsychosocial approach to chronic illness and disability. A critically informed and reflexive approach to biopsychosocial theorising would allow a more holistic and nuanced understanding of chronic illness and disability, with implications for health and social policy that underline and address what ails society as opposed to what is ‘wrong’ with the individual.
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Chronic fatigue syndrome, conceptualised as per (bio)psychosocial discourse, can be understood as a political construction, serving actors and structures associated with welfare reform, to the detriment of patients.
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Whilst parallels have been drawn between Long Covid and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), there is a well-documented history of negative stereotyping and marginalisation of patients with ME/CFS. A socio-politically oriented comparison of scientific, clinical and societal responses to Long Covid and ME/CFS is thus important to prevent similar harms arising among Long Covid patients. We identify four reasons for injustices in the treatment of ME/CFS patients, and discuss the risk of Long Covid following a similar trajectory. We conclude with policy and practice recommendations to help prevent such injustices arising again, including consideration of critical reflexivity in medical education.
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This is the protocol for a review and there is no abstract. The objectives are as follows: To assess the effects of non-pharmacological interventions for somatoform disorders (specifically somatisation disorder, undifferentiated somatoform disorder, somatoform disorders unspecified, somatoform autonomic dysfunction, pain disorder and alternative somatoform diagnoses proposed in literature) and MUPS in adults in comparison with treatment as usual, waiting list controls, attention placebo, psychological placebo and other psychological or physical therapies.
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Full-text available
Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients' symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey ( n = 1428) and compare our findings with those from comparable patient surveys ( n = 16,665), using a mix of descriptive statistics and regression analysis modelling. Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).
Article
Full-text available
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.
Article
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Abstract Geraghty (2016) outlines a range of controversies surrounding publication of results from the PACE trial and discusses a freedom of information case brought by a patient refused access to data from the trial. The PACE authors offer a response, writing “Dr Geraghty’s views are based on misunderstandings and misrepresentations of the PACE trial” (White et al., 2017). This paper draws on expert commentaries to further detail the critical methodological failures and biases identified in the PACE trial, that undermine the reliability and credibility of the major findings to emerge from this trial.
Article
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BACKGROUND: Publications from the PACE trial reported that 22% of chronic fatigue syndrome patients recovered following graded exercise therapy (GET), and 22% following a specialised form of CBT. Only 7% recovered in a control, no-therapy group. These figures were based on a definition of recovery that differed markedly from that specified in the trial protocol. PURPOSE: To evaluate whether these recovery claims are justified by the evidence. METHODS: Drawing on relevant normative data and other research, we critically examine the researchers’ definition of recovery, and whether the late changes they made to this definition were justified. Finally, we calculate recovery rates based on the original protocol-specified definition. RESULTS: None of the changes made to PACE recovery criteria were adequately justified. Further, the final definition was so lax that on some criteria, it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’. When recovery was defined according to the original protocol, recovery rates in the GET and CBT groups were low and not significantly higher than in the control group (4%, 7% and 3%, respectively). CONCLUSIONS: The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.
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