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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
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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Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial
model: a review of patient harm and distress in the medical encounter
Keith J. Geraghty
and Charlotte Blease
Division of Health Services Research and Population Health, University of Manchester, Centre for Primary Care, Manchester, UK;
of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA
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
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-
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 doctors’and patients’perspectives 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 framework’applied 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,
Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant
‘patient-centred’approaches that give greater prominence to the patient narrative and experience
Received 28 March 2017
Revised 22 May 2018
Accepted 22 May 2018
Chronic fatigue syndrome;
Estimates suggest around 250,000 people suffer from Myalgic
Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) in the
United Kingdom . A general practice with 10,000 patients is
likely to include up to 30–40 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 . 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 [9–11]. 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’. This divergence
CONTACT Keith J. Geraghty email@example.com 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
of models coincided with a general trend in medicine to
explain ‘medically unexplained illnesses’using the principles of
biopsychosocial medicine , patient-centred medicine [14,15],
and a systems theory-based approach ; moving from biomed-
ical models of pathological disease, to a biopsychosocial model of
illness . Within the biopsychosocial model, doctors are
required to consider three core factors; biological, psychological,
and social . 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
‘perpetuated’by ‘dysfunctional illness beliefs’and ‘sickness behav-
iors’[22,12], embedded within a social and health system that
sustains illness seeking behaviors . 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’. Doctors are encouraged to
apply the biopsychosocial framework and to offer psychotherapy
to address unwanted cognitions and behaviors . 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”. This connection between thoughts, behavior, and
illness, is a key feature of the BPS-framework model of CFS
[19–21,24]. 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 model’as a vision of
more integrated and equitable medicine . The utilization of
the biopsychosocial model is based on an intrinsic belief that it
will deliver positive benefits for patients with ME/CFS .
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 [29–32]. 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 . The
biopsychosocial model is based on the notion that the inclusion
of all [bio-psycho-social], improves on narrowly focused
reductionist biomedical models . 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”. 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 , 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.
We conducted a detailed search of medical databases, including
MEDLINE/PubMed, PsycINFO, Web of Science and Cochrane Library
and other databases (1980–2017), 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 , allowing for study of
the patient perspective in the medical encounter . We widened
our search to identify relevant publications where ME/CFS patients
‘doctor–patient relationships’following 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 (1–7 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-
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 . 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 role’or ‘might
teach patients to stay sick’. The biopsychosocial literature
warns of the dangers of ‘medicalizing’unexplained symptoms
, with the assertion that giving a medical diagnosis may be
bad for patients [42–44]. Yet, patients with ME/CFS often report
that getting a diagnosis is the single most helpful event for them
in managing their condition , and NICE guidelines emphasize
the importance of an early diagnosis . Research has shown that
2K. J. GERAGHTY AND C. BLEASE
a delay in diagnosis has potentially harmful effects . 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 . The withholding of, or delay-
ing, a diagnosis has profound medical, financial, social, and psy-
cho-emotional implications for patients with ME/CFS [45–48].
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 .
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 patients’suffering .
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 WHO’s 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 Wessely’s outline of a biopsychosocial model of
CFS and Maes and Twisk illustrate how the biomedical model of
ME/CFS conflicts with the biopsychosocial model . 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
. 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 . In a
follow-up survey of patients assessed in-clinic, 43% had an alter-
native medical or psychiatric diagnosis . 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 . 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
The biopsychosocial framework is increasingly used to assess ME/
CFS patients’right 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
; has helped shape NICE guidelines for ME/CFS ; and has
been used to design guidelines for medical insurance claims
assessors in the Netherlands [56–58]. In this regard, BPS perspec-
tives are being used in assessing patients’rights 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  and a growing number of researchers theor-
ize that ME/CFS might be a neuro-immunological condition
[60–63]: 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 . 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)
; 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 . Raine et al. found that UK GPs
negatively stereotype ME/CFS patients as ‘combative’,‘hostile’,or
‘difficult’. 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 [69–72]. A Swedish study of
physicians’attitudes to CFS found that physicians often down-
grade the seriousness of this illness to ‘non-disease’status and
view patients as being ‘illness focused’,‘demanding’, and
‘medicalising’. Given community-based doctors have limited
knowledge of ME/CFS  and doctors display high levels of skep-
ticism in this illness domain , it is unsurprising that many
patients with ME/CFS report problematic clinical interactions
[29–31,76]. Patient surveys conducted by patient organizations
confirm high levels of patient dissatisfaction in the medical
encounter. An Action for ME [AfME] survey [n¼2338]  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 . However, studies show
that many ME/CFS patients turn to peer groups for support and
to compensate for poor medical care . 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 patients’hostility
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 . Low levels of medical support, difficulties
accessing social care and benefits, and challenges to patients’per-
sonality traits and peer support systems, represent what Illich
might term individual, social and cultural harms .
High levels of patient dissatisfaction with the quality of
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 [81–83]. Dissatisfaction
is not simply related to problems getting a correct diagnosis, but
includes doctors’reluctance to perform tests and neglecting to
deal with patients’complaints [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 . 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 . 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 ‘poor’or ‘very poor’and 22% received no medical care at
all . 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”.
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 .
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 . These fig-
ures are especially concerning given ME/CFS is a debilitating con-
dition that often greatly impacts on patients’quality of life [87,88],
leaving many vulnerable to secondary depression  and suicide
risk . 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 . This concern is
echoed by observations from van Oosterwijck et al. , 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 theory’that draws a relationship between biological
dysfunction, over-exertion and fatigue . 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 . While another
systematic review found inconsistent evidence of modest benefit
using CBT versus control treatments and more consistent evidence
of benefit using GET , 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 .
However, in PACE reported recovery had little impact on social
welfare benefit claims, health care usage, or rates of return to
employment . 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 , 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 . This discrepancy between reported
improvements in subjective ratings of ‘fatigue’and ‘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
nez et al.  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 .
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 . 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 . 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 . This contrasts with
clinical trials that report CBT and GET to be safe treatments pro-
ducing no serious adverse outcomes [106–108]. 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 .
Challenges to the patient narrative and experience
We note that a central feature of the biopsychosocial framework
in ME/CFS is to challenge patients’illness 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 beliefs’within the BPS model of CFS
[12,13,19,21]. The clinician’s role is to offer a cognitive-behavior
model to address ‘perpetuating’factors or ‘unwanted cognitions’
[12,19–24]. 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
[104,105,112–115]. 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 patients’beliefs 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 . 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 patients’feelings of injustice, epistemic and
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 patients’experi-
ences . For example, patients’poor responses to CBT and
GET conflict with doctors’promotion of CBT and GET as safe and
effective treatments. In clinical practice, family doctors may pre-
sent a biopsychosocial model rationale of ME/CFS , with CBT/
GET professed as the only viable treatment options [10,13]. For
patients who adhere to their doctor’s‘authority’, 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 doctor–patient interactions, opt out of traditional
medicine in search of alternative therapies [30–32]. 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 [129–132]. 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
. Finally, collectively ME/CFS patients may perceive that the
medical community is promoting inaccurate descriptions of their
illness in medical publications and the media . 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
The biopsychosocial model of ME/CFS (commonly cited in the
literature) proposes that the illness is, in part, a psychosomatic dis-
order, where patients’symptoms 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 illness’category and refer patients to
CBT clinics [IAPT guidelines] . 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, CBT–GET are not cura-
tive treatments. In contrast, the US Institute of Medicine categorize
ME/CFS as a ‘biological illness’ and the US National Institutes
of Health point to immunologic and inflammatory pathology as
important features of ME/CFS . The incumbent biopsychosocial
model of ME/CFS is arguably skewed towards the ‘psycho-social’
. 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 [12,19–25]. 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 patients’actions and thoughts, whereas the
biomedical model asserts that symptoms are a direct result of bio-
logical dysfunction, often triggered by infection . The two mod-
els are incongruent and hamper progress in understanding the
illness and treatment development .
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 voice’is
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 . 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
patient’s 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 . There
appears to be incongruence between the wants and needs of
many ME/CFS patients and the treatments offered under the biop-
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 1–7 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 patients’reports of distress
and dissatisfaction. The justification for CBT and exercise therapy
originates from a BPS model of ME/CFS [12,19–26]. 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 patients’rejection 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 Engel’s 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 . 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.
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 iatrogenesis’that 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
patients’understanding 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.
While the etiology of ME/CFS remains unclear, the ‘first do no
harm’principle 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 patients’concerns and involving
patients in decision making, may avoid the distress, isolation, and
iatrogenic harm many ME/CFS sufferers report . Nassir
Ghaemi  suggests that Karl Jasper’s‘method-based medicine,’
or William Olsen’s‘medical 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 . 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 . 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.
Dr. Geraghty has received a grant from the UK ME Association to
study patients’experiences of treatments.
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