An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis

Abstract

Background and Objectives: There is some evidence that knowledge and understanding of ME among doctors is limited. Consequently, an audit study was carried out on a group of hospital doctors attending a training event to establish how much they knew about ME and their attitudes towards it. Materials and Methods: Participants at the training event were asked to complete a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were tabulated, proportions selecting available options determined, 95% confidence limits calculated, and the significance of associations determined by Fisher’s exact test. Results: Few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. None of the respondents who had had teaching or prior experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME was at least in part psychological. Most participants responded correctly to a series of propositions about the general epidemiology and chronicity of ME. There was little knowledge of definitions of ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced as they were incorrect on the nature of ME, its diagnostic criteria and its treatment. Conclusion: This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless, participants recognised a need for further training and indicated a wish to participate in this. It is strongly recommended that factually correct and up-to-date medical education on ME be made a priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated following a period of medical education

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medicina
Article
An Audit of UK Hospital Doctors’ Knowledge and Experience
of Myalgic Encephalomyelitis
Keng Ngee Hng 1, *, Keith Geraghty 2and Derek F. H. Pheby 3


Citation: Hng, K.N.; Geraghty, K.;
Pheby, D.F.H. An Audit of UK
Hospital Doctors’ Knowledge and
Experience of Myalgic
Encephalomyelitis. Medicina 2021,57,
885. https://doi.org/10.3390/
medicina57090885
Academic Editor:
Saraschandra Vallabhajosyula
Received: 21 July 2021
Accepted: 24 August 2021
Published: 27 August 2021
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Attribution (CC BY) license (https://
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4.0/).
1ST7 General Internal Medicine and Gastroenterology (Ret), Doctors with M.E., Office 7,
37-39 Shakespeare Street, Southport PR8 5AB, UK
2Centre for Primary Care, Division of Population Health, Health Services Research and Primary Care,
University of Manchester, Manchester M13 9PL, UK; keithgeraghty2@gmail.com
3Society and Health, Buckinghamshire New University, High Wycombe HP11 2JZ, UK;
derekpheby@btinternet.com
*Correspondence: hng@doctorswith.me
Abstract:
Background and Objectives: There is some evidence that knowledge and understanding
of ME among doctors is limited. Consequently, an audit study was carried out on a group of
hospital doctors attending a training event to establish how much they knew about ME and their
attitudes towards it. Materials and Methods: Participants at the training event were asked to complete
a questionnaire, enquiring about prior knowledge and experience of ME and their approaches to
diagnosis and treatment. A total of 44 completed questionnaires were returned. Responses were
tabulated, proportions selecting available options determined, 95% confidence limits calculated, and
the significance of associations determined by Fisher’s exact test. Results: Few respondents had any
formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and
most lacked confidence in managing it. None of the respondents who had had teaching or prior
experience of ME considered it a purely physical illness. Overall, 91% of participants believed ME
was at least in part psychological. Most participants responded correctly to a series of propositions
about the general epidemiology and chronicity of ME. There was little knowledge of definitions of
ME, diagnosis, or of clinical manifestations. Understanding about appropriate management was very
deficient. Similarly, there was little appreciation of the impact of the disease on daily living or quality
of life. Where some doctors expressed confidence diagnosing or managing ME, this was misplaced
as they were incorrect on the nature of ME, its diagnostic criteria and its treatment. Conclusions:
This audit demonstrates that most doctors lack training and clinical expertise in ME. Nevertheless,
participants recognised a need for further training and indicated a wish to participate in this. It is
strongly recommended that factually correct and up-to-date medical education on ME be made a
priority at undergraduate and postgraduate levels. It is also recommended that this audit be repeated
following a period of medical education.
Keywords:
myalgic encephalomyelitis; chronic fatigue syndrome; ME/CFS; ME; medical education;
postgraduate education
1. Introduction
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multi-
system illness defined by its clinical characteristics rather than by its underlying pathology,
which remains obscure. These characteristics include severe incapacitating fatigue, post
exertional malaise and other symptoms including cognitive dysfunction, orthostatic in-
tolerance, muscle pain and sleep disturbances, with substantial reductions in functional
activity and quality of life [
1
]. The severity, clinical course and duration of the illness are
very variable. It most frequently occurs in the 20–50 age group and is more common in
women than in men [
2
–
4
]. It is frequently asserted that there are some 250,000 sufferers
Medicina 2021,57, 885. https://doi.org/10.3390/medicina57090885 https://www.mdpi.com/journal/medicina

Medicina 2021,57, 885 2 of 19
in the UK [
5
]. If this is correct, there may be in the region of two million patients across
Europe and over one million sufferers in the US [6].
A major problem faced by patients with ME/CFS is that many doctors do not recognise
the condition as a genuine clinical entity. Disbelief is widespread, and many doctors
lack knowledge and understanding of the illness. A recent literature review found that
between a third and a half of GPs refused to accept the reality of the condition, that a
similar proportion of patients were dissatisfied by the quality of primary care that they
had received, and that similar proportions were reported across various geographical
locations and had changed little over many years [
7
]. A study of the perceptions of
European ME/CFS specialists concerning GP knowledge and understanding of the illness
demonstrated serious misgivings about shortcomings, widely across Europe [
8
], and this is
confirmed by a German paper that reported low satisfaction with medical care and that
patients with ME/CFS are medically underserved [
9
]. It is also consistent with reports that
individuals with ME/CFS in the US are medically underserved [
10
]. It has been argued that
ME patients suffer delegitimation of their illness experience through their condition being
defined as nonexistent or psychosomatic, leading to their being shamed or stigmatised as
having a psychological disorder [
11
]. A US survey of emergency department attenders
with ME/CFS found that 42% of such attenders were dismissed as having psychosomatic
problems, and that staff lacked knowledge of the condition [
12
], while another American
survey of patients with ME/CFS and other diseases of the neuro-endocrine-immune system
including fibromyalgia and chronic Lyme disease found that 54.4% of respondents reported
dissatisfaction with their medical care due to lack of training on the part of their physicians.
In total, 71% consulted four or more physicians, and 63% took at least two years, before
receiving a correct diagnosis, indicating a need for more education about these conditions
in medical school, and for multi-system disease specialty clinics [13].
In this paper, the term ME (myalgic encephalomyelitis) is used in reporting our
research findings, rather than the more usual ME/CFS, because that was the term used in
the original training session on which this report is based. The term ME/CFS is used in
reporting the relevant research literature, as the two terms are effectively synonymous.
As outlined above, it has long been the experience of patients with myalgic en-
cephalomyelitis (ME) that their doctors have little knowledge and understanding of the
condition and are largely unable to help. Worse, many report that their doctors do not
believe their illness is real, resulting in lack of medical support. Examination of sample
medical curricula in 2018 in the UK confirmed that ME was not in the syllabus at either
undergraduate or postgraduate levels, and this is consistent with a report demonstrating
serious inadequacies in undergraduate teaching about ME/CFS, in which 64% of respond-
ing medical schools acknowledged the need for improvement [
14
], and also with an earlier
report from the US in which only 28% of responding medical schools met an adequate
standard of coverage in their curricula [15].
It is therefore quite conceivable that patients’ widely reported impressions are well
founded, so to investigate this, we undertook an ad hoc opportunistic audit of hospital
doctors’ knowledge and understanding. This study appears to be the first attempt in
the United Kingdom to assess knowledge and understanding of ME among a group of
hospital doctors.
2. Methods
In 2018, we conducted an audit of hospital doctors attending a training event. Tradition-
ally, response rates from physician-knowledge surveys are often low. As such, approaching
doctors in person presented an informal setting and rapid way to gather responses.
All physicians in the region who were training in general internal medicine at ST3-8
level were required to attend this mandatory training day. Only those who were on-
call or on leave would have been excused. There were in the region of one hundred
attendees. Most of these GIM trainees were also training in another medical specialty,
such as cardiology, respiratory medicine, endocrinology, nephrology, gastroenterology,

Medicina 2021,57, 885 3 of 19
neurology, rheumatology, haematology, dermatology, infectious diseases, palliative care,
oncology, geriatrics or acute medicine.
This particular training day was unique in that a short introductory lecture on ME
was scheduled. Other lectures were on unrelated topics. We developed a pre-planned
questionnaire with input from experts in the field (Appendix A). These were handed
out and returned on the same day. It was specified that answers should be based on
participants’ knowledge before the lecture on ME. The questionnaire asked about prior
knowledge and experience of ME, including previous education, confidence in managing
the condition, and understanding of its epidemiology and pattern of chronicity. It also
enquired about participants’ approaches to diagnosis and management, the perceived
impact of the illness, and whether or not participants were interested in having additional
education on ME.
A total of 44 completed questionnaires were returned. Responses were tabulated,
proportions selecting available options determined, and 95% confidence limits calculated.
Where relevant, associations between responses were presented in 2
×
2 tables, and the
significance of such associations determined by Fisher’s exact test.
3. Results
3.1. Prior Teaching and Experience of ME, Doctors’ Confidence
Only 27% of respondents reported having previously received formal teaching on
ME. Most of this was in the form of undergraduate or postgraduate lectures. 70% reported
having had some experience of ME patients. This was in GP clinics, specialty clinics, or in
hospitals. Twenty-three percent had had neither formal teaching on ME nor any experience
of it.
A total of 89% of respondents admitted not knowing how to diagnose ME, which
is very unsatisfactory. 93% did not feel confident dealing with ME patients. Only two
respondents (5%) said they knew how to diagnose ME and also felt confident managing
ME patients. However, one of them annotated “ish” against the answers indicating he/she
was not fully confident, and the other annotated “If by ME chronic fatigue syndrome is
meant,” indicating he/she did not understand the difference between the terms. These
results are summarised in Table 1.
Table 1. Prior teaching and experience of ME, confidence to diagnose and manage it.
Number of
Respondents
Responding ‘Yes’ 95% Confidence
Interval
Number % Total
Have received some
formal teaching on ME 44 12 37.9 16.3–41.9
Have seen some ME
patients 44 31 70.5 55.8–81,8
I know how to
diagnose ME 44 5 11.4 5.0–24.0
I feel confident dealing
with ME patients 44 3 6.8 2.4–18.2
There was a significant association between being confident about diagnosing ME and
feeling confident about dealing with ME patients (p= 0.029). These results are summarised
in Table 2.

Medicina 2021,57, 885 4 of 19
Table 2. Relationship between confidence in diagnosing ME and confidence in managing it.
I Feel Confident Dealing with ME Patients Total
I know how to diagnose ME Yes No
Yes 2 3 5
No 1 38 39
Total 3 41 44
by Fisher’s exact test) = 0.029.
Doctors’ confidence was cross tabulated against key indicators of understanding,
diagnostic ability and management. Of the six respondents who felt they knew how to
diagnose ME or felt confident dealing with ME patients (i.e., five who said they knew how
to diagnose ME and three who said they felt confident dealing with ME patients, or six in
total as two were confident in both), all thought ME was partly or wholly psychological,
and none selected the right combination of diagnostic criteria. All thought ME could be
treated with graded exercise therapy (GET) and four thought it could be treated with
cognitive behavioural therapy (CBT) to help patients get out of the sick role. Therefore, it
appears that the greater the doctor’s confidence, the worse was his or her understanding
of the illness and diagnostic skill. These observations are interesting, though they do not
reach statistical significance since numbers were small.
On the central question of whether or not ME was thought to be entirely or in part
a psychological or psychosomatic illness, respondents were given the options of psycho-
logical/psychosomatic or physical illness, and they were allowed to tick both (i.e., with a
substantial psychological element). The correct answer, selected by only four respondents
(9.1%), was a physical illness only, while 36 out of the 44 respondents (81.8%) believed ME
was partly or entirely psychological.
The responses regarding whether participants had received prior teaching on ME
or had seen ME patients were cross tabulated against responses to the question as to
whether ME was thought to be a physical illness or at least in part psychological. All four
respondents who understood that ME is a real, physical illness are among the ten who had
received no formal teaching on ME, nor ever seen any ME patients (i.e., 40%), compared to
0% of respondents who had received previous formal teaching on ME or had seen any ME
patients (Table 3). This was a very strong association (p= 0.0015). This begs the question as
to what they were being taught on ME, and what they were told by their colleagues when
they came across ME patients in the clinical setting.
Table 3. Effect of previous teaching or experience on understanding of ME.
Thinks ME Is at Least in Part Psychological Knows ME Is Physical Total
Had received teaching on ME
or has seen some ME patients 31 0 34
(3 don’t know)
Not had teaching on ME and
not seen any ME patients 5 4 10
(1 don’t know)
Total 36 4 44
p(by Fisher’s exact test) = 0.0002.
3.2. General Epidemiology
Respondents performed fairly well on questions relating to the general epidemiology
and chronicity of the illness. A series of propositions were put to respondents, who were
asked to identify whether they were true or false. Correct responses ranged from 56.8% to
97.7% (average 82.3%). However, it was a matter of some concern that around a third of
respondents considered the statement “children with ME miss school because their parents
support their sick role and this should be discouraged” to be correct (Table 4).

Medicina 2021,57, 885 5 of 19
Table 4. Responses to propositions regarding the nature and epidemiology of ME.
Proposition Correct Answer Number of Respondents Respondents Giving Correct Answer 95% Confidence Interval (%)
Number % Total
We have national guidelines on ME. True 44 25 56.8 42.2–70.3
ME is rare. False 44 31 70.5 55.8–82.8
ME affects more women than men. True 44 40 90.9 78.8–96.4
ME can affect children. True 44 36 81.8 68.0–90.4
ME resolves within 6 months. False 44 41 93.2 81.8–97.7
ME causes chronic disability. True 44 42 95.5 84.9–98.7
If they do not improve it’s because
they are not trying hard enough. False 44 40 90.9 78.8–96.4
Children with ME can miss long
periods of school. True 44 43 97.7 88.2–99.6
Children with ME miss school
because their parents support their
sick role and this should be
discouraged.
False 44 28 63.6 48.9–76.2

Medicina 2021,57, 885 6 of 19
3.3. Definitions and Clinical Understanding
Respondents performed poorly on overall categorisation, with 66% of them wrongly
believing that ME belonged in the class of illness called medically unexplained symptoms
and 59% of them not knowing the difference between ME, chronic fatigue syndrome and
post viral fatigue syndrome. On the manifestations and impact of the illness, there was
widespread appreciation that the illness was painful, but it was not generally appreciated
that ME could affect all body systems and could be lethal. Nor was it appreciated that
ME can be severely disabling. The approach to management was equally misguided,
with only two respondents (4.5%) disagreeing with the false proposition that “patients
need to think positive and build up their strength with exercise or gradually increasing
activity.” (Table 5).
3.4. Diagnostic Process and Diagnostic Criteria
Respondents were asked which part of the process was the most important in making
a diagnosis of ME, which is a careful history. In answer to “ME is mainly diagnosed
with
. . .
”, 40 (90.9%) of our 44 participants selected a careful history, of which 31 (70.5%)
also selected physical examination and/or investigations, and 17 (39%) also selected a
psychiatric history. Thus, only 23 (52.3%) participants selected the correct combination of
a careful history without a psychiatric history, with or without physical examination or
investigations. (Table 6).
Respondents were then presented with a number of propositions regarding clinical
features required for a diagnosis of ME to be made. Some of these propositions were true
and some were false. Thus, 38 participants (86.3%; 95% confidence interval: 73.3–93.6%)
believed, erroneously, that six months of fatigue was necessary for diagnosis. A significant
39% of respondents did not realise that post exertional malaise is an essential requirement
for the diagnosis of ME. Psychiatric features are not part of the diagnosis, but only 24
of 44 respondents recognised this (54.5%; 95% confidence interval 40.1–68.3). A total of
17 participants
selected psychiatric symptoms, signs of anxiety or depression, or both, and
three participants failed to select any answer. Only six of 44 respondents selected the
correct combination of features (i.e., post exertional malaise and symptoms from multiple
systems, without psychiatric features (i.e., 13.6%; 95% confidence interval 6.4–26.7). The
results are detailed in Table 7.
3.5. Disability, Impact and Clinical Manifestations of ME
When asked about the level of disability suffered by ME patients, 64% of respondents
under-estimated the level of disability compared to other common or serious illnesses
(Table 8). Only 36% of respondents correctly recognised that ME patients can be as disabled
as patients with all seven of the other conditions named. These are multiple sclerosis,
cancer, advanced HIV, chronic respiratory disease, end stage renal failure, heart failure
and a broken leg. In total, 45% of respondents over-estimated the ability of ME patients
to stay in work (Table 5). The vast majority (97.7%, 43 out of 44, 95% confidence interval
88.2–99.6%) did, however, recognise that children with ME can miss long periods of school
(Table 4). The majority of respondents (79.6%, 35 out of 44, 95% confidence interval 65.5–
88.9%) indicated that ME is painful but only a quarter of respondents (25.0%, 11 out of 44,
95% confidence interval 14.6–39.4%) knew that ME can kill (Table 5).

Medicina 2021,57, 885 7 of 19
Table 5. Respondents’ knowledge of definitions and clinical understanding.
Question Correct Answer Number of Respondents Respondents Giving Correct Answer 95% Confidence Interval (%)
Number % Total
Is ME is a physical illness or psychological? Physical 44 4 9.1 3.6–21.1
ME belongs in the class of illness called Medically
Unexplained Symptoms. True or false? False 44 12 27.3 16.3–41.9
Myalgic Encephalomyelitis, Chronic Fatigue
Syndrome and Post Viral Fatigue Syndrome all
mean the same thing. True or false?
False 44 18 18.2 27.7–55.6
ME is painful. True or false? True 44 35 79.5 65.5–88.9
ME is as disabling as: MS, cancer, advanced HIV,
chronic respiratory disease, end stage renal
failure, heart failure, broken leg. True or false?
All 7 conditions 44 16 36.4 23.7–51.3
Which of the following body systems can ME
affect? Nervous system, cardiovascular system,
endocrine system, musculoskeletal system,
gastrointestinal system, immune system,
cellular metabolism.
All 7 body systems 44 13 29.5 18.2–44.2
What proportion of ME patients is able to work? Less than half 44 22 50.0 35.8–64.2
ME doesn’t kill. True or false? False 44 11 25.0 14.6–39.4
Patients need to think positive and build up their
strength with exercise or gradually increasing
activity. True or false?
False 44 2 4.5 1.2–15.4

Medicina 2021,57, 885 8 of 19
Table 6. Respondents’ views on diagnostic methods.
Correct
Answer
Number of
Respondents
Respondents Making Correct Choice 95% Confidence
Interval
Number % Total
ME is mainly diagnosed with: (multiple options allowed)
Careful history Yes 44 40 90.9 78.8–96.4
Psychiatric history No 44 27 61.4 46.6–74.3
Right combination (careful
history without
psychiatric history)
44 23 52.3 37.9–67.3
Table 7. Diagnostic requirements.
Proposition True or False? Number of
Respondents
Correct Answer Selected? 95% Confidence
Interval
Number % Total
The diagnosis of ME requires:
•Fatigue lasting at
least 6 months False 44 3 6.8 2.4–18.2
•Psychiatric
symptoms (i) False 44 30 68.2 53.4–80.9
•Post Exertional
Malaise (PEM) True 44 27 61.4 46.6–74.3
•Symptoms from
multiple systems True 44 31 70.5 55.8–81.8
•Signs of anxiety or
depression (ii) False 44 26 59.1 44.4–72.3
•Physical signs False 44 28 63.6 48.9–76.2
Combination Number of
Respondents
This Combination Selected? 95% Confidence
Interval
Number % Total
Don’t know (i.e., no feature selected) 44 3 6.8 2.4–18.2
Any psychiatric feature-(i) or (ii) selected 44 17 38.6 25.7–53.4
Correct combination (PEM, symptoms from
multiple systems, no psychiatric features) 44 6 13.6 6.4–26.7

Medicina 2021,57, 885 9 of 19
Table 8. The impact of ME—Perceived level of disability.
Total Respondents Respondents Selecting: 95% Confidence
Interval
Number % Total
Question: Patients with ME can be as disabled as patients with
(viz. multiple sclerosis, cancer, advanced HIV, chronic respiratory disease, end stage
renal failure, heart failure, broken leg).
Number of conditions in respect of
which ME is regarded as being as
disabling or more so:
0 44 4 9.1 3.6–21.2
1 44 11 25.0 14.6–39.4
2 44 3 6.8 2.4–18.2
3 44 4 9.1 3.6–21.2
4 44 3 6.8 2.4–18.2
5 44 0 0.0 -
6 44 3 6.8 2.4–18.2
All 7 (correct answer) 44 16 36.4 23.8–52.3
<7 (incorrect) 44 28 63.6 48.9–76.2
Of our respondents, 70% did not realise the breadth of manifestations and symptoms
of ME (Tables 5and 9). Seven body systems very commonly affected in ME were listed,
and only 30% of respondents indicated that ME can affect all seven body systems, i.e., the
nervous system, the cardiovascular system, the endocrine system, the musculoskeletal
system, the gastrointestinal system, the immune system and cellular metabolism. These
results are summarised in Table 9below:
Table 9. The Impact of ME—Perceived extent of involvement of body systems.
Total Respondents Respondents Selecting: 95% Confidence
Interval
Number % Total
Question: ME can affect . . .
(nervous system, cardiovascular system, endocrine system, musculoskeletal system, gastrointestinal system, immune system,
cellular metabolism)
Number of body systems
thought to be capable of being
affected by ME:
0 44 4 9.1 3.6–21.2
1 44 1 2.3 0.4–11.8
2 44 3 6.8 2.4–18.2
3 44 7 15.9 7.9–29.4
4 44 4 9.1 3.6–21.2
5 44 4 9.1 3.6–21.2
6 44 8 18.2 9.5–32.0
All 7 (correct answer) 44 13 29.6 18.2–44.2
<7 (incorrect) 44 31 70.5 55.8–81.8

Medicina 2021,57, 885 10 of 19
3.6. Treatment
Almost all (98%) respondents believed that graded exercise therapy (GET) is a suitable
treatment for ME. In addition, 61% believed that cognitive behavioural therapy (CBT),
designed to assist patients to rethink their illness attributions and abandon the sick role, is
also a suitable treatment. These results are summarised in Table 10.
Table 10. Respondents’ opinions regarding specific therapies for ME.
Treatment Options
(Not Mutually Exclusive)
Number of
Respondents
Respondents Selecting Treatment 95% Confidence
Interval
Number % Total
Inappropriate therapies:
Graded exercise therapy 44 43 97.7 88.2–99.6
Cognitive behaviour therapy 44 27 62.8 47.9–75.6
Any harmful treatment
selected (GET or CBT) 44 43 97.7 88.2–99.6
Other therapies:
Antivirals 44 3 7.0 2.4–18.6
Vitamin supplements 44 7 16.3 8.1–30.0
3.7. Interest in Further Education on ME
The response to this was very positive. Participants were asked to respond to the
statement: “After today’s introductory lecture, I would like further more in-depth teach-
ing on Myalgic Encephalomyelitis.” A total of 36 doctors answered this question. The
lower response rate may relate to having had to wait until after they had had the lecture
before answering. Of those who responded, 20 said Yes, 3 said No, and 13 were Neutral.
Therefore, only a very small minority (8%) did not want further teaching on ME. Over
half of the respondents (56%) would welcome further education on ME, and the rest (36%)
are presumably amenable to it, making a total of 92% who would be amenable to further
education on ME. These results are summarised in Table 11.
Table 11. Interest in further education on ME.
Answer
Options
Total
Respondents
Number of Respondents Selecting Response 95% Confidence
Interval (%)
Number % Total
Participants requesting
further in-depth
teaching on Myalgic
Encephalomyelitis
Yes 36 20 55.6 39.6–70.5
Undecided 36 13 36.1 22.5–52.4
No 36 3 8.3 2.9–23.6
3.8. Summary of Results
Overall, there was little knowledge of definitions of ME, or of its clinical manifestations
and impact, and equally little knowledge of appropriate management of the condition, with
the consequence that patients with ME were likely to have imposed on them treatment that
is at best ineffective and at worst damaging, like graded exercise therapy. Diagnosis was
equally problematic, with little understanding of required clinical features, in particular
the essential symptom of post exertional malaise.
The effect of all this ignorance is to put patients at risk, but a saving grace is the very
positive response of participants to the prospect of further education on ME.
This audit study captures baseline data, which sadly confirms patients’ perception
that their doctors know little about ME and that many do not even believe it is real. By
measuring participants’ responses against the reasonable expectation that all participants
should get all answers correct, it enables us to highlight errors in basic fundamental

Medicina 2021,57, 885 11 of 19
understanding, such as the misconception that ME is partly or wholly psychological or
psychosomatic. It also enables the highlighting of large deficiencies in education and
clinical knowledge on ME, as well as dangerous prevailing ideas on treatment.
4. Discussion
4.1. Prior Teaching, Experience and Confidence Level
A minority of respondents had had formal teaching on ME, though most had had
some experience of ME patients. Despite this, few knew how to diagnose ME, and nearly
all lacked confidence in dealing with ME patients.
The majority of participants (82%) believed that ME is at least in part psychological,
and it is a matter of concern that 91% of respondents who had had teaching or experience
of ME thought this, when only 50% of those without such experience thought so. This
places a considerable question mark over the content of such teaching and experience,
since those who had received it more frequently expressed erroneous views about ME than
those who had not.
It is also of particular note that doctors who expressed confidence in diagnosing ME
or in dealing with ME patients were universally wrong in their understanding of the nature
of ME, its diagnostic criteria, and its treatment. All six of them (100%) thought ME was
at least in part psychological/psychosomatic, failed to select the right combination of
diagnostic features, and thought ME could be treated with extremely hazardous graded
exercise therapy.
4.2. Making the Diagnosis
Myalgic encephalomyelitis is mainly diagnosed with a careful and thorough history.
Physical examination and appropriate investigations are performed to rule out other
pathology, but the diagnosis is made on the presence of post exertional malaise (PEM) and
other symptoms, as identified in the history. While certain physical signs can be present,
such as orthostatic changes in blood pressure or heart rate, pallor, and a multitude of
neurological signs including tremor, incoordination, ataxia, photophobia, muscle weakness,
fatiguability, fasciculations and myopathic facies, they are, like everything else in ME,
variable and fluctuating.
On diagnostic criteria, 38 participants (86.3%; 95% confidence interval: 73.3–93.6%)
believed six months of fatigue is necessary for diagnosis. This is contrary to the MYAL-
GIC ENCEPHALOMYELITIS—Adult and Paediatric: International Consensus Primer for
Medical Practitioners, which allows one to make a positive diagnosis based on symptom
constellation, without having to wait six months [
16
]. This is important as it allows timely
diagnosis and management. Diagnostic delay and lack of crucial medical advice in the early
part of the illness frequently results in significant harm and increased severity of illness.
A total of 39% of respondents incorrectly believed that psychiatric symptoms, or signs
of anxiety or depression, were necessary for a diagnosis of ME, in line with the misconcep-
tion that ME is a psychological or psychosomatic problem. None of the respondents were
in fact psychiatrists, psychologists or psychotherapists. These doctors could misdiagnose
depression or other mental health problems as ME, depriving patients of necessary treat-
ment. They could also miss the diagnosis of ME, depriving patients of crucial recognition,
medical advice and support. Of course, where ME and depression coexist, both need to be
recognised and appropriately managed. It should be noted that comorbid depression is as
common in other chronic diseases such as multiple sclerosis as it is in ME [17].
The same proportion did not realise that an essential requirement for diagnosis is post
exertional malaise, which is an exacerbation of the symptoms of ME/CFS after exertion,
which may be physical or cognitive [
16
,
18
]. It is recognised as the defining characteristic
of ME/CFS [
19
], can persist for prolonged periods [
20
], and is unrelieved by sleep or
rest [
21
]. These doctors could erroneously diagnose ME while missing other pathologies.
Only 13.6% of participants chose the correct combination of post exertional malaise and

Medicina 2021,57, 885 12 of 19
symptoms from multiple systems, without psychiatric features, as being necessary to make
the diagnosis.
4.3. Clinical Understanding
Most participants responded correctly to a series of propositions on the general
epidemiology of ME, and nearly all respondents recognised that children with ME can
miss long periods of school. However, it is a matter of concern that around a third of
respondents considered the statement “children with ME miss school because their parents
support their sick role and this should be discouraged” to be correct. ME/CFS is the single
most common cause of long-term school absence for medical reasons in England [
22
], and
this has been shown to be due to physical incapacity rather than anxiety [
23
]. Given the
high incidence of unjustified child protection and safeguarding proceedings instigated
against families of children with ME, often with disastrous consequences to the health of
these children, this misconception is of grave concern [24].
On the overall categorization of ME, most respondents thought that ME belonged in
the class of illness called medically unexplained symptoms. This is an umbrella term that
encompasses many conditions once thought to be “functional”, or without a pathological
basis, and for which psychological treatments were advised [
25
]. However, the underlying
pathology is steadily being elucidated, so the condition can no longer be regarded as being
medically unexplained [26].
There were also considerable misapprehensions among the participants regarding the
level of disability suffered by ME patients, with approximately two-thirds of all respondents
under-estimating the level of disability among people with ME, compared to other common
or serious illnesses. Only just over a third of participants correctly recognised that ME
patients can be as disabled as patients with all seven of the other conditions named. These
are multiple sclerosis, cancer, advanced HIV, chronic respiratory disease, end stage renal
failure, heart failure and a broken leg. All these conditions have previously been identified
in the literature or described by expert clinicians as having comparable levels of disability
to ME, both in adults [18,27–29] and in children [30–32].
Similarly, nearly half of the respondents over-estimated the ability of ME patients to
stay in work, even though research indicates that loss of employment among people with
ME/CFS is widespread. A Spanish community-based study found that 63% of ME/CFS
patients were unable to work [
33
], while the comparable percentage in a large UK study,
using data from the UK CFS/ME National Outcomes Database, was 50.1% [
34
]. This
British study found that 998 (50.1%) of 1991 patients had lost employment because of
illness. Extrapolation suggested the impact of ME/CFS on employment was responsible for
UK annual productivity costs of £102.2 million (range £75.5–£128.9 million) [
23
]. Another
Spanish report from the same research group found that 636 of 1116 people with ME/CFS
were unemployed (58.6%) [
35
], while a Norwegian study of hospital patients [
36
] found
that 43 (45%) of 92 were unemployed. Vink and Vink-Niese in a wide-ranging review of
the literature on employment in ME/CFS reported both these studies. They also reported a
series of studies by national patient organisations that came to similar conclusions, and
additionally demonstrated that where patients were able to continue to work, most had to
make adjustments to the nature and duration of the work that they undertook [37].
Most participants appreciated that ME is painful. However, only 25% knew that ME
can kill, though research indicates increased mortality from cardiovascular disease, cancer
and suicide [
38
,
39
], the latter being particularly tragic [
40
,
41
]. A recent paper has pointed
out that there is a considerable risk to life from malnutrition among patients with very
severe ME [
42
]. About two-thirds of participants did not appreciate the wide range of
symptoms occurring in ME patients (Tables 5and 9). Seven body systems very commonly
affected in ME were listed, and only 30% of respondents indicated that ME can affect all
seven body systems (see Table 9). These are the nervous system, the cardiovascular system,
the endocrine system, the musculoskeletal system, the gastrointestinal system, the immune
system and cellular metabolism [
20
]. The International Consensus Panel made clear the

Medicina 2021,57, 885 13 of 19
multi-system nature of the condition in 2012 [
16
], and this was reiterated in the IACFS/ME
(International Association for CFS/ME) Primer for Clinical Practitioners in 2014 [
19
] and
the Institute of Medicine case definition of 2015 [
18
]. This is applicable to children and
adolescents [21] as well as adults.
4.4. Hazardous Treatments
The responses regarding treatment were a matter of great concern, with nearly all
participants (98%) believing that graded exercise therapy (GET) is a suitable treatment for
ME (Table 10), while 61% believed that cognitive behavioural therapy (CBT), designed
to help patients get out of the sick role and to rethink their illness beliefs, is also an
appropriate treatment. It is salutary to reflect on why such misconceptions have become so
widespread. Much of this may have been shaped by previous research on ME, particularly
that promoting the cognitive-behavioural model of ME/CFS. Thus, one study concluded
that behavioural, cognitive and affective factors had a role in prolonging fatigue and that
therefore these factors should be the focus of treatment [
43
], but later work concluded that
this model lacked credibility as it had inadequate supporting evidence and did not address
the increasing evidence of pathophysiological changes in ME/CFS [44].
As outlined above, ME is a serious and debilitating multi-system neuro-immune
condition. As such, CBT, attempting to convince patients that they are not actually sick, is
no more a useful treatment than it is for cancer [
45
,
46
]. Instead, by convincing patients that
they are not ill, it is likely to cause harm, for patients who over-exert themselves may suffer
a deterioration in their illness. Even without the behavioural effects, just travelling to and
sitting through unhelpful CBT sessions can be harmful to ME patients, whose energy is
in short supply and who already struggle to manage minimum essential daily activities.
Patient evidence suggest adverse outcomes occur in 20% of cases treated with CBT [47].
Many of the participants (98%) believed that graded exercise therapy (GET) was
a suitable treatment for ME, perhaps not a surprise given that NICE UK included it as
a recommended treatment in 2007. However, many doctors may not be aware of how
unpopular this treatment is among ME patients [
48
], or that it can lead to worsening of
symptoms for some patients with ME, and there is in any event increasing evidence that
such treatment is ineffective and can be damaging in patients of all levels of severity [
19
].
The evidence base for GET use has revealed that exercise therapy is not an effective
treatment for ME. Reanalysis of the largest GET trial, the PACE trial, revealed recovery
rates close to just 10% (little above natural recovery rates), rather than the 22% recovery
rate reported by the PACE trial authors [
49
]. Adverse effects in the trial were dismissed as a
consequence of inappropriate implementation by inexperienced practitioners [
45
]. A 2019
Cochrane review considered eight reports on the use of exercise therapy on ME in adults
and concluded that such treatment probably had a positive effect on fatigue [
50
]. However,
a subsequent reanalysis found that this analysis was flawed due to the non-reporting
of harms in the reports initially studied, and that in fact GET appeared to not only be
ineffective but also unsafe [47].
Similarly, a 2011 review of eight surveys found that 51% of survey respondents
had reported that GET had made their health worse [
51
]. An analysis of primary and
secondary surveys found that 54–74% of patients responded negatively to GET [
52
]. The
UK ME Association reported this finding, and advised that GET should play no part
in activity management advice in ME. They also recommended that CBT, which also
impacted negatively on outcomes, should be avoided in ME/CFS [
53
]. An American report
by experienced clinicians concluded that not only did GET fail to improve function, but
that it could provoke the hallmark ME symptom of post exertional malaise (PEM) [
48
].
CBT, similarly, was found to be of benefit to only 8–35% of patients [
48
], which supports the
earlier view of the authors of the IACFS/ME Primer for Clinical Practitioners that the belief
that CBT and GET can cure ME “is not supported by post-intervention outcome data” [
19
].
A report from the Centers for Disease Control and Prevention concluded that patients
with ME cannot tolerate vigorous aerobic exercise regimes [
54
], and the evidence on

Medicina 2021,57, 885 14 of 19
GET continues to accumulate. A recent survey of the experience of ME patients in Italy,
Latvia and the UK found that, while none of the Italian or Latvian participants reported
having experienced GET, in the UK out of 70 respondents who had had GET, only 1 (1.4%)
reported that it had been effective [
55
]. For these reasons, of ineffectiveness, distress to
patients, and risk of harmful sequelae, the National Academy of Medicine in the US no
longer recommends GET for ME [
18
], and it is noteworthy that the draft guideline from
NICE in the UK on ME/CFS recommends that GET, or indeed any therapy based on
fixed incremental increases in physical activity or exercise, or any programme founded
on the supposition that deconditioning is the cause of ME, should no longer be offered to
patients [56].
4.5. The Urgent Need and Appetite for Medical Education
The results of this study make a strong case for putting Myalgic Encephalomyelitis
into formal medical education in the UK. We would argue that with ME being more than
twice as common as multiple sclerosis [
4
] and as debilitating or worse than most other
chronic illnesses such as heart failure or end stage renal disease [
18
,
27
–
29
] and being the
single greatest cause of long term school absence in children [
22
], the medical profession
cannot afford to be so ignorant, and so misinformed, about ME. This becomes even more
evident when considering the hazards of currently favoured therapies, as outlined above, in
conjunction with the rising costs of clinical negligence [
52
]. The costs to the UK economy are
also considerable, with direct costs estimated at £3.3 billion per annum to the country [
57
]
and productivity costs at £102.2 million per annum [34].
Doctors need to be able to recognise ME regardless of their specialty, as it has such a
wide range of symptoms and presentations. Not only does this audit demonstrate the great
and urgent need for medical education on ME, which must be scientifically accurate and
up-to-date, responses also demonstrate the appetite for it. More than half the respondents
(56%) who answered this question wished to have more in-depth teaching on ME, and
a total of 92% were amenable to it. Medical royal colleges and medical schools should
take heed.
4.6. Strengths and Weaknesses
The main strength of this study is that it is one of the few studies in the United
Kingdom to make a formal appraisal of doctors’ knowledge and understanding of myalgic
encephalomyelitis. It also conducted an investigation into the beliefs regarding ME of a
group of hospital doctors. The weakness of the study is that it was relatively small-scale,
ad hoc and may not be representative of all doctors’ views. Furthermore, the small size
of the study meant that only relatively large effects could be detected. However, our
findings do appear to be consistent with other studies [
58
,
59
], and such findings of poor
knowledge and negative attitudes appear persistent over decades. These may be linked
to how doctors are taught and trained in UK medical schools [
59
], with both doctors and
medical students developing their ideas about ME from lay and informal sources rather
than scientific knowledge and evidence on the disease. Although attendance at the training
event was mandatory, the participants were self-selected, since returning the survey was
not obligatory and participants opted to take part in the survey, which may reflect a self-
selection bias. Clearly, future research is needed, with larger samples, the involvement of
doctors from different specialties, and the use of a pre-post design in any future training
event in order to assess the impact of the event on participants’ knowledge of ME.
5. Conclusions and Recommendations
ME suffers from being a Cinderella topic within the medical profession, largely ignored
by the research community, as is evidenced by very low levels of institutional research
funding over many years [
60
], as well as by high levels of ignorance and disbelief among
doctors. This clinical audit has sought to investigate the beliefs about ME of a group of
hospital doctors attending a training event and their knowledge and understanding of the

Medicina 2021,57, 885 15 of 19
condition. It has demonstrated areas of ignorance so considerable that patients treated
on the basis of this would be put very much at risk. Nevertheless, it was encouraging
that participants recognised a need for further training and indicated a wish to participate
in this. It is strongly recommended that scientifically accurate and up-to-date medical
education on ME be made a priority at undergraduate and postgraduate levels. It is also
recommended that this audit be repeated following a period of medical education.
Author Contributions:
Conceptualisation, K.N.H.; methodology, K.N.H.; validation, K.N.H.; formal
analysis, K.N.H. and D.F.H.P.; investigation, K.N.H. and D.F.H.P.; resources, K.N.H.; writing—
original draft preparation, K.N.H.; writing—review and editing, K.N.H., K.G. and D.F.H.P.; visualiza-
tion, K.N.H. and D.F.H.P.; project administration, K.N.H. All authors have read and agreed to the
published version of the manuscript.
Funding: This research received no external funding.
Institutional Review Board Statement: Not applicable.
Informed Consent Statement:
Respondents took part in this audit voluntarily on the basis of
informed consent. All responses were completely anonymous.
Data Availability Statement:
Tabulations of the original data are available from the correspond-
ing author.
Conflicts of Interest:
The authors declare no conflict of interest. Geraghty has no financial conflicts
of interest to declare but declares that he has previously received research grants from ME charities,
UK non-governmental bodies, and crowdfunding. All of this funding has supported research on
ME/CFS.
Appendix A. Doctors’ Knowledge and Understanding of ME, UK 2018
Myalgic Encephalomyelitis-please base answers on your knowledge before today’s
lecture.
Education on ME, Prior Experience, Confidence
I have received formal teaching on ME in:
Undergraduate lectures Yes No 
Undergraduate e-learning or PBL Yes No 
Postgraduate lectures Yes No 
I have seen ME patients in:
GP clinics Yes No 
Specialty clinics Yes No If yes, which
_________________________
In hospital Yes No (tick no if it was just an item on the GP
summary list)
I know how to diagnose ME: Yes No 
I feel confident dealing with ME patients: Yes No 
Knowledge on ME: (tick all that apply)
ME is a: psychological/psychosomatic illness physical illness 
ME is rare: Yes No 
ME affects more: Men Women 
ME can affect children: Yes No 
ME resolves within 6 months: Yes No 
ME belongs in the class of illness called Medically
Unexplained Symptoms. True False 

Medicina 2021,57, 885 16 of 19
Education on ME, Prior Experience, Confidence
Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome
(CFS) and Postviral Fatigue Syndrome (PVFS) all mean the
same thing.
True False 
ME is mainly diagnosed with:
A careful history 
A thorough physical examination 
Investigations 
A psychiatric history 
The diagnosis of ME requires:
Six months of fatigue 
Symptoms from multiple systems 
Psychiatric symptoms 
Signs of anxiety or depression 
Post exertional malaise 
Certain physical signs 
Patients with ME can be as disabled as patients with:
MS 
Advanced HIV 
Heart failure 
Cancer 
Chronic respiratory disease 
A broken leg 
End stage renal failure 
ME doesn’t kill True False 
ME causes chronic disability True False 
ME is painful True False 
Children with ME can miss long periods of school True False 
How many ME patients are able to work?
Most of them 
About half 
Less than half 
ME can affect:
The cardiovascular system 
The musculoskeletal system 
The nervous system 
The immune system 
The endocrine system 
Cellular metabolism 
The gastrointestinal system 
ME can be treated with:
Antivirals 
Graded Exercise Therapy 
Vitamin supplements 
CBT to help patients get out of the sick role 
Patients need to think positive and build up their strength with
exercise or gradually increasing activity. True False 

Medicina 2021,57, 885 17 of 19
Education on ME, Prior Experience, Confidence
If they do not improve it’s because they’re not trying
hard enough True False 
Children with ME miss school because their parents support
their sick role and this should be discouraged. True False 
We have national guidelines on ME. True False 
After today’s introductory lecture, I would like further more
in-depth teaching on Myalgic Encephalomyelitis:
Yes 
No 
Neutral 
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