This is an HTML version of an attachment to the Freedom of Information request 'Training, briefing and knowledge-base materials for WCA assessors regarding certain conditions'.

MEDICAL SERVICES 
PROVIDED ON BEHALF OF THE DEPARTMENT FOR WORK AND PENSIONS 
 
 
 
 
 
 Training and Development 
 
Continuing Medical Education 
Programme 
 
Chronic Fatigue Syndrome / Myalgic 
Encephalomyelitis (CFS / ME) - Guidelines 
for the Disability Analyst 
MED/S2/CMEP~0017 
Version 5 Final 
Module: 6 
 
 


 
Medical Services 
 Foreword  
 
This training has been produced as part of a Continuing Medical Education 
programme for Health Care Professionals (HCPs) approved by the Department for 
Work and Pensions Chief Medical Adviser to carry out assessments. 
All HCPs undertaking medical assessments must be registered practitioners who in 
addition, have undergone training in disability assessment medicine. The training 
includes theory training in a classroom setting, supervised practical training, and a 
demonstration of understanding as assessed by quality audit. 
This training must be read with the understanding that, as experienced practitioners 
and disability analysts, HCPs will have detailed knowledge of the principles and 
practice of relevant diagnostic techniques, and therefore such information is not 
contained in this training module. 
In addition, the training module is not a stand-alone document, and forms only a part 
of the training and written documentation that HCPs receive. As disability 
assessment is a practical occupation, much of the guidance also involves verbal 
information and coaching. 
Thus, although the training module may be of interest to non-medical readers, it 
must be remembered that some of the information may not be readily understood 
without background medical knowledge and an awareness of the other training 
given to HCPs. 
 
 
Office of the Chief Medical Adviser 
 
June 2011 
 
 
 
 
 
 
 
Chronic Fatigue Syndrome - Guidelines for the Disability Analyst 
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Document control 
Superseded documents  
Version history 
Version Date 
Comments 
5 Final 
16 June 2011 
Signed off by CMMS 
5b Draft 
2 June 2011 
Updated following feedback from HWWD 
5a 
5 May 2011 
Updated by Dr A H following Schedule 28 
review 
4 Final 
30 April 2009 
Signed off by Medical Services Contract 
Management Team 
Changes since last version 
References to IB PCA referrals removed 
Updated to reflect Revised WCA; Global Justification; and changes to the ESA 50 
(as represented in version 03/11) - highlighting the added free-text space for 
claimants to describe their personal experiences and impact of the condition(s) they 
suffer 
Correction of typos, grammar and formatting throughout 
Outstanding issues and omissions 
Issue control 
Author: 
Updated by Dr P E  Version 1 written by Dr T F  
Owner and approver: 
Clinical Director 
Signature: Date: 
Distribution:   All units 
File reference(s) 
MED/S2/CMEP~0017 
Acknowledgement from version 1 
“The author and Medical Services gratefully acknowledge the contribution of the 
authors (Professor S Wessely, Professor P D White and Professor M Aylward) of 
the enclosed articles and their kind permission to reproduce them in this module. 
In addition the author would like to express his gratitude to Dr P Dewis for his helpful 
comments and suggestions.” 
Chronic Fatigue Syndrome - Guidelines for the Disability Analyst 
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 Contents 
Section Page 
1. 
Guidelines 

1.1 
Introduction 

1.2 
Objectives 

1.3 
How to use the Guidelines 

1.4 
Self-assessment exercise 1 

1.5 
Case Study 

1.6 
Self-assessment exercise 3 

1.7 
Self-assessment exercise 4 12 
1.8 
Self-assessment exercise 5 14 
1.9 
Objectives 16 
Appendix A -  Chief Medical Adviser's Expert Group 17 
Evaluation 24 
Observation Form 25 
  
 
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1. Guidelines 
 
These guidelines form part of the Medical Services programme for continuing 
medical education for HCPs.  They are part of a series, designed to encourage 
consistency in our approach to complex conditions; provoke reflection on our own 
perceptions with regard to them; and foster awareness of current medical thinking.   
1.1 Introduction 
Chronic fatigue syndrome / Myalgic Encephalomyelitis (CFS / ME ) is a disorder, or 
group of disorders, which continues to cause considerable difficulties for clinician 
and disability analyst alike, due to the absence of clear causative factors, the lack of 
precise case definition and the variable and uncertain natural history.  Since the 
terms “myalgic encephalomyelitis” and “post-viral fatigue syndrome” both carry 
implications relating to causation, the generic term CFS / ME is preferred. 
The purpose of this module is to encourage HCPs working in disability analysis to 
adopt a common approach to this difficult and complex condition.   
Our particular focus in CFS / ME is in the assessment and measurement of overall 
functional disablement.  It is hoped that this training module will encourage you to 
approach these cases in a way which is objective, thoughtful and structured. 
The Decision Maker (DM) who receives your report and advice will have similar 
difficulty in interpreting the issues, and one of your central tasks is to evaluate the 
history, clinical findings and disability in any given case and present them in a 
balanced, objective way. 
1.2 Objectives 
By the end of this module you should be able to:- 
  Describe the key diagnostic features of chronic fatigue syndrome 
  Describe a consistent and focused approach to the assessment of these 
claimants 
  Identify the critical prognostic features 
  Understand and fulfil the DM’s specific requirements 
1.3 
How to use the Guidelines 
After the introduction, there is a short case study which you should consider.  The 
data has been obtained from a small number of live cases, and modified to protect 
claimant confidentiality.  Once you have considered the case, read and respond to 
the self-assessment exercises which follow it. 
You should then read the overview and the suggested examination protocols.  
Having completed this, you should reflect on what you have done and you may 
usefully reconsider the case study in light of what you read. 
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Introduction 
Case Study 
Self- Assessment 
 
Exercises
 
 
 
 
Reflection 
Case Study 
Overview and 
 
Examination
1.4 Self-assessment 
exercise 

What are your perceptions of CFS? Before proceeding with the module, it would be 
helpful for you to complete the following short exercise.  First read the question, and 
then tick the most appropriate box.
 
Don’t 
 Yes 
No 
Know 
CFS is entirely psychological in origin 
 
 
 
CFS is wholly physical in origin 
 
 
 
CFS is partly physical, and partly psychological in origin 
 
 
 
There is usually some evidence of a precipitating viral 
 
 
 
infection 
Most cases of chronic fatigue are attributable to abnormal 
 
 
 
illness behaviour 
There is no consensus view on treatment of the condition 
 
 
 
As regards the outlook, each case is different: there are no 
 
 
 
clear prognostic indicators 
1.5 
Case Study  
Now read the following case summary.  Try to decide how you will approach the 
examination and the task of providing the DM with advice.   
Mrs D is a 42-year old woman.  You have been asked to assess her and provide a 
report for a non-medical decision maker.  She has completed a claim form herself, 
amplifying it with several additional pages of hand-written text and a pamphlet 
describing the features of “ME”.  She describes her main symptoms as fatigue, 
muscle pains, sleeplessness and poor concentration. 

 
 
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1.5.1 
Self-assessment exercise 2 
Mrs D gives the following history: 
Her symptoms began three years previously after a flu-like illness which affected her 
but not the other members of her family.  She was employed at the time as manager 
of a caravan suppliers business and had to go off work due to this attack, which she 
described as “severe flu, with limb pains, headache, sweating and malaise.  She 
consulted her doctor, who advised bed rest and simple analgesics and after ten 
days she returned to work, although still feeling unwell. 

After a few days back at work she felt so unwell that she went off sick again, and 
has not returned since.  She says that her employer has been very unsympathetic, 
and in fact even before her illness there had been difficulties in the business due to 
staff problems and she was having to do the work of two junior staff who had left, as 
well as her own.  She says that this additional burden was not acknowledged by her 
employer. 

Her past medical history included a number of episodes of absence from work due 
to “nerves” and on questioning she says that she has always been subject to 
episodes of depression and anxiety.  She attributes these to family problems, 
including her mother’s chronic illness and her son’s involvement with drugs.  There 
is no history of significant physical problems, apart from repeated urinary infections 
when she was in her 30’s. 

She lives in a two-storey end-terrace house with her husband, who is unable to work 
due to a back problem.  Her son lives in the next town, and rarely visits.  He is 
unemployed.  Her daughter lives on the next street, and is very attentive and helpful, 
and visits daily with her two-year old daughter. 

Mrs D gets up between 09:30 and 11:00 on most days if she feels well enough, 
having been brought her breakfast by her husband.  She sleeps poorly, often 
wakening several times during the night.  After breakfast she showers and dresses 
and then spends the day sitting watching television or videos.  Some days she does 
not dress in day clothes at all if she is feeling particularly fatigued and about two 
days per week she either does not get up at all or returns to bed.  She has been 
trying to do some cooking lately, but finds it very tiring and mostly her husband 
attends to all the routine household tasks.  However her daughter does all the 
ironing, and accompanies her husband in the car to do the weekly shopping. 

She attended her General Practitioner at the start of her illness, and he eventually 
referred her for a psychiatric opinion last year.  Mrs D says that this was wholly 
inappropriate as she does not feel that she is suffering from a mental illness.  She 
did not like the psychiatrist and she has no intention of returning to his clinic.  She 
accepts her GP’s advice that the condition will “take time” to resolve and no longer 
sees him on a regular basis. 

A report from her GP states “ME 3 years after flu’-like illness.  Past history of anxiety 
related to family problems.  Antidepressants (1 year ago) - no improvement: 
?compliance.” 

  Are there special considerations guiding your initial approach to these 
claimants? 
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  Take a little time to draw up an idealised structure for the examination of a 
person with the condition. 
  What areas of the history would you concentrate on, and why? 
  If you were performing a physical examination, what areas of the physical 
examination would you concentrate on, and why? 
  The information provided has been deliberately left incomplete: make a note of 
the additional data you would require in order to assess the case as a disability 
analyst, including advice on prognosis. 

1.5.2 Overview 
 
 
The term CFS / ME encompasses a range of disorders which share the common 
features of unexplained fatigue, or post-exertional malaise, and the absence of any 
objective sign of illness.  It is characterised further by the complaint of muscle pain, 
poor concentration and sleep disturbance.  Anhedonia, irritability, and emotional 
lability are also commonly present and it is important to note that the fatigue is not 
confined to physical tiredness, but sufferers may complain also of mental fatigue, 
lack of concentration and often, some degree of short-term memory impairment. 
Fatigue is central rather than peripheral in origin and neurophysiological studies are 
usually normal.  As in multiple sclerosis and depression the fatigue is subjective, in 
comparison to the objectively measurable fatigue of myasthenia gravis. 
Muscle pain is variable in nature and severity and it may or may not be provoked by 
activity.  There is significant clinical overlap between CFS / ME and fibromyalgia 
syndrome (FMS).1 
Diagnosis is made by a process of exclusion and in addition relies heavily on the 
person’s self-report.  Patients often complain that their disability goes unrecognised 
because there are no visible or objective signs of illness.  The Fukuda criteria 
(Annex B of the appended report of the Chief Medical Adviser’s expert group) are 
helpful, but are viewed by some workers as unduly restrictive in the context of case 
definition. 
CFS / ME is one of a group of conditions called ‘Medically Unexplained Syndromes’ 
and is probably best regarded as a heterogeneous spectrum of disorders, 
multifactorial in origin and sharing a similar symptom complex. In CFS / ME 
                                            
1 White K Speechley M Harth M Ostbye T.  Co-existence of chronic fatigue syndrome with 
fibromyalgia syndrome in the general population.  Scandinavian Journal of Rheumatology 
2000;29(1):44 
2Wessely S. Chronic fatigue syndrome.  Medicine 2000;28(5):72 
3Wessely S, Chalder T, Hirsch S, Wallace P, Wright D.  Psychological symptoms, somatic 
symptoms, and psychiatric disorder in chronic fatigue and chronic fatigue syndrome.  Am J 
Psychiatry 1996;153(8):105 
4B Van Houdenhove. Psychiatric comorbidity and chronic fatigue syndrome. BJPsych 
2006;188:395 
5UM Nater, JM Lin, EM Maloney, et al.  Psychiatric comorbidity in persons with chronic fatigue 
syndrome identified from the Georgia population. Psychosom Med 2009; 71(5):557-65 
6RR Taylor, LA Jason. Comparing the dis with the scid: Chronic fatigue syndrome and 
psychiatric comorbidity. Psychology & Health 1998; 13(6):1087-1104 
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physical, psychological and social factors all play a part.  
At one end of the scale are the (uncommon) cases where there is a very clear 
history of the sudden onset of fatigue after a proven infection, such as Epstein Barr 
virus; at the other, cases strongly associated with current or pre-existing psychiatric 
disorder.  There is conflicting evidence on the rates of psychiatric co-morbidity in 
individuals with CSF/ ME2-4; with some studies suggesting that rates are influenced 
by  referral bias5 and yet others suggesting that the type of psychiatric instrument 
used in research influences the outcome6.  
Regardless, of primary importance to the disability analyst is whether or not there 
are concurrent mental health symptoms in the case they are assessing.  Evidence 
from the ESA50 may not readily reveal this information; some claimants may feel 
that the functional ‘Activity’ areas of the form don’t reflect their experiences of living 
with CFS/ ME.  Clues may only be found under the section headed ‘About your 
illnesses or disabilities’ (page 3, of ESA50 version 03/11) - where claimants have an 
opportunity to describe in their own words the way in which they feel their condition 
affects them.  It is important to expand upon any clues given in the ESA50 by taking 
an appropriately detailed and focussed typical day history during the examination. 
None of the various groups of diagnostic criteria for CFS/ ME can be taken as 
definitive, either in the clinical or disability analysis environment; and it is important 
to remember that they have been developed for research rather than for therapeutic 
purposes. 
1.6 Self-assessment 
exercise 

What is the focus of the disability analysis examination in CFS / ME? Write down the 
questions to be addressed when assessing people with this illness. 

1.6.1 
Questions to be addressed during the disability analysis assessment 
1.    To what extent is the person functionally impaired? 
2.    Do mental or physical features predominate? 
3.    Is there a co-morbid condition present? 
4.    If so, is it mental or physical? 
5.    To what extent does the co-morbid condition contribute to the overall disablement? 
6.  Is the claimed degree of disability in keeping with the history, clinical findings and natural 
history of the disorder? 
7.  What is the prognosis: 
  For CFS / ME? 
  For any complicating co-morbid condition? 
In order to provide advice on these matters, a clear, focused and structured 
assessment must be performed. 
1.6.2 The 
assessment 
It goes without saying that any examination performed must be carried out with 
particular care and consideration.  Many sufferers complain that insensitive or 
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inappropriately ‘rough’ examination has caused significant exacerbation of their 
condition.   
Claimants should be encouraged to indicate when a manoeuvre is giving rise to 
undue discomfort or causing unacceptable fatigue.  HCPs should be mindful of the 
basic principles of examination etiquette, which was addressed in their initial training 
when joining the company [and which is dealt with further in the Learning Set, 
“General Principles of Examination (MED-CMEP~115)”]. 
In essence, there should be a functional  need for any physical examination and 
HCPs should be able to justify this.  HCPs may be criticised for ‘over-examining’ if it 
results in unnecessarily tiring the claimant, when there was little justification to do so 
(in a similar vein, they should be able to defend their reasoning for not undertaking a 
particular examination if it would have yielded useful evidence: e.g. checking for 
signs of muscle-wasting).  Whilst HCPs may feel that a physical examination is 
important in order to provide the DM with the most comprehensive evidence on 
which to base their decision, they should respect the wishes of claimants who are 
reluctant to participate in / attempt an activity.  Claimants should certainly never be 
pushed to complete an activity in the face of obvious pain.  
1.6.3 
Setting the scene   
In order to ensure that the examination yields the maximum amount of information, 
you should invest time in creating good rapport with the claimant.  Because of the 
nature of the condition and the differing perceptions surrounding it, some individuals 
will adopt a defensive attitude, assuming that the HCP will approach the 
proceedings with in built disbelief.  Make it clear that your mind is open, that you are 
prepared to listen, and that your report will be fair and objective. 
1.6.4 
History   
Present complaints should be carefully elicited.  Post-exertional malaise, muscle 
pain, poor concentration and disturbed sleep are of course commonly volunteered.  
Hyposomnia rather than hypersomnia is more common in non-post-viral cases.  It is 
important to record the person’s understanding of their illness7. 
The mode of onset of the disorder is important.  There is some evidence that cases 
arising after a proven viral infection have a greater chance of complete recovery, 
and run a shorter course.   
Any concomitant physical or mental condition must be identified and individually 
assessed, as it may independently influence the course of the illness and may 
indeed be amenable to treatment.  If treatment is already underway for the co-
morbid condition, what is the nature of the treatment (e.g. antidepressants) and for 
how long has it been in place? The presence of a co-morbid psychiatric disorder has 
a negative influence on the prognosis8. 
1.6.5 
Past medical history 
A history of previous episodes of fatigue has a bearing upon the prognosis.   
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1.6.6 Occupational 
history 
It has been found that work-related stress may be a triggering factor, and many 
patients go on to take less stressful jobs.   
_______________________________________________ 
7Sharpe M, Chalder T, Palmer I, Wessely S.  Chronic fatigue syndrome.  General Hospital 
Psychiatry 1997;19(3):185 
8Joyce J, Hotopf M, Wessely S.  The prognosis of chronic fatigue and chronic fatigue 
syndrome; a systematic review.  QJM 1997; 90(3):223 
1.6.7 
Analysis of activities of daily living 
An account of the activities of a typical day should be taken, in keeping with the 
general guidelines (see Employment and Support Allowance, ESA, Handbook).  You 
should explore all of life’s key activities in the process, such as feeding, cooking, 
keeping the house clean, shopping, gardening, social life and so on. Evidence of 
consistency should be sought in how each of these activities is managed.  This in 
turn should be confirmed by informal observation where possible. 
It should be noted in interpreting this evidence that one of the common complaints of 
these patients is that although tasks can often be accomplished they cannot be 
sustained; or reliably performed again without significant detriment (e.g. exhaustion, 
to the extent of being unable to continue with any other activities for the rest of the 
day/ next few days).   
However, you should be alert to lifestyle patterns which may maintain disability; for 
example it is common for individuals with CFS to complain that they feel very unwell 
in the mornings, and yet this is clearly exacerbated by a routine where they stay in 
bed until lunch time. 
1.6.8 Variability 
In addition, careful account must be taken of variability; since CFS/ ME, like most 
other chronic conditions, encompasses a spectrum of capabilities.  Information on 
variability, indicating to the DM ‘where’ on the severity spectrum the claimant sits, is 
an important contributor to the HCP’s advice.  It is not sufficient to simply make the 
general comment that the symptoms “vary from day to day”, or between one part of 
the day and the next.  The DM requires to know the actual duration of disabling 
problems; the frequency of days when severe fatigue or pain is experienced; the 
average proportion of “bad” days to “good”, and a description of what the person 
says he/she can and cannot do on “bad” days.  Remember to look for added clues 
about the extent of variability, and other ways CFS impacts on a claimant’s life, by 
scrutinising information which may be contained under the section headed ‘About 
your illnesses or disabilities’ (page 3, of ESA50 version 03/11).  Here, claimants 
have an added opportunity to describe in their own words the way in which they feel 
their condition(s) affects them; to expand on their personal experiences of living with 
CFS – especially important if they feel that subsequent parts of the form (detailing 
the functional ‘Activity’ areas) aren’t applicable/ “don’t fit” their view of the difficulties 
they have.    
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1.6.9 Physical 
Examination 
It is important to remember that the person may well be examined by another 
disability analyst at some time in the future in order to determine progress, and your 
methods and style of recording clinical findings must be in accord with Medical 
Services standards and recommendations. 
Characteristically the physical examination rarely reveals definitive positive clinical 
findings, but particular features, such as muscle-wasting, should be positively 
sought (bearing in mind the principles discussed above, in section 1.6.2); recorded; 
and explained to the DM.  When a particular functional deficit is claimed, for 
example mobilising or manual handling, the associated muscle groups and joints 
should receive particular attention and muscle power carefully assessed and 
recorded – again, bearing in mind the general principles of examination as 
discussed above. 
1.6.10 Psychological 
assessment 
It is rarely possible to perform a full psychological assessment.  However it is 
generally accepted that since CFS encompasses both physical and psychological 
components it would be wrong to neglect either. 
Because of the possible effects on mental functioning of CFS, it will almost always 
be appropriate to assess the claimant’s mental state and, in the case of ESA, to 
complete a mental health/function assessment.  
If the claimant states that “There’s nothing mentally wrong with me …” it should be 
explained that CFS is a condition which can affect concentration, memory and 
mood. The assessment is to demonstrate to the decision maker any difficulties the 
claimant may have in these areas. If a mental health/function assessment is not 
carried out in ESA, then the reasons for not doing so should be fully justified. 
For the purposes of ESA, considerable skill is required to assess the degree to 
which stated difficulties in persisting with tasks is due to the physical component of 
the illness, and which is due to psychological factors – and there may be a risk of 
double scoring.  Of course our professional experience often suggests that both play 
a part.  The ability to perform activities reliably and repeatedly is integral to the 
activity descriptors in Revised WCA (ESA, under 2011 regulations).   
1.7 Self-assessment 
exercise 

A man claiming ESA suffers from CFS.  He also has osteoarthritis of his lumbar 
spine, hips, knees (confirmed by recent x-ray), shoulders and elbows (also 
confirmed by recent x-ray).  His mobility is limited by sore joints and tiredness – he 
can walk 100m maximum on the flat when using crutches; but finds it impossible to 
propel a wheelchair more than a few metres, due to stiffness and pain in his upper 
limb joints.  He often avoids carrying out routine activities like vacuuming because it 
is too fatiguing.  He lives alone, and manages to get himself up, washed and 
dressed daily.  He washes the pots after every meal, and uses the washing machine 
once a week.  He finds it too tiring to cook proper meals, and mainly uses the 
microwave to heat up ready-meals or soup; or he makes sandwiches.  The decision 

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maker requires to know whether mental or physical factors are the cause of his 
mobility problems.  How do you decide what advice to give? 

The preferred approach to the above problem is to decide which component 
contributes most to the disablement.  As always, you should remember that the 
responsibility for deciding entitlement to benefit ultimately lies with the DM, and as 
long as you explain your advice adequately and in keeping with the balance of 
probability you will have fulfilled your task.  For example, a global justification 
summary for the above case, might read: 
“On the basis of evidence acquired from the clinical history, typical day history, and 
physical and mental health examination, it seems reasonable that physical factors 
contribute most to his difficulties with mobilising.  Although his ability to complete 
tasks is impaired due to reduced drive, it is preserved to a reasonable degree, as 
suggested by his ability to do other housework and perform routine self-care 
activities.  In contrast, he does have moderately severe degenerative changes in 
both knees and elbows (as confirmed by the recent x-ray reports; copies of which 
are attached to the ESA50), suggesting that physical factors play a significant part 
and probably are the predominant reason for his difficulties with mobilising.” 
1.7.1 Observed 
behaviour 
This should be carefully noted, assessed and recorded.  As usual your observations 
must be focused, relevant and in accordance with Medical Services guidance in 
relation to personal descriptions.  Remember however that the claimant will almost 
certainly complain of variability and fatiguability and a “snapshot” account may be 
challenged on this basis.  In addition it is a frequent complaint that a high level of 
activity on one day may well be achieved but will not result in incapacitating malaise 
until the next. 
1.7.2 Disability 
Living 
Allowance 
DLA legislation requires the claimant to have a physical disability in order to be 
entitled to the higher rate mobility. Where a person has a mixed physical/mental 
problem, providing the physical problem is contributing to walking difficulties, 
Commissioners have ruled that all the walking problems should be considered 
‘physical’ in this context. 
The reader is referred to the distance learning ‘Mobility Questions in DLA’; however 
the following should be noted when giving advice to the DM on a claimant’s mobility: 
  Where there is an underlying physical problem, even when much of the disability 
relates to factors outside that physical diagnosis, the cause should be 
considered as PHYSICAL (e.g. CFS / ME) 
  Where there is no physical diagnosis the examining Health Care Professional 
will need to decide whether - it is more likely than not – the claimant has a 
physical illness. Where there is no evidence of mental illness within the 
presentation then in most such cases the examining Health Care Professional 
should accept a PHYSICAL component.   
Having accepted that CFS / ME is a medically unexplained syndrome which 
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sometimes has a physical component and sometimes has a mental health 
component, examining HCPs should of course assess any physical problems (e.g. 
walking) and any mental health problems (e.g. concentration). 
1.7.3 Disability 
analysis 
in 
the context of treatment 
The combination of cognitive behavioural therapy9 and graduated exercise10 
 
_______________________________________________ 
9Deale A, Chalder T, Marks I, Wessely S.  Cognitive behaviour therapy for chronic fatigue 
syndrome: a randomised control trial.  Am J Psychiatry 1977; 154:408 
10 Fulcher K, White P.  Randomised controlled trial of graded exercise in patients with the 
chronic fatigue syndrome.  BMJ 1997; 314:1647 
is at present the mainstay of treatment, but several writers stress the importance of 
the concept of collaboration in any treatment regime.  In order to obtain such 
collaboration it is necessary to obtain the patient’s trust.  It is essential therefore that 
the disability analyst does not jeopardise such trust built up between patient and 
medical carer by allowing any preconceived opinion of CFS to intrude upon what 
should be a thoughtful, caring and above all, objective assessment.   
1.8 Self-assessment 
exercise 

What factors do you take into consideration at present when advising the decision 
maker on prognosis? 
1.8.1 Prognosis 
When advising the decision maker about prognosis it is helpful to note that factors 
suggesting a good prognosis include: 
  a definite history of an acute viral illness at the outset, and occurring against an 
uncomplicated psychological background 
  clinical features showing a pattern of evolution towards functional recovery 
  early diagnosis aimed at eliminating associated physical disorders and 
identifying psychiatric illness along with other complicating psychological or 
social factors 
  a management regime which encompasses physical, psychological and social 
elements. 
The risk factors for poor prognosis include;  
  an older age; 
  the onset of symptoms without any clear precipitating factor; 
  a background of adverse psychological and social factors; 
  severe and unremitting symptoms, especially of more than four years’ duration; 
  delayed diagnosis and especially self diagnosis where the patient becomes 
convinced of a single cause to the exclusion of all others; 
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  a management regime which either over-emphasises the importance of 
complete rest or which advocates a rapid return to pre-illness levels of physical 
activity11. 
Although outdated, the report of the Chief Medical Adviser’s Expert Group gives a 
useful overview of the condition from the point of view of the disability analyst 
(Appendix A).  
HCPs should also refer to the DWP’s published medical guidance for DLA/AA, 
available on Livelink or on the internet 
(http://www.dwp.gov.uk/publications/specialist-guides/medical-
conditions/a-z-of-medical-conditions/). 
_________________________________ 
11Chief Medical Adviser’s Expert Group; Chronic fatigue syndrome. Department of 
Social Security 1996 
You should now read this, and the interested reader is further invited to review the 
following: 
  Occupational aspects of the Management of Chronic Fatigue Syndrome: A 
National Guideline (2006) 
  Treatments for chronic fatigue syndrome (Occupational Medicine review – K 
A Rimes & T Chalder 2005)  
  Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic 
encephalomyelitis in adults or children (National Collaborating Centre for 
Primary Care & Royal College of GPs) 
  A systematic review describing the prognosis of chronic fatigue syndrome 
(R. Cairns & Hotopf 2005) 
  Disability and Chronic Fatigue Syndrome – A Focus on Function (Ross et al 
2004) 
  Chronic Fatigue Syndrome: A Review (Afari N & Buchwald, D) 
Once you have read the papers: 
1)  Return to Self-assessment exercise 1 and see whether your views have altered. 
2)  Look again at the case example and address the following questions again: 
  Are there special considerations guiding your initial approach to these 
claimants? 
How would you prepare for the assessment of Mrs D? 

  Draw up an idealised structure for the examination of a person with the 
condition. 
  What areas of the history would you concentrate on, and why? 
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  What areas of the physical examination would you concentrate on, and why? 
  The information provided has been deliberately left incomplete: make a note 
of the additional data you would require in order to assess the case as a 
disability analyst, including advice on prognosis. 

1.9 Objectives 
The objectives of this module were to enable you to:- 
  describe the key diagnostic features of chronic fatigue syndrome / myalgic 
encephalomyelitis 
  describe a consistent and focused approach to the assessment of these 
claimants 
  identify the critical prognostic features 
  understand and fulfil the DM’s specific requirements 
You should ensure that you are satisfied that these have now been met. 
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Appendix A -  Chief Medical Adviser's Expert Group 
 
CHRONIC FATIGUE SYNDROME - PROGNOSIS & CHRONICITY 
 
 
REPORT OF THE FIRST MEETING 
Introduction 
 
1. 
Chronic fatigue syndrome (CFS) is a controversial area of medicine which over the 
years has attracted extremes of opinion on various issues such as causation, diagnosis, 
management and prognosis.  This has often precluded there being constructive debate 
on the subject.  This in turn has led to a sense of confusion in the medical profession 
generally which has often been interpreted by sufferers and their advocates (sometimes 
with justification) as a lack of interest or a denial that the condition exists at all. 
 
2. 
It is against such a background that doctors from Benefits Agency Medical 
Services (now Medical Services) have had to try to give consistent and 
meaningful advice on individual claims to social security benefits and also on cases 
relating to various schemes administered by other government departments and 
agencies (e.g. N.H.S. and Teachers superannuation schemes).  The Chief Medical 
Adviser (CMA) is very anxious to ensure consistency of medical advice which is based 
upon the prevailing consensus of informed expert opinion on the subject.  This is in 
keeping with the Government's desire to ensure that all people receive those benefits to 
which they are entitled.  Clearly knowledge of prognosis and of those factors which lead 
to chronicity is very important for Benefits Agency (now Medical Services) doctors to be 
able to give informed, consistent and appropriate advice.  Indeed in some areas, e.g. 
NHS pensions, a knowledge of the prognosis is a crucial part of the decision making 
process.  Prognosis and chronicity cannot, of course, be looked at in isolation. 
 
3. 
The Chief Medical Adviser's Expert Group was therefore set up to give him personal 
advice specifically on those factors which affect the prognosis and chronicity of the 
chronic fatigue syndrome.  It should be noted that the remit of the group was more 
narrowly focused than the Joint Royal College's Working Party on Chronic Fatigue 
which has been requested by the Chief Medical Officer and which is due to report 
shortly.  The first meeting of the group took place on 6 March 1996. 
 
Membership of the Group and Conduct of the Meeting 
 
4. 
Individuals representing a wide variety of disciplines and interests were identified and 
personally invited to join the group by the CMA.  The aim was to have input from as 
broad a base as possible.   
 
The following interests and disciplines were represented: academic research into CFS, 
clinical interest in the field (from psychiatry, neurology, infectious diseases and general 
practice), occupational medicine, the insurance industry, CFS support groups and the 
Disability Living Allowance Advisory Board (DLAAB).  
Members were supported by officials from the Departments of Social Security and 
Health.  (A full list of members and officials is at Annex A). 
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5. 
The CMA and Officials opened the discussion by highlighting the important issues 
arising from the published literature from the past 10 years.  These were taken from a 
database of around 350 papers. The findings of the National Task Force on 
CFS/PVFS/ME, whose report was published in September 1994, were highlighted, 
particularly where they pointed to controversies relating to prognosis and chronicity. 
 
6. 
Individual members were then each asked to give a five minute presentation 
summarising their views on prognosis and chronicity and how these were affected by 
factors such as diagnostic criteria and management strategies.  This was then followed 
by a structured discussion led by officials designed to identify areas of consensus and 
disagreement. 
 
Summary of Structured Discussion 
 
7. 
In order to try and bring together a wide-ranging discussion, the main areas covered, 
conclusions reached and disagreements identified are considered under three main 
headings: diagnosis, management and prognosis. 
 
 
(i) Diagnosis 
 
 
 
-  
The present definitions are inadequate and it may well be that the 
prevalence of the condition is currently being underestimated. 
 
 
-  
The Fukuda criteria were generally thought to be the best available 
(Annex B).  However, it was thought that the minor criteria needed 
modification, and that this may deal with the apparent underestimate 
mentioned above. 
 
 
-  
There is not just one clinical picture of CFS.  As time goes by, it is likely 
that more and more definite sub-groups will be identified and the 
numbers with chronic fatigue of unknown cause will fall. 
 
 
-  
The prevalence of fatigue in the general population is high, but using the 
presence of fatigue alone is likely to be an over-estimate of the 
prevalence of CFS. 
 
 
-  
Some members felt that delayed fatigue (e.g. occurring the day after 
excess activity) was pathognomic.  However, others did not agree, 
believing that fatigue unrelated to the level of rest or exercise was more 
typical. 
 
 
-  
It was generally thought that early diagnosis (and hence appropriate 
management) was essential in order to minimise the chances of a poor 
prognosis.  However, on whether the duration per se was a good 
prognostic indicator, there was no general consensus. 

Clinicians from different disciplines tended to see different patterns of 
clinical manifestations and there was a danger of drawing general 
conclusions from specific experiences. 
 
 
-  
Clinicians recognised certain diagnostic groups as having different 
prognoses.  For example, those who develop chronic fatigue after a 
clearly defined episode of glandular fever do well. 
 
 
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However, those who develop chronic fatigue against a background of 
complex interacting psychological and social circumstances are likely to 
do badly.  There was also an impression that those developing the 
condition after a severe infection e.g. meningitis, do badly. 
 
 
-  
It was agreed that a common language was required e.g. for outcome, 
fatigue etc. 
 
 
-  
It was pointed out that many criteria employed were meant to be used for 
research rather than clinical purposes. 
 
 
-  
Similarly the definition of chronic as meaning 6 months or longer, whilst 
useful for research purposes, should not be an absolute requirement 
clinically. 
 
 (ii) 
Management 
 
 
 

 
The sooner appropriate management was started, the better the 
prognosis. 
 
 
-  
There was general agreement that a holistic approach was required with 
physical, psychological, social and employment factors all needing to be 
addressed. 
 
 
-  
There was a need to establish a baseline of physical ability.  There was a 
tendency for patients to overestimate their capacities and help was 
required in establishing baseline performance. 
 
 
-  
Activity should be increased in a managed, stepwise manner. 
 
 
-  
Although it was agreed that patients should be prevented from over-
exerting on good days, there was recognition of that fact that too much 
rest could lead to the problems of deconditioning. 
 
 
-  
It was recognised that lifestyle modification was important and that many 
patients need to accept lower levels of activity than they had previously 
regarded as being normal.  Within this it was noted that many patients 
had previously led lives which were extremely physically active. 
 
 
-  
It was important to exclude and treat co-existing physical diseases and 
maintaining factors. 
 
 
-  
Sleep problems needed to be specifically identified and managed. 
 
 

There was discussion as to whether the condition should be managed by 
specialists or GPs.  There was general agreement, however, that an 
overall understanding of and interest in the condition was more important 
than a particular specialist background. 
 
 
 
 
 
 
 
 
 
 
Specialist support should, however, be used appropriately e.g. in the 
investigation of underlying physical disease or the assessment of specific 
psychological or psychiatric factors. 
 
 
-  
It was important that GPs did not uncritically accept a self-made 
diagnosis. 
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-  
There was discussion of the role of self help groups in the management 
and the suggestion that such involvement may be a bad prognostic 
indicator.  It was suggested that such groups are more active where the 
general standard of management is poor and consequently that they 
attract people whose poor prognosis has been contributed to by 
inappropriate treatment. 
 
 

There was general agreement that randomised controlled trials were 
required for the evaluation of clinical management techniques. 
 
 (iii) 
Prognosis 
 
 
 
-  
Proper medical, occupational, social and financial support is essential to 
achieve maximum benefit. 
 
 
-  
The presence of stress worsens the prognosis. 
 
 
-  
Lifestyle modification may enable the patient to cope and return to 
relative normality, even though the condition is still present. 
 
 
-  
Five factors were important and all had an effect on the overall prognosis 
- demographic, clinical, psychological, social and management. 
 
 

 
Despite the discussion above, it was generally agreed that no 
generalisations could be made about the involvement of support groups 
on the prognosis. 
 
 

 
Symptoms of alcohol intolerance were not thought to be useful 
prognostic indicators. 
 
 

 
 
Some patients do not recover despite optimum conditions of 
management. 
 
 
-   
Although it has been suggested that younger patients (under 25) have a 
better prognosis, the evidence for this is conflicting. 
 
 

 
There was a clinical impression that variability of symptoms and 
especially where they appear to be evolving was a good sign that the 
patient was getting back to normal. 
 
 
-   
Although duration of symptoms per se was not thought to be helpful in 
determining prognosis, where these had been severe and unrelenting, 
the prognosis appeared to be poor, particularly after four years. 
 
 
-   
Recovery should not necessarily be equated as getting back to the same 
condition as before the illness.  Similarly it was important to note that 
prognosis and functionality were different concepts. 
 
 
-   
It was generally agreed that somatisation disorders had a poor prognosis 
and that the more symptoms, the more likely somatisation was to be 
present. 

There was a need for future research to be directed towards answering 
questions on prognosis. 

In the current environment clinicians, researchers and support workers 
must be prepared to say that they do not know. 
 
 
Conclusions 
 
8. 
It should be recognised that these conclusions are based on the personal views of the 
members and not all will necessarily be based on the results of controlled clinical 
studies.  Chronic fatigue syndrome is a complex condition which is not fully understood.  
Consequently it is not possible to draw up universally accepted diagnostic criteria.  It is 
generally accepted, however, that the Fukuda criteria are the best available, but that 
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these will need to be modified in the light of developing experience.  Because of this, it is 
not possible to define concrete sets of favourable or unfavourable prognoses.  It is also 
important to note that generalisations on prognostic factors will not necessarily apply to 
each individual patient.  In addition, in each case, there will often be conflicting 
favourable and adverse factors interacting to determine the overall outcome.  Despite 
this it is possible to describe two scenarios representing the extremes of good and bad 
prognosis:- 
 
 
(i) Good 
prognosis:- 
 
 
 

A definite history of some acute viral illness (particularly glandular fever) 
at the onset and occurring on an uncomplicated psychological 
background. 
 
 

Clinical features showing a pattern of evolution towards functional 
recovery.   

Early diagnosis aimed at eliminating associated physical disorders and 
identifying psychiatric illness along with any other complicating 
psychological or social factors. 
 
 

A management regime which encompasses physical, psychological and 
social elements.  One which concentrates on lifestyle modification and 
strikes a balance between overactivity and the risks of deconditioning, 
and which takes a stepwise approach to achieving functional 
improvement.  One which also deals with maintaining factors such as 
sleep disturbance. 
 
 (ii) 
Poor 
prognosis 
 
 
 

The onset of symptoms without any clear precipitating factor but set 
against a complex background of adverse psychological and social 
factors, or with an onset following a severe infective illness. 
 
 

Clinical features characterised by severe and unremitting symptoms, 
particularly if lasting over four years.  The presence of multiple symptoms 
especially those suggesting somatisation. 

Delayed diagnosis and especially self diagnosis where the patient 
becomes convinced of a single cause to the exclusion of all others. 

A management regime which overemphasises the importance of either 
complete rest or which advocates a rapid return to pre-illness levels of 
physical activity.  One which does not recognise the need to treat such 
features as depressive illness or sleep disturbance. 
 
Recommendations 
 
9. -  The Group recommends that guidance to Benefits Agency doctors on chronic 
fatigue in all areas of work is reviewed to ensure that it accurately reflects this 
emerging consensus and also that it should have the opportunity to comment on 
any revised guidelines. 
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 - Although the Group's purpose is specifically to give advice to Chief Medical 
Adviser, it is recommended that this report and any subsequent reports be made 
widely available to all those with an interest in Chronic Fatigue Syndrome. 
 - The Group recommends that it should continue to meet on a three monthly basis 
in order to refine its advice in the light of any newly published research. 
 - The Group endorses the view previously expressed, notably by the National 
Task Force, on the need for further controlled studies on the causation and 
management of CFS, and that prognostic factors need to be addressed 
specifically in these. 

The Group recommends that officials explore the feasibility of conducting 
casework studies in social security and related areas to see whether the process 
of identifying prognostic factors can be refined. 
 
 
 
Department of Social Security 1996 
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Annex A 
 
 
Chronic Fatigue Syndrome 
 
CMA's Expert Group - List of Members and Officials
 
 
 
[Chair: Chief Medical Adviser DSS] 
 
 
Dr Robin Cox
 
 
 
-  Consultant Occupational Physician.  Previously: Chief 
Medical Officer, CEGB and National Power 
 
Professor R Grahame 
 - 
Chairman Disability Living Allowance Advisory Board, 
and Professor of Clinical Rheumatology Guy's Hospital 
 
Dr John LoCascio   
 
- Medical Director, UNUM UK 
 
Professor A J Pinching 
 - 
Professor of Immunology, St Bartholomew's   Hospital 
 
 
 
 
 
 
Dr Charles Shepherd 
 - 
Medical Adviser, The ME Association 
 
Dr D Pheby   
 
 
-  Cancer Epidemiology Unit, Dept. Epidemiology and 
Public Health Medicine, University of Bristol  
 
Dr P White   
 
 
- Senior Lecturer and Honorary Consultant Psychiatrist St 
Bartholomew's Hospital  
 
Dr Anne Macintyre   
 
- Medical Adviser to Action for M.E. and CHROME (Case 
History Research on ME) 
 
Dr Meirion B Llewellyn  

Senior Registrar in Infectious Diseases, University 
Hospital of Wales 
 
Dr L S Illis 
 
 
 
- Consultant Neurologist, Lymington, Hampshire 
 
Dr D Miller   
 
 
- Faculty of Occupational Medicine 
  
 
Medical Policy Managers/Advisers, Department of Social Security 
 
Representative from Department of Health 
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Annex B 
 
 
 
Summary of Fukuda Criteria 
 
 
Fukuda K et al: Annals of Internal Medicine 1994; 121, 12, 953-959 
 
 
(1) 
Fatigue lasting for six months or longer where other known causes have been excluded 
from history, physical examination, mental state assessment and appropriate tests. 
 
 
(2) 
Four or more of the following present concurrently for six months or longer:- 
 
 
 
(i) 
Impaired memory or concentration 
 
 
(ii) 
Sore throat 
 
 
(iii) 
Tender cervical or axillary lymph nodes 
 
 
(iv) Muscle 
pain 
 
 
(v) Multi-joint 
pain 
 
 
(vi) New 
headaches 
 
 
(vii) Unrefreshing 
sleep 
 
 
(viii) Post-exertion 
malaise. 
 
 
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Evaluation  
Chronic fatigue syndrome / myalgic encephalomyelitis: 
Guidelines for the Disability Analyst 
 
In order to evaluate your understanding of this module, please answer the following 
questions, referring to the reference material when required. 
If the objectives have been achieved you should have no difficulty in responding 
correctly. 
 
 Correct 
Incorrect
Cases in which there is a clear history of an acute 
precipitating viral infection occurring in an 
1.  
 
 
uncomplicated psychological background have a 
better prognosis. 
The combination of cognitive behavioural therapy 
2.   and antidepressants should be the mainstay of   
 
treatment. 
3.   A patient’s belief that a physical, (e.g. viral) rather 
 
than a psychological cause underlies CFS is to be   
 
 
encouraged as it will improve the prognosis 
Reported prevalence in primary care is in the region 
4.  
 
 
of 1 – 2%. 
Some degree of short-term memory impairment is 
5.   invariably present in CFS when neuro-psychological   
 
 
tests are performed. 
Hyposomnia rather than hypersomnia is more 
6.  
 
 
common in non-post-viral cases. 
The onset of symptoms without any clear 
7.   precipitating cause is a positive prognostic factor   
 
 
even in situations where there is an adverse social 
background. 
 
Name:   
GMC/NMC   
 
Number:
SIGNATURE: 
 
DATE: 
 
 
On completion please return to the Medical Manager at your 
Medical Services Centre. 

Chronic Fatigue Syndrome - Guidelines for the Disability Analyst 
Version 5 Final 
Reference:  MED/S2/CMEP~0017 
 
Page  24 
 

 
 
 

 
Medical Services 
  
Observation Form 
Please photocopy this page and use it for any comments and observations on this 
document, its content or layout, or your experience of using it.  If you are aware of 
other standards to which this document should refer, or a better standard, you are 
requested to indicate on this form.  Your comments will be taken into account at the 
next scheduled review. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Name 
of 
sender: 
      Date: 
Location and telephone number: 
 
Please return this form to: 
Angie Rhodes 
                                   
 
 
Training and Development Co-ordinator 
 
 
 
 
 
Atos Healthcare 
     3300 
Solihull 
Parkway 
     Birmingham 
Business 
Park 
 
 
 
 
 
Birmingham 
                                
B37 7YQ 
 
Chronic Fatigue Syndrome - Guidelines for the Disability Analyst 
Version 5 Final 
Reference:  MED/S2/CMEP~0017 
 
Page  25