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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 6 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 medical 
practitioners, registered nurses or registered physiotherapists, 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 Healthcare 
Professionals and disability analysts, the 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 
 
July 2012 
 
 
 
 
 
 
Chronic Fatigue Syndrome - Guidelines for the Disability Analyst 
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Document control 
Superseded documents  
Version history 
Version Date 
Comments 
6 Final 
27 July 2012 
Signed off by CMMS 
6b Draft 
25 July 2012 
Updated following external QA by HWD 
6a Draft 
01 June 2012 
Schedule 28 Review – Medical Training & 
Development 
5 Final 
16 June 2011 
Signed off by CMMS 
5b Draft 
2 June 2011 
Updated following feedback from HWD 
5a 
5 May 2011 
Updated by Medical Training & Development 
following Schedule 28 review 
4 Final 
30 April 2009 
Signed off by Medical Services Contract 
Management Team 
Changes since last version 
Updated to reflect the Personalised Summary Statement and Revised WCA 
Amendment of general layout and formatting 
Addition of Appendix B – Various definitions of CFS/MS  
Addition of  Appendix C – NICE guidelines on CFS/ME 
More detail on CFS/ME included in document 
Outstanding issues and omissions 
Issue control 
Author: 
Medical Training & Development 
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. 
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In addition the author would like to express his gratitude to …………………for his 
helpful comments and suggestions.” 
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 Contents 
Section Page 
1. 
Introduction 

1.1 
Objectives 

1.2 
How to use the Guidelines 

2. 
Self-assessment exercise 1 

3. 
Self-assessment exercise 2 

3.1 
Case Study 

4. 
Overview 10 
5. 
Self-assessment exercise 3 13 
5.1 
Questions to be addressed during the disability analysis assessment
 13 
6. 
Self-Assessment exercise 4 18 
7. 
Disability Living Allowance (DLA) 19 
8. 
Self-assessment exercise 5 20 
8.1 
Prognosis 20 
8.2 
Further Reading 
21 
9. 
Conclusion 23 
Appendix A -  Chief Medical Adviser's Expert Group 25 
Appendix B -  Various Definitions of CFS / ME 33 
Appendix C -  Points from NICE Guidelines on Diagnosis and 
Management of Chronic fatigue syndrome / Myalgic encephalomyelitis 

(2007)  
 
37 
Observation Form 41 
  
 
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1. Introduction 
 
These guidelines form part of Atos Healthcare’s 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.   
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. 
1.1 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 
1.2  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 assessment protocols.  
Having completed this, you should reflect on what you have done and you may 
reconsider the case study in light of what you read. 
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Introduction 
Case Study 
Self- Assessment 
Exercises
 
 
 
Overview and 
Reflection 
 
Case Study 
Assessment 
Protocols
 
 
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2. 
Self-assessment exercise 1 
What are your perceptions of CFS / ME?  
Before proceeding with the rest of 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 / ME is entirely psychological in origin 
 
 
 
CFS / ME is wholly physical in origin 
 
 
 
CFS / ME is partly physical, 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 
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3. 
Self-assessment exercise 2  
3.1  Case Study  
Read the following case summary.   
Try to decide how you will approach the assessment 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. 

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 

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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? 
  Take a little time to draw up an idealised structure for the assessment 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. 
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4. 
Overview   
CFS / ME is a relatively common condition and it is estimated that the overall 
population prevalence is  0.2–0.4%. 
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, 
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.  
Anyone can get CFS / ME, although it is more common in women than in men. It 
usually develops in the early 20s to mid-40s. Children can also be affected, usually 
between the ages of 13 and 15.   
CFS / ME involves a complex range of symptoms that includes fatigue, malaise (in 
particular post exertional malaise), headaches, sleep disturbance, poor 
concentration / poor short term memory (‘Brain Fog’), muscle and/or joint pain, sore 
throat, tender lymph nodes, stomach pain/bloating/constipation/diarrhoea/nausea, 
sensitivity or intolerance to light/loud noise/alcohol, dizziness, excessive sweating 
and difficulty controlling body temperature .  Anhedonia, panic attacks, depression, 
irritability, and emotional lability are also commonly present.   
A person’s symptoms may fluctuate in intensity and severity, and there is also great 
variability in the symptoms different people experience. 
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 
 
 
                                            
1White 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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Diagnosis is made by a process of exclusion and in addition relies heavily on the 
person’s self-report.  Individuals often complain that their disability goes 
unrecognised because there are no visible or objective signs of illness.   
In 1994, an international panel of CFS experts established a precise definition of 
CFS / ME to allow a proper diagnosis to be made.  These are also known as the 
Fukuda criteria and are shown in Appendix A/Annex B of the appended report of the 
Chief Medical Adviser’s expert group and also in Appendix B.   These criteria are 
helpful, but are viewed by some workers as unduly restrictive in the context of case 
definition.  
The Canadian Expert Consensus Panel published a case definition for CFS / ME in 
2003, which is also used as a tool to help in the diagnosis of this condition. This and 
various other definitions are included in Appendix B. 
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. 
Most cases of CFS / ME are mild or moderate, but up to one in four people with CFS 
/ ME may have severe or very severe symptoms. These are defined as follows:  
  Mild: able to care for themselves, mobile, can do light domestic tasks with 
difficulty. May still be working or in education however may need days off  to 
rest. May have stopped all leisure and social pursuits.  
  Moderate: may have reduced mobility, may be restricted in all activities of 
daily living, although symptoms can vary. Would have usually stopped work 
or education and need rest periods. Sleep pattern is usually disturbed. 
  Severe: may be able to carry out only minimal daily tasks, such as brushing 
teeth, and may need to use a wheelchair. May also have difficulty 
concentrating and may be unable to leave the house for most of the time. 
  Very severe: unable to carry out any daily tasks for themselves and need bed 
rest for most of the day. Often, in severe cases, may experience intolerance 
to noise and become very sensitive to bright lights. 
 
There is no specific cure for CFS  / ME and treatment is based on therapies which 
help to reduce symptoms, such as medication, stress reduction, lifestyle changes 
(including diet and exercise reduction), holistic therapies, acupuncture, fluorescent 
light treatment, pacing, cognitive behavioural therapy.   
An article published in The Lancet in March 2011 gave details of results from the 
randomised trial -  PACE study - which looked at Adaptive Pacing Therapy (APT), 
Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and Specialist 
Medical Care (SMC) in the Treatment for Chronic Fatigue Syndrome (CFS). The  
results   suggested that CBT and GET could safely be added to SMC to moderately 
improve outcomes for CFS but APT was not an effective solution. 
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However the ME (Myalgic Encephalitis) Association issued a press statement on the 
results of the PACE trial on the 18th of February, 2011, which stated that ‘the results 
are at serious variance to patient evidence on both cognitive therapy and exercise 
therapy’. This was based on results from a survey performed by the ME Association 
in 2008, during which a comprehensive questionnaire was sent to people with 
Chronic Fatigue Syndrome and their carers, which suggested that pacing was found 
to be more beneficial than Graded Exercise therapy.  
The NICE guidelines produced in 2007 provide useful information on the diagnosis 
and management of adults and children with CFS / ME. The main points are 
highlighted in Appendix C. 
CFS / ME can last for years. For most people, symptoms improve over time and the 
average duration is four years. Many people make a full recovery and return to work 
and normal activities. However up to 20% of individuals have symptoms that persist 
for long periods. 
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5. 
Self-assessment exercise 3 
What is the focus of the disability analysis assessment in CFS / ME?  
Write down the questions to be addressed when assessing people with this illness. 
 
5.1  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. 
5.1.1 The 
assessment 
It goes without saying that any physical examination performed must be carried out 
with particular care and consideration.  Many sufferers complain that insensitive or 
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)” which is available on 
livelink]. 
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 
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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.  
5.1.2 
Setting the scene   
In order to ensure that the assessment 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. 
5.1.3 
History   
Symptoms  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. 
5.1.4 
Past medical history 
A history of previous episodes of fatigue has a bearing upon the prognosis.   
5.1.5 Occupational 
history 
It has been found that work-related stress may be a triggering factor, and many 
people 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 
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5.1.6 
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 Revised WCA Handbook  or Guidance for Health Care 
Professionals undertaking Disability Living Allowance/Attendance Allowance 
Assessments 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 claimants 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 / ME 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. 
5.1.7 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’ the claimant sits on the severity spectrum, 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.   
In ESA (Employment and Support Allowance), remember to look for added clues 
about the extent of variability, and other ways CFS / ME 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 ESA 50 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 / ME – 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.    
5.1.8 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 Atos 
Healthcare’s standards and recommendations. 
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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 5.1.1); 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. 
5.1.9 Psychological 
assessment 
It is rarely possible to perform a full psychological assessment.  However it is 
generally accepted that since CFS / ME encompasses both physical and 
psychological components it would be wrong to neglect either. 
Because of the possible effects on mental functioning of CFS / ME, it will almost 
always be appropriate to assess the claimant’s mental state and, in the case of the 
Work Capability Assessment (WCA), 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 / ME 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 WCA, then the reasons for not doing so should be fully justified. 
For the purposes of WCA, 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) and to the advice 
given to the Decision Maker in any of the benefit assessments.  
5.1.10 Observed 
behaviour 
This should be carefully noted, assessed and recorded.  As usual your observations 
must be focused, relevant and in accordance with Atos Healthcare’s 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. 
 
 
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5.1.11 Disability 
analysis 
in 
the context of treatment 
The combination of cognitive behavioural therapy9 and graduated exercise10  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.   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
_______________________________________________ 
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 
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6. 
Self-Assessment exercise 4 
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 
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 personalised summary 
statement for the above case, might read: 
“Mr X has chronic fatigue syndrome and generalised osteoarthritis. He lives alone 
and manages to self care, however he is unable to mobilise on prolonged distances 
due to the combination of pain and fatigue.”  
 
 
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7. 
Disability Living Allowance (DLA) 
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’ (available 
on livelink); 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 
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). 
 
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8. 
Self-assessment exercise 5 
What factors do you take into consideration at present when advising the decision 
maker on prognosis? 
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; 
  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).  
 
 
 
 
_________________________________ 
11Chief Medical Adviser’s Expert Group; Chronic fatigue syndrome. Department of Social 
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Security 1996 
8.2  Further Reading 
  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/ 
  Occupational aspects of the Management of Chronic Fatigue Syndrome: A 
National Guideline (2006)- 
http://www.nhsplus.nhs.uk/providers/images/library/files/guidelines/CFS_guid
eline.pdf 
  Treatments for chronic fatigue syndrome (Occupational Medicine review – K 
A Rimes & T Chalder 2005) - http://www.ncbi.nlm.nih.gov/pubmed/15699088 
 Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic 
encephalomyelitis in adults or children (National Collaborating Centre for 
Primary Care & Royal College of GPs) – 
http://www.nice.org.uk/nicemedia/pdf/CG53FullGuidance.pdf 
  A systematic review describing the prognosis of chronic fatigue syndrome (R. 
Cairns & Hotopf 2005) - http://www.ncbi.nlm.nih.gov/Structure/cdd/wrpsb.cgi 
  Disability and Chronic Fatigue Syndrome – A Focus on Function (Ross et al 
2004) - http://www.cfids-cab.org/cfs-inform/Cfsliving/ross.etal04.pdf 
  Chronic Fatigue Syndrome: A Review (Afari N & Buchwald, D) - 
http://www.ncbi.nlm.nih.gov/pubmed/12562565 
  NICE – http://www.nice nice.org.uk 
  Canadian Expert Consensus Panel Criteria for ME/CFS – http://www.cfids-
cab.org/MESA/ccpc.html 
 NHS 

http://www.nhs.uk/conditions/chronic-fatigue-
syndrome/pages/introduction.aspx 
  Various documents available on livelink including: 
  Revised WCA Handbook 
  Guidance for Health Care Professionals undertaking Disability Living 
Allowance/Attendance Allowance Assessments Handbook 
  Mobility Questions in DLA 
  General Principles of Examination Learning Set 
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  EBM – Chronic Fatigue Syndrome  / Myalgic Encephalomyelitis 
 
 Variability 
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 assessment of a person with the 
condition. 
  What areas of the history would you concentrate on, and why? 
  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. 
 
 
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9. Conclusion 
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 
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. 
 
 
 
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Name: Registration 
Number: 
Signature: Date: 
 
 
 
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 / ME 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 / ME 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 
 
 
On completion please return to the Clinical Manager or Training 
Support Manager at your Medical Services Centre
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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. 
 
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-  
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.   
 
 
 
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.   
 
 
 
 
 
 
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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. 
 
 
-  
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. 
 
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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 
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. 
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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. 
 

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] 
 
…………………………. 
  
 
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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Appendix B -  Various Definitions of CFS / ME 
 
International Centre for Disease Control 1988 definition 
 
Major criteria
 
• new onset of persistent or relapsing, debilitating fatigue in a person without a previous 
history of such symptoms that does not resolve with bed rest and that is severe enough to 
reduce or impair average daily activity to less than 50% of the patient’s premorbid activity 
level for at least six months 
• fatigue that is not explained by the presence of other evident medical or psychiatric 
illnesses. 
 
Minor criteria
 
At least six symptoms plus at least two signs, or at least eight symptoms, from the lists 
below: 
symptoms: 
• mild fever or chills 
• sore throat 
• painful adenopathy (posterior or anterior, cervical or axillary) 
• generalised muscle weakness 
• myalgias 
• prolonged generalised fatigue after previously tolerated levels of physical activity 
• generalised headaches 
• migratory arthralgia without swelling or redness 
• neuropsychologic complaints 
• sleep disturbance 
• main symptom complex developing over a few hours to a few days. 
physical signs: 
• low grade fever 
• nonexudative pharyngitis 
• palpable or tender anterior or posterior, cervical or axillary lymph nodes. 
 
From: Holmes GP, Kaplan JE, Gantz NM et al. Chronic fatigue syndrome: a working case 
definition. Annals of Internal Medicine 1988, 108:387–389. 
 
 
 
International Centre for Disease Control 1994 definition 
 
Clinically evaluated, unexplained, persistent or relapsing chronic fatigue lasting more than six 
months 
• of new or definite onset 
• not the result of ongoing exertion 
• not substantially alleviated by rest 
• including substantial reduction in previous levels of occupational, social or personal 
activities 
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Clinical evaluation should include history, physical examination, mental state examination 
and laboratory tests, including FBC, ESR, LFTs, total protein, albumin, globulin, calcium, 
phosphate, glucose, urea, electrolytes, TSH and urinalysis. 
 
Four of the following symptoms concurrently present for at least six months 
• sore throat 
• tender cervical or axillary lymph nodes 
• muscle pain 
• multi-joint pain 
• new headaches 
• unrefreshing sleep 
• post-exertion malaise. 
 
Exclusion criteria
• active, unresolved, or suspected disease likely to cause fatigue 
• psychotic, melancholic or bipolar depression 
• psychotic disorders 
• dementia 
• anorexia or bulimia nervosa 
• alcohol or other substance misuse 
• severe obesity. 
 
From: Fukuda K, Straus SE, Hickie I et al. The chronic fatigue syndrome: a comprehensive 
approach to its definition and study. Annals of Internal Medicine 1994, 121:953–959. 
 
 
 
Oxford definition 
 
Severe, disabling fatigue lasting at least six months that: 
• affects both physical and mental functioning 
• is present more than 50% of the time 
 
Other symptoms possibly present: 
• myalgia 
• sleep disturbances 
• mood disturbance. 
 
Exclusion criteria
• active, unresolved or suspected disease likely to cause fatigue 
• psychotic, melancholic or bipolar depression (but not uncomplicated major depression) 
• psychotic disorder 
• dementia 
• anorexia or bulimia nervosa. 
 
From: Sharpe MK, Archard LC, Banatvala JE, et al. A report – chronic fatigue syndrome: 
Guidelines for research. Journal of the Royal Society of Medicine 1991, 84:(2)118–121. 
 
 
 
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Australian definition 
 
Disabling and prolonged feelings of physical tiredness or fatigue, exacerbated by physical 
activity, and: 
• present for at least six months 
• unexplained by an alternative diagnosis reached by history, laboratory, or physical 
examinations 
• accompanied by new onset of neuropsychological symptoms including impaired short-term 
memory and concentration, decreased libido, and depressed mood. These symptoms usually 
have their onset at the same time as the physical fatigue, but are typically less persistent 
than those seen in classic depressive illness. 
 
Exclusion criteria: 
• chronic medical condition that may result in fatigue 
• history of schizophrenia, other psychotic illnesses, or bipolar affective disorder 
• Drug or alcohol dependence makes CFS very unlikely. 
 
From: Lloyd AR, Hickie I, Broughton CR, et al. Prevalence of chronic fatigue syndrome in 
an Australian population. Med J Aust 1990, 153:522-528. 
 
 
 
Canadian definition 
 
A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or 
fatigue, sleep dysfunction and pain (items 1–4); have two or more neurological/cognitive 
manifestations (item 5) and one or more symptoms from two of the categories of autonomic, 
neuroendocrine and immune manifestations (item 6); and adhere to item 7. 
 
1.  Fatigue:  The patient has a significant degree of new onset, unexplained, persistent, or 
recurrent physical and mental fatigue that substantially reduces activity level. 
2.  Post-exertional malaise and/or fatigue: There is an inappropriate loss of physical and 
mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or 
fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster 
of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or 
longer. 
3.  Sleep dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances 
such as reversed or chaotic diurnal sleep rhythms. 
4.  Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles 
and/or joints, and is often widespread and migratory in nature. Often there are significant 
headaches of new type, pattern or severity. 
5.  Neurological/cognitive manifestations: Two or more of the following difficulties should be 
present: confusion, impairment of concentration and short-term memory consolidation, 
disorientation, difficulty with information processing, categorising and word retrieval, and 
perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability 
to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be 
overload phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise – 
and/or emotional overload, which may lead to “crash” periods and/or anxiety. 
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* There are a small number of patients who have no pain or sleep dysfunction, but no other 
diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group 
has an infectious illness type onset. 
6. At least one symptom from two of the following categories: 
a.  Autonomic manifestations: orthostatic intolerance – neurally mediated hypotension, 
postural orthostatic tachycardia syndrome, delayed postural hypotension; light-headedness; 
extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder 
dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnoea. 
b.  Neuroendocrine manifestations: loss of thermostatic stability – subnormal body 
temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of 
feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight 
change – anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with 
stress. 
c.  Immune manifestation: tender lymph nodes, recurrent sore throat, recurrent flu-like 
symptoms, general malaise, new sensitivities to food, medications and/or chemicals. 
7. The illness persists for at least six months. It usually has a distinct onset,** although it may 
be gradual. Preliminary diagnosis may be possible earlier, three months is appropriate for 
children. 
 
To be included, the symptoms must have begun or have been significantly altered after the 
onset of this illness. It is unlikely that a patient will suffer from all symptoms in 5 and 6. 
The disturbances tend to form symptom clusters that may fluctuate and change over time. 
Children may have numerous prominent symptoms but their order of severity tends to vary 
from day to day. 
 
Exclusions:  Exclude active disease processes that explain most of the major symptoms of 
fatigue, sleep disturbance, pain and cognitive dysfunction. It is essential to exclude certain 
diseases, which would be tragic to miss: Addison’s disease, Cushing’s syndrome, 
hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anaemia, iron 
overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable 
sleep disorders such as upper airway resistance syndrome and obstructive or central sleep 
apnoea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and 
polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as 
multiple sclerosis, Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases 
such as tuberculosis, chronic hepatitis, Lyme disease, etc; primary psychiatric disorders and 
substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the 
patient’s history and physical examination, is achieved by laboratory testing and imaging. If a 
potentially confounding medical condition is under control, then the diagnosis of ME/CFS can 
be entertained if the patients meet the criteria otherwise. 
 
From: Canadian Expert Consensus Panel Criteria for ME/CFS –   http://www.cfids-
cab.org/MESA/ccpc.html 
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Appendix C -  Points from NICE Guidelines on 
Diagnosis and Management of Chronic fatigue 
syndrome / Myalgic encephalomyelitis (2007) 

These guidelines were reviewed in 2010 – 2011 to determine whether any amendments 
needed to be made to the 2007 guidelines in view of more recent medical evidence, however 
no new evidence was available to suggest that a change was required.  
 
Advice on symptom management should not be delayed until a diagnosis is established. This 
advice should be tailored to the specific symptoms the person has and be aimed at 
minimising their impact on daily life and activities. 
 
A diagnosis should be made after other possible diagnoses have been excluded and the 
symptoms have persisted for: 
  4 months in an adult 
  3 months in a child or young person  (the diagnosis should be made or 
confirmed by a  paediatrician) 
 
Healthcare professionals should proactively advise about fitness for work and education, and 
recommend flexible adjustments or adaptations to work or studies to help people with CFS / 
ME to return to them when they are ready and fit enough.  
This may include, with the informed consent of the person with CFS/ME, liaising with 
employers, education providers and support services, such as: 
  occupational health services 
  disability services through Jobcentre Plus 
  schools, home education services and local education authorities 
  disability advisers in universities and colleges. 
 
 
Specialist CFS/ME care 
 
Any decision to refer a person to specialist CFS/ME care should be based on their needs, the 
type, duration, complexity and severity of their symptoms, and the presence of co 
morbidities. The decision should be made jointly by the person with CFS/ME and the 
healthcare professional. 
 
An individualised, person-centred programme should be offered to people with CFS/ME. The 
objectives of the programme should be to: 
  sustain or gradually extend, if possible, the person’s physical, emotional and 
cognitive capacity 
  manage the physical and emotional impact of their symptoms 
 
Cognitive behavioural therapy and/or graded exercise therapy should be offered to people 
with mild or moderate CFS/ME and provided to those who choose these approaches, 
because currently these are the interventions for which there is the clearest research 
evidence of benefit. 
 
 
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Diagnosis of CFS / ME 
 
Consider the possibility of CFS/ME if a person has: 
 
Fatigue with all of the following features: 
  new or had a specific onset (that is, it is not life long) 
  persistent and/or recurrent 
  unexplained by other conditions 
  has resulted in a substantial reduction in activity level characterised by post-
exertional malaise and/or fatigue (typically delayed, for example by at least 24 
hours, with slow recovery over several days) 
and 
One or more of the following symptoms: 
  difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a 
disturbed sleep–wake cycle 
  muscle and/or joint pain that is multi-site and without evidence of inflammation 
 headaches 
  painful lymph nodes without pathological enlargement 
 sore 
throat 
  cognitive dysfunction, such as difficulty thinking, inability to concentrate, 
impairment of  short-term memory, and difficulties with word-finding, planning 
or organising thoughts and information processing 
  physical or mental exertion makes symptoms worse 
  general malaise or ‘flu-like’ symptoms 
  dizziness and/or nausea 
  palpitations in the absence of identified cardiac pathology 
 
The symptoms of CFS/ME fluctuate in severity and may change in nature over time. 
 
Consider other diagnoses or co morbidities before attributing clinical features to CFS/ME. In 
particular, investigate these ‘red flag’ features: 
  localising/focal neurological signs 
  signs and symptoms of inflammatory arthritis or connective tissue disease 
  signs and symptoms of cardio respiratory disease 
  significant weight loss 
 sleep 
apnoea 
  clinically significant lymphadenopathy 
 
 
Investigations 
 
These tests should usually be done: 
  urinalysis for protein, blood and glucose 
 full 
blood 
count 
  urea and electrolytes 
 liver 
function 
 thyroid 
function 
  erythrocyte sedimentation rate or plasma viscosity 
 C-reactive 
protein 
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  random blood glucose 
 serum 
creatinine 
  screening blood tests for gluten sensitivity 
 serum 
calcium 
 creatine 
kinase 
  assessment of serum ferritin levels (children and young people only) 
 
Use clinical judgement to decide on additional tests to exclude other diagnoses. 
Do not do: 
  tests for serum ferritin in adults, unless other tests suggest iron deficiency 
  tests for vitamin B12 deficiency or folate levels, unless a full blood count and 
mean cell volume show a macrocytosis 
  serological testing, unless there is an indicative history of an infection -  if so, 
consider tests for: chronic bacterial infections, such as borreliosis; chronic viral 
infections, such as HIV or hepatitis B or C; acute viral infections, such as 
infectious mononucleosis (heterophile antibody tests); latent infections, such 
as toxoplasmosis, Epstein–Barr virus or cytomegalovirus 
 
Do not do the following tests routinely: 
  the head-up tilt test 
  auditory brainstem responses 
 electrodermal 
conductivity 
 
Reconsider the diagnosis of CFS/ME if the person has none of the following symptoms: 
  post-exertional fatigue or malaise 
 cognitive 
difficultés 
 sleep 
disturbance   
 chronic 
pain. 
 
Symptom management 
 
Manage symptoms of CFS/ME as in usual clinical practice.   
 
Share decision making with the person with CFS/ME during diagnosis and all phases of care.  
Acknowledge the reality and impact of the condition and the symptoms.  Provide information 
on the range of interventions and management strategies covered in this guideline, including 
their risks and benefits. Take into account the person’s age, the severity of their symptoms 
and the outcome of previous treatments. 
 
Specific drug treatment for children and young people should be started by a paediatrician. It 
may be continued in primary care, depending on the preferences of the child or young person 
and their carers, and local circumstances. 
 
Complementary therapies are not usually recommended but may help symptom control 
 
Supplements such as vitamin B12, vitamin C, co-enzyme Q10, magnesium, NADH 
(nicotinamide adenine dinucleotide) or multivitamins and minerals are also not usually 
recommended but may help symptom control 
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Function and quality-of-life management 
 

  Sleep management – provide tailored sleep management advice, do not encourage 
daytime sleeping/naps 
  Rest periods – advise people on how to introduce ‘rest periods’ into their routine 
  Relaxation – various relaxation techniques can be advised for managing pain, sleep 
problems, co morbid stress or anxiety 
  Diet – emphasize importance of well balanced diet, eating regularly, develop 
strategies to minimise problems due to nausea, sore throat, swallowing problems, or 
problems with buying and preparing food 
  Aids and Adaptations - For people with moderate or severe CFS/ME, consider 
providing or recommending equipment and adaptations (such as a wheelchair, blue 
badge or stair lift). This should be as part of an overall management plan, taking into 
account the risks and benefits for the individual patient, to help them to maintain their 
independence and improve their quality of life 
 
 
Education and Employment 
 
Having to stop work or education is generally detrimental to people’s health and well-being. 
Address each person’s ability to continue in education or work early, and review it regularly. 
Proactively advise about fitness for work and education, and recommend flexible adjustments 
or adaptations to help people to return to them when they are ready and fit enough. 
 
Liaise, with the person’s informed consent, with  
  Employers and occupational health services 
  Disability services through Jobcentre Plus 
  Social care and Education services 
 
 
Treatment plans 
 
Offer an individualised, person-centred program that aims to sustain and gradually extend, if 
possible, the person’s physical, emotional and cognitive capacity and manage the physical 
and emotional impact of their symptoms 
 
Explain the rationale and content of the different programmes, including their potential 
benefits and risks, and that no single strategy will be successful for all people with CFS/ME, 
or at all stages 
 
Recognise that the person is in charge of the aims of the programme. Agree together the 
choice of programme, its components, and progression through it, based on: 
  the person’s age, preferences and needs 
  the person’s skills and abilities in managing their condition, and their goals  
  the severity and complexity of symptoms 
  physical and cognitive functioning 
 
 
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Offer cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) to people 
with mild or moderate CFS/ME, and provide them for those who choose them, because these 
are the interventions for which there is the clearest research evidence of benefit. 
Components of CBT or GET may be offered together with activity management strategies, 
sleep management and relaxation techniques, where the full CBT or GET program is not 
appropriate 
 
Offer people with severe CFS/ME an individually tailored activity management program as 
the core therapeutic strategy 
 
Consider referral to Pain Management clinic if pain is a predominant feature 
 
Consider low dose tricyclic antidepressant for poor sleep or pain 
 

Avoid 
 
  Specialist management programs which are delivered by practitioners with no 
experience in the condition 
  Giving advice to person to undertake unsupervised or unstructured vigorous exercise  
 Various drugs such as monoamine oxidase inhibitors, glucocorticoids, 
mineralocorticoids, thyroxine, antiviral agents, methylphenidate, dexamphetamine 
 
 
 
Preparing for a setback/relapse 
 
Advise people with CFS/ME that setbacks/relapses are to be expected. 
 
Develop a plan with each person with CFS/ME for managing setbacks/relapses, so that 
skills, strategies, resources and support are available when needed. This plan may be 
shared with the person’s carers, if they agree. 
 
 
 
Review and ongoing management 
 
Perform regular structured review of management, assessing improvement or deterioration in 
symptoms, assessing any side effects of medication, reviewing the diagnosis if signs and 
symptoms change, consider need for further investigation, consider referral to specialist, 
reviewing any equipment needs, assessing need for additional support. 
 
 
 
 
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requested to indicate on this form.  Your comments will be taken into account at the 
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