M.E. = Myalgic Encephalopathy/Encephalomyelitis
Myalgic = characteristic muscle symptoms. Encephalopathy = significant disorder of brain function.
Part 1: Key Symptoms
Part 2: Other Symptoms
Part 3: Severe ME/CFS
Part 4: Physical Examinations
Part 5: Baseline Investigations/Testing
Part 6: Examples of Further Tests
Part 7: Fatigue and Pain Assessments
Part 8: The Two-Day Cardiopulmonary Exercise Test (CPET)
Part 9: Mental Health Assessment
Part 10: Disability Assessment
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, talks about the possible triggers of M.E. – in particular the role of infection – and likely perpetuating factors, in a short video that was made by ME/CVS Vereniging.
ME Association clinical and research guide
The information in this section has been taken from An Exploration of the Key Clinical Issues:
- The 10th edition is a must-have for anyone who has been affected by – or has an interest in – Myalgic Encephalopathy/Encephalomyelitis (M.E.).
- It’s undergone a thorough, 6,000-word revision, is up to date, fully-referenced, and contains 147, A4-size pages.
- It features a thorough clinical evaluation and all relevant published research.
- Written by Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Dr Abhijit Chaudhuri, Consultant Neurologist, Essex Centre for Neurosciences, Clinical Issues is reviewed and revised on an annual basis.
- You can purchase a copy from our online shop or by contacting head office on 01280 818964 (Monday-Friday, 9.30am to 3.00pm).
Free copy available for health professionals!
We have funds set aside in our medical education budget to provide free copies of our clinical and research guide to GPs and other health professionals. Contact us with the details on the phone number above, or send head office an email.
Prominent symptoms in one patient may be quite different to those seen in others. Some patients are predominantly affected by mobility problems whereas others find aspects of cognitive dysfunction or pain to be a far more disabling component of their illness.
However, the core symptom of ME/CFS is profound and disabling fatigue, which almost always affects both physical and mental functioning. The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest.
- One of the most striking features of this fatigue is what is termed ‘post-exertional malaise’ or ‘post-exertional symptom exacerbation’.
Symptoms follow a characteristic pattern of variability (often fluctuating throughout the course of a day) and chronicity. Patients will often describe how they experience ‘good days’ and ‘bad days’, with fluctuations in severity being influenced by physical activity, stress, infections and temperature excesses.
The seven key symptoms for making a diagnosis of ME/CFS are:
1. Post-exertional malaise or symptom exacerbation: the key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks. The amount of activity that provokes increased symptoms is related to severity and in some people, can be very modest.
2. Activity-induced muscle fatigue: precipitated by trivially small exertion (physical or mental) relative to the patient’s previous activity tolerance: which may be accompanied by muscle pain.
3. Cognitive dysfunction: commonly including problems with short-term memory and working memory (the ability to deal with tasks quickly), problems with concentration and attention span (especially affecting visuospatial tasks), inability to plan or organise thoughts and problems with word-finding abilities – anomia (difficulty in naming common objects) and dysnomia (the inability to give objects a correct name).
These problems are often referred to as ‘brain fog’ by people with ME/CFS. Cognitive dysfunction is exacerbated by physical exertion and stress and may be more prominent where there is clinical depression. Cognitive dysfunction alone is often severe enough to cause a substantial reduction in previous levels of occupational, educational, personal and social activities. Long-term memory is not usually affected, and progressive mental impairment is unusual. If this type of cognitive decline occurs, further neurological assessment must be considered.
4. Pain: that can be persistent and difficult to control. Pain is often muscular, but it can also be rheumatic or neuropathic (where it has a burning or searing quality and may be associated with paresthesia and other sensory disturbances). Some patients may also have a fibromyalgic component to their pain. However, a significant minority of patients experience little or no pain.
5. Sleep disturbance: non-refreshing pattern that can include both hypersomnia (early in the illness) and insomnia, reversal of sleep rhythm (especially in children), vivid dreams and ‘restless legs’.
A primary sleep disorder should form part of the differential diagnosis – especially in patients where there are risk factors (e.g. BMI > 35; neck collar size 17 or above) or symptoms (e.g. excessive snoring, dry mouth or apnoeic episodes) suggestive of sleep apnoea or primary restless legs syndrome. The main symptom is usually inappropriate sleepiness rather than exercise-induced fatigue.
6. On-going, flu-like malaise: A general feeling of ‘being unwell’ that is accompanied by sore throat, tender lymph glands and problems with temperature control (e.g. feeling feverish, sweating episodes).
7. Autonomic symptoms: including orthostatic intolerance. Autonomic symptoms are very common in ME/CFS, and orthostatic intolerance refers to an inability to sustain upright activity. Symptoms of orthostatic intolerance occur after standing up from a recumbent or resting position or after prolonged standing. They include lightheadedness, spatial disorientation, feeling faint, sweating, palpitations and fainting.
It is important to identify postural autonomic symptoms in patients because these patients are more likely to become bed-bound due to the fact that standing up makes them feel much worse.
Autonomic symptoms can be assessed using the Orthostatic Grading Scale that allows a quantification of symptoms in relation to standing. Scores of 4 or above are consistent with orthostatic intolerance. Scores of 9 and above are consistent with orthostatic hypotension.
Those who have postural dizziness together with a history of loss of consciousness should be assessed, diagnosed and managed according to the NICE syncope guideline (National Institute for Health and Care Excellence 2010) and the European Society of Cardiology guideline (European society of Cardiology 2009). This may involve formal autonomic testing and tilt table testing. Ideally, this should include continuous beat-to-beat heart rate and blood pressure measurement in order to detect subtle blood pressure changes.
Other symptoms that are commonly reported and are consistent with a diagnosis of ME/CFS include:
- Disequilibrium and problems with balance: Feelings of unsteadiness are more frequently reported than vertigo and may be due to vestibular dysfunction (Palaniappan and Sirimanna 2002).
- Disturbed thermoregulation: (Wyller et al 2007): Feeling feverish, night sweats, hypersensitivity to temperature extremes.
- Sensory disturbances: paresthesia and sometimes hemisensory pain or dysesthesia of the extremes. Where sensory disturbances occur as a new symptom, consideration should be given to other possible explanations – e.g. diabetes, Sjögren’s syndrome, vitamin B12 deficiency, etc.
- Hyperacusis, tinnitus and/or photophobia.
- Headaches of a new type, pattern or severity. Migraine headaches are reported to be more common in ME/CFS (Ravindran et al 2011).
- Shakiness but not tremor.
- Arthralgia – which may be widespread – but not including swelling, redness or joint deformity. A co-existent hypermobility syndrome should be considered in people who have joint pain. It is also worth performing a rheumatology screen and checking antinuclear antibody status.
- Irritable bowel syndrome-type symptoms. But note that new onset of irritable bowel syndrome (IBS) type symptoms over the age of 50 is unusual and the possibility of other explanations should be considered. Early symptoms of ovarian cancer can include IBS-type symptoms, fatigue, urinary symptoms and back pain. Consider bile acid diarrhoea if diarrhoea is prominent.
- Nausea and other upper gastrointestinal symptoms (e.g. fullness and bloating after a meal) may indicate gastric motility dysfunction (Burnet and Chatterton 2004).
- Alcohol intolerance, drug and chemical sensitivities. Alcohol intolerance, sometimes complete, is a very common feature of ME/CFS, and the diagnosis should certainly be queried in people who report that they can carry on drinking alcohol without any problem. Anecdotal evidence suggests that the intolerance may decrease in people who make a significant degree of recovery.
- Recurrent sore throats and tender cervical or axillary lymph nodes.
- Increased susceptibility to upper respiratory tract illnesses (Faulkner and Smith 2008). Some people with ME/CFS complain of shortness of breath and other chest symptoms. However, there is no consistent research evidence at present to demonstrate abnormal pulmonary function in ME/CFS (Ravindran et al 2013).
- Eye symptoms are quite commonly reported. These may include increased awareness or sensitivity to bright light, visual or reading fatigue, difficulty with focusing on images and following moving images, pain in or around the eye and vision-related headaches after reading. Visual symptoms in ME/CFS are currently the subject of research being carried out by Dr Claire Hutchinson at the University of Leicester.
- Cardiac Syndrome X: An increased incidence of cardiac syndrome X (angina-type chest pain with normal coronary arteriogram but abnormal thallium 201 SPECT scan results) has been reported.
- Allergic reactions: A tendency to develop allergic conditions (Straus et al 1988b) and rhinitis (Baraniuk et al 1998), as chronicity develops, has also been reported. Yang et al (2015) have reported that atopy is associated with ME/CFS, particularly in patients with numerous atopic syndromes. However, rates of positive allergy skin tests and ranges of IgE antibodies are reported to be similar in people with ME/CFS and controls (Baraniuk et al 1998). Chronic allergic inflammation is often accompanied by fatigue and patients with perennial rhinosinusitis may present with ME/CFS-like symptoms, along with headaches and disturbed sleep.
As noted in the report to the Chief Medical Officer into ME/CFS (CFS/ME Independent Working Group 2002; section 22.214.171.124), more severely affected patients, usually a small minority, may experience:
- Serious neurological symptoms, including double vision, blackouts, atypical convulsions or seizures, loss of speech and loss of swallowing ability
- Extreme sensitivity to noise and light
- Muscle wasting and weight loss may also occur
- Swallowing difficulties may necessitate nasogastric or percutaneous endoscopic gastrostomy feeding.
There are serious deficiencies in the way that severely affected ME/CFS patients (i.e. those who spend a considerable period house-, wheelchair- or bed-bound) are managed in both primary and secondary care.
⇒ Although no accurate figures are available, it is estimated that around 25% of all people with ME/CFS will fall into this category at some stage in their illness.
Feedback to the ME Association indicates that a great deal more could be done at a primary care level in relation to the provision of:
- Regular home assessments by GPs,
- Involvement of community nurses, occupational therapists and physiotherapists,
- Investigation of new or prominent symptoms,
- Effective symptom control and pain management,
- Support from social services, and
- Availability of local respite care.
Hospital in-patient facilities
When it comes to secondary care, there are very few hospitals with inpatient facilities to which severely affected patients can be referred for both clinical assessment and management (McDermott et al 2014) – although there is one exception:
The National Inpatient Centre for Psychological Medicine (NICPM) which offers an eight-bed specialist inpatient unit for people severely affected by ME/CFS. It is based at Leeds General Infirmary, and half the beds are for people from Leeds with the other half for other people from around the UK. They provide the inpatient care for the Leeds and West Yorkshire CFS/ME service.
Even where facilities do exist, more consideration needs to be given to practical problems faced by the severely affected when attending outpatient appointments. The situation is even worse in relation to the provision of suitable facilities for in-patient management and for domiciliary assessment of severely affected patients who are unable to travel.
It should also be noted that very few of the research studies into either pathoaetiology or management of ME/CFS have ever involved severely affected patients or children – a fact that should be borne in mind when considering the general use of controversial management approaches such as CBT and/or graded exercise.
As noted previously, several more severe neurological symptoms can occur in the severely affected group. Problems with swallowing may require nutritional support through either tube feeding or through a percutaneous endoscopic gastrostomy. The possibility of coexistent vitamin D deficiency should also be considered.
Research into severe M.E.
Research funded by the ME Association into factors that may be involved in the development of severe ME/CFS (Pheby and Saffron 2009) has shown that the type of early illness management appears to be the most important determinant of severity.
Having a mother with ME/CFS was also important – possibly related to mitochondrial inheritance. Pre-morbid personality was not a risk factor, and neurotic traits were more frequent among the less severely ill. Conscientiousness overall was not related to severity.
One recent study (Pendergrast et al 2016), from a research group at Newcastle University, reported that people with ME/CFS who are housebound are significantly more impaired in relation to physical functioning, bodily pain, vitality, social functioning, fatigue, post-exertional malaise, sleep, pain and neurocognitive, autonomic, neuroendocrine (hormonal) and immune system functioning than people with ME/CFS who are not housebound.
The ME Biobank at the Royal Free Hospital, which we fund, is collecting blood samples from people with severe ME/CFS in their homes – so that researchers who require blood samples and clinical details from people with severe ME/CFS will now be able to do so.
> Helping you cope with Severe ME
In this 12-page leaflet, we discuss severe ME/CFS – the symptoms, some thoughts about management, how the illness can be explained to your family and carers, together with the medical and social help you may be able to obtain.
It contains a two-page checklist that you can pass on to the people responsible for your care, and severe sufferer, Hannah Radenkova, describes what it’s like being on the receiving end of the stigma that is so often attached to the illness.
You might also be interested to read a blog we posted for Severe ME Day 2017 that also listed all the resources we have available, that may be of interest to some severely affected, or to those that care for them.
Most medical reviews of ME/CFS state that there are no significant physical examination findings in this illness. This is then interpreted to be consistent with the erroneous view that ME/CFS is a psychosomatic condition.
However, there are a number of more frequent abnormalities that may be found on careful physical examination, including orthostatic heart rate and blood pressure changes, joint hypermobility and a reduced range of motion.
A full physical examination should always form part of the initial clinical assessment.
Orthostatic heart rate and blood pressure changes may be present, sometimes at rest, but more consistently during a period of supine to upright exposure. In response to standing or tilt table testing, there is a higher incidence of neurally-mediated hypotension and postural orthostatic tachycardia syndrome. The presence of heart rate and blood pressure abnormalities is higher in adolescents than in adults.
Joint hypermobility Some people with ME/CFS also have a genetic disorder of connective tissue known as Ehlers Danlos syndrome. This can cause stretchy and/or fragile skin, loose hypermobile joints that may dislocate, delayed wound healing and a tendency to develop early onset of varicose veins.
Those with ME/CFS and orthostatic intolerance have a higher incidence of Ehlers Danlos syndrome (Rowe PC et al 1999). Professor Peter Rowe, a leading expert in joint hypermobility and ME/CFS from Johns Hopkins Hospital, USA, has also observed that those with joint hypermobility have postural abnormalities that are thought to be a consequence of the effect of gravitational loading of the spine, including a head-forward posture, a rounded appearance of the thoracic spine and increased lumbar curvature. For more information, see Rowe PC 2014.
Rowe PC et al (2014) have also reported that a reduced range of motion of the limbs and spine was significantly more common in adolescents and young adults with ME/CFS than in carefully matched controls.
Clinical examination should also include:
- Height and weight – very small stature may indicate a rare mitochondrial disorder.
- Checking for signs of anaemia, thyroid and liver diseases and sleep apnoea.
- Neurological examination should look for specific abnormalities, including obvious muscle wasting, ptosis, upper motor neuron signs, absent reflexes, etc. If any of these are present, referral to a neurologist is indicated.
- Tests of balance and vestibular function (e.g. Romberg and Fukuda) should be carried out in patients who complain of disequilibrium. This may be due to vestibular dysfunction (Ash-Bernal et al 1995; Palaniappan and Sirimanna 2002).
- Checking skin, joints, lymph nodes for signs of systemic inflammatory disease.
- Tender lymph nodes in the cervical region may occur intermittently in conjunction with sore throats. New or significant lymphadenopathy requires careful clinical evaluation and may necessitate further investigation to exclude serious pathology.
Mandatory tests and investigations
The diagnosis of ME/CFS should essentially be made on the typical pattern of symptoms with the exclusion of other possible conditions that can present with fatigue and general ill-health.
Anyone suspected of having ME/CFS should have the following routine investigations:
- ESR and C-reactive protein. If raised, a search for an alternative diagnosis – inflammatory, infective, malignancy, etc. – should be pursued. NB: Typically normal in ME/CFS.
- Haemoglobin, red cell indices and serum ferritin – which can be the first lab marker to change when iron deficiency is present – in children, adolescents and vegetarians and where there is co-existent restless legs sleep disturbance. B Low folate has been reported in ME/CFS (Jacobson et al 1993). A raised mean corpuscular volume is associated with folate deficiency, vitamin B12 deficiency and hypothyroidism. Iron deficiency could indicate coeliac disease.
- Vitamin B12 status should be checked in anyone (a) with neurological or other symptoms that are found in vitamin B12 deficiency, (b) who is at risk of developing any type of B12 deficiency (e.g. vegans), (c) who has an autoimmune disease or with a family history of autoimmune disease, or (d) who has an atypical onset to their illness.
- White cell count and differential. NB: Minor abnormalities may be present, especially during the early stages. A lowered white blood cell count can occur in systemic lupus erythematosus.
- Biochemical panel, including calcium, phosphorous, electrolytes, total protein, albumin, globulin, random or fasting blood sugar, etc.
- Liver function tests – including alkaline phosphatase, aspartate and alanine aminotransferases (AST/ALT). Abnormalities in liver function tests should always raise the possibility of a separate liver problem that may also cause fatigue – for example, infections such as hepatitis and HIV, primary biliary cirrhosis and non-alcoholic fatty liver disease.
- Serum creatinine.
- Serum creatine kinase. A raised creatine kinase can be found in hypothyroid myopathy and as a result of treatment with statins.
- Thyroid function tests. Hypothyroidism becomes increasingly common over the age of 50, and the development of intercurrent thyroid disease in a patient with established ME/CFS is not therefore uncommon. Unfortunately, this can be missed or delayed because the thyroid symptoms are attributed to a relapse or exacerbation of existing ME/CFS symptoms.
- Serological screening for coeliac disease with IgA antitissue transglutaminase antibodies, especially in the presence of any irritable bowel-type symptoms (Skowera et al 2001). It is important to continue eating gluten until blood tests (and a gut biopsy where necessary) have been carried out because excluding gluten from the diet will dampen the immune response. People with coeliac disease may also have selective IgA deficiency, making this test invalid, so total serum IgA should be checked in parallel.
- Electrocardiogram (ECG) in adults where there is a history of chest pain – query cardiac syndrome X.
- Epworth Sleepiness Score or the Pittsburgh Sleep Quality Index if there is any suggestion of a primary sleep disorder being present. Sleep disturbance is almost universal in ME/CFS, and a recent study has investigated sleep differences between 22 ME/CFS patients and 22 healthy controls using polysomnography over three consecutive nights (Gotts et al 2016a). 9.1% of the ME/CFS group met criteria for an objectively verifiable sleep disorder.
- Height and weight charts must be maintained in all paediatric cases of ME/CFS where laboratory tests may not always be possible.
If significant abnormalities in any of the above routine investigations are found, this always indicates the need to consider and pursue other diagnostic explanations that might explain the symptoms.
Blood Tests Explained
Examples of Further Tests
- Autonomic function tests (e.g. tilt-table testing) and Composite Autonomic Symptom Scale (COMPASS) if autonomic symptoms, syncope or postural hypotension are prominent.
- Chest X-ray if there is a history of chronic cough.
- Infectious disease screen if there is any possibility of chlamydia pneumonia (Chia JK and Chia LY 1999), hepatitis B/C, HIV, Lyme disease, mycoplasma, Q fever, etc.
- MRI scan of brain if multiple sclerosis is considered possible.
- Muscle biopsy if serum creatine kinase is raised or where there is progressive deterioration in muscle strength and/or muscle wasting.
- Rheumatology and autoantibody screen if any degree of arthralgia is prominent.
- Schirmer’s test if dry eyes – possibility of Sjögren’s syndrome. Some patients with chronic fatigue have dry eyes and mouth and other features suggestive of Sjögren’s syndrome.
- Serum 25-hydroxy vitamin D (25-OHD). Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight.
- Serum estradiol and follicle-stimulating hormone if there is significant premenstrual exacerbation of symptoms (Studd and Panay 1996) or the possibility of an early menopause.
- Serum prolactin and neuroradiology investigations if there are symptoms that could be caused by a pituitary tumour (e.g. headaches, eye problems and symptoms suggestive of prolactin excess such as acne, galactorrhoea, hirsutism, menstrual irregularities, loss of libido) or hypopituitarism (Coucke et al 2013; Hurel et al 1995).
- Short synacthen (ACTH) test if plasma or urinary cortisol is low with symptoms (i.e. weight loss, nausea, pigmentation of non-sun exposed areas) and if routine screening tests suggest Addison’s disease (i.e. hypotension, low serum sodium, raised potassium).
- Patients with polycystic ovarian syndrome may experience fatigue as part of the metabolic syndrome. The fatigue may be compounded by a raised BMI, which is a common feature.
- An unfavourable lipid profile – increased triglycerides and lowered HDL cholesterol – has been reported in ME/CFS (Tomic et al 2012).
Fatigue and Pain Assessments
There are several scoring questionnaires, charts and diagrams that may be helpful in the assessment of fatigue and pain, for example:
The Two-Day Cardiopulmonary Exercise Test (CPET)
Research into exercise physiology in ME/ CFS carried out by Snell et al (2013) and VanNess et al (2003) and replicated by Keller et al (2014) indicates that a two-day cardiopulmonary exercise test (CPET) protocol can objectively document post-exertional malaise in ME/CFS and could be used as a diagnostic biomarker.
In simple terms, people with ME/CFS perform adequately or even well on the first day but have reduced cardiopulmonary function on the second day and are unable to reproduce their day one performance.
Mandatory features of the protocol involve:
- two identical tests separated by 24 hours,
- collection of gas exchange data, and
- use of bicycle ergometry to accurately measure work output.
This type of testing reveals a statistically significant performance decrease on day 2 (i.e. the second test) in:
- workload at ventilatory threshold,
- workload at peak exercise,
- volume of oxygen consumed at ventilatory threshold, and
- volume of oxygen consumed at peak exercise.
Results from a single CPET can be misinterpreted as deconditioning and could therefore lead to an exercise prescription that is inappropriate or even harmful for people with ME/CFS.
- The objective measurements in CPET, including indicators of maximum effort, remove issues of self-report bias and the question of effort. In other words, the results cannot be faked.
- These results also support strong and consistent patient evidence regarding the harm that can occur using inappropriate exercise programmes.
> The most recent research about CPET testing and ME/CFS also included a comparison with multiple sclerosis and was featured in a blog we produced in August 2017. The pilot study from New Zealand confirmed the physiological abnormalities seen in previous studies.
> In support of the ME Association’s position on GET (i.e. that it should be withdrawn as a recommended treatment from the current NICE guideline), we are also including a copy of the 2018 letter from Professor Mark VanNess and the Workwell Foundation research group in America with every free copy of the clinical and research guide we send to professionals working in the NHS.
Mental Health Assessment
Some people with ME/CFS will experience true clinical depression (as opposed to just feeling ‘fed up’) during their illness.
The explanation probably involves a combination of endogenous factors (i.e. disturbances in neurotransmitters) and reactive factors (i.e. psychological distress associated with problems connected to work, education, doctors, benefits, family commitments, etc.).
- Key features of clinical depression, which also distinguish depression from ME/CFS, include anhedonia, feelings of guilt or worthlessness, being tearful and having suicidal thoughts or intentions.
A comprehensive mental health assessment, possibly involving questionnaires such as the Primary Care Evaluation of Mental Disorders (PRIME-MD), should be carried out in patients who have co-existent psychiatric/psychological symptoms.
It should, however, be noted that results from mental health questionnaires need to be viewed with caution (Farmer et al 1996) and that formal tests of neuropsychological function seldom reflect the degrees of impairment reported by these patients.
- A significant number of people with ME/CFS are being given inappropriate psychiatric diagnoses by their doctors.
Suicidal thoughts, intentions or actions must always be taken seriously and queried in patients with depression who feel unable to cope. They indicate a need to carefully assess potential explanations that may include lack of social support, financial and benefit difficulties, poor symptom control, as well as any psychiatric or emotional problems that may be present.
Roberts et al (2016) investigated mortality in individuals diagnosed with ME/CFS in secondary and tertiary care using data from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre Clinical Record Interactive Search register.
- They reported no increase in all-cause mortality in people with ME/CFS but did find a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with ME/CFS.
We are aware of people with ME/CFS who have committed suicide, and – from contact with the families involved – while clinical depression does play a role in some cases, the reasons are often more complex and involve a combination of problems relating to inadequate medical care and symptom relief, lack of social care, social isolation and financial problems, including problems with obtaining benefits.
A disability assessment scale can be useful for following progress and providing information for benefit, employment and insurance assessments.
ME Association Disability rating scale
ME/CFS can have a significant impact on daily living. The influential 2002 report to the Chief Medical Officer provided for four categories of illness severity: Mild, Moderate, Severe and Very Severe (Cox & Findley, 1998).
The ME Association disability rating scale is based on these categories but tries to account for the fluctuations that can occur within them.
It is probably most useful when reviewing impact over a longer period, say in the last three months, rather than on a day-to-day basis.
The scale has been found to be particularly useful for clinical assessments, measuring progress, and with benefit applications – to help explain to others the extent to which ME/CFS is affecting a person’s daily life.
100% DISABLED: Severe symptoms – often on a continual basis. Cognitive function (i.e. short-term memory, concentration, attention span) is likely to be very poor. Bedridden and incapable of living independently. Requires a great deal of supervision and practical support – including disability aids such as a hoist or a stair lift – with all aspects of personal care (i.e. feeding, dressing, washing) on a 24-hour basis.
90% DISABLED: Severe symptoms, often including marked cognitive dysfunction, for much or all of the time. Bedridden and housebound for much or all of the time. Has considerable difficulties with all aspects of personal care. Unable to plan or prepare meals. Requires practical support and supervision on a 24-hour basis.
80% DISABLED: Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation. Frequently unable to leave the house and may be confined to a wheelchair when up, or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision.
70% DISABLED: Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24-hour basis. Very limited mobility. May require wheelchair assistance.
The ME Association Disability Rating Scale is available as a download from our online shop. It has been found to be useful with clinical assessments, measuring progress and with benefit applications.
The ME Association
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