What is M.E?
Diagnosis
A diagnosis of M.E can be a long process, with one poll finding that over 60% had to wait a year or more (Page 41) and over 10% waiting over 10 years.
It is vitally important that your doctor provides you with an early and accurate diagnosis, as there is reason to believe that an early diagnosis can have some benefit allowing for appropriate treatment and management and may minimise long-term morbidity and severity.
How Will My Doctor Diagnose Me?
There is currently no single test to diagnose M.E. therefore doctors relay on making a diagnosis on the basis of the most common symptoms including but not limited to
- fatigue or unrefreshing sleep
- post-exertional malaise
- cognitive dysfunction
- orthostatic intolerance
- on-going flu like symptoms
- joint, muscle & nerve pain
What Else Will Happen?
Your doctor is also likely to examine your clinical history and take into consideration
- past medical and psychiatric illnesses
- previous operations and blood transfusions
- the possibility of exposure to chemicals, solvents & pesticides
- drug use
- social and family history
Additionally, your doctor is likely to carry out many tests to rule out other conditions that can be confused with M.E such as:
CARDIOVASCULAR
- Pulmonary arterial hypertension
- Valve disease and claudication
ENDOCRINE/METABOLIC
- Addison’s disease
- Fluid retention syndrome
- Haemochromatosis
- Hyperparathyroidism – where a raised level of calcium may be quite small
- Hypothyroidism and thyrotoxicosis
- Hashimoto’s encephalopathy
- Hyper and hypocalcaemia
- Hyponatraemia
- Male hypogonadism (over 50’s)
- Pituitary tumour
- Polycystic ovarian syndrome
- Vitamin D deficiency
GASTROINTESTINAL
- Coeliac disease
- Crohn’s disease
- Food allergy
- Irritable bowel syndrome
GYNAECOLOGICAL
- Early menopause
- Premature ovarian insufficiency
HAEMOTOLOGICAL
- Anaemia, including pernicious anaemia
INFECTIONS
- Brucellosis
- Giardia
- Hepatitis B or C
- HIV
- Leptospirosis hardjo
- Lyme disease
- Parvovirus
- Post-polio syndrome
- Q fever
- Toxoplasmosis
MALIGNANCY
- Brain tumour
- Hodgkin’s lymphoma
- Ovarian cancer
NERVE AND MUSCLE
- Chiari 1 malformation
- Guillain-Barré Syndrome
- Macrophagic myofascitis
- Multiple sclerosis
- Myasthenia gravid
- Parkinson’s disease
- Rare myopathies
PRIMARY SLEEP DISORDERS
- Idiopathic hypersomnia
- Narcolepsy
- Sleep apnoea syndrome
PSYCHIATRIC
- Anxiety +/- hyperventilation
- Depression
- Somatisation disorder
- Stress
RESPIRATORY
- Scarcoidosis
- Tuberculosis
RHEUMATOLOGICAL
- Behcet’s syndrome
- Fibromyalgia
- Polymalgia rheumatica
- Sjorgren’s Syndrome
- Systemic Lupus Erythematosus
MISCAELLANOUS
- Alcohol or drug misuse
- Lead poisoning
- Non-alcoholic fatty liver disease
- Organophosphate pesticides exposure
- Primary Biliary syndrome
- Sick building syndrome
- Effects of various prescribed drug
Note: This list is an extract from “ME/CFS/PVFS An Exploration of the Key Clinical Issues” by Dr C Shepherd & Dr A Chaudhuri. We would highly recommend reading the entire textbook.
Contact us or The M.E Association for your own copy.
Severity
M.E is a complex and disabling illness. Each patient with M.E should be treated with compassion and respect, regardless of the severity of their symptoms. Generally, patients will fall into one of the following categories:
Mild
“Mobile and can care for themselves and can do light domestic tasks with difficulty. The majority will still be working. However, in order to remain in work, they will have stopped all leisure and social pursuits, often taking days off. Most will use the weekend to rest in order to cope with the week.”
Moderate
“Moderate – Have reduced mobility and are restricted in all activities of daily living, often having peaks and troughs of ability, dependent on the degree of symptoms. They have usually stopped work and require rest periods, often sleeping in the afternoon for one or two hours. Sleep quality at night is generally poor and disturbed.”
Severe
“Will be able to carry out minimal daily tasks only, face washing, cleaning teeth, have severe cognitive difficulties and be wheelchair dependent for mobility. These people are often unable to leave the house except on rare occasions with severe prolonged after-effect from effort.”
VERY SEVERE
“Moderate – Have reduced mobility and are restricted in all activities of daily living, often having peaks and troughs of ability, dependent on the degree of symptoms. They have usually stopped work and require rest periods, often sleeping in the afternoon for one or two hours. Sleep quality at night is generally poor and disturbed.”
The purpose of the 4 categories above is to show that M.E is widely variable condition.
Note: these categories are taken from the M.E working group report (2002)
Quality of Life
There is a high level of disability associated with M.E due to the range and severity of symptoms associated with the illness.
One study has found that M.E “is as disabling and has greater impact on the functional status and well-being than other chronic diseases such as cancer. The emotional burden of M.E/C.F.S is felt by lay carers as well as by people with M.E/C.F.S” (Nacul, 2011)
M.E Support Northern Ireland have developed a range of pages with information to help all those effected with M.E find the best ways to manage the illness.
See our “How we can Help” section for more information.
Prognosis
The Chief medical officers report by the M.E Working Group states:
“Prognosis is extremely variable. Although many patients have a fluctuating course with some setbacks, most will improve to some degree. However, health and functioning rarely return completely to the individual’s previous healthy levels; most of those who feel recovered stabilise at a lower level of functioning than that before their illness”.
“Irrespective of the statistics, each individual requires the necessary assistance to maximise their chances of an early recovery and minimise the impact of the illness”.
Prognosis in Children and Young Adults
In the cases of young people there does tend to be a much better outlook than there is for adults. The reason for this is unknown and should be further explored.
Read on page on “Symptom Management” for more information