Dr Rosamund Vallings, author of the internationally acclaimed book Chronic Fatigue Syndrome: Symptoms Diagnosis Management, explains what this often misunderstood illness is and what can be done to help people who are diagnosed with it.
This illness (otherwise known as Myalgic Encephalomyelitis) affects about 20,000 people in NZ. It affects all age groups, and varies in severity from some people being totally bedridden to those who are well enough to lead a reasonably normal, though restricted life. It almost always follows a viral illness, when the immune system is activated to fight the infection, and then does not settle down afterwards. This overactivated immune system leaves the person with many ongoing symptoms, often similar to the original illness. The duration of the illness varies enormously, with some recovering reasonably well in 2-3 years and others remaining ill long term. For the first few months it is usually called “Post-Viral Syndrome”.
The typical symptoms will be extreme fatigue, muscle pain, sluggish brain activity, unrefreshing sleep and symptom worsening with anything more than minimal exercise. Sore throat, enlarged glands, fevers, gastrointestinal symptoms and dizziness may also occur.
There is no specific diagnostic test for this illness, and the doctor will adhere to a specific set of detailed criteria to make a diagnosis. It is also important to rule out other causes of similar symptoms. The diagnostic procedure may take a long time. Diagnosis is particularly difficult in older people, as there are many causes of fatigue and as a person ages, they may have other complex health issues. One illness can always aggravate another.
Once a diagnosis is made an individualised management plan can be established. There is no specific treatment to “fix” this illness, and much of the treatment is aimed at alleviating symptoms and improving quality of life. This may involve medication, which has to be carefully prescribed in relation to other treatments. The illness is often “up and down” and tends to be easily aggravated by major stress and pushing exercise too hard. Serious relapses can occur, but any change of symptoms always needs to be carefully investigated to make sure another new illness has not developed alongside. This is particularly important in the older age group.
Support and understanding by family members, work colleagues and friends are always important.
The book I have written about this illness gives an overview of the history, causes, diagnosis and management. It is written in simple everyday terms, but is often read by doctors and other health professionals. There is now a wealth of research going on around the world about CFS/ME, and the final chapter covers this. Support persons have found the book invaluable.
Like every illness, understanding about what is going on in your body, keeping in touch with your medical team and following the most up to date research gives you the best chance of improving your quality of life. Do not be afraid to ask questions and do not neglect your everyday other medical care.
Following the Covid-19 illness, there is inevitably a number of people who develop what is now labelled “Long-Haul Covid”. This has the same symptoms as CFS/ME, with a very specific cause. It is treated in the same way. It is already leading to a major increase in research into these perplexing illnesses, and may provide many long-awaited answers.