Chronic fatigue syndrome is finally looking close to having a test and treatmentby Ruth Nichol
The good news for chronic fatigue sufferers is that a number of promising drug trials are under way.
“I’m full of hope,” says Vallings, who has worked with more than 3000 people with CFS/ME. “When you compare what we’re hearing about now with what was happening five years ago, we’ve made tremendous strides.”
Vallings is an expert on the illness, which is thought to affect up to 20,000 New Zealanders – some so severely they are completely bedridden and need 24-hour care. She has attended dozens of international conferences on CFS/ME and recently published her third book on the subject, The Pocket Guide to Chronic Fatigue Syndrome/ME, to help GPs and patients diagnose and manage the illness.
Her interest in CFS/ME began when she was a medical student in Britain. She helped care for patients suffering from an illness known as Royal Free disease. They were mostly medical staff experiencing symptoms such as profound tiredness, cognitive difficulties and muscle pain following a flu epidemic at London’s Royal Free Hospital.
Psychiatrists attributed their symptoms to mass hysteria, but eventually doctors realised that Royal Free disease was the same as a number of other illnesses, all with different names. They included Nightingale disease (Florence Nightingale is thought to have had CFS/ME), yuppie flu and, in New Zealand, Tapanui flu – named after the Otago town where people developed symptoms of the illness in the early 1980s.
“It’s been called just about everything – I think there have been about 20 different names,” says Vallings, who uses the CFS/ME hybrid to recognise the fact that the illness is known as CFS in some countries and ME in others.
Although CFS/ME was seen as a psychological illness for many years, doctors now realise it’s an immune-system condition. Vallings says it’s thought that people start experiencing symptoms because their immune system fails to switch off following an infection or another health problem, such as an accident or operation. Instead, it acts as if the infection is still present.
“The disarray of the immune system seems to be responsible for most of the changes in the body’s metabolism and chemistry. As the years have gone by, particularly the past decade, the research has become very strong that it’s a physical neurological illness.”
Vallings says research being done around the world – including by University of Otago biochemist Warren Tate – should eventually identify the biomarker for CFS/ME, which will make it possible to develop a laboratory test to diagnose it.
In the meantime, diagnosing the illness is largely a process of elimination. That can be time-consuming and expensive, involving blood tests and referrals to medical specialists such as rheumatologists and neurologists to rule out other possible causes.
CFS/ME can sometimes be confused with other conditions, but everyone diagnosed with the illness shares a core symptom – post-exertional malaise (PEM), which occurs after relatively low-key physical or mental exercise. People with PEM feel exhausted, and they have other symptoms such as muscle pain, headache, dizziness, sore throat and “brain fog”.
There is no cure for CFS/ME, but it is possible to manage the illness by not overdoing things, having good support, avoiding stress and getting enough sleep. Younger people are more likely to recover than older people. The oestrogen boost that comes with pregnancy helps many women, as does taking the pill or – for older women – hormone replacement therapy.
“What I like to say to people is that recovery is possible,” says Vallings, “although you never know whether someone has totally recovered – relapses can occur down the track.”
The good news is that a number of promising drug trials are under way. Like others working in the field, Vallings is particularly interested in testing in Norway of the cancer drug rituximab.
“The results are going to be unwrapped in October, and we’re holding our breath that they will show the drug is beneficial.”
THE POCKET GUIDE TO CHRONIC FATIGUE SYNDROME/ME, by Rosamund Vallings (Calico Publishing, $35)
This article was first published in the September 2, 2017 issue of the New Zealand Listener.
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