In Australia, advocates are calling for urgent action to ensure that doctors have up-to-date information on Chronic Fatigue Syndrome.
OPINION: May 12 is the anniversary of the birth of Florence Nightingale, the English statistician and social reformer credited with founding modern nursing.
While you might remember Nightingale as the “Lady with the Lamp”, you may not know that when she founded her nurse training school in 1860, she was virtually bedridden with an illness resembling ME/CFS. This is why May 12 is now International Awareness Day for ME/CFS.
ME/CFS is a serious, life-long illness affecting multiple body systems and which often, but not always, happens after an infection. The ME stands for Myalgic Encephalomyelitis which was how the Americans first referred to the disease. The British called it Chronic Fatigue Syndrome, hence the CFS.
Here in New Zealand, it is also sometimes known as Tapanui flu after an outbreak in the South Island town of Tapanui in 1984. Tapanui was just one of the hotspots, but the name stuck.
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People with ME/CFS experience a wide range of symptoms including severe fatigue, deep pain in their muscles and joints, migraine- or pressure-like headaches, dizziness, sleep problems, and trouble thinking and concentrating.
They can also get what’s known as post-exertional malaise where their symptoms worsen in the 12 to 48 hours after they’ve exerted themselves mentally or physically and stay that way for days or even weeks. “Exerting themselves” can be brushing their teeth.
ME/CFS is characterized by a fluctuating spectrum of symptom severity. At the mild end, people may be able to work, just, but at the expense of other parts of their lives. At the very severe end, people who are bed-bound and tube-fed.
There is currently no cure for ME/CFS. The stark reality is that most people with ME/CFS are unable to stay employed. According to a recent report, more than two-thirds of ME/CFS patients in Australia are living below the poverty line.
Diagnosis of ME/CFS is challenging and generally requires people to have experienced symptoms for six months. With the pandemic in its third year, many people with long-Covid are now meeting the diagnostic criteria for ME/CFS.
Globally there have been half a billion confirmed cases of Covid-19. It’s currently estimated that between 10%-30% of people with Covid-19 go on to develop long Covid.
Here in New Zealand, we’re approaching 1 million confirmed Covid-19 cases. Being vaccinated reduces the risk of long Covid, but not to zero.
That means there are likely to be thousands of people here who are now on the path to developing ME/CFS. The more we allow the virus to spread, the more people will end up in this position.
People with ME/CFS have been fighting for decades to have their symptoms and experiences acknowledged and to access appropriate care.
All too often, medical professionals have decided people’s symptoms are psychosomatic or caused by a lack of physical activity. Many people have been prescribed treatments that have caused them real harm, like graded exercise therapy.
In Australia, advocates are calling for urgent action to ensure that doctors, especially GPs, have the most up-to-date information on ME/CFS, so they can support the coming tsunami of cases.
We need to do the same.