5 things people with chronic fatigue syndrome need doctors to understand

"People with ME/CFS look deceptively healthy when we're out."

"People with ME/CFS look deceptively healthy when we're out." Photo: Stocksy

No one likes having to visit the doctor, but for people with ME/CFS, the experience can be downright traumatic.

Today is ME/CFS Awareness Day, and boy do we need better awareness around this illness. If I had a dollar for every misconception voiced in my presence since being diagnosed in 2006, I might be a millennial with a housing deposit.

Also known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, ME/CFS is classified by the World Health Organisation as a disorder of the central nervous system. It affects up to 242,000 Australians, the majority of whom are women, and can cause profound disability. An estimated 25 per cent of sufferers are housebound and 6 per cent are unable to leave their beds. Sufferers experience fatigue, pain, cognitive dysfunction and sensory overload that can leave them incapacitated for months, even years, on end.

None of this is fun, but adding insult to injury is the lack of any formal training for Australian GPs, nurses and allied health professions on ME/CFS management. Consequently, inappropriate recommendations can be given, compounding what is already a wretched experience for most patients.

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So, this ME/CFS Awareness Day, I'd like to address the Australian medical establishment. This is what we, your patients, would like you to remember about ME/CFS:

1. It's not in our heads.

Given the gendered nature of ME/CFS, perhaps it should surprise no one that it was mischaracterised by psychiatrists as "hysteria" in the '70s, and that this mischaracterisation has stuck around like a bad smell. People with ME/CFS still encounter doctors who assume a psychological basis, despite solid evidence to the contrary.

If you had a broken leg, you wouldn't be treated for "broken leg beliefs", and you would lose faith in any doctor who tried. Yet ME/CFS patients encounter this regularly. Mental healthcare is useful for people coping with a loss of function of course, but implying that ME/CFS is a wrongheaded perception of illness is akin to the emotionally abusive practice of gaslighting.

2. Exercise can be harmful.

ME/CFS is characterised by "post-exertional malaise" - a completely naff description of the increased impairment that follows even minimal activity. For me it's nausea, sore throat, heavy limbs and a cotton wool brain. It can last days after overdoing things. Researchers have found gene expression, maximal oxygen uptake and cognitive function differs between ME/CFS patients and controls after exercise, so objective measurements of the phenomenon are floating around.

This makes the often-recommended treatment of GET (Graded Exercise Therapy) very controversial. The therapy was originally devised to help patients overcome an irrational fear of exercise (hysteria!), the plan being to slowly increase activity back to normal levels. However, surveys find that 74 per cent of patients who have tried GET actually experience a worsening of their condition, and though the largest study conducted on GET reportedly found it to be mildly helpful, reviews of that study have found quite the opposite.

3. We're more ill than we look.

"No wonder doctors think we're less ill than we are, they only see us when we're well enough to get to the clinic."

This comment recently appeared in an online support group I frequent, and it's on the money. People with ME/CFS look deceptively healthy when we're out. But we spend inordinate amounts of time recovering from our infrequent jaunts into public space. Someone who looks perfectly well at an appointment might still be physically limited to an hour or so of activity a day.

4. It's okay to admit that you don't know how to fix us.

There's no cure for ME/CFS. Most people improve a little with lifestyle adjustments, and approximately five per cent mysteriously recover, but the vast majority of us are stuck with this until the research improves (right now it's barely funded).

Despite this, many with ME/CFS find their doctors expect recovery and become frustrated when it doesn't happen. This is very hard on patients who, in addition to still feeling awful, end up feeling they've failed themselves. It amounts to victim blaming.

5. Your support is essential to our wellbeing.

There's an oddly common belief that a diagnosis of ME/CFS enables a "disabled lifestyle" (whatever that means), but frankly, having these symptoms with no explanation is freaking scary (I honestly believed I was dying). We need our doctors to be familiar with the diagnostic criteria and willing to make the call.

We're also much more likely to be supported by employers, friends and family (who we may be dependent on for care) if the condition is explained by a doctor. There are extraordinary levels antipathy directed at people with invisible illness - those who look able are judged for inactivity in a culture that values productivity over all - but doctors can facilitate management of expectations. This may include going to bat for us with social security. Too many with ME/CFS are financially supported by family because they can't work and DSP (Disability Support Pension) has been denied or revoked. Those without supportive family are at risk of homelessness if they can't make rent. A solid report from a doctor can make all the difference.

We need you. Be on our side.