Video above: Jen reveals the struggle to get doctors to take her son's condition seriously. Full ep. on SBS On Demand.
Migraines so penetrative it feels like your head is splitting open from the inside. Fatigue so ubiquitous it washes over you the second you wake up in the morning. Brain fog so thick you briefly forget where you are or what you’re reading. I remember it like it was yesterday. And that’s because it was.
No, I don’t have COVID-19. I’m not , either. I have myalgic encephalomyelitis, often referred to as chronic fatigue syndrome (ME/CFS).
The invisible symptoms that fall under the umbrellas of ME/CFS and long COVID are starkly similar: crippling fatigue, joint and head pain, anxiety, memory loss and more. I’ve been watching with sadness and solidarity during the pandemic as I read articles about people yet to make a full recovery from coronavirus. They have had to come to terms with how their once robust bodies now operate.
Just as I did, they’ve struggled to reconcile how what used to be the breeziest of tasks now poses an Everest-sized challenge. Just as I did, they’ve, desperate to talk with others going through something similar and find some brief respite in the comfort of a shared experience. Just as I did, with few others to stand up for them, , chipping away as energy permits at the stigma they’re facing, one social media post at a time.
Evan has been living with ME/CFS for a decade. Source: Supplied
On the precipice of change?
I spent the first 16 years of my life as a perfectionist and overachiever, winning awards in sport, music and academia. An innocuous cold turned into glandular fever, a condition familiar to most. I’d be back to normal in no time, doctors told me. I believed them. But as my body began deteriorating, despite each new test result insisting I was in good health, hopes of a quick recovery waned.
In the decade I’ve lived with ME/CFS I’ve faced more than my fair share of scepticism, aggression and belittlement. I’ve been smirked at in doctors offices, urged to ‘f*%k off’ and ‘man up’ when asking for a seat on the train, and told my condition is all in my head. Most people I’ve come across can’t even pronounce myalgic encephalomyelitis. Go on, give it a go.
Now with long COVID, there’s another condition shrouded in mystery with almost identical symptoms to ME/CFS, and the vast majority of society agrees it is real. Could the tide finally be about to turn for people like me?
That it's taken a pandemic to get any sort of additional recognition for ME/CFS is not ideal, but it is welcome nevertheless. Studies on long COVID are being launched and articles are being written, many of which draw parallels to, and reference, ME/CFS. The pandemic has also already yielded some positive policy outcomes that have been called for by people with ME/CFS for years, such as increased access to telehealth.
Over in Britain, it was announced earlier this month people with long COVID would be offered The clinics will apparently provide a one-stop service for patients, who will have access to assessments for various health issues, memory problems and mental health conditions.
I would not be surprised if coronavirus created a new mass of chronically ill people all over the world, as some have already predicted.
I would love to see initiatives like this in Australia, and have people with ME/CFS given access. There are very few ME/CFS specialist clinics in Australia, and those that do exist are expensive, geographically disparate and have lengthy waitlists.
Studies on the long-term impacts of coronavirus are currently being run across the world and the results should be interesting. But, as two academics from the US , perhaps we might have been in a better position to help those with long COVID “had the medical and research establishments not spent years ignoring or distrusting the voices of patients suffering from a life-changing post-viral syndrome”.
I’ve been very lucky to have a supportive family who’ve done their best to help me and to have rebuilt some aspects of an able-bodied life. But many with ME/CFS remain bedbound and have not been nearly as lucky. It’s for them I desperately want to see a breakthrough. More than two-thirds of people lived below the poverty line last year. The same survey showed only 37 per cent received the Disability Support Pension and just three per cent were participants of the National Disability Insurance Scheme.
I would not be surprised if coronavirus created a new mass of chronically ill people all over the world, as some have already predicted. Given the overlap, some COVID long haulers may even end up with formal diagnoses of ME/CFS. Would this new cohort result in a surge of new studies and waves of empathy coming from the public - or once the pandemic subsides and we move onto the next crisis, will they start to face the same neglect we have long faced? Time will tell.
I’m now more optimistic than I’ve been in years that changes for people with ME/CFS could be around the corner. But still, I’m not holding my breath.
Evan Young is an SBS News reporter and writer living with ME/CFS.