Video above: Jen reveals the struggle to get doctors to take their son’s condition seriously. Full episode on SBS On Demand.
Migraines so pervasive that it feels like your head is splitting apart from the inside. Fatigue so ubiquitous that it floods you as soon as you wake up in the morning. Brain fog so dense that you briefly forget where you are or what you are reading. I remember it like it was yesterday. And that’s because it was.
No, I don’t have COVID-19. I am also not a coronavirus long-distance driver. I have myalgic encephalomyelitis, often referred to as chronic fatigue syndrome (ME / CFS).
The invisible symptoms that fall under the ME / CFS and Long COVID umbrellas are very similar: crippling fatigue, joint and headaches, anxiety, memory loss, and more. During the pandemic, I watched with sadness and solidarity as I read articles about people who have not fully recovered from coronavirus. They had to come to terms with how their once robust bodies now function.
The invisible symptoms that fall under the ME / CFS and Long COVID umbrellas are very similar: crippling fatigue, joint and headaches, anxiety, memory loss, and more. During the pandemic, I watched with sadness and solidarity as I read articles about people who have not fully recovered from coronavirus. They had to come to terms with how their once sturdy bodies now work.
Just like me, they tried to agree that what was once the airiest task is now an Everest-sized challenge. Just like me, they joined Facebook groups for support. You really want to talk to others who are going through something similar and take a short break in the comfort of a shared experience. Just like me, with few others standing up for them, they have become self-made activists who, when the energy allows, break off one social media post at a time given the stigma they face.
At the abyss of change?
I spent the first 16 years of my life as a perfectionist and high-flyer, winning awards in sports, music and science. A harmless cold turned into glandular fever, a condition most people know. I would be back to normal in no time, the doctors told me. I believed you. But as my body started to deteriorate, hopes for a speedy recovery faded, even though each new test result insisted I was in good health.
In the decade I’ve lived with ME / CFS, I’ve faced more than part of my skepticism, aggression, and disparagement. I was grinned at doctors’ offices, asked to do “f *% k off” and “man up” when I asked for a seat on the train, and said my condition was all in my head. Most of the people I’ve met can’t even pronounce myalgic encephalomyelitis. Go on, try it out.
Now with long COVID, there is another condition that is mysterious and has almost identical symptoms to ME / CFS, and the vast majority of society agrees that it is real. Could the tide finally turn for people like me?
That it takes a pandemic to get additional recognition for ME / CFS is not ideal, but it is welcome nonetheless. Studies on long-term COVID are being started and articles written, many of which draw parallels with ME / CFS and refer to ME / CFS. The pandemic has also already produced some positive policy outcomes that people with ME / CFS have been demanding for years, such as improved access to telemedicine.
In the UK, earlier this month it was announced that people with long-term COVID would be offered professional help in clinics across England. The clinics will appear to offer a one-stop service to patients who will have access to ratings for various health problems, memory problems, and mental illnesses.
I wouldn’t be surprised if the coronavirus spawned a new mass of chronically ill people around the world, as some have already predicted.
I would love to see initiatives like this in Australia and give access to people with ME / CFS. There are very few specialist ME / CFS clinics in Australia and the existing ones are expensive, geographically diverse and have long waiting lists.
Studies are currently being carried out around the world on the long-term effects of the coronavirus and the results should be interesting. But as two academics from the USA recently wrotePerhaps we would have been in a better position to help people with long-running COVID “if medical and research institutions had not for years ignored or distrusted the voices of patients with life-changing post-viral syndrome”.
I have been very fortunate to have a supportive family who have done their best to help me and rebuild some aspects of a workable life. But many with ME / CFS remain bedridden and are nowhere near as lucky. I really want to see a breakthrough for them. More than two thirds of the people Survey by the ME / CFS advocacy group Emerge Australia lived below the poverty line last year. The same survey found that only 37 percent received the disability pension and only three percent were participants in the National Disability Insurance System.
I wouldn’t be surprised if the coronavirus spawned a new mass of chronically ill people around the world, as some have already predicted. Given the overlap, some long-distance COVID drivers may even receive formal diagnoses of ME / CFS. Would this new cohort lead to a spate of new studies and waves of public empathy – or, once the pandemic has subsided and we move on to the next crisis, will they face the same neglect that we have long faced? We will see.
I am more optimistic now than I have been in years that changes for people with ME / CFS could be around the corner. Still, I’m not holding my breath.
Evan Young is an SBS News reporter and writer who lives at ME / CFS.
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