National Comment Comment

'Long Covid' presents an opportunity to rise to the challenge of chronic fatigue

We can use this time to learn more about the illness as it grows in the public consciousness

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As we continue to wade through the coronavirus pandemic, one of the narratives that is increasingly emerging concerns the cases of ‘Long Covid’. This is the term that has been given to those who experience health implications from Covid-19 even after the initial two-week period. Discussion of the trend has gone from the scientific journals all the way to the despatch box in parliament. Frankly, it is worrying that even if you recover from the virus, you could be significantly debilitated much longer than expected. This is primarily due to the most common side effect, ME (myalgic encephalomyelitis), more commonly known as CFS (Chronic Fatigue Syndrome). With ‘Long Covid’ likely to be in the media and government eye for the coming months now is a good opportunity to raise everyone’s awareness of just what Chronic Fatigue is, so we can all understand what people who suffer from it go through on a daily basis, and be better prepared for its possible greater frequency in society.

The main symptom of Chronic Fatigue, as defined by the ME Association, is a “profound and disabling fatigue”, which “affects both physical and mental functioning”. “The fatigue and other symptoms are not caused by ongoing excessive exertion and are not relieved by rest.” The key thing to highlight here is that this “fatigue” is not just a few yawns. Six years of personally experiencing this disease have told me as much. It is, like the quote says, “profound” and perpetual, taking a sledgehammer to your normal daily life pre-illness. It demands constant sacrifices from the sufferer who has to choose between prioritising their social life, workload and exercise because balancing all three and having a ‘normal life’ is realistically unfeasible. Sadly, that scenario describes the lucky ones who get to choose what they sacrifice. Some people are so fatigued they are bed bound and the decision is made for them. At its best you clutch onto some semblance of your previous life, but at it’s worse it is a soul crushing dictatorship.

Yet, despite such clearly impactful effects, Chronic Fatigue is an illness that perplexes science. There is no consensus on what causes it (aside from Covid-19) and it is indiscriminate on who it affects. Gender, class and age are all superfluous in terms of your risk to Chronic Fatigue. Worse still, there is no apparent cure either, so the roadmap to recovery is murky to say the least. Doctors cannot offer concrete guidance and reassurance you hope for, making Chronic Fatigue particularly cruel to wrestle with upon diagnosis.

Most likely because of the confusion that surrounds Chronic Fatigue, it is predictable that awareness of its debilitating nature is usually limited to the affected person or their significant family. As a consequence, it is rare for others to be knowledgeable on the issue. Comments such as “just sleep more” or “you get tired, I get tired too”, can be just as common from friends or strangers as they are dispiriting. However, it is important not to get angry at this. After all, when there is such an overall lack of public awareness of the illness it would be unfairly harsh to be outraged by someone who might have never even heard of it. Especially when their confusion is often shared by myself, and I imagine other sufferers too, due to Chronic Fatigue’s inexplicability. I also want to know why I cannot just sleep more and then recover. I too want to know why me being tired is so drastically different to others being tired.

This leads to another issue with Chronic Fatigue, aside from its physical restrictions, which is the mental strain it can place you under. The scenario is similar to lockdown. If you are bedridden it is like an enforced isolation, and as most people are aware of by now due to two national lockdowns, mental health has been a struggle for many during this time. Also being so consistently fatigued likely makes you more susceptible. Therefore, it is sadly unsurprising that research shows there is a strong correlation between those who suffer mental health issues, such as depression and anxiety, and chronic fatigue. I know when my illness was at its worst, I genuinely thought I was going mad as my body was seemingly failing unexplainably. If Chronic Fatigue becomes more prevalent due to Covid-19, anticipation of the mental health issues that could arise should have the same priority as the physical effects.

I hope we see this moment, as far as we can, as an opportunity. With ‘Long Covid’ and subsequently Chronic Fatigue likely to be in the public consciousness for the coming months or even years, we have an opportunity to now inform ourselves on a debilitating illness that could become much more prevalent and has so far missed out on the awareness it deserves. If you are unaware of the illness this is the time to go read an article, go watch a video, or listen to a podcast – because greater understanding and awareness is not only the first step to empathising and helping those with Chronic Fatigue but also – with any luck – it’ll someday help to solve the mystery illness as well.

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