Pippa Stacey 26th May 2020
Now we’re the midst of Covid-19, our thoughts are tentatively beginning to turn to the process of recovery. For those who have become non-fatally ill with the virus, it’s perhaps less well known that their actions during this recovery period are just as important as those during the acute period of infection. In order to inform and prepare those who may not be aware of the dangers ahead, we need to talk about post-viral fatigue.
When it comes to the thousands and thousands of people recovering from the virus, in various levels of severity, it’s clear that the world is very much in unchartered territory. However, I believe there’s much we can learn from one particular patient group here: those who know all too well the struggle of managing unrelenting fatigue.
If you’re not looking after yourself correctly during and immediately after a viral infection, the results could be devastating
Myalgic Encephalomyelitis, usually called ME or CFS, is a neurological condition that causes a variety of debilitating symptoms: post-exertional malaise, chronic pain, cognitive issues, and a bone-crushing sensation of fatigue that no matter how much you rest, never goes away. Although notoriously under-researched, we now know both anecdotally and scientifically that ME/CFS often develops as a result of viral infections; particularly where rest and recovery from such illnesses has been stunted or interrupted. Over the years, one thing has become clear: if you’re not looking after yourself correctly during and immediately after a viral infection, the results could be devastating.
Post-viral fatigue is the term often used to describe the extended period of feeling unwell and fatigued after a viral infection, a stage that (in the UK) mostly comes before a longer-term diagnosis such as ME/CFS. Post-viral fatigue often follows physical conditions such as glandular fever, pneumonia and influenza, and in select cases, can also come about from severe and complex psychological harm, such as abuse or trauma. Therefore, it isn’t surprising that Covid-19, a pandemic bringing equal levels of physiological and emotional threat, has been tentatively linked by New Scientist to future increased levels of longer-term fatigue conditions (such as post-viral fatigue and ME/CFS).
As a highly stigmatised, under-researched condition that disrupts every single element of your waking life, let me tell you first-hand: you don’t want this illness. I wouldn’t wish ME/CFS upon anybody.
However, let me emphasise that one of the most effective ways of dealing with post-viral fatigue and sidestepping the potential negative consequences doesn’t require you to proactively ‘fight’ or ‘battle’ your symptoms of illness, the way the media consistently tells us to. Instead, quite the opposite.
During times of acute illness and illness recovery, it’s absolutely crucial to be listening to your body and what it’s telling you. The process will be different for each individual, but there are several positive health behaviours that should be considered. Nourish your body with healthy food and plenty of water, keep your mental health in check and avoid extreme mental stimulation wherever possible, and most importantly, rest. Prioritise taking down-time, both physically and cognitively, and avoid being tempted to “power through” any negative symptoms you may be experiencing. In a nutshell, give your body the environment it needs to deal with the stress it’s under in the safest and most effective way. Gentle movement to aid circulation may be beneficial in some cases, but overall activity levels should be low, and as evenly dispersed as possible.
So, has the government listened to the subject experts and people with lived experience in tackling this very issue? I’ll give you three guesses.
Instead, chief medical advisor Chris Whitty has said: “There is no situation, there is no age and no condition where exercise is not a good thing.” Although this statement seems to have been made in the context of helping people stay fit and healthy in anticipation of becoming ill, rather than directly aimed at those currently ill or in recovery, already the implications of this statement are worrying.
Sport and physical activity organisations have jumped straight on the bandwagon, and something of a snowball effect seems to be occurring on social media. Individuals and organisations, many with vested interests, are using their platforms to latch on to this viewpoint and spread factually incorrect and harmful narratives about exercise and post-viral fatigue.
Again, patients with ME/CFS are no stranger to skewed advice and assumptions being circulated around the internet and causing harm. A decade ago, research was published that suggested exercise was a cure for ME/CFS — by the time this study was debunked by outraged researchers and patients who got access to the original data through a legal battle, it was too late. The media jumped on the “people with ME/CFS are just lazy and exercise-phobic” narrative, and they’ve been harping on about it ever since.
To the best of my knowledge, no other ME/CFS research findings have received the same journalistic attention — even those which offer tentative hope into the biomedical underpinnings of and potential future treatment options for the condition. Once a narrative has become publicised in this way, it can be very difficult to sway lay people’s opinions on the topic. Individuals with the condition have been bearing the emotional burden of this ever since.
It’s absolutely crucial that those who may be vulnerable to post-viral fatigue are exposed to factually sound advice and recommendations
Similarly, Covid-19 has been one of the most widely reported events of our time and it’s absolutely crucial that those who may be vulnerable to post-viral fatigue are exposed to factually sound advice and recommendations. Really, this advice that should be coming from those with first-hand experience in the area. I could go off on a whole other tangent about how much better equipped we could have been for this whole situation had we invested more time and empathy into the lives of the 250,000 plus people living with post-viral fatigue and ME/CFS in the UK but we’ll save that one for another time.
So, what can we realistically do? I hope to see an increase in information-sharing from ME/CFS charities and related professionals, which could then be implemented at higher governmental levels and incorporated into future research studies and targeted guidance. Additionally, I hope that more attention is given to ensuring those with post-viral fatigue, as well as all the chronically ill people who seem to have been forgotten, have access to support and specialist services throughout the pandemic, so that they’re not disproportionately disadvantaged or at risk of being neglected.
In the meantime, I hope that personal stories and community support will help those coming to the end of their acute infection with this devastating illness to make the best possible choices and achieve a sound recovery.
As someone who was harmed by being prescribed exercise inappropriately, here’s my take-home point. If you’re recovering from Covid-19, or experiencing post-viral fatigue, listen to your body. Ignore any internal or external pressure that tells you to “push” or “fight” more than you feel able to and prioritise taking things slow and looking after yourself. The country is on lockdown, you’re not missing out on anything, so there’s no better time to put your health first. There’s no need to jump straight back into work or immediately pick-up all your commitments at full speed, if you can do anything to avoid it. Nothing can justify compromising your long-term health. Trust me.
Use this period wisely, and you’ll have the rest of your days ahead of you to enjoy at your fullest potential. Be flippant or negligent, or blindly follow this misjudged guidance in the media, on the other hand, and you may regret it for the rest of your life.
Pippa Stacey 26th May 2020