The story of Cassandra (depicted here by Evelyn de Morgan) is quickly summarized: the prophetess of Troy foresaw her own death, and that of those around her, in the coming wars. That might have been useful, but for a catch: the gift of prophecy had been given to her by Apollo, but the god later cursed her when she refused to sleep with him – the curse being that no one believed what she told them, no matter how grave. The story of Chronic Fatigue Syndrome is not so easily told. If you’re one of the unfortunate people who has had to learn something about this illness, you will know that even its very name is a battleground; already there will be people reading this angry with me for not calling it ME, first, and others who think I should term it SEID (Systemic Exertion Intolerance Disease). What is indisputable is that it is an illness with a long and controversial story behind it, the source of a fierce argument between those who see it as a physiological or neurological condition, and those who see it as the quintessential psychosomatic disorder (they’re wrong, by the way…). Whatever you may know or not know about it, can you think of patients of a single other health problem, even mental health problem, that (some) doctors actually laugh about? But this is the picture for those conditions that medicine has taken to calling MUS – Medically Unexplained Symptoms – there is even a thread on reddit where doctors laugh and post malicious comments about such patients.
What does any of this have to do with the Coronovirus? Two things; two messages, or perhaps it would be better to say, one message and one warning. First, the message. There has been an understandable if not particularly edifying outburst on social media from people who are chronically ill, heavily rolling their eyes at ‘ableds’ complaining about having to be confined to their homes for a few weeks. For people who have been literally housebound for years; this understandable, if bitter cry of ‘welcome to my world’ may even seem a little vindictive, but it is borne of the years of neglect and frequent psychological abuse aimed at people with ME/CFS. If you don’t believe this is a thing, trust me, it’s a thing. ME/CFS is just one of those ‘invisible illnesses’ to which very little attention is paid; orthodox medicine has generally ended its interest in such patients; once you have the (technically speaking, lack of) diagnosis of being told you have CFS, you will be lucky to receive any further support from your doctor. Instead, you are left to fend for yourself, no longer able to work, stuck at home almost all the time, perhaps all the time, perhaps even in bed permanently, if your case is severe. The vast majority of people who get ME/CFS do not recover; imagine being on lockdown for the rest of your life.
I, like many people, don’t have to imagine it, and what this means is that people like me have had a lot of practice at being housebound; and we could try to help people for whom this is shocking and new. We could talk about the ways you keep your sanity; the ways to order a day, the ways to try to put meaning back into your life when you have very possibly been deprived of the thing that gave it meaning for you. We could share these things; and clichés though many of them are, from enjoying what you can still do rather than mourning what you cannot, to learning to appreciate the people you care about anew, to being creative at ways to amuse yourself, and bond with others, often via the net, which is a vital lifeline for many of those who are house- and bedbound. Chronic Illness is the Cassandra of the Coronoacrisis. But does anyone want to listen?
Then, there is the warning. Though there have been some recent encouraging breakthroughs into ME/CFS going on around the world, most notably in the US, we are still some way from fulling understanding the disease mechanisms fully, let alone being able to treat the condition. One thing that most people agree on however, is that very often what seemed to precipitate the illness was an infection of some kind. This was true in my case; I fell ill with classic signs of infection while in Asia six years ago, and though what it was it was never identified, it left me with the permanent fatigue and other symptoms that frequently compound ME/CFS. Though this is not the route by which all people with ME/CFS become ill, it is a very common story; that infection triggers the condition, which remains permanent even when the original infection has passed. This is why it is vital to learn from the CFS story now, before it is too late. Various viral infections have been studied, and the percentage of cases that lead to chronic illness varies, but look at a disease related to COVID-19; SARS. One study into SARS reported that 87% of victims never fully recovered, including fully 17% who were so ill as to never be able to work again. Globally, it is estimated that SARS infected 8,000 people. Covid19 has already passed the 750,000 mark, of official cases. Of course, no one knows what the percentages of victims who contract a long-term health condition will be, but using the worst case scenario that has been touted of 80% of the population contracting Covid19, the figures are alarming. At even at the 5% mark of long term ill health, this would add over 2.6 million cases of people with ME/CFS to the UK’s current community of an estimated 250,000; the same number would be added to the USA’s estimated community of between 1 and 2 million sufferers of the disease, with just a 1% conversion rate from acute infection to chronic disease; a disease that already costs the USA between $17 bn and $24 bn annually.
So here’s some advice from someone who didn’t want to become ill, who didn’t want to have to learn about a disease that society is generally not greatly interested in. There are numerous studies now that show that the severity of ME/CFS is significantly affected by the way it is treated in its early stages; specifically, trying to push on, to work through it, is the worst thing you can do, and can often turn mild cases into moderate ones; moderate ones into severe ones. So if you fall ill with Coronavirus; give yourself the maximum possible time that you can to recover from it. The attitude we tend to worship in the modern world; keep on pushing, will not work for you this time; in fact, it may change your life, not just for a few weeks, or months, or even years. But for good.
O Cassandra, you alone saw the horrors of war, and wept when we did not believe you.
All figures as of date of writing, 31/3/20