From InterAction 105, published September 2020
What happens if you have M.E. and get Covid-19? Poet and artist Alec Finlay should know – he’s still recovering after contracting the virus in March.
People with M.E. weren’t surprised by Coronavirus. They had a good idea who it would affect worst. The stories I’ve heard from friends of people lacking the help and support they need are familiar.
My three decades of M.E. began with a typical case of glandular fever. I’ve now read two accounts by medical experts who experienced long-term Coronavirus, seeking to distinguish their lingering condition from any “kind of post-viral syndrome.” Does anyone doubt that these diseases belong within a larger family of post-viral collapse? Experts in M.E. consider Coronavirus as part of the same Venn diagram.
My M.E. has worsened three times: first by swine flu, when I was bedbound for four months; then by a flu jab, which had the same result; and now by Coronavirus. Day 100 was ticked off some weeks ago. I caught the virus in the mad week in March that preceded lockdown. And I have a friend who I unwittingly passed the virus on to, also in her fourth month. Try to avoid this virus if you can.
Before this I could walk half a mile on a good day, now I can manage 100m. Many people will recognise the oddness of our symptoms: I could walk further, but I relapse for days, with severe muscular pain, waking up panting, with a pulsing headache, and exhaustion. The virus does feel a bit kooky, but the post-viral experience closely resembles the onset of M.E. Many people talk about an early period of recovery, followed by cycles of relapse, and then a settled hiatus without any improvement. Rest and more rest is crucial.
Stuck in limbo
When a professor who has been ill for weeks writes that people “need help to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course…” many of us give a weary sigh. Yes, indeed they do. I’ve been struck forcefully by the erasure of high risk, including the disabled, many of whom have been sheltering at home for months, beyond the circle of care that “high risk” was supposed to offer. I spoke to my medical practice three times over the course of the virus. All they had to say was “good luck”.
People who aren’t going to die but aren’t recovering either emerged. Some were ill for weeks. Some have now been ill for months. Some will be stuck in a limbo of muscle ache, and fatigue for years. They have our sympathy: we are them and they are us. A friend who saw a GP found herself being gently directed towards an unspoken diagnosis of CFS. We know how limited the treatment is thanks to the wrong turning that was taken 20 years ago, when serious research was diverted by the CBT lobby. That cul-de-sac is going to be crowded. Just as many people are realising how punitive the benefits system is, so people with post-corona will discover that people with M.E. went before them and were largely abandoned.
Speak confidentially to researchers into M.E. and they expect thousands of new cases to emerge. Based on our experiences many of us believe we were triggered into M.E. by a virus. If medical science finds medication to help those with post-corona it seems likely it will also help with M.E. With grim optimism researchers hope that this new cohort will unlock funding for biomedical research. Can the prejudices of ‘healthism’ that we’ve had to put up with really be maintained when so many people are ill in the way we are?
A portrait of any illness has to be created, partly by science, partly through acts of witness and imagination. With vigilance no-one with post-coronavirus will have to put up with insults such as “Yuppie flu.” The story we tell will have to contain those who have no symptoms, those who feel as if they have a bad flu, those who die, and those who have M.E. or its cousin. No-one comes off a respirator and walks happily into the rest of their life. We will need to create a culture of recuperation and one way to do that is share our patient-led models of resilience. Everyone who experiences long-term impacts learns to adapt and, in their own way, be creative with their energy resources. Let’s hope that this time our knowledge is valued.
*This essay is adapted from a longer text published in Disability Arts Online