People suffering from long-Covid are experiencing issues which have plagued those diagnosed with other chronic, invisible illnesses for years.
Una Hearne, who has lived with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) for the majority of her adult life, is aware of large numbers of long-Covid sufferers connecting with ME/CFS support and activist groups after discovering their physicians have little or nothing to offer them.
“Many long-Covid patients are being told the same things we were: that all you need to do is exercise and get some therapy to change your thinking, that what you are experiencing is not a physical but a psychological issue,” says Una who is from Rosslare Harbour.
“Many ME/CFS patients have been seriously harmed by these interventions. Plenty of us have tried on our own, without even being coerced by doctors to exercise our way out of this believing, as most do, that exercise is the answer to everything. In ME/CFS and long-Covid this can make you significantly worse as those of us who have tried it in our innocence can testify.”
With her own life severely curtailed by ME/CFS Una has poured whatever energy she has into educating people and raising awareness of ME/CFS, a condition which is often misunderstood by those in the medical community. And she fears that those coping with long-Covid will soon join the millions of people worldwide struggling with ME/CFS.
“ME/CFS and long-Covid are post-viral syndromes with a wide range of symptoms in common. People who have long-Covid for more than six months are increasingly being diagnosed with ME/CFS in the US.” she says. “The cardinal symptom for both is post-exertional malaise (PEM). After exertion of any kind, physical, mental or emotional, the person will experience an abnormal level of exhaustion and abnormal recovery period.
“There are estimates that there are 20-30 million people worldwide with ME/CFS and now we are being joined by millions of people with long-Covid. We could end up with double the number of people. If there had been acknowledgement of ME/CFS from the start, proper resources could have been put into research. We might now know what causes it and have effective treatments or even a cure. Millions of long-Covid sufferers would not now be facing our living nightmare.”
For Una, that living nightmare began when she contracted glandular fever at the age of 16. Although the illness eventually abated, Una continued to experience extreme tiredness and fatigue all the way through her teens and into her twenties, rendering her unable to work.
Having recovered enough to work through her thirties and forties, Una relapsed badly in 2015 and is again unable to work. Numerous hospital appointments and visits to her GP failed to unearth any tangible results and she became accustomed to “derision and dismissal” whenever she tried to explain her symptoms.
“There are still many doctors who believe that ME/CFS is a psychological issue despite the wealth of medical evidence and literature which contradicts this view,” she says. “Consequently, people are being sent to inappropriate places for help. We have been hearing from and helping long-Covid patients, many of whom say that they experienced the same dismissal and gas-lighting from the medical profession and the only people who have been open to them and able to help them is the ME/CFS community.”
“We want long-Covid sufferers to know this is a real physical illness and it is not your imagination. You need to get yourself informed about PEM and the only consistent measures that work for everyone - rest and pace. Join support groups for long-Covid or M.E. - you will be welcome in both.”
Accepting that no-one could have foreseen the catastrophic impact of the pandemic, Una says ME/CFS support and activists groups globally warned health services about the legacy of Covid-19 and how damaging it could be in the long-term.
“Many in the ME/CFS community tried to warn the health service of the coming tsunami of post-viral illness that could result from Covid-19. They were not listened to, arguably because the health services had enough on their hands dealing with the pandemic. But now is the time to pay attention to long-Covid and ME/CFS and put the money needed into research, medical education and proper care for our community. It is not in a society’s interest to ignore us, we are a huge population of people who want to be back at work and participating in our family and social lives. The cost to the economy is obvious.”