The terrible symptoms of “long Covid” described by Joanna Herman (I’m a consultant in infectious diseases. ‘Long Covid’ is anything but a mild illness, 27 December) will be horribly familiar to hundreds of thousands of sufferers of post-viral myalgic encephalomyelitis/chronic fatigue syndrome. But the response to the two illnesses could scarcely be more different.
Within a few months of the start of the pandemic, research funding into long Covid was made available, guidance on treating it has been issued already, and 40 clinics for it are to be set up in England alone. By contrast, for decades ME/CFS sufferers were ignored, dismissed as hysterical, and generally failed by large sections of the medical community and the NHS. Even now that the illness has been officially recognised, medical and social care support for sufferers varies from inadequate to non-existent, and there is scarcely any public research funding.
ME/CFS sufferers have much to offer long Covid sufferers in terms of strategies and support to cope with the illness. Given the similarities between the illnesses, the new clinics should open their doors to ME/CFS patients, so that both communities may gain the maximum benefit.
Prof Christopher Norton
• I am very sympathetic to Joanna Herman because many years ago I had a similar experience myself. A relatively “mild” viral illness was followed by nearly a year off sick, with persistent fatigue and other symptoms, and more than three years before anything resembling a full recovery and return to full-time work. At various points I had to use a stick to walk, if I could walk at all.
I had to sit down to do minor tasks like preparing food. I couldn’t read or even watch a film as it was all too exhausting. Any kind of exercise was out of the question, and the children just had to accept I wasn’t going to take them swimming on Sunday mornings any more. Heart palpitations, muscular aches and pains, pins and needles, joint pain – you name it, I had it.
This was in the 1990s. It wasn’t “long Covid”, it was so-called post-viral fatigue syndrome, rather airily dismissed by countless medical professionals until Covid-19 came along. Nobody knew what to do about it apart from advise rest. The lucky ones, like me, were those who had a sympathetic GP on hand to offer words of encouragement. I suspect the same is going to be true of long Covid, regardless of the setting up of specialist clinics.
• I fear Joanna Herman’s high hopes for the long Covid clinics will be sadly disappointed. Our family caught Covid in early March. Both my daughters went on to develop long Covid, one recovering after a few months and the other still seriously debilitated more than nine months later. As a genomic epidemiologist, she too, like Herman, should be working “in the thick of it” with her colleagues, but has had to sit frustrated on the sidelines.
She has an excellent, supportive GP who referred her to first one then a second long Covid clinic. But she was rejected by the local one because she had not had her diagnosis confirmed by a PCR swab or hospitalisation. In early March, PCR tests were not available. The second clinic in London rejected her as “out of area”.
As a result, as needed as the new clinics are, they appear inaccessible to those who have been suffering the nightmarish aftermath of Covid for the longest time.
Name and address supplied