A recent article in the The Lancet Health Regional Europe suggests that the emergence of long COVID presents an opportunity to focus, or perhaps re-focus, on post-acute infection syndromes – otherwise known as post-viral fatigue syndrome (PVFS).
The journal warns that since COVID-19 rates are set to increase this winter, the UK Government needs to implement a public health strategy to provide care and support for people living with long COVID, and doctors need to put renewed focus on PVFS.
ME/CFS patients and researchers already working in the field might be perplexed by the call now to focus attention on post-acute infection illness, given that ME/CFS was once defined as a post-viral fatigue syndrome (before the ‘chronic fatigue syndrome’ label was adopted by the US CDC in the 1990s) and that ME/CFS patients and organisations have been calling for more research into post-viral illnesses for decades.
The article begins by recognising that post-acute infection syndromes can occur after acute viral, bacterial or parasitic infections, and that long COVID was largely ignored by the medical community in the early days of the pandemic, until persistent patient advocacy challenged doctors to acknowledge that long COVID is a possible outcome of COVID-19 infection.
Next, it goes on to state that, while 145 million people worldwide have long COVID, there is still no clear consensus on how to define the condition. The slowness of doctors to arrive at a definition would perhaps cause some annoyance for sufferers. Given that many of the symptoms of ME/CFS overlap with the symptoms of long COVID (including fatigue, pain, sleep disturbance and malaise after exertion) while there are also some differences (such as shortness of breath being more prominent in long COVID), it is surprising that doctors find it so difficult to define long COVID.
It is estimated that there are more than 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men. NICE recommends a diagnosis of ME/CFS in the presence of symptoms that are not associated with other defined illnesses, and that persist for longer than 3 months.
The Lancet article continues by recognising that, “Post-acute infection syndromes have always been neglected, hindering the development of diagnostic or treatment tools.”
The article provides no reasons for why that neglect occurred. Doctors have been writing about post-viral fatigue syndromes since the dawn of medicine, and interest in this field reached a nexus point after Dr Melvin Ramsay wrote about myalgic encephalomyelitis cases after a viral outbreak among healthcare workers at the Royal Free Hospital in the 1950s.
Ramsay described patients who presented with an unidentifiable viral agent that resulted in myalgia (muscle aches and pains), encephalopathy (brain infection) and myelitis (spinal cord inflammation) – hence ‘myalgic encephalomyelitis’. Interestingly, these are exactly some of the complaints and issues we see in long COVID patients.
By the 1970s, UK psychiatrists McEvedy and Beard argued that the Royal Free disease and similar cluster outbreaks of post-viral illnesses were simply cases of mass hysteria.
They reviewed the 15 outbreaks of benign Myalgic Encephalomyelitis and concluded that these outbreaks, “…were psychosocial phenomena caused by one of two mechanisms, either mass hysteria on the part of the patients or altered medical perception of the community”.
McEvedy and Beard argued that the higher prevalence of females among the patient group meant that hysteria was more likely, and they suggested a renaming to ‘myalgia nervosa’. Again, long COVID rates appear to be higher among women according to recent studies.
By 1988, UK psychiatrists David, Wessely and Pelosi were calling for a new model of post-viral fatigue syndrome that moved away from a pathogenic (infection) model to a biopsychosocial model. This latter model challenged the role of organic disease in post-viral syndromes, and upgraded the role of psychosocial factors, despite the fact that doctors in the 1980s were brainstorming the critical biological dysfunctions in post-viral syndromes and had built evidence of neuro-muscular-immune abnormalities in PVFS patients.
Today, at least 17 million people have long COVID in the WHO European region, and people in the general population continue to suffer from post-acute infection syndromes (which might include a ME/CFS patient cohort with a population prevalence of around 0.5%, according to some estimates).
The need for a public health strategy
The Lancet paper argues that European healthcare systems can no longer ignore these illnesses. Long COVID presents clear challenges for resource-stretched healthcare providers like the UK NHS, but also an economic challenge given that many long COVID sufferers are working age adults. Some are frontline healthcare workers, bus drivers, teachers, cleaners and so on – important workers who are needed to contribute to the economy and deliver public services. Having large groups of the workforce out of work due to chronic illness presents a pressing public health problem.
An optimistic outlook
The article ends with an optimistic view that the emergence of long COVID has ignited interest in post-acute infection syndromes, and that doctors and scientists should now focus more attention on this area – something ME/CFS patients have advocated for many years.
The authors are correct that the new wave of funding that governments have injected into long COVID research will pay dividends and shed light on the condition and other post-acute infection syndromes. ME Research UK has covered findings from some of this new research recently.
What the article fails to do is pay homage to the wealth of research findings that already exists in the literature on ME/CFS (more information from the CDC), including what we know about problems in energy production and cellular metabolism, immune system irregularities, allergy, MRI and PET scan findings of neurological inflammation, or epidemiological data on prognostic rates and illness burden for patients who may go on to suffer long COVID for some time into the future.
The Lancet article should have acknowledged that we are not starting from a blank page in post-viral fatigue science. Long COVID might renew interest in ME/CFS, but existing ME/CFS research could shed light on long COVID. The jigsaw has been started – long COVID researchers may help complete the picture.
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