The truth about ‘long Covid’ is finally coming out
Few consequences of the Covid-19 pandemic are as controversial as claims about the existence of a condition called Long Covid. Patient advocacy groups have identified a bewildering variety of harms that happen to have followed a Covid infection. But this could just be coincidence. Some of the events are not biologically plausible enough for Covid to be a likely cause, in the present state of knowledge. As with HIV/AIDS during the 1980s, patient activism is important in attracting attention from research funders and scientists. It is a rich source of ideas to investigate. But it must never be mistaken for rigorous science.
This matters for two reasons. The fear and uncertainty around Long Covid attracts many people with other motives. These may be political, trying to discredit the political choices made by the Conservative government in pandemic management. They may be mercenary. Like HIV/AIDS, Long Covid appears to have attracted many snake oil merchants, some of whom may even have a medical licence. Governments have a proper role in consumer protection. There have long been bans on advertising cancer treatments, for example, to prevent quacks from taking advantage of sick, vulnerable, and desperate people.
As a custodian of taxpayers’ money, the NHS also has a duty to focus its efforts where there is good evidence of likely benefit for its use of resources. Treatments should never be offered simply because patients would like to have them.
In a consumerist age, though, there are expectations that medical interventions should be provided just because some activist group would like them to be. During the pandemic many social interventions were introduced based on flimsy or non-existent evidence – but responding to demands that “something” should be done. If necessary, activists claimed, standards of evidence established in medical practice for the last seventy years must be revised to fit.
The Long Covid movement is similar. Much activist evidence comes from personal anecdotes or case series. These can stimulate thinking but are poor evidence in their own right. Whenever more rigorous work is undertaken, it tends to undercut hyperbolic claims. A recently-published CDC study, for example, looks at one condition, ME/CFS, often claimed to be a form of Long Covid. Comparing post-Covid patients with victims of other respiratory viruses, there was little or no difference in the incidence of ME/CFS. This study is consistent with a growing body of work that shows comparable rates of harms in Covid-infected and control populations.
It would be extraordinary if Covid were the only viral infection not to have an associated post-viral syndrome. But some of the complaints about Long Covid appear to reflect unrealistic expectations of the speed of recovery from infections. Antibiotics have been so effective against bacterial infections that many people have forgotten how long recovery used to take. There is no equivalent of antibiotics for most viral infections. Nevertheless, even if the rate of Long Covid is only around 3 per cent of those infected, implied by the best studies, this is still a large number of people.
The NHS must take Long Covid seriously, especially as basic research may also help those with other post-viral syndromes. But it should not be unduly swayed by activist pressures to divert resources from other life-limiting conditions with treatments of proven benefit. Nor is lingering pandemic fear a justification for community interventions, whose evidence base only looks weaker as time passes.