The after effects of Long Covid have rightly been receiving attention. It’s also been gathering a number of names, from simple “long covid” to “long-haul covid” and people with it called long-haulers. In the medical and research world it’s called “Post Covid Syndrome” or maybe “Post Acute Covid” or “Chronic Covid”.
Whatever it’s called is secondary to what it is, and what can be done about it. Here I take a quick look at the diagnosis, management, prognosis and treatment of long covid and how it applies to you
Long covid is possible best described as a type of post viral disease syndrome. A proposed definition of Long Covid is, “Not recovering for several weeks or months following the start of the symptoms which were subjective of covid, whether tested or not”. It’s generally accepted as an after effect of Covid 19, but because of poor Covid 19 testing availability, not everyone who had covid was able to get tested. There were also people with asymptomatic covid where the need to test wasn’t realised.
There are a number of possible explanations including auto immune response or inflammation in and around the heart. It appears that Long Covid is twice as common in females than males although this could be because women are generally seen to be forthcoming with their health. The age range appears to be pretty evenly spread.
It is estimated that as of the 09/09/2020 around 60,000 people in the UK have long covid. This equates to approximately 2% of people that contract covid, but potentially, the numbers could be far higher because as Dr Nisreen Alwan has said, no one is counting the number of people with long covid. You are assumed to be recovered because you don’t have covid anymore.
As Dr Alwan writes in her Nature article, “The ‘recovery’ definition must include duration, severity and fluctuation of symptoms, as well as functionality and quality of life. Everyone who is symptomatic would remain a ‘case’ until they fulfilled the recovery criteria or died. This is basic bread-and-butter epidemiology.”
This isn’t happening. There are no tests for Long Covid. It isn’t monitored and as such, people suffering from it risk being forgotten because they won’t be seen as ill.
Your GP will now hopefully be aware of Long Covid and because its a illness that appears to be common among Doctors and Nurses will be accepting of it too. This is despite Royal Free Disease, a disease affected 292 members of the medical, nursing, auxiliary medical, ancillary, and administrative staff fell ill, of which 255 were admitted to the hospital. It was for a long time after dismissed as hysteria even though it was later classified as ME the symptoms are very similar to Long Covid
A recent BMJ webinar featuring researchers, medics and medically qualified suffers indicates that, at least from the medical community there is a wish to take long covid seriously as an illness.
The trouble I fear is that they will just be looking at teaching people how to manage the symptoms of their illness through pacing, as at one point sufferer Prof Paul Garner said “we need rehabilitation experts to pull all this together rapidly”. This was expanded on at a later date when he said that physiotherapists and Occupational therapists were very good at helping people manage fatigue. This is pretty much the crux of it; management by pacing.
Paul Garner in a BMJ blog wrote, “Don’t try to dominate this virus, accommodate it.” This is a great start at pacing, but maybe doesn’t go far enough for those unfamiliar with pacing properly. Dr Raymond Perrin a researcher in ME suggests that you “think about what you can do and do half of it”. This simplifies what pacing is and how to do it.
There is nothing inherently wrong with pacing. A poll by the ME association of ME suffers put Pacing and Meditation in the the top two spots for preference. Unfortunately these are just management tactics.
When looking at what treatments there are for people with long covid we get a little stuck because of the covid timeline.
The world really only became aware Covid 19 in early 2020. The drive was to monitor, stop the spread and limit exposure and deaths, while at the same time a “race” to create a vaccine was underway. After effects probably weren’t noticed either, because everyone was preoccpied with the virus and a critical mass of post covid syndrome suffers took a while to build up.
As mentioned earlier there is no real appreciation of exactly how many people have long covid because it wasn’t counted. Even basic research on numbers isn’t there, yet alone a “cure”.
All the research is from another forgotten illness with very similar symptoms, Myalgic Encephalomyelitis (ME).
All the useful treatment from conventional medicine on ME is really a management approaches; how to Pace. In the earlier previously mentioned ME association poll the 3rd place was actually a treatment; The Perrin Technique. Despite high ME patient satisfaction and reports of successes within the ME association website they don’t support even though the evidence base is slowly growing. This potentially includes this recent early stage paper on COVID 19 and Long Covid that proposes very similar mechanisms to Dr Perrins established model for the causes on ME
Interestingly though, there are growing numbers of independent patient reports in Long Covid Facebook groups of successful treatment outcomes of the Perrin Technique for people with Long Covid. There has even been a letter in journal featuring a case study study on the treatment of Long Covid.
There are some respiratory physiotherapists reporting successes and improvements by helping people with their breathing mechanics and breathing patterns. I’m not sure if this was help with their breathlessness (a potential long covid sign) or with their fatigue. I’d also be intrigued to find out if this approach would work for someone that doesn’t have major respiratory problems.
If we consider other methods of treating ME, most of them are too out there to be considered rationally. Although Tim Spector did suggest a research trial of steroids as a potential preventative. If the steroids were used as a treatment and Long Covid mirrors ME, then I believe this would make your symptoms worse, but it may be worth a trial.