The long tail of the COVID pandemic – a personal reflection

Elke Hausmann had been working as a salaried GP in Derby for a decade until Long Covid put a stop to that

Six years have gone by since the start of the COVID pandemic. For many GPs, the pandemic will have receded well into the past. For some of us, it is still our perpetual present.

It is very difficult to find out any numbers for how many GPs are affected by Long COVID, to the extend that they have had to reduce their working commitments, or have had to stop working altogether, taking ill health or early retirement.

I contacted the RCGP for clarification, but they could not help, instead they referred me to the BMA. The latest figures I could find were from a BMA survey from 2023 – out of 600 doctors who responded, 18% reported they were now unable to work due to their post-acute COVID ill health.¹ There is no way of knowing how many of those were GPs, and how many of them are still in the same position 3 years later. Neither do we know how many more doctors including GPs have joined our ranks over this time. COVID has not gone away, people are still getting infected, and there will be some who are developing new-onset Long COVID now.

Long COVID is a patient-generated term from early on in the COVID pandemic, when patients, many of whom were mildly affected initially, first realised that they developed a range of symptoms that were ongoing well beyond the short period of illness we were told to expect from a ‘respiratory’ virus. The fact that the term was patient-generated is seen by some as a reason to be suspicious of it.²

There are ‘debates’ around Long COVID that echo those relating to ME that had been going on for decades before COVID hit. Long COVID was initially discussed in its own right, but as time went on, and many Long COVID patients were developing symptoms that mirrored ME, it became clear that Long COVID may not be that unique, but fall under the wider umbrella of post-infectious diseases, which also includes ME. Many ME patients predicted that outcome much earlier than professional commentators.³

Inevitably, the initial focus on Long COVID, including much new research being initiated, also benefited the ME community, who have been in a similar position as patients with Long COVID, with their symptoms often seen as ‘unexplained’ because of a lack of tests and biomarkers (yet – there are several promising leads currently being pursued by research). While there were (and still are) those who consider Long COVID to be a psychosomatic condition, with the sheer numbers of people affected, including some with preexisting mental health issues who could testify that this illness was something very different, and the accumulating evidence from research to back this up, it became more generally accepted that we are dealing with a physical health condition that could only be tackled by biomedical research, and that brought with it a wider acceptance that ME needs to be viewed in the same way.³

It is probably no coincidence that it was in 2021, when after decades of ME patients advocating for the recognition that their condition is not helped (and indeed made worse) by graded exercise therapy (GET), and that CBT has no curative effect on their condition, the NICE guidelines on ME/CFS were finally changed to reflect that, following a review of the available evidence, stating clearly that GET and CBT were no longer recommended as treatments for ME.³

While Long COVID is a wide spectrum of disease (including cardiovascular or respiratory system damage, or new-onset autoimmune disease), much of the more severe Long COVID clinically looks like ME, and there is active research going on into the link between the two conditions.³ It is important to assess whether a patient with Long COVID would satisfy the criteria for ME,⁵ as it will change the management, especially in relation to advice around activity management (eg ‘pacing’, as in balancing activities with rest in order to stay within one’s energy envelope, which is about stabilising and conserving energy, as opposed to ‘pacing up’, which relates to a gradual (patient-led) increase in activities – the latter, when it involves going beyond one’s available energy envelope, is either not possible at all for those with ME, or not without severe negative consequences).

Unfortunately, a lot of the momentum from the earlier years of the pandemic appears to have somewhat stalled. Never mind recurrent reports of the immense cost of Long COVID to the economy,⁶ in the public consciousness, Long COVID is seen less and less as a societal problem, and our condition is being individualised. When the focus is on the individual, it shifts away from the biomedical ‘disease’ to the individual’s ‘illness’ with its psychological and social dimensions. At times, the actual disease (for which we have no cure yet) seems to recede into the background in many people’s minds.

There is a sense that we are on our own, with Long COVID clinics up and down the country either closing⁷ or focusing on a ‘rehabilitation’ approach (when that does not work for many of us in leading to any meaningful ‘recovery’), often with no or little medical input. Once a patient has exhausted what the service can offer, whether or not that has led to an improvement in their condition, they get discharged back to the GP.

Having said that, Long COVID clinics do provide much needed support for patients. Judging from what I heard at a recent clinical update on Long Covid for GPs locally, even where there still is a Long COVID service at present, GPs might not necessarily be aware of that, which may lead to less referrals into the service, giving the impression of less demand, which will contribute to more cutting of services that are (supposedly) ‘not needed anymore’.

How many GPs today feel well equipped to recognise or treat any of the common presentations of Long COVID, like POTS or MCAS (medications like betablockers or antihistamines, which we are quite familiar with, could really make a difference here to certain patients)? There are no chronic disease registers or regular follow up appointments for patients with Long COVID (or ME), even though, especially after it has gone on for two years, recovery from Long Covid appears to be rare.⁸

When I did my medical training 20 years ago, my first medical textbook was Kumar and Clarke’s ‘Clinical Medicine’ (Elsevier), which gives medical students a first overview over the classification of medical conditions. Here, you will (still today) find ME as ‘Chronic Fatigue Syndrome’ under ‘medically unexplained symptoms’ in the psychiatry section, after the editorial team rejected a petition to better reflect the nature of the disease as a complex chronic neuro-immunological condition in their 2025 updated edition. In contrast, the World Health Organisation has classified ME as a neurological disorder since 1969, and after summarising the evidence base, the Institute of Medicine in the US classified ME as a serious, chronic, systemic physical disease in 2015.⁹

My understanding of ME was shaped by that book and the subsequent dearth of training in this condition, but my experience over the last 6 years has radically altered my perspective. I have been confronted with symptoms that I wasn’t prepared for at all through my medical training and which have changed my life entirely. I did not know anything about post-exertional malaise (PEM), the hallmark symptom of ME, which is also present in many people with Long Covid, or dysautonomia, and I knew very little about severe ME.

PEM is such a difficult symptom to convey to others who have never experienced anything like it, and it is frustrating to learn how the knowledge of PEM has been there in the ME patient community all along for decades now, but our understanding of the underlying pathophysiology is still lacking due to years of indifference and underinvestment in research.

Fortunately, there is some exciting research ongoing, including in the UK, and I am confident that we will eventually be getting to the point where we will be able to understand and treat this condition much better (though whether this will come soon enough to help those of us affected today is an open question). Of course, much more could be done: Germany has recently announced a National Decade Against Post-Infectious Diseases and pledged a total of half a billion euros for further research into diseases including ME, with a stated goal of deciphering their causes and mechanisms and develop new treatment options.¹⁰ We really need more countries to follow that example.

In the meantime, my plea to any GP is to keep educating yourself about Long COVID and ME. New evidence is being generated all the time. Good starting points are the recently updated NHS England e-learning modules on ME¹¹ or this clinical care guide for managing Long COVID, ME and infection-associated chronic conditions,¹² and to listen carefully to your patients when they tell you about their illness experience.

There is much that could be done to support patients already in the here and now.

References

1. https://www.bma.org.uk/news-and-opinion/long-covid-continues-to-affect-doctors [accessed 19/6/26]
2. https://www.theguardian.com/society/2022/oct/13/long-covid-patients-not-believed-doctors [accessed 19/6/26]
3. https://www.nice.org.uk/guidance/ng206 [accessed 19/6/26]
4. https://www.imperial.ac.uk/news/news/articles/medicine/immunology-inflammation/2025/11m-awarded-to-investigate-links-between-mecfs-and-long-covid/ [accessed 19/6/26]
5. https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/ [accessed 19/6/26]
6. https://www.oecd.org/en/publications/addressing-the-costs-and-care-for-long-covid_87a0c171-en/full-report.html [accessed 19/6/26]
7. Long Covid patients are forgotten, ex-GP says, March 1 2026, https://www.bbc.co.uk/news/articles/c4g29l0dexjo [accessed 19/6/26]
8. Sivan M, Greenwood DCC, Smith T. Long covid as a long term condition. BMJ Med. 2025 Jan 31;4(1):e001366. doi: 10.1136/bmjmed-2025-001366. doi: 10.1136/bmjmed-2025-001366
9. https://meassociation.org.uk/2025/07/publisher-elsevier-have-updated-the-kumar-and-clark-medical-textbook-entry-on-me-cfs/ [accessed 19/6/26]
10. https://www.meresearch.org.uk/german-500-million-euro-research-boost-for-post-infectiuous-diseases/ [accessed 19/6/26]
11. https://learninghub.nhs.uk/catalogue/mecfselearning/about#catalogue-details [accessed 19/6/26]
12. https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf [accessed 19/6/26]

Featured image by Alex Azabache at Unsplash