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.
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.
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.
GPs might not necessarily be aware of [local long COVID clinics] , 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’.
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
- https://www.bma.org.uk/news-and-opinion/long-covid-continues-to-affect-doctors [accessed 19/6/26]
- https://www.theguardian.com/society/2022/oct/13/long-covid-patients-not-believed-doctors [accessed 19/6/26]
- https://www.nice.org.uk/guidance/ng206 [accessed 19/6/26]
- 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]
- https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/ [accessed 19/6/26]
- https://www.oecd.org/en/publications/addressing-the-costs-and-care-for-long-covid_87a0c171-en/full-report.html [accessed 19/6/26]
- Long Covid patients are forgotten, ex-GP says, March 1 2026, https://www.bbc.co.uk/news/articles/c4g29l0dexjo [accessed 19/6/26]
- 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
- https://meassociation.org.uk/2025/07/publisher-elsevier-have-updated-the-kumar-and-clark-medical-textbook-entry-on-me-cfs/ [accessed 19/6/26]
- https://www.meresearch.org.uk/german-500-million-euro-research-boost-for-post-infectiuous-diseases/ [accessed 19/6/26]
- https://learninghub.nhs.uk/catalogue/mecfselearning/about#catalogue-details [accessed 19/6/26]
- 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
It is becoming increasingly common for other chronic illness communities to ‘claim’ the word PEM, as the author does when she states that PEM is present in some patients who have dysautonomia but not ME. What is the evidence for this claim?
Those who have not experienced true PEM seem to confuse exercise intolerance and/or post-exertional fatigue and/or DOMS with PEM. This conflation is very unfortunate because it causes even more misunderstanding about, and severely minimises, PEM.
I am not sure were you think I said that people with dysautonomia get PEM – PEM is the hallmark symptom of ME, many people with Long Covid who have PEM would most likely qualify for a diagnosis of ME, and as I said, there is active research ongoing into the relationship between Long Covid and ME.
I agree that GP’s need to increase their education as they will not have been originally trained in understanding the causes of these conditions and how people are currently recovering from them.
Can I suggest that you start with publications by people who have a proven record of research that has led to the recovery of many people.
I can recommend Dr Howard Schubiner Who has worked in this field for 23 years and published his research , Dr Rebecca Kennedy who previously ran a long Covid clinic, and Dr David Clarke of the ATNS.
Websites like Recovery Norway, the Recovery Channel.org and the Association for the treatment of neuroplastic conditions are good starting off points.
Schubiner does not have a proven record of research. Nor does any of the brain training programs. Mainly because it’s unfalsifiable. It’s unreasonable to expect GPs and patients to think that theories that are more based in the new age and Louise Hay actually work – ie that one has to personally intervene with behavioural methods to cure illness.
To insist that GPs need to be trained in these methods that tens of thousands of desperate patients have paid for and not shown any results is laughable.
To come on a page with your other brain training friends that often turn up on forums and patients groups to plug programs that you have personal investment in is not ethical.
In response to serious comments from a GP on the lack of treatment and research precisely because research has focused on behavioural methods for Long Covid and ME is lacking on self reflection and logic.
Science requires logic, the scientific method and decent trials – not anecdotal reports from people involved in promoting brain training.
Long covid and ME/CFS are absolutely awful illnesses to live with and it is desperately sad that so many people are suffering from them. However, I’d say there is a lot of hope as there is improved understanding that these conditions stem from a dysregulated nervous system, and can be fully reversed through NS system regulation techniques. Sometimes this takes a while but it is proving very effective for many thousands of people now, who are fully regaining their lives – will be fantastic when these approaches are better understood and more widely shared. Anyone interested – worth looking at this lady’s youtube channel – she has conducted hundreds of interviews with people who have recovered from these conditions: https://www.youtube.com/@RaelanAgle. Also for UK-based info, check out http://www.livingproof.org.uk.
There is alot of assumption here. There also isn’t alot of hope from brain training. It’s been on the pseudoscience rounds for DECADES trying to claim it treats any illness that conveniently doesn’t have a decent treatment or understanding of it’s pathology.
Funnily enough it doesn’t provide hope for people with Parkinson’s and ALS – other serious neurological disease. You would be laughed out of the park if you claimed they did offer hope if Parkinson’s didn’t have treatment or any care pathways and people had to rely on treatments like standing on a stop sign and telling their symptoms to stop like the brain retrainoners do.
To claim Long Covid and ME can be FULLY reversed through NS regulation techniques just factually untrue. We’d all be running around and out of our beds.
Nervous system dysregulation is also incredibly vague and that this is supposed to be taken seriously as a pathology with no evidence or DETAIL is something properly trained medical doctors should run a mile from.
And again you are promoting dangerous pseudoscience and jamming a decent site trying to plug your own invested interest.
I really hope GPs seeing this rubbish have the sense to see it as the new age crap it is. Hopefully they won’t be trained in having stop signs on their surgery floors to magically heal people.
Please consider these points in the light of the suggestions in some of the comments here:
Brain retraining programs often promote “mind-body” strategies based on the concept of neuroplasticity, aiming to “rewire” the nervous system.
However, there are major clinical concerns and a severe lack of empirical proof with these approaches for Long Covid and ME.
Risk of Harm and Worsening Symptoms:
Post-Exertional Malaise (PEM): Brain retraining often encourages patients to push past physical limitations or reframe warning signals as harmless. For ME and Long Covid with PEM, this can trigger severe crashes, including potentially leading to long-term physical deterioration.
Ignoring Biomedical Pathologies: These approaches treat symptoms like fatigue and pain strictly as overactive danger signals in the brain. Doing so ignores established clinical realities, such as microclots, mitochondrial dysfunction, and widespread neuroinflammation.
Lack of Scientific Rigor:
Unsupported Claims: There is minimal empirical, double-blinded, or peer-reviewed scientific evidence demonstrating that programs like those by Dr. Schubiner or advocates in channels like Recovery Norway can cure or fully recover Long Covid or ME.
Reliance on Testimonials: Success claims rely heavily on anecdotal recovery stories, making them vulnerable to the placebo effect, misdiagnosis, or the natural periods of remission seen in chronic illnesses.
Psychological Blame and Gaslighting:
Illness Stigma: By suggesting that chronic physical conditions are solely “learned” or caused by nervous system loops, these programs can make patients feel personally responsible for their symptoms.
Medical Dismissal: Similar to the controversies surrounding Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT), promoting brain retraining often results in healthcare systems dismissing the biological severity of these illnesses.
Note: While some mindfulness, stress-reduction, and vagus nerve stimulation techniques may be useful adjuncts to help manage nervous system overarousal, as part of a patient’s overall symptom management, that is a far cry from claiming that they can cure the underlying condition.
‘It became more generally accepted that we are dealing with a physical health condition that could only be tackled by biomedical research’
I am disappointed to see the biomedical research being overstated in this article and the above comment being shared. When you are in the M.E/LC ‘bubble,’ it can be very easy to think this but, in fact, biopsychosocial ideas will always be of relevance to these conditions and its ideological to claim otherwise. As a GP I would hope you would look again at the very large body of research that supports this with a more critical eye. I spent 14 years living with M.E being told that a biomedical answer was just around the corner, we were nearly there with understanding it, we nearly had biomarkers, exciting things were not far off from being uncovered…. and I know now much of that was wishful thinking from a community which was understandably desperate for answers. It cost me many years of illness when I might have been well.
I would also like to respectfully address your comments relating to brain retraining:
‘Brain retraining often encourages patients to push past physical limitations or reframe warning signals as harmless’
This is a sweeping misunderstanding. In fact, brain retraining helps people to understand there may genuinely be few physical limitations (as it suggests real symptoms are created by the brain instead of being there due to physical damage) and those warning signals can be well explained by increasingly sophisticated predictive processing models which support the fact they are actually harmless however intense they feel (see books ‘Unlearn Your Pain; or ‘The Inflamed Feeling’ for more indepth breakdowns of the science behind this).
‘Ignoring…’
The microclot theory has been fully debunked. LC does not involve microclots. And research has demonstrated that ‘neuroinflammation’ can very much be a mind-body entity and can be reversible.
‘Unsupported Claims’ and ‘Reliance on…’ Yes, there is not enough research. That is problematic. However, there is emerging research, it will take many years to get more good quality research and for now, those ‘anecdotes’ are completely stunning against a backdrop of professional hopelessness. We have large numbers of people, including some people with long term, severe M.E who are recovering fully. That is staggering and it needs paying attention to. To my mind, it is the most exciting thing in all M.E and LC research because people are getting their lives back.
Illness Stigma:
I don’t doubt some programmes can leave patients feeling blamed and that is unacceptable. The Schubiner/Clarke/Gordon school of brain retraining is endlessly validating and compassionate and does not blame patients. Unfortunately, for complex reasons, a minority of patients may still experience shame or self-blame if BT doesn’t work for them but that is the same for all sorts of treatments and conditions and involves a variety of psychosocial factors including potentially neurodivergence, past medical trauma and family attitudes.
Medical Dismissal:
Is there any evidence of this? Yes, there are bad doctors who misunderstand the severity of these conditions. Many others understand things very well and work very hard to ensure their patients know that. I meet them all the time. I believe the latter far outweigh the former although lots of fear persists that patients’ symptoms will be minimised.
It is misleading to state there is a “very large body of research” that supports the BPS model. There is a large body of research, hundreds of papers – all we’re found to be very low or low on the GRADE system by NICE for ME. Due to this poor nature of evidence the ME NICE guidelines rightly changed from BPS framing.
They have had decades to work and have had decades of research and yet still there is no effective treatment for the majority.
Science can’t have “too much biomedical” research it’s unhinged to say there is. If an illness has not had its pathology discovered or an effective treatment (and no brain training clearly isn’t) there has not been enough. Medicine is literally based in biology, in fact in can’t stray out of it, cannot stray out of the bio-medical.
A one person anecdote is not enough to counter this.