IMAGE DESCRIPTION: An image of the wording Long Covid with spike proteins at either end. The title (top left), the Pulse logo (top right) and the ME Association logo (bottom right)

Pulse: Long Covid: Explaining the unexplainable?

Emma Wilkinson reports on Long Covid in Pulse (an online publication and magazine) that offers up-to-date information for General Practitioners (GPs) in the UK


Long Covid is affecting 2 million patients in the UK, and GPs are struggling to treat them. But the volume of patients may prompt more research into treatment for medically unexplained symptoms.

Studies suggest that vaccination programmes have helped to reduce the burden of long Covid. Dr David Strain, senior clinical lecturer at the University of Exeter Medical School, says initially one in 10 patients reported ongoing symptoms at 12 weeks but that figure is now around 3%. “But 3% of a large number is still a large number and in the next wave, I’m not worried about hospitals being overrun, I’m worried about the impact on referrals for long Covid services.”

Alongside the issues with referrals, the expertise available at long Covid clinics can vary widely as they have all been set up in different ways. They can be physiotherapy based, or centred around psychological services. Some of the first long Covid services were organised by respiratory clinicians who expected to see lots of breathlessness. Dr Strain says there is a significant subgroup of long Covid patients who are experiencing respiratory and cardiac symptoms.

Professor Majeed [a GP and professor of primary care and public health at Imperial College London] says patients can often be very disappointed to discover the limited options available to them, after waiting a long time to be seen in a specialist clinic and undergoing a large number of assessments and investigations. It’s thought that around 65%-75% of those who have symptoms at four weeks will have recovered in a year.

The ONS data suggest around 400,000 patients are still suffering symptoms from that first wave. What isn’t clear is what comes next for that group. ‘Many patients find their symptoms will improve over time and need to be encouraged by their GPs and primary care teams that some recovery is possible,’ Professor Majeed adds.

But there is another reason the long Covid clinics haven’t helped much – because for patients with unexplained medical symptoms, especially fatigue and brain fog, there is often little even specialist clinics can offer. In this aspect, there are parallels with other conditions, says Dr Strain: “There is a group of long Covid patients who are absolutely typical of CFS/ME.” Indeed, in June 2020, some of his CFS/ME patients said their symptoms had been reactivated by long Covid. 

Understanding of the pathophysiology of long Covid is growing, but – like CFS/ME and fibromyalgia – it is hard to unpick cause and effect. Some research is focusing on microvascular dysfunction, while other work has shown markers of inflammation months after infection. “Personally, I’ve bought into the fact that this is residual virus hanging around in the gut or the nervous system. It fits with the trajectory.’‘

Professor Carolyn Chew-Graham, professor of general practice research at Keele University, also sees parallels with CFS/ME. “There is so much resonance between how people with long Covid talk about their condition and how people with chronic fatigue or fibromyalgia talk about theirs.”

[She] adds while we may not yet understand exactly what is going on in long Covid, there are things that can be done to help patients once other potential causes have been ruled out. “The management tends to be supportive, maybe psychological input and physio for dysfunctional breathing or a trial of different medications if you have postural orthostatic tachycardia (POTS) or gastrointestinal disturbances, but often we’re treating the symptoms,” she says.

But long Covid might have one potentially positive impact. “It may be that because of long Covid, there may be more work to try to find the reason for CFS/ME, an underlying pathology.”

What GPs can do

In the meantime, GPs are having to get familiar with a new condition. “There is a lot that GPs can do. You can look for POTS or other forms of dysautonomia and you can give advice about salt, fluids, compression and you can start to treat dysautonomia,” [Professor Brendan Delaney, a GP and chair in medical informatics and decision-making at Imperial College London].

He adds: “ß-blockers are probably the first step to doing that and I think most GPs would be happy to give a ß-blocker if there isn’t a contraindication as it’s a well- understood medication given for lots of things.”

“There are other medications some GPs feel need a specialist, like ivabradine, but a number of GPs are becoming specialists in these and starting to use them. For instance, normalising the heart rate response in POTS makes people feel a lot better.”

Professor Delaney has also found patients in his practice who come along with a cluster of symptoms that are like allergies. So new allergic responses to things – cough, wheeze, itchy eyes, skin rashes, gastrointestinal disturbances, bloating or reflux – may benefit from double-dose histamine blockade as a trial treatment. This doesn’t solve the underlying problems, he says, but the patients “cope with daily life a bit better”. 

Dr Strain is currently planning a trial of high-dose antivirals as a potential treatment. He had one patient with long Covid who because of a rare blood cancer was not clearing his infection and still testing positive three months later. In his case, a 10-day course of antivirals was a success. “You can’t start making conclusions based on one patient but it is enough to trigger a clinical trial,” he says.

Dr Strain also doesn’t want people to dismiss the use of psychological therapy. He accepts that it is controversial but believes it should be part of a package alongside medical interventions to support patients who have been through a lot. After all, he adds: “Many of our patients are going through a mourning response, they have lost a chunk of their lives.”

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