How to live with long Covid
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“It’s a challenge, long Covid,” says Dr Toby Hillman, a consultant in respiratory and general medicine at University College London Hospitals (UCLH). “It is barely defined, and different groups of people have very different symptoms.” How best to treat those sufferers, of whom there are thought to be 1.1m in the UK alone, is a quandary of our times.
“Covid-19 is a novel virus. So, long Covid is a novel post-viral syndrome,” says David Putrino, a rehabilitation expert working with the Center for Post-Covid Care at New York hospital Mount Sinai. “There have been no trials sufficient to generate evidence for treatment.”
“We are trying treatments based on empirical reasoning, that we reasonably feel could help, because the evidence base is not yet fully formed,” says Dr Paul Glynne, a consultant physician at and former medical director of UCLH. Many trials are planned or under way, and anecdotal study has found that some things, such as antihistamines, have proven beneficial. But long Covid remains a problem.
Guidelines by the National Institute for Health and Care Excellence (NICE) recognise symptoms of the officially termed post-Covid-19 syndrome as those that develop during an infection consistent with Covid-19 and continue for more than 12 weeks. The key advice is to pace yourself, especially between acute Covid (up to four weeks) and long Covid (week 12 onwards), and seek medical help “if you are experiencing troublesome symptoms like ongoing breathlessness or chest pains”, says Glynne.
But, for those who feel that they have exhausted options via their doctor, there’s an understandably fervent desire not to miss any new interventions that may help. While “private physicians may not have the range of specialisms needed to treat a multisystem illness, nor the experience of those in dedicated [long Covid] clinics,” says Hillman, specialists do have experience with various isolated symptoms such as brain fog, turbulent gut or poor sleep. And these other treatment approaches may encourage a virtuous cycle of recovery.
There are a host of alternative suggestions as to how to treat long Covid. While “many do not do you much damage, except to your wallet”, says Hillman, there are inevitably some to be wary of. Gwyneth Paltrow’s advocacy of intuitive fasting is one such example: the theory was largely discredited by NHS medical director Stephen Powis. Nevertheless, there are routes to managing aspects of the condition that might prove more helpful.
Over-exertion is associated with the relapse of long Covid symptoms, explains Hillman. “Pacing is difficult, but if you manage not to overcook it when you feel good, you can avoid getting into a boom and bust cycle.”
“Fifty years ago, it was normal to spend a number of months convalescing after an illness like tuberculosis,” says Professor Helen Stokes-Lampard, chair of the Academy of Medical Royal Colleges, who sits on NHS England’s long Covid task force. “Today we have unrealistic expectations about recovery from acute infection. If you’ve had Covid, be kind to yourself and phase slowly back into work.”
The Centre for Health and Human Performance is as comfortable dealing with Olympians as the seriously sick. At its own long Covid clinic, specialists combine sports medicine with physiotherapy – monitoring details like heart rate in conjunction with how hard exercise feels – to tailor an individual recovery programme. An initial assessment costs from £275 (chhp.com) in person (in London) or online.
More online support comes from former champion triathlete Dr Tamsin Lewis, who has drawn on her medical knowledge as well as her own experience of long Covid to create a support platform that hosts content about managing the syndrome, and holds twice-monthly group Q&A sessions (£15 a month, at wellgevity.com).
At Mount Sinai hospital, Putrino uses the Stasis breathing programme (free and paid-for breathwork coaching can be found at stasisperformance.com). “Almost all [long Covid] patients have low carbon-dioxide levels, and this improves their breathing patterns and can really stabilise symptoms; it has been amazing for a lot of individuals.”
“Not only will [such classes] help open the lower parts of your lungs, but the exercises will also create changes in the Autonomic Nervous System, which can reduce stress levels and have knock-on beneficial effects,” says Dr Claire Steves, who has been leading research into Covid studies at King’s College London. A wealth of breath coaches run online classes. Rebecca Dennis’s start at £110 for one hour (at breathingtree.co.uk) and she also has a guide on Audible: Breathe: A Practical Guide to Breathwork Exercises.
More fun, perhaps, are singing or swimming, which Hillman recommends, as they help with diaphragmatic breath. He directs some patients to the English National Opera’s Breathe programme (referral only), which uses singing techniques to aid recovery. For an immersive retreat, the Detox Revital & Sport Programme at Tyrolean health clinic Palace Merano runs diaphragmatic exercises and a respiratory-based physiotherapy programme (from €6,742, palace.it).
Symptom: Gut turbulence
“Covid is associated with profound changes in the intestinal microflora,” says consultant physician and gastroenterologist Professor Ingvar Bjarnason. Following an Italian study that suggested remarkable improvements in Covid patients who started taking probiotics, Bjarnason has set up a randomised clinical trial at King’s College Hospital, London. “There’s no data so far on probiotic treatment in post-viral fatigue patients, but in taking it there is nothing to lose,” he says. Which probiotic, however, really matters. “Only two or three have shown efficacy in other conditions,” he adds, mentioning Alflorex (£49.95 for 12 weeks, at precisionbiotics.com) and Symprove (from £79 for four weeks, at symprove.com).
The jury is out over generic supplementation. However, a clinical nutritionist can test for deficiencies in, for example, omega-3 fatty acids, which relate to inflammation, or magnesium, which is required for stress control and sleep. Clinical nutritional therapist Peter Cox runs online and in-person consultations (from £95, at petercoxnutrition.co.uk), while clinical nutritionist Rhian Stephenson offers online consultations (from £300, at artah.co).
The Lifesum app enables users to track food intake – and hence record foods that may trigger sensitivities – and uses AI to give dietary guidance if, for example, you are eating insufficient sources of protein or vitamin D (one-month subscription, £9.99).
And at SHA Wellness Clinic in Spain, the new gut-health programme draws on a range of disciplines to address inflammation and dysbiosis (an imbalance of gut bacteria); optimise the neuroendocrine system (which regulates hormones); and rebalance the microbiome (the ecology of bacteria within the digestive system). Seven nights costs from £4,973 per person (shawellnessclinic.com).
Symptom: Brain Fog
“One of the most striking symptoms we see is brain fog,” says Dr Hadi Manji, a UCLH consultant in neurology. “Concentration may be reduced or memory impaired; headaches, dizziness and fatigue are also a huge problem.”
“It is as important not to overdo it cognitively as it is physically,” he continues, suggesting sufferers ease back to work with one or two half-days a week. While “there are no proven treatments”, his in-clinic investigations might include an MRI of the brain to look for evidence of inflammation or strokes that can occur as a complication of Covid-19.
But one thing you can manage yourself is hydration. “With or without long Covid, dehydration can lead to issues with concentration,” says neuroscientist and executive adviser Dr Tara Swart. “My executive clients rarely drink enough and since the brain is largely made up of water, even a three per cent decrease in hydration can affect memory and focus.” She adds that hydrating foods like cucumber and melon are less easily flushed out of the system (as water can be if you drink a lot of caffeine). Vegetable-based green juices such as those by Plenish (£9.90) may also be beneficial.
“Suffering from an unexplained illness is incredibly distressing,” says Hillman. “Approaching this long-term illness without paying attention to the psychological aspect is like going into a fight with one hand behind your back.”
“Everyone has triggers that appear to relate to a sudden change in heart rate, and which may be caused by intense emotion,” agrees Putrino. He recommends techniques developed for managing fear and anger, and steering towards equilibrium – such as meditation. A wealth of studies connect Vedic (or transcendental) meditation with a reduction in symptoms of trauma, anxiety and depression.
Courses, such as those at the London Meditation Centre, are a practical way to learn meditation skills, but tech offers in-the-pocket alternatives: new app SparkUp uses neuroscientific insight to set daily exercises that are designed to strengthen neural pathways and help reach goals – including emotional balance (annual cost, £69.99).
And for the full immersive treatment, the Swiss- and UK-based Paracelsus Recovery clinics have parsed their expertise in mental-health disorders to work with long Covid symptoms, such as stress and depression; treatments require at least a week (CHF100,000, about £78,585), and ideally more than two weeks (paracelsus-recovery.com).
Symptom: Disrupted sleep
“A major barrier to recovery is sleep disruption,” says Glynne. “People think it might be nice to get a good night’s sleep – in fact, it is crucial.” Dr Rangan Chatterjee’s podcast contains a detailed overview of “sleep hygiene” approaches – from getting up and going to bed at the same time, to no screens before bed – while the Pzizz app uses psychoacoustic musical “dreamscapes” to calm the mind and help you fall asleep (free, with in-app purchases).
For a systematic reset, consider the five-night Better Sleep programme at Swiss medical spa Clinique La Prairie, the scope of which includes breathing and neurological assessment, consultations on diet and relaxation techniques (from £10,509, cliniquelaprairie.com). Or Germany’s Lanserhof Tegernsee, which has a sleep laboratory that feeds data such as sleep cycles and breathing patterns to a team of sleep specialists (seven nights, from €7,863, lanserhof.com).
Letter in response to this article:
Traditional convalescence is the best post-viral cure / From Neil Riley, Chairman, The ME Association, Buckingham, Buckinghamshire, UK