At the start of the pandemic, respiratory physician Dr Asad Khan was on the frontline of the NHS battle with Covid and was struggling to protect himself with what he called ‘totally inadequate PPE’.
His complaints seemed justified when he was infected with the virus and struggled with serious Covid.
‘I was very fatigued, slept a lot and had a low-grade fever,’ he says. ‘It took me a month to recover.’
But he’d only been back at the Manchester hospital where he works for three days when he was hit with worse fatigue and a sensation of not being able to breathe deeply enough. Within a day, he was bed-bound.
He had Long Covid and wouldn’t work again for a year.
The 46-year-old developed POTS (postural orthostatic tachycardia syndrome), a condition where your blood pressure plummets when you stand up. His thinking also became confused and his memory unreliable.
Apheresis is used to remove fats from the blood of patients at high risk of clots. Dr Jaeger ran a trial with 19 Long Covid sufferers. After one session, ten had recovered and eight had improved [File photo]
‘I had chest pains and suffered from dizziness,’ he says. ‘Then I developed hives and my skin felt as if it was on fire. I was on immunosuppressants for six months.
‘By August 2021, I was virtually bed-bound with crippling nausea; I couldn’t eat or sleep. I stayed in a darkened room as light and noise were unbearable. I couldn’t do anything to help my wife [Aisha Sarwar, a GP] with our two kids.’ This from a man who had previously gone to the gym three times a week and cycled and swam regularly.
Long Covid is the iceberg of the pandemic, its ramifications still largely hidden but which threaten to sink the health service.
Just as infected patients feel they’re recovering from Covid, they’re hit with symptoms they may have had before or which are new — commonly fatigue and breathlessness, although there are up to 200 recognised symptoms.
It’s estimated that between 1.3 million and 2 million Britons are affected, many coping with debilitating symptoms that doctors at the 80 Long Covid clinics, set up by the NHS, often have little more than palliative treatment to relieve, let alone cure.
There’s clearly a huge demand for effective help, and last March, £6.6 billion of funding was announced for the clinics. But patient groups have been critical.
Long Covid is the iceberg of the pandemic, its ramifications still largely hidden but which threaten to sink the health service
Having been referred to one himself, Dr Khan wasn’t impressed. ‘I found the official approach no help at all,’ he says.
‘The treatment clinics seem to regard Long Covid patients as needing help on how to recover from shock or trauma. They give advice on how to pace yourself for fatigue, or how to correct disordered breathing patterns for breathlessness.’
He continues: ‘But we aren’t recovering from a trauma such as a car accident, we have an ongoing, active illness: we need investigation and treatment.
‘The doctors I saw for specific symptoms told me they’d get better with time, or the cause was psychological, or I’d have to wait for a treatment supported by a trial.
‘The NHS demands that possible new treatments go through a randomised trial involving hundreds of patients comparing the treatment with a placebo,’ he explains.
While acknowledging the importance of treatment based on evidence, Dr Khan adds: ‘That usually takes years to complete. We don’t have years, this is a crisis now.’
It’s a problem recognised by experts such as Professor Danny Altmann, an immunologist at Imperial College London.
‘I sympathise with patients’ frustration, but we have to test treatments properly before making them available,’ he says.
‘We are doing a lot of research into different aspects of the Long Covid puzzle.’
One area being investigated is the virus’s effect on blood clotting. A problem with blood can affect almost every organ in the body. But even just setting up a large trial could take six months.
While additional funding for Long Covid research has recently been agreed, Professor Altmann says there is still something of a postcode lottery for getting an effective and relevant treatment.
‘There are some [Long Covid clinics] that are really good,’ he says. ‘They diagnose quickly with relevant tests and scanning machines, then put patients on a pathway to getting the best treatment.
‘But others seem more focused on helping patients adjust to a disabled life.’
Professor Brendan Delaney, chair in medical informatics at Imperial College London, and who’s had Long Covid, points out the clinics were set up when very little was known about the condition, and supportive treatments, such as learning how to plan your day so you don’t get too fatigued, looked like a good option.
‘Now we have much more research on the role of factors such as clotting that opens up new possibilities, but there is no assessment of how the clinics are performing, their staffing levels or what treatments are being offered.’
In November, Dr Khan found out about a new treatment for Long Covid focused on a particular type of blood clot.
Resia Pretorius, a professor of physiology at Stellenbosch University, in South Africa, found the virus caused a massive increase in tiny blood clots, which the body found very hard to remove. But small trials showed that removing them significantly improved patients’ symptoms. The thinking is that the clots reduce blood flow and, in turn, the amount of oxygen getting to the organs.
Oxygen is crucial for making adenosine triphosphate, the compound that provides the energy that drives all the body’s processes.
Indeed, the effects of a reduction in oxygen read like a checklist of Long Covid symptoms: acute fatigue, dizziness, depression, memory problems, muscle pains, irritability and lung problems.
When Dr Beate Jaeger, who runs a clinic in Mulheim, Germany, which treats patients at high risk of blood clots, heard about this work she wondered if a blood washing process, apheresis, would work for Long Covid.
Apheresis is used to remove fats from the blood of patients at high risk of clots. Dr Jaeger ran a trial with 19 Long Covid sufferers. After one session, ten had recovered and eight had improved.
Dr Khan, who learned about the treatment from other ‘long haulers’ online, felt he had little to lose and travelled to the clinic.
‘I arrived in a wheelchair,’ he says. ‘I was exhausted by the one-hour flight and promptly fainted.’
He was soon hooked up to the machine. ‘Normally it can handle three to four litres at a time,’ he says.
‘But my blood was so packed with micro-clots it became blocked up after half a litre.
‘You can only do one session a week and so my first visit lasted seven weeks.’
He says by then he ‘could walk a short distance, read scientific papers, eat foods I’d become intolerant to and my nausea had gone. I felt I was getting my life back’.
But it came at a cost: so far he’s spent £30,000.
Given the time frame, he might have recovered anyway. But Dr Khan is convinced, and has been working with Dr Jaeger to gather the data. They hope to publish their findings soon.
‘Small studies like these are valuable but need to be backed up by more detailed research,’ says Professor Delaney. ‘Anti-clotting drugs can also reduce the micro-clot burden, but they come with a risk of uncontrolled blood loss.’
Apheresis is far from the only promising area for Long Covid. For instance, a small study run by experts at Addenbrooke’s Hospital in Cambridge suggested that improving the balance of gut bacteria may help.
Yet the question remains: are patients affected now likely to benefit from such cutting-edge work any time soon?
Food to boost mood
This week: Cheese
‘Cheese is a good source of an amino acid [one of the building blocks of protein] called L-tyrosine that’s directly related to the release of “happy hormone” dopamine,’ says pharmacist Mahmoud Khodadi. Dopamine is a ‘reward’ chemical: studies suggest that the more L-tyrosine in the diet, the more positive people are likely to feel — although most research has evaluated the powdered supplement, rather than the food itself.