Millions of people around the world are living with long Covid – yet it remains something of a puzzle.
The condition affects multiple organs and bodily systems, causing a huge variety of problems to varying degrees of severity and duration. Crucially, they vary from person to person, and are not likely to be consistent – they can come and go.
And the vast majority suffered only a mild initial Covid infection, not requiring hospitalisation. But for almost all who experience it – ‘long-haulers’, as they are sometimes called – the illness impairs every aspect of life.
Take, for example, fatigue – the most commonly reported symptom. You might imagine it to be similar to the tiredness felt at the end of a long day.
But the crippling, systemic exhaustion that long Covid causes is on an entirely different level.
Even simple activities like reading or watching TV are too much, let along the idea of being able to hold a conversation.
Millions of people around the world are living with long Covid – yet it remains something of a puzzle (stock image)
Without making an exhaustive list of all the 203 known symptoms, they include brain fog – also known as cognitive dysfunction – chest pains and breathlessness, insomnia, palpitations, dizziness, joint pain, depression and anxiety, nausea and other distressing digestive issues, food intolerances and allergies, headaches, skin rashes, hair loss, menstrual changes, erectile dysfunction, incontinence, hallucinations… it goes on and on.
The broad-ranging problems fall outside the remit of any one medical specialist, making diagnosis and treatment a challenge. But our understanding is evolving – and far from being a lost cause, there are therapies raising hopes of recovery.
The NHS has been ahead of the curve in setting up long Covid clinics – there are about 80 across the UK. Yet they are inundated, and able to handle just 5,000 new patients a month in total.
At this rate, it could take five years for all those severely affected to be seen.
And the treatments on offer in these places can be limited. Doctors who work in long Covid clinics have told us their role is more to refer patients to specialist clinics where they can get help for specific symptoms.
It’s important to say there is a paucity of scientific evidence in this area. Before NHS doctors can recommend treatment, they need to have gone through large controlled clinical trials. No specific long Covid therapy has met this bar, so far.
Yet those who feel they’ve already waited too long may just try things they’ve heard about online. It begs the question: with so many treatments being touted, what is worth exploring? And more importantly, what should be avoided?
Over-the-counter antihistamines, usually taken for allergy relief, may help, emerging evidence suggests (stock image)
We’ve spent month combing the data and found a handful of small studies that show promise, which are worth knowing about before making any decisions. Of course, it’s vital you speak to your GP before embarking on any new treatment, as there may be complex interactions with existing medication. With that disclaimer out of the way, let’s dive in…
HAY FEVER TABLETS START TO SHOW HOPE OF RELIEF
Over-the-counter antihistamines, usually taken for allergy relief, may help, emerging evidence suggests.
In one study, University College London researchers gave 26 long Covid sufferers the tablets, and 19 reported complete or partial resolution of their symptoms. Of 23 patients who weren’t given the pills, only six reported improved symptoms in the same period.
The drugs work by blocking the activity of histamine, a chemical released by the immune system. In some people, production can go haywire in response to certain substances – such as pollen – triggering unwanted symptoms.
Histamine is produced by immune system cells called mast cells – which are thought to become over-active in some people after Covid infection. In theory, by dampening this activity, the symptoms of long Covid could be reduced.
Anecdotally, antihistamines help control skin rashes, fevers, chest pain, mouth ulcers and other problems experienced by some long haulers. Experts suggest trying different over-the-counter brands to see which work best.
ASPIRIN MAY HELP… AND NOT JUST FOR PAIN
Studies show almost one in five long Covid sufferers have persistent tension-like headaches. It’s still not clear why, but one theory is the immune system reacts to long Covid symptoms by repeatedly activating the trigeminal nerve in the head, triggering pain.
DON’T BET ON THE HORSE DE-WORMER
Ivermectin, an antiparasitic drug used to protect children from severe infections in developing nations – and also used in veterinary medicine, hence the ‘horse de-wormer’ epithet – has been mooted as a Covid treatment.
Early lab studies showed it had antiviral activity. Clinical trials also produced spectacular results, with 88 per cent of hospitalised Covid patients recovering in one trial and 94 per cent in another.
Unfortunately, these studies were revealed to either be flawed or made up.
Despite this, there are long Covid patients who have given it a go. Anecdotally, some have said it made them feel better. Others claim that it made no difference.
Side effects can include vision problems, rashes, confusion, swollen glands, stomach and joint pain, and increased heart rate.
We can’t recommend that anyone take ivermectin, no matter how desperate they might feel.
Over-the-counter painkillers, such as paracetamol, ibuprofen and aspirin may give some relief but if the pain persists, it may be necessary to ask your GP for something stronger.
But beware that prescription painkillers can be addictive if used regularly for more than 12 weeks.
The benefits of certain painkillers could go beyond just soothing long Covid-related headaches.
For example, in low doses, aspirin or ibuprofen both have anti-platelet properties (platelets are cells that make blood clot) and could be used to counter the ‘sticky blood’ that many long-haulers experience, thought to increase the risk of micro-clotting, one of the condition’s apparent features.
But as things stand, there is little published research to support this and you should not routinely take aspirin or ibuprofen without your GP’s say-so as long-term use is linked with gastrointestinal bleeding, kidney damage and possibly even increased risk of a stroke or heart attack.
ADDICTION-BUSTING TABLETS COULD WORK
A drug used to combat opioid addiction might not be the most obvious choice in the fight against long Covid, but experts increasingly believe it could be key. Naltrexone blocks the effect of opioid drugs – such as heroin and fentanyl – on the body, reducing cravings for these highly addictive substances.
But in very low doses – under a tenth of what is used to treat opioid patients – it can function as a painkiller and an anti-inflammatory.
It has already been shown to benefit patients suffering from a condition known as chronic fatigue – or myalgic encephalomyelitis (ME) – a long-term illness similar to long Covid.
A US study investigating the effect of naltrexone in long Covid patients was launched in January last year and is expected to be completed next month.
It’s a promising treatment, and the results of this study are eagerly awaited.
Without making an exhaustive list of all the 203 known symptoms, they include brain fog – also known as cognitive dysfunction – chest pains and breathlessness, insomnia, palpitations, dizziness, joint pain, depression and anxiety (stock image)
DO NERVE JABS IN THE NECK EASE DISCOMFORT?
Some long Covid patients have reported improvements after undergoing a procedure called a stellate ganglion block.
The stellate ganglion are bundles of nerves in the neck, situated either side of the voice box, responsible for temperature regulation and the body’s danger response (speeding up heart rate and dilating blood vessels to deliver blood to the limbs, aiding movement).
Injections of long-acting anaesthetic into the area blocks messages being transmitted by the nerves – and the jabs are offered as a treatment for menopausal hot flushes, excessive sweating, some kinds of head and limb pain, and also post-traumatic stress disorder, in which patients suffer panic attacks among other problems.
Some experts believe long Covid symptoms might be due to misfiring or unbalanced nervous system responses, and that offering a stellate ganglion block might help. Two case reports published in the Journal of Neuroimmunology showed positive results.
PILL THAT WE KNOW WORKS
Last week, the US National Institutes of Health announced a billion-dollar trial to see if an anti-viral drug called Paxlovid could help millions of long-Covid suffers around the world. The drug will be tested on 1,700 ‘long-haulers’ after smaller studies – combined with anecdotal reports from many long Covid sufferers – suggested it can banish many of the crippling symptoms.
The drug has already proved its worth fighting acute infection – when patients first fall ill with Covid.
A study in the British Medical Journal in November last year showed that for patients given the tablets within three days of Covid symptoms appearing, their risk of needing to be admitted to hospital with Covid or dying from it was slashed by almost 90 per cent.
The theory is that it may also help some long Covid sufferers because, in some cases, the virus hangs around in the body long after the initial infection – continuing to cause a wide range of symptoms.
Some medics have been calling for a large-scale long Covid trial for more than a year. The new US study should help identify who is likely to benefit most from the drug. It’s early days – but we’re aware of many long-haulers who have taken Paxlovid and found themselves almost back to normal.
A 42-year-old woman who had the injections found that almost all her symptoms, including loss of taste and smell, fatigue, chest pain, memory issues and dizziness, reduced in severity. It’s not available on the NHS, but some private pain clinics in the UK give stellate ganglion blocks to long Covid patients. To find them, the best place to start is a Google search.
TRY A BRAIN ZAPPER… BUT IT COULD BE COSTLY
Many long-haulers we’ve spoken to swear by gadgets that stimulates the vagus nerve – the longest and most complex of the cranial nerves which runs from the brain stem to the abdomen, branching into numerous organs. To use these devices, you connect electrodes to the ear, shoulder or neck. They send a mild electrical signal through the skin to the vagus nerve.
Used alongside meditation or good old-fashioned rest, it can help with the exhaustion felt after exertion that many long Covid patients experience. There are a number of machines on sale, including the Alpha Stim, which NHS watchdog the National Institute for Health and Care Excellence said ‘showed promise’ in treating anxiety. But be warned, they often cost hundreds of pounds.
BE WARY OF CLAIMS MADE FOR A MIX OF STATINS
One eye-catching US study publicised earlier this year involved giving 18 long-haulers a combination of prevastatin – tablets usually given to reduce cholesterol levels and prevent heart attacks – and maraviroc, an antiviral originally developed to treat HIV.
After six weeks, wide-ranging improvement in symptoms – including memory and breathing problems and fatigue – were seen.
It’s believed that the drug combination may have an effect on the body’s inflammatory responses.
However, there is too little evidence for NHS backing, and a private prescription for the medicines could cost up to £1,000 per month.
There is also a risk of some quite severe side effects from maraviroc, including body aches, widespread pain, excessive mucous and dizziness. Far more research would be needed before it was safe to try.
A drug used to combat opioid addiction might not be the most obvious choice in the fight against long Covid, but experts increasingly believe it could be key (stock image)
We’ve spent month combing the data and found a handful of small studies that show promise, which are worth knowing about before making any decisions
ANTIDEPRESSANTS CAN TREAT SEVERAL SYMPTOMS
Antidepressants can be repurposed to treat a number of long Covid symptoms. The drugs work by regulating serotonin levels in the body – a chemical in the brain believed to regulate mood.
This is crucial in the fight against anxiety and depression.
However, one such drug, amitriptyline, has been shown to help cut the headaches that affect 15 per cent of long-haulers, as well as relieve pain and improve sleep.
Another, mirtazapine, can also help with sleep problems as well as improve appetites.
An Italian study published last January found that more than 90 per cent of patients suffering from post-Covid depression saw their moods significantly uplifted after they began taking the antidepressants. This is one aspect of long Covid we know we can successfully combat.
ANTI-BLOOD CLOT TABLETS SHOW SOME PROMISE
Increasing evidence suggests that the Covid virus damages the lining of blood vessels – increasing the risk of blood clots, which restrict the flow of blood around the body, leading to fatigue, brain fog and nausea.
And this is why the drug sulodexide has been investigated. It is given to patients who have developed potentially life-threatening blood clot conditions such as deep vein thrombosis, as it can quickly improve the circulation. But a study published this year in the Archives of Cardiovascular Diseases investigated the effects of giving sulodexide to 79 long Covid patients. Three weeks later, the recipients saw a marked improved in their symptoms, including chest pain, heart palpitations, fatigue and brain fog.
Further studies, involving a larger patient group, will need to replicate these results before it can be given to UK long Covid sufferers.
Of course, it’s vital you speak to your GP before embarking on any new treatment, as there may be complex interactions with existing medication. With that disclaimer out of the way, let’s dive in…
SPEND SOME TIME IN AN OXYGEN CHAMBER
Some studies suggest that damage to the blood vessels caused by the virus might impair the flow of oxygen to muscles and other parts of the body, triggering breathlessness and fatigue. Experts have suggested a technique called hyperbaric oxygen therapy (HBOT) could counter this issue.
Patients are placed inside a pressurised tank filled with much more oxygen than in standard air.
Breathing in concentrated oxygen raises the amount which enters the blood and gets delivered throughout the body.
HBOT is already used to treat carbon monoxide poisoning, gangrene and decompression sickness experienced by deep sea divers, otherwise known as ‘the bends’. In a UK study, ten Britons with long Covid were given ten hyperbaric oxygen therapy sessions each, over a 12-day period. They reported a significant improvement in fatigue and brain fog, however it’s not clear how long-lasting the effects are.
This is worrying, as the treatment is expensive. Private high street health clinics often offer HBOT from £100 per session. But these machines are typically not as powerful as the one used in this study, which was medical-grade, costing thousands of pounds per session.
- Gez Medinger is a science journalist, film maker and has first-hand experience of long Covid, having suffered from it. Danny Altmann is Professor of Immunology at Imperial College London. Their book, The Long Covid Handbook, is out now, published by Penguin at £14.99.