Long Covid can be a real headache, but help is at hand

Recovery from the mysterious condition starts with an admission that the sufferer is unwell and needs to rest.

More than 200 symptoms are associated with long Covid.

With Covid still among us and a campaign in full swing to vaccinate older and vulnerable people, a significant minority – of all ages – is worried less about fresh infection than the continuing debilitating effects of last winter’s brush with the virus.

Most people recover from Covid-19 within two weeks, but one in 20 – reportedly one in 10 in Australia – have symptoms that persist a year, according to a study by Imperial College London released last week. One in 13 reported symptoms three months after infection, meeting the threshold for long Covid. In Britain it was estimated earlier this year that almost two million people were suffering from long Covid symptoms.

Long Covid remains mysterious. Scientists are still trying to work out what causes it, who has it and what can be done to help patients get better.

Popular scepticism about the existence of long Covid was encapsulated in former British prime minister Boris Johnson’s analysis of the illness, which he reportedly described as “bollocks” at the height of the pandemic.

Even now, with countless research projects into long Covid at dozens of clinics, such attitudes can increase the burden on long Covid sufferers. “A lot of people do still feel isolated and not believed,” says Emily Fraser, clinical lead at the Oxfordshire Post-Covid Assessment Clinic.

There are no longer as many misconceptions about long Covid, but because the symptoms can often wax and wane for patients, Fraser says it can “be difficult for other people to understand”. Sufferers may look fine after making an effort to attend a big social or work event, only to collapse behind closed doors.

Fraser, a respiratory consultant at Oxford University Hospitals, says although referrals to the long Covid clinic are down, the condition is here to stay. “I can’t see it going anywhere quickly.”

What causes long Covid?

Scientists do not expect to find a single biomedical explanation for long Covid.

“The mechanisms are likely to be complicated and multifaceted and differ between individuals,” Fraser says. Theories being explored include that there is a low-level inflam­matory response in post-hospitalised patients and organ damage in some patients.

Studies also are examining possible low-level viral persistence, and whether micro blood clots are respon­sible. However, studies predom­in­antly have looked at post-hospitalised patients who had pneumonia and required oxygen, a different demographic from those treated at community clinics.

Is there a cure?

“Most people doing research and seeing patients with long Covid feel that there isn’t going to be a silver bullet,” Fraser says.

Trials are looking at the effectiveness of repurposing existing drugs such as antihistamines to treat patients, while a study of an American treatment for long Covid fatigue showed promising results this year and a larger study is planned.

However, these treatments will suit only some patients. “It is not one drug fits all,” says Fraser, who warns that some private doctors are recommending unproven treatments, “which is quite worrisome, as not all are risk or side-effect free”.

What are symptoms?

More than 200 symptoms are associated with long Covid. The most common among patients coming to Fraser’s clinic are fatigue and mental fatigue (or “brain fog"), breathlessness, chest pain and muscle pain. Inappropriate sinus tachycardia, where the heart rate shoots up when exertion is only mild, is also common. Loss of smell and taste are not as frequently reported at Fraser’s clinic as they were previously.

Who gets it?

Long Covid seems to affect women disproportionately, with estimates that they account for 70 per cent of cases. Fraser says some perimenopausal/menopausal symptoms, such as poor sleep, anxiety and brain fog, overlap with long Covid symptoms. Hormone replacement therapy can be helpful but does not cure patients.

Women account for an estimate 70 per cent of cases. Picture: iStock

The prevalence of long Covid is greatest in those aged 35 to 69. It is not clear why, Fraser says. One theory would be that this is also the most common age group for developing auto-immune disease. It also may be that those in this age bracket have higher expectations of their health and so are likelier to notice a fall in their ability to function than a more sedentary retired person. They also may be likelier to seek medical assistance for their symptoms.

The population attending the Oxford clinic often are those who advocate for their own health. The team believes many more people from different backgrounds and cultures may not associate their symptoms with a Covid infection, may not have been tested for Covid or do not know how to navigate the healthcare system.

At the clinic, where Fraser and her colleagues see lots of academics, teachers and medics, there are fewer patients with comorbidities – illnesses occurring simultaneously – than in some less affluent areas. Many patients are in their 40s, which, she says, “does seem to be a bit of a pinch point for getting long Covid”.

This may be because people in that age range have financial and family responsibilities that mean they do not rest properly when they suffer from Covid.

“If life is really full-on, that’s a risk factor for prolonged symptoms,” Fraser says. “People who are unable to relax and take that time out to recover risk developing long Covid.” A busy, stressful life of 12-hour days also may put people at risk of being hit hard by Covid, especially if they try to keep going. “But no one’s going to stop doing what they want to do unless they have to.”

How can you recover from long Covid?

In the absence of biomedical explanations that can be targeted with drugs, Fraser and her team focus on a holistic approach to helping patients to manage their symptoms, starting with an acknowledgment that they are unwell and need to rest.

For fatigue, they draw on experiences doctors have had in helping patients with myalgic encephalomyelitis (also known as chronic fatigue syndrome), multiple sclerosis and Parkinson’s disease, and recommend trying to conserve energy by pursuing the three Ps: prioritising the things you need to do; planning each day carefully; pacing yourself so you don’t try to operate as you used to do before you had Covid.

Many people find that brain fog is related to their fatigue. They have problems with focus, memory and concentration, including difficulties reading or working on a computer. Energy preservation and planning can help, along with trying not to worry, which can make the symptoms worse.

A good sleep routine helps with fatigue and brain fog. Fragmented sleep is widespread, as those recovering from Covid are not usually as active during the day as they used to be. They may suffer from being in a permanent “fight or flight” response and struggle to switch off at night. Adopting better sleep hygiene includes sticking to a regular sleep schedule, getting outside in daylight and exercising moderately if possible, keeping naps to 20 minutes, limiting caffeine and alcohol, and keeping screens and pets out of the bedroom.

Breathlessness is a common symptom of long Covid and conventional tests rarely show any abnormalities in the lungs. The main explanation appears to be related to how the mechanics of breathing seems to change after Covid. Sufferers stop breathing as efficiently as they did, underusing the diaphragm, the main muscle of breathing, and relying on muscles higher in the chest that usually are activated only during more strenuous exertion. This results in breathlessness on exertion and sometimes at rest.

Practising breathing exercises can help to stimulate the parasympathetic nervous system, which slows down heart rate and breathing to aid rest and energy conservation. English National Opera’s Breathe Program, an online course designed to help recovery from Covid, has had good reports, Fraser says: “Patients love it.”

Emma Tucker, a specialist respiratory physiotherapist at the Oxfordshire clinic, says many holistic therapies that patients are trialling have been found to be beneficial, including restorative yoga, tai chi and cold water swimming. “These are all very individual but do appear to help manage many of the symptoms,” she says.

“The most important message is rest, to stop pushing through. But this can be so hard for indiv­iduals as it goes against internal voices and pre-existing understanding of managing illnesses.”

Some long Covid sufferers swear by the Lightning Process, a brain-training program that combines neuro-linguistic programming with life coaching, hypnotherapy and osteopathy, but it is expensive. Tucker won’t comment specifically on the treatment but says: “Many patients are trialling lots of different therapies, many expensive and under-researched in the medical profession. But understandably people are desperate and need to get better so will trial everything that is suggested.”

What is the mental toll?

Long Covid does make some people depressed and can exacerbate pre-existing depression and anxiety.

“If you are living with a chronic burden of symptoms that prevents you from doing the things that you usually can do, it is going to get to you,” Fraser says. “After six, 12, 18 months it has a massive toll on mental health and confidence. We always ask about mood and the overwhelming feeling is this utter frustration. They are fed up with being where they are and want to get back to the things that are enjoyable in life.”

In The Long Covid Self-Help Guide, written by Fraser and her team, they suggest an effective way to feel more positive about getting better is to put a practical recovery plan in place to manage activity, work, rest and sleep, the building blocks to recovery.

Daily relaxation activities are important, as is being aware that the path to recovery may not be smooth. It is important to be honest with others about what you can do and to try to address additional stresses, whether that is a relationship that is hard to manage or your expectations of where you should be in your recovery. If you are suffering from depression or anxiety, seek help.

One thing to remember, they emphasise, is that you can recover. However, exactly what that recovery will look like is something that may require some adjustment in your thinking. Once people finish coming to Fraser’s clinic they often don’t respond to follow-up queries, so it is hard to know exactly how fully they have recovered.

But some patients who once had busy lives have reported that they can no longer live at the same pace. That may be a good thing, Fraser says, if it stops them from overstretching. They will have a better idea of their limitations and a better balance in their lives.

“We had lofty aspirations when we first started to get people back to where they were,” Fraser says.

“People are definitely getting better. Whether or not people get back to where they once were is a different question and one that’s harder to answer. Do we get people back to that kind of fast pace of life or a functional pace of life?

“They are two different things. We aim for the latter.”

The Times