Are We Giving the Wrong Advice to People With Long COVID?

Sasha Baker explores the problems with the health system’s exercised-centred response to Long COVID

Speaking over Zoom from her bed, Paula held up a large IKEA bag filled with the medication she takes daily to manage her Long COVID symptoms. She came down with COVID-19 in October 2021, which then developed into Long COVID.

It’s a difficult condition for anyone to live with, but it was especially difficult for Paula, who had a number of existing long-term conditions that were worsened by getting Long COVID, including irritable bowel syndrome. Her symptoms had previously been well-managed, but now she was “back to square one”.

The drugs in her bag full of pills include the painkiller gabapentin, which is a regulated drug that she has to sign for at the pharmacy. “I have to spend an hour and a half every week putting the medication into a small box, so that I can make sure I don’t overdose – because what I’ve got in that bag is enough to kill myself,” she said.

The medication makes her feel “drunk”, she says, and she often doesn’t know the day of the week it is.

“I’m not a sedentary person,” said Paula, who used to enjoy Pilates and going for long walks. She hates being bed-bound but she stays there out of necessity.

Paula was experiencing post-exertional malaise (PEM), which is when existing symptoms worsen after over-exertion. A study of more than 3,500 Long COVID patients found that 89% suffered from PEM, making exercise risky.

Paula’s husband has been supportive, but she still doubted herself when friends and relatives started to get impatient a month after she fell ill. They were “telling me I’m a fit young woman, I shouldn't be on all those pills and just push through it and I'll be fine,” she said.

The first time she started to feel a little better Paula took their advice, and crashed almost instantly. “I pushed through it and I ended up in bed. For a week and a half, literally, without the energy to get out,” she said. She could barely muster the strength to go to the toilet.

In February, when Paula had an appointment at her local Long COVID clinic at Addenbrooke’s Hospital in Cambridge, she was ready for some guidance and support. Instead, she was told to exercise.

The idea that exercise is a useful treatment for people with chronic illnesses is not new. Chronic fatigue syndrome (ME/CFS), which like Long COVID is most prevalent in women, has historically been dismissed by medical professionals, often attributed to laziness or mental-health issues. A gradual increase in physical activity, known as graded exercise therapy (GET), was promoted as a cure, as was cognitive behavioural therapy. 

Sajid Javid, the Secretary of State for Health and Social Care, recently announced that the UK needed to overhaul its treatment of ME/CFS, after seeing what the condition did to a young relative of his.

The National Institute for Care Excellence (NICE), which outlines best practice for different conditions, used to recommend GET for ME/CFS patients but guidance, after a long review period, was updated in November 2021 to exclude GET. The guidance also notes that “some people with ME/CFS have found that [exercise programmes] can make their symptoms worse”.

According to Asad Khan, a pulmonary consultant living with Long COVID himself, “post-exertional malaise is now very well documented in Long COVID… and we have to learn from the history of other post-viral illnesses”.

GET is not mentioned in the Long COVID treatment guidance, which is limited, reflecting how new the condition is, but a spokesperson for NICE said that it “does not recommend either [cognitive behavioural therapy] or GET in the management of post-COVID-19 syndrome”, which is another name for Long COVID.

And yet, the idea that exercise is always beneficial remains prevalent in medical circles. Dr Clare Gerada, President of the Royal College of GPs, told BBC Breakfast in January 2021 that “There is nothing that isn’t made better through exercise… No matter what age, what condition, exercise will always improve it, but within moderation.”

Dr Khan disagrees. He believes that public health messaging about Long COVID should be promoting rest, rather than encouraging exercise. “If you overexert yourself then you’re going to induce PEM,” he told Byline Times, adding, “The more you keep exerting yourself and having PEM it will lower your baseline.”

Dangerous Expectations

Promoting exercise as a response to Long COVID is widespread in NHS treatment. This has been institutionalised through the ‘Your COVID Recovery’ programme, commissioned by NHS England and developed by University Hospitals Leicester, intended for patients recovering from severe illness after a stint in hospital, possibly on a ventilator. However, it is also recommended for “people with persisting symptoms due to COVID-19 but who didn’t require hospital admission.”

Your COVID Recovery was based on similar recovery plans for patients with heart and lung conditions and has been endorsed by a range of medical organisations, including the British Thoracic Society (BTS). A BTS spokesperson noted that NICE “considers careful self-pacing of exercise to be an important element of self-management”.

The website, which had been visited more than 1.5 million times by June last year, tells patients that “energy levels are helped by staying active”, and suggests going for a walk every day with the aim of building up to half an hour. It did not include any information about PEM until an update in January 2022. Now it tells patients with PEM to “aim to gradually build up your activity”, noting that “you may have some setbacks, but getting the right balance is important to avoid de-conditioning even further”.

Dr Khan supports exercise for COVID-19 patients coming out of hospital but describes the programme’s effect on people with Long COVID as “actually harmful”. Your COVID Recovery has a second phase, an app, accessible only with a password from a healthcare provider, which encourages users to exercise for a set amount of time on set days every week, regardless of any setbacks. “This is GET,” says Dr Khan.

NHS England, which owns the app, does not record how many people have been referred to it. However, exclusive Freedom of Information (FOI) data from 20 NHS trusts and clinical commissioning groups shows that at least 1,400 patients have been referred to it, though the actual number is likely much higher.

One trust, Gloucestershire Health and Care, disclosed that of the 107 patients it referred to the second phase of Your COVID Recovery in 2021, 33 never activated the app and no one completed the programme, though a handful has managed to finish the programme in 2022.

Emma, a clinical coder for the NHS living in Bristol, was prescribed the app by her local post-COVID service in early 2021. She was shocked to see that the programme was heavily geared towards increasing activity. There was no recognition of how unwell she was, while the low-intensity programme said that patients should “work towards 10 minutes walking” five times a week, with an emphasis to “make sure you follow the recommended times per week you should be walking”.

The only exclusion criteria listed for the app are that any users must be over 16, able to walk without mobility aids and should be able to stand up and sit down continuously for one minute, but sometimes even these rules are not followed. Emma was put on the programme despite being unable to complete the sit-to-stand test, and using crutches to walk.

“Every time I looked at it I just got so anxious and upset,” said Emma. “I was thinking, ‘How can I do this? Is this safe for me to do?’”

She knew about PEM, and had mentioned to the clinic that she was suffering from it, but being told by healthcare providers that she should be trying to exercise had her questioning her convictions. 

She worried, “If I don’t try it am I just going, ‘Well, I want to stay sick? Because maybe it does work for some people.’” Ultimately, Emma decided trying the programme wasn’t worth the risk, but the pressure to do something she knew would be damaging to her health was distressing.

Knowing Your Limits

Dr Deepti Gurdasani, an epidemiologist and senior lecturer at Queen Mary, University of London, believes it is important to take Long COVID patients seriously about their limits. “If you are disabled with PEM you know how far you can go before you get wiped out,” she said. 

“Clinicians need to be aware that this is a really traumatised patient population that has been constantly gaslit and I believe it’s so very, very important not to perpetuate that.”

Some people with Long COVID struggle to accept that exercise is likely to hurt rather than help them.

Dave is a lecturer at the University of Leicester. Fitness is a huge part of his life, in part because he is trying to stave off the heart disease that runs in his family. Before coming down with COVID he could ride 50 miles across the Peak District on his bike without too much trouble. When he caught the virus in January 2021, he was keen to get back to fitness as soon as he could.

His referral to the local post-COVID clinic was taking months so Dave self-referred to a free COVID-19 rehabilitation programme run by the charity Nuffield Health. The programme lasts 12 weeks – six weeks over Zoom and six weeks at a Nuffield Health facility – and users are meant to build up their fitness over the course of the programme.

Like Your COVID Recovery, the Nuffield Health rehabilitation programme was created with patients coming out of hospital in mind, but has since expanded to include Long COVID patients who were never hospitalised. In September 2021, there were 900 people taking part in the programme and 1,600 waiting to start. It is integrated into NHS Long COVID services in Manchester, and other NHS trusts refer to it, but most patients self-refer.

The programme operates on the assumption that people with Long COVID can “grow the energy envelope” through exercise. Senior rehabilitation therapist Jon Taberner, one of the programme leaders, said that Nuffield are “really careful with our exercise programming”.

There are easier and harder versions of each exercise. For example, the easiest version of a squat might be standing and sitting, while a harder version will be a deep squat. “It’s very much case by case,” said John, “which is why we demonstrate all of those progressions and regressions in every single session, and we really do reinforce which exercises each individual should be doing.”

The programme also has stricter exclusion criteria than Your COVID Recovery, precluding anyone with an ME/CFS diagnosis from taking part, but Nuffield does work with people suffering from PEM. “We give them the understanding of what they are currently dealing with and knowing where that threshold is for them,” said Jon.

Sadly, this was not Dave’s experience. Things started off well. The instructor gave general warnings that they shouldn’t push themselves too hard, but Dave didn’t think he was overdoing it. “I got into about week eight, I think, and I actually felt fantastic,” he said. He was back to working out most nights, and could feel his muscles starting to respond. That weekend he decided to go on a bike ride. “I was out for two hours,” he said, “just going really careful, really steady. I did about 18 miles. And then I never recovered.”

Before his next session, Dave collapsed at work because of an elevated heart rate. He was taken to hospital but discharged once his heart rate returned to normal.

Dave finished the programme but was exhausted after every session for the final four weeks. Reflecting on the sessions, he doesn’t think his trainers did enough to reel in his instincts. “There are no checks and balances, that’s my criticism,” he said. “There’s no one seeing what you’re doing and saying, ‘I think you’re overdoing it.’”

Dave is still exercising but he’s doing less than before he started the Nuffield programme. He is now doing pulmonary rehab with NHS services and has been referred for a diagnosis of ME/CFS, which would have precluded him from taking part in the Nuffield programme.

For Dave, accepting that he would have to limit his exercise was a “massively difficult decision”, but one he has finally managed to accept. 

The conclusion he ultimately reached was, “The advice that what you should do is a little bit more exercise… It doesn’t work, does it?”

OUR JOURNALISM RELIES ON YOU

Byline Times is funded by its subscribers. Receive our monthly print edition and help to support fearless, independent journalism.