Long and short of it

Patients who are still suffering symptoms months after a positive test tell Catherine Smyth how they are coping with so-called Long Covid

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The spectre of Covid-19 will not just be the horrendous death tolls recorded around the world, but the tens of thousands of hidden patients, those not deemed ill enough to need an acute bed, who were left to deal with the illness in isolation. Months later, many are still suffering symptoms and calling for research.

“We had genuine worries that one of us might not wake up when we went to bed.”

At the start of the lockdown, the government message was clear: Stay Home – Protect the NHS – Save Lives. Anyone reporting Covid-19 symptoms to their GP was told not to turn up at the surgery and there were no tests. They stopped on 12 March, so instead infected people were told to, wherever possible, get someone to buy them over-the-counter medicine, self-isolate and “heal thyself”. No diagnosis.

As thousands were deemed to have contracted a moderate or milder form of Covid-19, they did not register in the statistics. To this day, many still have underlying symptoms that have presented themselves for more than 100 days.

Death or recovery are not the only outcomes. This new illness is dubbed Long Covid and patients describe themselves as “long haulers”. They suffer from a debilitating and varied set of symptoms including shortness of breath, brain fog, vertigo and stomach problems that leave them struggling to do simple tasks. It affects every part of their lives. Many are no longer able to work.

Sufferers are not the only ones asking questions. In July Nottingham MP Alex Norris asked the health secretary Matt Hancock for statistics for people suffering Covid-19 symptoms for longer than three weeks after a significant number had reported they had a persistent and recurring illness. Health minister Jo Churchill responded that Public Health England had not made any such assessment.

Andrew Gwynne, MP for Denton and Reddish, had his Long Covid battle documented in the local and regional press. He also submitted a written question to Hancock asking “what estimate his department has made of the number of people experiencing long-term effects of Covid-19”. An answer has not yet been provided.

Caroline Eccles, 41, and her partner David Pownall, 40, who run Huckleberry Films in Waterfoot, Lancashire, both contracted the virus in March. They thought they would just “get it out of the way” and, being younger and physically fit, did not consider there would be any lasting problems.

Eccles said: “The first proper symptoms started on 20 March with fatigue – not the sort like you get when you’ve had a long day. Instead this was totally incapacitating tiredness which even lying in bed didn’t seem to help with. An early night didn’t bring fresh energy the next day. And it just got worse from there.

“Shortness of breath followed soon after, with heart issues, tachycardia and palpitations following not long later. There were a few weeks where drawing breath was difficult, and we had genuine worries that one of us might not wake up when we went to bed. I called 111 but as our symptoms weren’t typical, we were pretty much brushed off and told to just stay at home.”

A GP call led to antibiotics being prescribed, but they didn’t help. At one stage she called 999 when her partner was struggling to breathe. When paramedics arrived, they treated his symptoms at home.

From previously doing 10,000 steps a day Eccles struggled to climb the stairs and Pownall, a hill runner, is uncertain if he will ever be fit enough to walk the fells, let alone run them. They are both now more than four months into the condition with no signs of returning to their normal.

Eccles joined the 12,900-member Body Politic Slack – Covid-19 support group and discovered an online Facebook group of 14,000 people who were also experiencing the Long Covid long haul. To help the UK thread of the group campaign to raise awareness, the couple used their filmmaking skills to create a film entitled Message in a Bottle, which Eccles narrated, and features photos of long haulers with placards listing their age, symptoms and how long they have been suffering.

It is on YouTube and Twitter and has been seen internationally by more than 53,000 people and screened by ITV national news and on a TV channel in Australia. It is calling for rehabilitation, research and recognition of the condition.

Eccles said: “We know about the people who are ill for just a couple of weeks, and we know about the very sick people who sadly die… but there’s thousands of us in the middle group, struggling for weeks and months and not knowing when or if we’ll be able to ever return to our before lives. As the weeks go by there are gradual improvements, but they aren’t linear, and there’s a lot of relapses, where it feels like one step forward and two steps back.

“I don’t know if my heart or lungs are permanently damaged or if I’ll make a full recovery, but I’m really hoping so. In the support groups I’m in none of us really know what the long-term impact might be. We don’t know if we can get re-infected, or if we have immunity from getting so ill again.”

A Facebook Long Covid Support Group has 8,500 members who have shared similar stories.

Frances Simpson, from North Yorkshire, became ill on 11 March. Then her partner and her five-year-old son took ill and before the end of the month her nine-year-old daughter was also poorly.

Although her son, who also has epilepsy and is under a paediatrician, initially improved, he then developed blotchy skin on his face and a range of symptoms including tiredness, stomach pain, blurry vision, nausea and nightmares.

Her daughter spent six weeks going from bed to couch. She was tired, dizzy, nauseous, stopped eating and complained of earache and a sore throat. By the time she saw a paediatrician in June she had 23 different symptoms.

Simpson, who also participated in Message in a Bottle, said: “Both paediatricians have written on their letters that the children had possibly had Covid-19. The GP doctors I have spoken to have all agreed that I have had Covid-19 and so have the children.

“It has been a relentless rollercoaster of uncertainty and worry, not knowing what will come next, why we are not getting better and what the long-term effects will be. All this during a time of unprecedented isolation, without the usual support structures of family and friends, and with doctors who know less about this than we do.

“It has been very frightening at times, and I have had to learn to tolerate the ongoing health problems of my children, my partner and myself without betraying the extent of my true feelings.”

In July, the NHS announced the Your Covid Recovery service, which would expand rehabilitation treatment for people who have survived the virus but have outstanding issues. A spokesman for NHS England said the online and telephone service would be available “later this summer” and confirmed it would be for patients who had been in hospital with Covid-19 and who required further services to aid their recovery and for community patients if GPs felt they had long-standing coronavirus symptoms.

Asked whether research was being done to assess the numbers of people who are Long Covid and still suffering symptoms, the spokesman said the National Institute for Care and Health Excellence (NICE) was beginning to do research and more information was expected in the autumn.

He said there was no data regarding the number of Covid-19 in-patients who recovered but were still suffering symptoms post-release from hospital.

In May, NHS Seacole Centre at Headley Court, Surrey, opened with 130 beds to support former in-patients recovering from Covid-19 who no longer needed acute hospital beds, but were not able to cope with their symptoms at home. It had capacity for 300 patients, but it was only for in-patients, not those who had never been admitted to hospital. No information has been provided about how many patients have used the centre.

A partner in the Surgery, a Haslingden GP practice, Dr Abdul Mannan said: “We are all learning, in the community, in the primary care sector and even the experts – it is all new to us.

“We had a younger patient in our practice who came to us at the start of the year with symptoms we could not diagnose. This was just prior to Covid-19. The patient presented with tiredness, joint pain and psychological problems, feeling down, and so we tested for fibromyalgia.

“We thought it might be clots on the lungs, then ME or a viral infection, but all the tests came back negative. We did everything to try to find out what was going on and even tested for Lyme disease. For the patient, I can only imagine how frustrating, upsetting and emotional it was. They had a test for antibodies for Covid-19 and it came back negative. They then attended a testing station with a cough and cold. Again it came back negative.

“Then in May, GPs were able to do anti-body testing and the patient tested positive; the cause of the symptoms was Covid-19 and they had post-viral syndrome.”

Dr Nisreen Alwan, a public health doctor at Southampton University and epidemiologist, who has been struggling with Covid-19 symptoms since March and wrote an opinion piece in the British Medical Journal, told Big Issue North she is grateful she has not suffered as badly as others but is still not back to normal. “The government needs to review how it communicates to the public about Covid-19. The focus has just been on deaths and infection rates.

“Nobody is measuring how many people have had the virus but were not tested so are not in the statistics, and how those people are now. Some people are still very ill. We don’t know how big the problem is.”


At some length

The BMJ reported a Dutch survey of more than 1,600 Covid-19 patients, 91 per cent of whom were not hospitalised. Eighty-five per cent described their health as good before the infection. Eighty-eight per cent reported fatigue, three-quarters suffered from shortness of breath, almost half felt chest pressure, 40 per cent had headaches, more than a third reported muscle pain and one in three had palpitations. The symptoms lasted for months after initial infection. Nearly half of those surveyed said they were no longer able to exercise.

A study in Italy, documented in the Journal of the American Medical Association (JAMA), found that almost nine in 10 in-patients who had recovered from Covid-19 reported at least one symptom was still affecting their lives, particularly fatigue and shortness of breath. Of those reporting symptoms a third had one or two symptoms and more than half had three or more.

Also reported in JAMA were tests on 100 patients in Germany who had recently recovered from Covid-19. Seventy-eight had ongoing myocardial (heart)inflammation, and 60 of those patients had no pre-existing conditions.

Main image: Caroline Eccles and David Pownall have both suffered with Covid symptoms since March

Interact: Responses to Long and short of it

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