(CNN) — Professional diver Emiliano Pescarolo contracted coronavirus in March and spent 17 days in hospital in the Italian port city of Genoa before being discharged on April 10.
Now, three months later, the 42-year-old still experiences breathing difficulties. “Once back home, even after weeks I couldn’t see any progress: if I took a small walk, it was like climbing Mount Everest. I was out of breath also just for talking. I was very worried,” he said.
Pescarolo is one of dozens of former Covid patients now receiving care at a rehabilitation clinic in Genoa — and says he is starting to see some progress.
For much of Europe, the peak of Covid-19 infections has passed. But while hospitals are no longer awash with acute cases, there are thousands of people who had either confirmed or suspected Covid and, weeks or months later, say they are far from fully recovered.
In the United Kingdom, communities of “long Covid” sufferers have spring up online, as people try to manage what appear to be long-term effects of a virus about which much remains unknown.
Meanwhile, health authorities in the UK and Italy, two of the European nations worst hit by the coronavirus pandemic, are starting to offer rehabilitation services to Covid-19 survivors.
These will likely need to be wide-ranging, since research now indicates that coronavirus is a multi-system disease that can damage not only the lungs, but the kidneys, liver, heart, brain and nervous system, skin and gastrointestinal tract.
Dr Piero Clavario, director of the post-Covid rehab institute attended by Pescarolo in Genoa, said his team had started contacting several hundred Covid-survivors treated by hospitals in the district in May. Of those, they have now visited more than 50.
“They are not only those that were in ICU and intubated because of Covid, but also patients that spent not more than three days in the hospitals and then went home,” he said. “We investigate aspects that escape standard virological and pulmonary exams.”
Of the 55 people visited by his team, eight needed no follow-up support and had no complications, Clavario said. “Fifty percent have psychological problems, 15% PTSD (post traumatic stress disorder).”
Each patient is given two half-day evaluations involving multiple tests by a team of doctors, cardiologists, neurologists, psychologists and physicians, Clavario said.
“What surprises me the most is that even the patients that have not spent any time in the ICU are extremely feeble: there is no evidence of a cardiological or pulmonary problem, but they are not even able to walk up a flight of stairs,” he said. “Most show a serious muscle weakness. A 52-year-old nurse had to go back to work after having recovered from Covid, but she just couldn’t physically make it.
“The positive thing is that, after a period of exercise in our gym, most of them can recover efficiently.”
Pescarolo, who needed extra oxygen while in Genoa’s Voltri hospital but was not intubated or admitted to the ICU, was happy to join the center’s program.
“It was nice to know that I wasn’t alone in experiencing such consequences of the disease. My rehab consists mainly in carrying out regular physical exercise in the center’s gym, every time increasing a bit the load and intensity of the exercises. And after a month and a half I feel better. I hope in mid-August to be able to return to work,” he said.
“I am a commercial diver, so I need to be fit, for my body, for my lungs, I cannot go under water with any kind of pain, any kind of problem.”
Despite his physical progress, Pescarolo said he had trouble concentrating and was still very concerned about his cognitive powers, “especially short-term memory, I don’t remember simple things.”
He said he had noticed similar problems in other former Covid patients. “I don’t know why. Maybe it’s an ugly gift that this virus gives us.”
Pescarolo’s concerns will sound all too familiar to many Covid and suspected Covid sufferers in the UK.
More than 8,500 people in the country have joined a Long Covid Support Group on Facebook since it was set up by Covid sufferers in May, calling for rehab, research and recognition.
Another group, LongCovidSOS, is also campaigning for the government to recognize the needs of “long-haul” Covid sufferers and ensure they are not discriminated against by employers.
While some people were treated in hospital, others struggled through their illness at home. Many are not formally confirmed as having had Covid-19 despite their symptoms. In some cases, they were unable to get a test because of a lack of capacity in the early weeks of the virus’ rampage through the UK, even for frontline health care workers. Others had a test but it came back negative.
Claudia de Freitas, a 34-year-old senior intensive care nurse in London, is part of the LongCovidSOS community. Speaking to CNN from her home in Reigate, south of London, she said she had negative swab tests for the virus but had a positive test for antibodies on July 7.
De Freitas fell ill in mid-March, with a cough, occasional fever, breathing difficulties, chest pains and the loss of her sense of smell. After a few days, her chest pains became so severe and heart rate so uneven that she thought she was about to have a cardiac arrest and her husband, himself a doctor, took her to the emergency department, she said.
Doctors there did a chest X-ray and and blood tests, but everything came back normal, including her oxygen levels, she said. After her second trip, she was told her X-ray showed pneumonia and her doctor said she had suspected Covid-19. However, she was only advised to go home, rest and take painkillers.
“It’s difficult but I feel that the people that are going through this now… I think there would be more help,” she said. “Now the GPs would think, okay, let’s try and do more investigations.”
Margaret O’Hara, who works in a research department for a hospital in the English Midlands, is one of the administrators for the Long Covid Support Group. She, like many others, has not had a positive test but her physician has put suspected covid on her formal sick notes for work.
When she fell ill at the end of March, “it hit me like a bus,” said O’Hara. She had a cough, breathlessness and fatigue that kept her “flat out” in bed for two weeks. “If it wasn’t in the middle of a pandemic, I would have been down at the hospital because I couldn’t breathe properly,” she said. However, mindful of NHS messaging that people should avoid seeking hospital care unless absolutely necessary, she stayed home.
Eventually, three weeks in, her physician sent her to the emergency department because she was struggling to breathe — but a chest X-ray detected nothing and there were no infection markers, she said.
It was week eight before she had her first day without coughing, said O’Hara, 50, who lives with her husband and 10-year-old daughter in Birmingham, in central England. She managed a half-mile walk that day — and the next day was coughing again. Another trip to the emergency department followed in early July after her health worsened again.
“Now I feel I am back where I was in week four or five. I can’t walk any distance,” said O’Hara, who says that before her illness was fit and well with no underlying medical conditions. She remains off work and is awaiting an appointment with a lung specialist.
Like Pescarolo, O’Hara has noticed her mind seems less sharp. “I have brain fog, I can’t function. I have a PhD in physics and I can’t put two thoughts together,” she said.
However, as an administrator on the Long Covid Support Group, she is aware that she is fortunate in having a supportive family and employer.
“There are a lot of people who are in limbo because they didn’t get a test back in March or had a test that came back with a false negative and a lot of people are having problems with their employers telling them they have to come back to work,” she said.
“I think they have this simplistic idea that if you weren’t in hospital you must have had it mildly and will get better but it’s wrong, it’s patently false, because there’s a whole group of people like myself,” she said.
She is also concerned that research into the long-term effects of the illness is focused on those who were hospitalized. “Nobody’s asking us who were not in hospital — we are just left out of the system,” she said. “That’s a real issue.”
‘I’m like an 80-year-old’
Grace Dolman, a 39-year-old doctor at Addenbrooke’s Hospital, in Cambridge, also fell ill in March. She, too, stayed home struggling with a cough and breathing difficulties but in hindsight says she should have gone to hospital.
“I muddled along with breathlessness, kept thinking ‘next week I’ll be better,” she said. Five weeks on, in mid-April, she went to the hospital for a chest X-ray but her swab test for the virus came back negative.
“My breathing has got better. I had really bad brain fog, my memory was really bad, I couldn’t concentrate, I was really emotional and really, really tired and fatigued, I couldn’t do anything,” she said. “Even now, on week 17, I am still not able to work, can only manage two hours of activity and I have to lie down.”
Dolman says she also suffers muscle aches and an odd tingling in her hands and the soles of her feet.
“I’m like an 80-year-old, basically. I have to do a little bit and then stop, a little bit more and then stop.”
As a medical professional, Dolman is concerned that there may be many people suffering from the long-term effects of Covid-19 who are not being listened to and may not get the individually tailored support they need, if any.
“There’s not a one-size-fits-all approach to this, and people have different symptoms and different needs and will need different support,” she said.
“I think there’s a danger of lumping everyone together and saying they have these symptoms — and then they are brushed off with ‘you’ve got long-haul Covid and it will get better.'”
‘Pretty debilitating’ effects
UK Health Secretary Matt Hancock, who himself contracted Covid-19 in March, acknowledged the scale of the problem Wednesday when he told Sky News there was “increasing evidence a minority of people — but a significant minority — have long-term impacts” from the disease which can be “pretty debilitating.”
“It’s really important we support people who are in that situation and, also, that we do the research to find out what we can do about it,” he said.
Earlier this month, Hancock announced a major study into the long-term health effects of Covid-19 on patients who were hospitalized. The study, known as PHOSP-COVID, aims to track 10,000 people over the next 12 months or longer.
The UK’s National Health Service also plans to set up an online platform to support Covid sufferers in their recovery and, in late May, opened a new rehabilitation center in southern England, the NHS Seacole Centre in Surrey, to help those most seriously affected. Other hospitals are also starting to offer rehabilitation services.
The leader of the PHOSP-COVID study, Professor Chris Brightling, Professor of Respiratory Medicine at the University of Leicester, told CNN the study was the biggest of its kind that he was aware of globally.
“What we really want to understand is after they’ve been discharged from hospital with Covid-19, what’s the consequences,” he said. The great thing would be that there have been none, but it’s highly likely that there would be a number of problems, which could range from chronic fatigue, muscle and headache, poor exercise tolerance, breathlessness, amongst many others.
“It’s trying to understand the scale of that burden, what’s the severity of it and what can we do about it.”
The 10,000 individuals invited to take part in the trial will be asked to fill out detailed questionnaires, undergo blood and other tests, be monitored doing exercise and have imaging done on their lungs and other organs, he said. “Obviously we would be looking over time as well, so it would be far more comprehensive than studies that have been done thus far.”
Brightling said the study was focused on confirmed Covid-19 cases who were hospitalized because in the early days of the UK outbreak, testing was almost exclusively carried out in hospitals. “This means we have a cohort of people where we know with certainty they have had the infection,” he said. They are also those considered “most likely to have severe long-term consequences of the disease,” he said, and so will give some idea of the magnitude and severity of those consequences.
In some people, these may be severe enough that they need long-term management in hospital, he said. But even in less severe cases, “it’s going to impact their ability to work, certainly to work in the way that they did before, it will affect their relationships, it will affect people who care for them, where their roles are going to have to change, where there was previously someone who was fit and well and now has a chronic condition.”
“We don’t know how big this burden of care will be and that’s why this study is going to be so important.”
Brightling also acknowledged the frustrations of those who have no formal diagnosis and were not treated in hospital, yet had what appear to be Covid-19 symptoms and continue to suffer long-term health problems.
“In the community, some people have symptoms consistent with Covid-19 and the swab test is not sensitive in all of those people, so there are instances where people can have a negative swab and yet have Covid-19 and have persistent symptoms,” he said.
“We’re focusing very much on those who have been hospitalized in order to really fully understand this disease, but we’re going to need to extend those findings, and others will need to study the burden in the community, including those where there is certainty about the diagnosis.”
‘Only the tip of the iceberg’
Dr. Paul Whitaker, a consultant respiratory physician for hospitals in Bradford, northern England, decided to set up a clinic for post-Covid patients after treating acute patients on the wards at the height of the UK outbreak.
When it opened, a month ago, he anticipated seeing lots of people with lung problems. But, he told CNN, it quickly became clear that the clinic, based at St. Luke’s Hospital in the city, needed a wider focus.
“We’ve seen some respiratory conditions coming through, some patients with pulmonary fibrosis, or scarring on the lungs, some that have come back with collapsed lungs, but these patients have been relatively few,” he said.
“But what we have actually seen most of the time is people who are getting a lot more chronic symptoms, low level, never enough to send them to hospital, but they are often struggling with fatigue, chronic breathlessness, palpitations and fast heart rate, poor sleep, headaches, poor concentration,” he said.
His team now also includes specialists in chronic fatigue, a dietician and a psychologist, Whitaker said. Patients who come to the clinic are assessed for physical and cognitive problems and physiotherapists help with rehab programs.
“Originally we planned to follow up with patients who we thought had the most severe disease — those are the patients who ended up in intensive care or needing ventilation on a normal ward,” he said. “But very quickly we realized that was only the tip of the iceberg in terms of patients we needed to see and a lot of patients never actually presented to hospital in the first place.”
The clinic, which serves the Bradford area and will be taking part in the large-scale study run by Brightling, has now opened its doors to GP referrals and even self-referrals, he said. “Basically, we just started accepting all-comers and are going to start seeing everybody,” he said.
“There’s a kind of label of ‘Covid long-haulers’ who are still suffering certainly beyond three months. We are going to start seeing them.”
Those Whitaker is seeing at the clinic are often much younger than people who were admitted to hospital with acute Covid infections, who tended to be in their 60s, 70s and 80s, he said. “You almost get the impression that the younger, fitter individuals seem to be a bit more susceptible to long-term effects,” he said, while acknowledging that it is early days in terms of collecting data.
He wants his clinic to focus on helping those with chronic conditions and fatigue with personalized plans, “just so people don’t feel like they are abandoned,” he said. “At the moment we are getting letters from all over the place from people saying ‘please see me, I don’t know where to turn to.'”
Pescarolo, the diver in Genoa, urged those who, like him, continue to suffer the effects of Covid-19 not to lose hope of regaining a normal life.
“Don’t give up,” he said. “It takes about four to six months for rehab, in a case like mine. Maybe for people who had bigger problems than mine it will take more time, but they (shouldn’t) give up.”
This story was first published on CNN.com, “Brain fog, fatigue, breathlessness. Long-term symptoms linger on for many coronavirus victims.”