CLINICIANS TREATING PATIENTS with Long Covid are facing a significant challenge when trying to address the debilitating fatigue that some are left with for months after their initial infection.
It is estimated that up to 20% of people who test positive for Covid-19 may experience longer-term symptoms ranging from weeks to months after their infection. Over 200 symptoms associated with Long Covid have been identified, but the most common are fatigue, respiratory and cardiac symptoms, neurological symptoms, muscular and joint pain and digestive symptoms.
The ‘invisible’ symptoms of Long Covid, such as fatigue and brain fog, can be the most frustrating, one patient told The Journal.
More than a year-and-a-half after he first contracted Covid-19 George*, who is a healthcare worker, continues to struggle with breathlessness requiring an inhaler, has to take heart medication to keep palpitations at bay and finds even simple tasks exhausting.
He said he believes he contracted Covid at work as a number of colleagues also tested positive around the same time.
“My wife reckons I was sick enough that I should have been hospitalised, but at the time the hospitals were snowed under, we had thousands of cases a day and I made a call on it and decided I wasn’t going to hospital, I was aware they were really under pressure,” he said.
“I had very bad breathlessness, it was really hard to catch my breath, I was coughing, I had really bad headaches, a pain in the back of my lungs, aches everywhere and my heart rate was going up just sitting on the couch.”
In the months that followed, George said his symptoms were not improving at the rate he was expecting and he found his energy levels remained low. He has been unable to return to work as a result of his symptoms.
“This morning, I’m still in bed now at 11am and I went to bed at 10pm last night,” he explained.
I’m not sleeping well, I have terrible fatigue and I’m still quite breathless at times. I get fierce pains in the back of my lungs as well. The lack of energy and the fatigue is unbelievable though, it’s the most frustrating part. I used to easily do 8,000 to 12,000 steps a day and now I’d be lucky to get 3,500 in. It’s not just affecting me but those around me as well, I’ve no energy to go down and work in the garden or tidy and help around the house the way I should do.
George was referred by his GP to a respiratory consultant for his breathing difficulties and to a physiotherapist, but he said his treatment has had little impact on his fatigue or the brain fog he experiences.
“That’s the hidden part of the illness, people would say to you that you look great and because of the brain fog I can’t even properly explain the tiredness,” he said.
“It’s exhausting. Last month I was in the shop and I met a mate of mine who I’ve known for 22 years. I was talking to him and I said to him that I knew his wife’s name and that he had two kids, where he lives and works but I couldn’t remember his first name.
“It was so bloody embarrassing, it’s just frustrating because I was always someone who was so on the ball, like in my work as well and I just wouldn’t trust myself now. It’s not a very nice place to be in.”
At a recent Oireachtas Health Committee session, infectious disease consultant at the Mater Hospital, Professor Jack Lambert said some patients are being accused of exaggerating their illness.
Lambert said that brain scans of people with long Covid show they have brain inflammation among other symptoms and that there should be a greater focus on this and on the chronic fatigue many suffer from.
“There should be an educational campaign for employers, occupational health doctors, businesses, to support these patients because they are not making up the problem,” he said.
Treatment pathway
While clinicians specialising in this area have learned a lot over the last year about the myriad of symptoms that can present post-Covid, they are facing a significant challenge in treating fatigue in particular.
Professor Seamus Linnane, consultant in respiratory medicine at the private Beacon Hospital in Dublin, has been working at the first Long Covid clinic in the country for more than a year and has seen hundreds of patients.
Fatigue is the most common symptom among his patients, with 90% presenting with this symptom.
“With something like fatigue, if someone has muscle pain that adds to it, if they’re not sleeping that adds to it, if they’re struggling with brain fog that adds to it too so it’s an incredibly challenging symptom to manage,” he said.
“It has multiple different causes, we don’t see fatigue or brain fog as purely neurological phenomena, it can be psychological, it can be inflammatory and so we have to try to work out what the most relevant approach is for each person.”
The treatment involves various different therapies including psychotherapy, physiotherapy and occupational therapy.
However he said clinicians need to be careful in the way they approach physical therapies and a return to exercise. He referenced the international evidence on the potential negative impacts of exercise therapy programmes for Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) patients.
Last year the UK’s health watchdog issued fresh recommendations, including that programmes based on fixed incremental increases in exercise should not be offered as they may worsen symptoms.
Professor Linnane said that while exercise is important and doctors are keen to encourage patients to increase their activity levels over the course of their treatment programme, it is important to ensure this approach does not “aggravate symptoms”.
There is something that’s known as post-exertional malaise, a person can end up feeling in worse health after a task and that can last for days if the person has overdone it. That’s counterproductive. There is a certain level of trial and error and a variability because someone might be a 9/10 when they come in one day and a 6/10 when they come another day and it’s important not to push them too hard on the 6/10 day.
At the Beacon’s Long Covid clinic there are three consultants, all with a respiratory medicine base, but also with a dual accreditation in general medicine.
Professor Linnane said this knowledge of general medicine has been helpful because of the diverse range of symptoms and organs impacted by the disease.
“Having someone who can take an overall look has meant greater efficient, better use of the hospital’s resources and because it’s a private clinic that reduces the cost to the patient also, which is important.
“Because we’re more familiar now with the syndrome, we’ve found that we can be more targeted in our investigations than we were before so we have made progress over the past year.”
He pointed to a number of drug trials that are starting and said this is welcome as currently clinicians are heavily on non-pharmaceutical rehabilitative treatments for some of the most common symptoms.
Public clinics
In response to a query from The Journal, the HSE said it is currently examining how it can model the possible numbers affected by Long Covid.
An epidemiological survey is being planned and the HSE said this will be key to understanding risk factors for developing Long Covid and demand for future Long Covid services.
Public Long Covid clinics currently in operation include St Vincent’s University Hospital, Beaumont Hospital and University Hospital Galway. There are also Post-Acute Covid Clinics at University Hospital Galway and Connolly Hospital Blanchardstown. Both Tallaght University Hospital and St James’s University are operating combined Post-Acute and Long Covid clinics.
The HSE said it is working closely with each of these hospital sites to expand the existing clinics to provide a full scope of care.
“Provision of new and additional resources to these clinics will ensure all services are operating to the same high standard of care. Recruitment has commenced at all sites,” it said.
The HSE said it acknowledges that services may need to be adapted in response to emerging evidence, learnings from the initial phases of implementation and current and projected demand for Long Covid services. HIQA is currently completing an evidence review of Long Covid and approaches to treatment.
“The HSE wishes to advise that as part of the Model of Care, there will be access to a tertiary neurocognitive clinical located at St James’s Hospital,” it added.
“This will be a specialist services for patients who are continuing to experience persistent neurological symptoms.”
*The patient interviewed for this article did not wish to be named but The Journal is aware of his identity.
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