Analysis: there could be over 170,000 people living with Long Covid in Ireland, but it remains an under-recognised condition
Although Covid-19 is no longer considered a public health emergency, there are thousands of people still experiencing the aftermath of infection. It's difficult to get a full picture of the impact Long Covid, but well over 100,000 people are estimated to be living with the complex condition in Ireland. So what do we know?
A 2022 study by APC Microbiome Ireland at UCC found almost 90% of those living with Long Covid in Ireland have not returned to their pre-Covid level of health. Participants also reported suffering from new symptoms that had not been present before they had Covid-19, including tinnitus (38%), mouth ulcers (28%), new allergies (16%) and sexual dysfunction (13%). In addition to this, Nearly 40% of people said they were "severely limited" in their ability to work, while 60% of respondents had missed workdays at some stage due to their Long Covid symptoms. In addition, 16% of participants said they were unable to work at the time of the survey and were receiving social welfare supports.
According to WHO, long-covid "remains a complex condition we still know very little about" and "unless we develop comprehensive diagnostics and treatment for long Covid, we will never truly recover from the pandemic," WHO Regional Director for Europe Hans Kluge said, calling it an under-recognised condition. In Ireland, there have also been calls for Long Covid to be designated an occupational illness.
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From RTÉ Radio 1's, HIQA publishes report of the international literature on long Covid
How many people have Long Covid in Ireland? What's the data?
The short answer is we don’t have much data on Long Covid in Ireland, says Professor of Immunology Christine Loscher, Assistant Dean for Research in the Faculty of Science & Health at DCU. Research and studies from the UK and other countries show around one in ten (10%) people who are infected with Covid-19 go on to develop Long Covid. We’ve had just over 1,7 million recorded infections in Ireland so far, meaning there could be at least 170,000 people in Ireland with Long Covid.
"Some of those case numbers are reoccurring infections in the same individual, so it’s hard to gauge. We have a guesstimate, but no hard facts. So I think we really don't know where we are at with Long Covid in Ireland," she says. Earlier this year the HSE began a study of Long Covid in Ireland to better understand how it's impacting people here.
What symptoms are prevalent with Long Covid?
Long Covid is defined by WHO as symptoms that persist three months after Covid-19 infection, for at least two or more months, and where the symptoms can’t be explained by any other diagnosis. "There's a very wide set of types of symptoms and that list seems to grow as time goes on," says Loscher.
The list includes respiratory symptoms, cardiovascular symptoms, neurological symptoms and psychological symptoms, like shortness of breath, fatigue, brain fog, sleep issues, memory loss, tinnitus, loss of taste and smell, depression, anxiety, PTSD, and more recently, gastrointestinal symptoms like abdominal pain, nausea and vomiting, as well as muscular skeletal symptoms, including joint and muscle pain.
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"While we know that risks of severe infection were associated with things like age, underlying co-morbidities, and people who are immunosuppressed, there doesn't seem to be very clear evidence emerging at all from the literature or research about the risk of Long Covid," says Loscher. "Pretty much anything that you could possibly imagine somebody having, can actually potentially be as a result of them having had Covid-19." While we know that the risk is lower in people who are vaccinated and boosted, there’s no "set of criteria" that would predict if someone will get Long Covid, she says.
Can you be tested for Long Covid?
There’s no one test for Long Covid, but you can be tested for certain biomarkers.
Is there support for people with Long Covid in Ireland?
Minister for Health Stephen Donnelly said in April that the HSE is implementing a plan to provide Long Covid services nationally and that investment in the service has been increased to €6.6m in 2023. "It's a drop in the ocean in terms of what we need, given the potential number we're dealing with. And we don't know how long we're going to be dealing with these patients for. But that said, there a system at least set up that GPs can refer into," Loscher says.
There are six HSE Long Covid clinics located at Beaumont, St James, St Vincent’s, Cork University, University Hospital Limerick and University Hospital Galway, as well as eight Post-Acute clinics in Ireland, for those experiencing symptoms beyond four weeks and for up to 12 weeks.
"The one thing that sticks out is the wait time for people to be able to get access to the multidisciplinary team that the hubs offer. And that is a key piece of the support that needs to be in place for people with Long Covid," she says. "If you take that 6.6 million that was set aside for Long Covid, if you divide that between 170,000 people it's a very small number. It's not going to cover the care that each of those people needs. So we need to increase the resources available and probably deal with this better than we're dealing with it now."
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What’s causing Long Covid?
We still don't know exactly what causes Long Covid in people, but there are a number of studies showing the different factors driving the symptoms of Long Covid and the risks associated with it. Loscher highlights a study of over 100,000 American veterans which found people with covid were at an increased risk of stroke and other heart disease post-infection. Previous studies, including one from the RCSI, have also shown a link between "micro clots" in the blood and Long Covid, which "highlights the interaction between the immune system and the vascular system," says Loscher. Another study has found that the effects of Long Covid on fatigue and quality of life are comparable to some cancers.
Patients with Long Covid have also shown underlying issues of chronic inflammation in the body. "Eight and 12 months post-covid, some patients with Long Covid have elevated levels of what we call cytokines, which are proteins produced by your immune system when it’s under attack. The immune system is still making those proteins, which is driving this chronic inflammation."
And inflammation might explain a lot about Long Covid. "What we know about inflammation from decades of research, is inflammation is a key driver of lots of different diseases: neurological, cardiovascular, diabetes, metabolic disorders, muscle and joint pain, gastrointestinal disorders. Inflammation can be a key driver of all of those, so it's not surprising if inflammation is at the core of Long Covid."
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Loscher says neuroinflammation (inflammation in the brain) has also been seen in people with cognitive decline post-covid and this could possibly be what’s causing some of the neurological disorders. "The inflammatory profile or the immune profile of a patient with Long Covid, versus somebody who recovered from covid very well, are very, very different. They look like two different immune profiles," she says.
More and more studies are also coming out around viral persistence in people with Long Covid: "Lots of virus and virus particles still being found in parts of the body six months, nine months, 12 months post-covid. There was one study that showed, in a very small cohort, that of people that had Long Covid, 60% of them actually had spike protein antigen in their circulation, with no active infection." Virus particles make the immune system think there's still something to fight. "It's not unusual for the immune system to be trying to activate because it thinks there's still danger there with these foreign particles."
What can we learn from other diseases about treating Long Covid?
Treatment for Long Covid is complex, because the nature of the condition is complex and every patient presents with such different symptoms. It's very difficult to have a "one-size-fits-all" treatment programme, so we need significant resources to put in place personalised management programmes and to have really good, functioning Long Covid clinics, says Loscher. "Considering this is going to be with us for a long period of time, it's something that needs resources quickly and we need to better understand not just how we manage patients, but have a better understanding of what the key issues with Long Covid and the general population. I don't think we're we're doing that at the scale that we should be doing."
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From RTÉ News, study of Long Covid in Ireland highlights significant and wide-ranging impact on patients physical and mental health
To treat someone with Long Covid "you do need somebody who is an expert in infectious disease, a neurological expert, an expert in understanding the immune system, an expert in psychology, and an expert in understanding sleep disorders." So it's time to join the dots in terms of treatment, says Loscher. "Because at the moment Long Covid clinics are really based on diagnosis and ruling out on any other underlying issues. Then when they have Long Covid it's about trying to put a plan together support that person with their symptoms. But development of pharmacological support is going to be important and therefore understanding what's causing it is going to be very important."
Long Covid has "a massive impact on people's daily lives, their working life, their family life. It’s not something that’s just going to go away." But the more we understand about how patients with Long Covid are affected, the more we can target symptoms in terms of medication, and there could be learnings from other diseases that can help.
Research has shown that when it comes to fatigue, the profile of Long Covid is very similar to Myalgic Encephalomyelitis (ME), which we call Chronic Fatigue Syndrome. ME is "a post-viral state that took a long time to get real validation as a medical condition," says Loscher, but the profile of patients suffering with ME after being infected with West Nile virus or Epstein Barr virus show a lot of similarity with post-covid. "There's potentially some learnings there in terms of how they're treating those patients, because they do look very similar," she says.
We've come out of that emergency phase of Covid-19, but we're going to be dealing with the consequences for a long time to come. We're not long enough away from the real height of the pandemic to know what really happens in these patients years down the line, says Loscher. "Do these symptoms just improve on their own? Does the immune system reset itself? Do the viral particles go away? We just don't know."
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
