Covid-19 hit Ireland in early 2020, with Irish citizens bringing back Covid-19 from ski trips to Northern Italy. Following the first admission of patients to the national isolation unit located at the Mater hospital in Dublin in early March, patients began becoming critically unwell, They presented with respiratory distress, requiring ICU admissions and often support on breathing machines.
Many hospital nurses and consultants became infected, some were hospitalised, some became critically unwell. We were told that Covid-19 was not that “infectious” and you did not need to use a face mask if 2m apart. We were told that children were not a source of Covid-19 spread, but time has shown they are a significant reservoir.
Reports from China in Spring of 2020 revealed that some patients were still unwell three months later; a doctor in the UK, who acquired Covid-19 and had not recovered, coined the term “Long Covid” to describe those still sick three months and beyond. I reviewed the published studies of previous coronavirus outbreaks, for example Sars and Middle Eastern Sars (MERS), both other forms of coronavirus.
The studies showed that some patients infected with Sars and MERS had developed similar post-viral symptoms of chronic fatigue and a wide range of other issues including brain fog. We should have seen Long Covid coming and prepared accordingly.
Research was showing, as early as Spring of 2021, that the hearts and lungs healed but the brain was not. Many patients had lingering symptoms related to brain inflammation
The Mater hospital, where I work, started to study Long Covid in May of 2020. Scientific research is critical to devising strategies to deal with Long Covid. Science should win the day. We anticipated Long Covid would linger, just as it did in China, just as it did with Sars and MERS, and monitored patients over the following 12 months.
The first strain of Covid-19, the Delta variant, and indeed a few of the following variants, caused severe illness and heart and lung damage, but one of our first studies reported that about a third of acute Covid patients had persistent neurological involvement, suggesting brain inflammation.
And our research was showing, as early as Spring of 2021, that the hearts and lungs healed but the brain was not. Many patients had lingering symptoms related to brain inflammation: brain fog, head pressures, concentration problems, sleep disturbances, exhaustion, “crashing”, personality changes. Our research studies identified persistent neuropsychiatric problems, including depression in 18 per cent of patients, unexplained anxiety in 13 per cent, and post-traumatic stress disorder in 21 per cent; all in people with no previous psychiatric problems. Sadly many of these patients were unfairly given psychiatric diagnosis, as all other tests were “normal”.
These patients, many of them healthcare workers infected in the first wave, have struggled to find care, and have had financial benefits cut off as they were unable to work. They have had a wide range of tests done, focusing on symptoms but not the underlying condition. If you have chest pain, order a series of cardiac tests: if you had headache, order a series of brain scans. Most test results come back normal, and patients are told to “get on with it”. Interestingly one type of scan, Positron emission tomography (PET), found inflammation in the posterior parts of the brain in Long Covid patients. This is same parts of the brain that are triggering their Long Covid symptoms “downstream”.
We knew, from publications in the medical literature from as early as December, 2020, that a significant target for Covid-19 was the brain. Our study revealed that at one year, the predominant lingering problem was the brain, and an “immune crashing”.
Currently the plan is that of a rudderless ship in a stormy sea of Long Covid. Time to listen to the science, listen to the patients
We submitted a proposal in July 2021 to the HSE for the establishment of a multidisciplinary centre, focusing on brain rehabilitation, including a network to support GPs who are first in line to see our Long Covid patients. Sadly GPs, to this day, have been provide little guidance on how to manage Long Covid patients. GPs are referring patients in for endless tests, starting patients on multiple medications, to “cover up” the symptoms of Long Covid.
The Government subsequently released a document, in September 2021, entitled The Interim Guidelines for the Management of Long Covid in Ireland, which appears to be have been developed by pulmonary specialists, and the establishment of eight pulmonary centres nationally to manage the post acute pulmonary complications. And only one neurologist has been funded for the country.
Pulmonary complications largely disappeared in 2020 and 2021 as we went from the aggressive Delta variant to the new Omicron variant, and as patients were vaccinated and no longer had serious Covid-19 pulmonary complications. We have established centres for a condition that largely disappeared 18 months ago, and have failed to establish centres focused on neurorehabilitation, which is what Irish research and worldwide research has identified is the crux of the problem.
Scientists and affected patient groups have appealed to the HSE and to the Minister of Health to reassess their plan, and appropriately resource a new strategy. The response is “we are flexible and agile, and when new information comes along, we will adapt”. However they are ignoring the science and ignoring the input from patient groups affected.
Our political leaders are being misadvised and being quoted as saying children do not get Long Covid, and that more research is needed. Children do get Long Covid and we need a plan to support them. The research is available, as outlined above; an immediate freeze on current plans and funding stream is the “agile” thing to do; and new plans and new funding for “neuro-rehab” needs to be made available to support Long Covid sufferers in Ireland. Currently the plan is that of a rudderless ship in a stormy sea of Long Covid. Time to listen to the science, listen to the patients. Get on course.
Jack Lambert is a Professor at the School of Medicine, University College Dublin