"Fatigue is the killer," says MEP and former Rose of Tralee Maria Walsh as she outlines how she is feeling: dull headache, muscle tiredness and an energy rating of "realistically a four" on a scale of 0 (going under) to 10 (super-energetic).
“I will have to finish relatively early today, 2pm or 3pm, and try and rest for the rest of the day,” says the 33-year-old in a mid-morning phone call from the family farm in Shrule on the Galway/Mayo border. She lives there with her parents when she is not in Brussels representing the constituency of Midlands-North-West (Galway to Donegal, Mayo across to Louth).
It is six months since she woke up in her Brussels apartment in the early hours of a Wednesday morning last October and didn't feel right. A Covid testing station had been opened in the grounds of the European Parliament, so she was soon able to get an appointment.
The next day she felt she did not need even to open the email confirming the positive result; she already knew.
Walsh struggled on working remotely from her apartment despite “extreme fatigue, unbelievably bad headaches and very poor concentration”. Her sense of taste and smell had remained almost intact “but I would do chunks of meetings and then I would have to rest”.
In hindsight the Fine Gael politician says “I didn’t give my body enough time to rest”.
But at the time she was just relieved that she hadn’t contracted Covid while at home with her parents, who work together in an auctioneer’s office. “I was so grateful I didn’t have to turn around to my father and say you can’t go into the office because you need to restrict [your movements].”
The illness lasted two weeks, and she stayed on in the Belgian capital for an extra week to be on the safe side before returning to Ireland. She isolated in a cottage beside the family farm for two weeks before rejoining her parents.
From mid-November to the end of December “I was extremely tired, my migraines were fierce; my eyes were getting blurry; my muscle memory was being impeded.” She went for retesting because “I was convinced I still had, or had got Covid again, because the symptoms and experiences were ongoing”.
Reassured by negative results, she thought she would be fine once she was able to take a few days off over Christmas. “Then the first of January hit and there was no denying it.” She realised she would have to rejig her schedule with her team as she was typically needing to take an hour’s break after an hour’s work. Heavy reading was left “to the perky times – that would be in the morning”.
Walsh does regular online question-and-answer sessions with schools, “trying to bring a lot of energy” to her work in engaging with people, “the same as I would have done to the Rose of Tralee year”. But now she was having to start her day late, finish early and block times to eat.
In experiencing persisting, debilitating symptoms up to six months after being infected with Covid, Walsh fits into an emerging pattern of younger women seemingly being most at risk of “long Covid”, also known as post-Covid-19 syndrome.
It’s an apparent gender bias that is the opposite to the acute stage where mortality among older men is significantly higher than for older women. Yet preliminary data from a UK study found that working-age women who are hospitalised with Covid-19 are five times as likely to develop long Covid as men in the same age group.
"It's not clear whether it's biological or behavioural," says infectious diseases consultant Dr Eoghan de Barra, because young women being over- represented among those being treated for long Covid may reflect that they're more likely to seek help.
These patients "are young, they don't look sick and they're falling apart inside", is how respiratory consultant Prof Séamas Donnelly sums up many of those he is seeing at a long Covid clinic that Tallaght University Hospital (TUH) has been running since January. The two main categories of symptoms are related to the brain and to the lungs, along with a variety of other less common issues.
“Brain is the most common, with fatigue, brain fog and poor concentration, leading to anxiety, depression, and some would have significant post-traumatic stress disorder.”
Of those who complain of shortness of breath, some would have evidence of early pulmonary fibrosis, while a smaller percentage run the risk of a weakened heart.
Joining the dots
The health system has naturally focused on the acute situation, says Donnelly. “But the elephant in the room is the long term, debilitating symptoms of long Covid.” We need, he says, “a focused, joining the dots national strategy that is properly funded”.
Plans for this are being worked on, he acknowledges, but senior management at TUH has meanwhile managed to find some money in its own reserves to open a dedicated multi-disciplinary long Covid clinic, which has received more than 1,000 referrals.
“A national approach to long Covid is currently under consideration,” says the HSE in a written response to queries from The Irish Times. While it is extremely difficult to quantify how many people are experiencing symptoms, the HSE is looking at how it can model the possible numbers that will be affected.
“Longer-term observational studies will be required to understand the health consequences presently being attributed to post-Covid-19 infection. Guidance is being developed to align needs with care provision, and to develop criteria and strategies for the ongoing evaluation of patients,” the statement adds.
It’s too early to be definitive about any aspect of long Covid, including just how “long” it is, as there is little scientific research so far into the phenomenon, which can occur across the entire age range. A month ago Donnelly did an online search for research papers on Covid and found reference to 120,000 on acute Covid and just 180 on long Covid.
While there is no proper prevalence study, it is suggested that up to one in 10 people who have had Covid are at risk of long Covid, whether their infections were mild, moderate or severe. On that basis we’re “talking about 20,000 or 30,000 people and climbing” here in Ireland, he points out, which will pose extra demands on a health system that already has a huge backlog to deal with as the State emerges from the pandemic.
Donnelly refers to a paper published in the Lancet on a study that tracked 1,700 Covid patients discharged from hospital, and found that up to 15 per cent were not back at work six months later. This represents a big economic loss, “so any system that can help to accelerate recovery and maximises your ability to be part of society, work, family, or whatever, needs to be launched”.
Profound fatigue is probably the most common issue among the almost 2,000 members of a long Covid support group that was set up last June by Claire Twomey after she struggled in the wake of contracting the illness back in March 2020.
“But fatigue is not the word to describe it,” she says. “You just feel physically ill after any physical activity, whether it’s cooking the dinner or having a conversation with someone.”
Within the group people are reporting a wide range of symptoms, including respiratory issues, cough, intermittent fever, cardiac issues, gastrointestinal issues, migraines, neuropathic pain, discomfort in legs and joints, tingling sensations.
Twomey, who last January left her full-time job in social care after several relapses while trying to return to work, says the group is seeking more acknowledgment of the condition in public health media briefings.
“Long Covid is technically a hidden illness because it’s new. People are experiencing a lot of issues with family and friends, and their employers,” she says.
Little is being done here, she argues, in response to the World Health Organisation’s call last February for countries to prioritise rehabilitation for the medium- and long-term consequences of Covid-19. “We feel there has been very little explanation given or acknowledgment of the existence of it. We are working with the HSE and they are trying to do what they can.”
The WHO also urged more systematic gathering of information on long Covid and infectious diseases consultant Dr Eoghan de Barra welcomes the Department of Health's recent confirmation of funding for an all-Ireland Covid bio-bank, in which he and his colleagues at Beaumont Hospital in Dublin will be participating.
Twomey says she is not feeling as bad as she was last December, but attributes that to no longer working nine to five and putting her health first. However, as a yoga teacher who used to swim in the sea and hill-walked, “this is not me”, she adds, “this is not the life I have lived before”.
As somebody who used to happily work “morning, afternoon and evening”, Walsh finds “comparisons a killer” when she reflects on her current capabilities. For example, a habitual 15-minute walk from where she stays in Brussels to the European Parliament now takes her 30 or 40 minutes.
Walking the slight incline en route while talking to her brother in LA on the phone one day, he said “you sound as if you are smoking a pack of 40, what’s going on?”
She had been in good health before Covid hit. “I probably could have lost 10 pounds and done a few more 5km runs, but I was relatively fit and had no difficulties in anything.”
She is trying to prioritise good nutrition, more sleep and pacing herself in physical activity.
Having campaigned for mental health awareness and support long before the start of the pandemic, she knows wellbeing is going to be huge issue coming out of the pandemic. “I think we are going to have a lot of anxiety around being back in whatever normality looks like.”
She has felt defensive about how she caught the virus despite having been extremely cautious. She worked apart from her team members, wore two masks at a time, cleaned her hands whenever she passed a sanitising station within the European Parliament building, and only did grocery shopping at quiet times.
When she rang home to tell her parents, “instantly my Dad asked ‘were you not wearing your mask? Why weren’t you washing your hands properly?’ And I was like ‘Dad, I was doing all these things’.” Then he wanted to know who she had met who had it, and she said she was not meeting people.
“You can pick it up anywhere. We’re putting too much into the blame game. People need a way of mentally coming through that without social anxiety.”
Read: Long Covid - what hospital doctors are seeing