Long Covid care: ‘There has been a sense of swimming upstream on my own’

One patient tells of 18-month waiting time to access a Covid clinic, says Mayo GP

Eight months after contracting Covid-19, Paula Gray still asks herself whether she really needs to do the most routine tasks because even taking a shower means "I'll pay for it later".

On Christmas Day after noticing that “the Cadbury’s Roses and the turkey tasted the same”, she tested positive and remembers thinking she’d have to “knuckle down for two weeks”.

Since then she has made two failed attempts to return to work. As a nurse she felt bad. “I love my job and I felt I was letting the team down.”

The first time she went back she tried to shrug off burning chest pains and slight breathlessness but an ultrasound showed she had pericarditis, inflammation of the lining of her heart. A recent ultrasound confirmed the pericarditis is still there. “That alarmed me,” she admitted.

It’s been a frustrating journey involving exhausting attempts to work from home and a slow dawning that the worst thing she could do was try to “push through” the condition. She lives in a scenic spot near the caves of Keash in Co Sligo, and used to walk her dogs for an hour every day. “Now all I can do is bring them for a drive,” she said, explaining that she drives to a quiet lane and lets the dogs off while she waits in the car.

There have been days when she's cold even when wrapped in a blanket in front of a blazing fire, and she has learned that resting "is an activity", something she must consciously do, and that doesn't mean reading a book or watching Netflix which are often beyond her.

Throughout it all, there has been a sense of “swimming upstream on my own”, as medics, while sympathetic, tell her it’s still new to them. She has done lots of online research in a bid to find remedies and has spent a fortune on consultations with specialists, and a multitude of supplements. “There is no Long Covid clinic in Sligo,” said Ms Gray who was prescribed steroids for her pericarditis and was “on the floor” when she finished the course. On top of that there are financial worries. She has exhausted her sick pay, the €350 weekly Covid-19 enhanced illness benefit is paid for just 10 weeks, so with a mortgage, a €203 weekly income is a bleak prospect.

But she is upbeat and believes she is making progress.

For many with Long Covid, even worse than the precarious finances and the life-changing symptoms as they struggle from bed to couch, sometimes too weak to lift a “heavy” mug, are the raised eyebrows of the sceptical.

Claire Twomey founded the Long Covid Cases Ireland support group, which now has 2,200 members, in June 2020. She said some members had been on this journey for more than 500 days.

“Eighteen months on, and patients are still having difficulty getting people to believe them even though it has been officially recognised by the WHO.”

While Paula Gray said she never felt doctors didn’t believe her – even those who seemed at a loss – Ms Twomey said other Long Covid patients were experiencing “gaslighting from medical professionals and harassment from their employers as they either remain out of work long term or have recurring sick leave periods as they attempt to resume normal life”.

Long Covid sufferers also report difficulties accessing social welfare, disability supports and treatment.

NUI Galway-based economist Dr John Cullinan, who has researched the financial impact of myalgic encephalomyelitis (ME), said there was mounting evidence many Long Covid patients suffered symptoms that were strikingly similar to this chronic condition. The associate professor of economics has concluded that the economic cost of ME in Europe is in the region of €40 billion per annum – a figure he said was likely to increase as a result of Covid.

He is conscious of the personal financial burden also.

“If you are out of work for a long time with Long Covid or ME, this will have an obvious impact on income,” he said. The need for a national research unit dedicated to Long Covid had been underlined by the deficiencies in funding and services for ME patients, Dr Cullinan said.

“This should be addressed as a priority because, sadly, our record in the area of ME to date in Ireland has been shameful.”

Mayo-based GP Jerry Cowley said one of his patients, a middle-aged woman whose life has been turned upside down by Long Covid, had told him of an 18-month waiting time to access a Covid clinic.

“This woman ran her own business. She contributed to her community and was always fit and healthy, no underlying conditions, she never smoked, did everything right,” he said. “Now she is a respiratory cripple. She can’t walk without bringing portable oxygen with her. And it is the uncertainty that is worrying for patients, the not knowing what lies ahead.”

Family loss

Marie Lalor (71) from Finglas in Dublin also has "an oxygen tank in her hall", according to her son Darren who said his mother was always up with the lark, fussing over his father, Peter, and keeping her house immaculate.

The Lalors lost a lot to the pandemic. When his mother was hospitalised on January 24th last “she was given three days”, her son said. A week later her husband was admitted to the same hospital with Covid-19, and sadly died a few days later, just hours after his wife, in full PPE, was wheeled in to say goodbye to him.

She still struggles with her grief and the ongoing deterioration in her own health, needing oxygen to negotiate her stairs. “I still get up at 5.30 or 6am but I can do nothing,” Ms Lalor said.

Audrey Keogh from Swords lost her sister Mandy (52) to Covid-19 "on Valentine's Day" and she too has been not just coping with bereavement but battling Long Covid herself. Her headaches were so bad "I thought I was going mad". They eased after doctors in a Dublin Long Covid clinic prescribed medication, explaining that "my brain was still inflamed". The emotional burden is huge. "I feel guilty," she said because despite the "foggy brain" and the poor health she was still here and Mandy wasn't.

While there is no diagnostic test for Long Covid and no known treatment, some experts attribute the condition to the immune system going into overdrive, attacking not just the virus but other tissue. Another theory is that fragments of the virus can remain dormant in the body for weeks before becoming reactivated.

Those living outside Dublin find it hard to access Long Covid clinics, forcing patients or their GPs to figure out the speciality they need most, whether cardiology, rheumatology or immunology. Many see a dizzying array of specialists because of a range of symptoms.

National approach

The HSE has said a national approach to Long Covid is “under active consideration” with the aim to provide a largely community-based service, supporting general practice while also setting up a limited number of “specialist pathways” for those requiring specialist services.

Dr Liam Townsend, who was involved in the setting up of a Covid clinic at St James's Hospital in Dublin, has called for a national plan saying "equitable access" to treatment for Long Covid should be available no matter where the patient lives.

The specialist registrar in infectious diseases said people with chronic fatigue “can fall between stools” and, with no diagnostic test for Long Covid, sufferers often undergo a frustrating search for the appropriate speciality for their issue.

The Long Covid clinic at St James’s opened almost a year go and caters only for Covid-19 patients who were treated at the hospital or hospital staff. They see 15 patients every Friday, including a “very small” cohort who got Covid-19 as far back as March 2020.

"It does end," said the clinician who led a research project at Trinity College which found that persistent ill health could result from Covid-19 regardless of the severity of the initial infection.

Asked if there were Covid clinics for patients across the west and northwest, a spokesman for the UL Hospitals Group (covering Limerick, Clare and North Tipperary) confirmed there was no designated Long Covid clinics within the group. “Patients with suspected Long Covid, however, may be, and are, referred to specialist clinics such as infectious diseases, respiratory, etc,” he said.

A national approach to Long Covid was being developed, with the HSE recruiting for the position of an implementation lead for a Long Covid care model, the spokeswoman covering hospitals from Galway to Donegal said.

Kingston Mills, professor of experimental immunology at Trinity College, said the Long Covid issue "will focus minds" when it comes to deciding whether to vaccinate under-12 year olds. He said that while children were likely to experience mild Covid-19 infection, a small number would get "I don't know if you would call it Long Covid but certainly persistent symptoms".

Given that British researchers had found 2-4 per cent of children developed Long Covid, he said: “We must stop that. We don’t want children to be out of school for two months.”

Claire Twomey (34), who contracted Covid-19 in March 2020, still suffers Long Covid relapses. She eventually gave up her job in social care last January because she couldn’t take the stress of being in and out. But as she can work from home she said she was luckier than many.

Paula Gray feels “80 per cent better” now. “But I do not know what the future is,” she added.