Long covid: Doctor urges people to take part in survey even if they have recovered

Una Fallon says people who have recovered may less motivated to take part in the HSE survey. 'Even if you are well now, please respond.' Dr Fallon added. File picture: Leon Farrell/Photocall

A HSE long covid survey could help patients infected in future avoid the debilitating condition, a senior doctor has said as she appealed to the public to respond to an SMS campaign.

The survey opens today across seven counties and is the first HSE project to estimate how many people in Ireland have, or had, this condition.

Consultant in public health medicine Una Fallon said: “We are appealing to people to help others, you are doing it for others. Even if you are well now, please respond. I think those with persistent symptoms will happily participate but if you are well now you might think ‘this is not for me’.”

The HSE will send three texts to people in the seven counties with a confirmed covid-19 result through PCR testing. People without a PCR result can not participate.

“You’ll receive one text saying you’ve been selected, then you’ll receive a second text that will bring you into the website with information about the survey,” Dr Fallon said.

A third text one day later will link to the follow-up after disease acquisition (Fada) survey questions.

The seven counties are Longford, Westmeath, Laois, Offaly, Kildare, West Wicklow, and South Dublin. They make up HSE Public Health Area B. These have a mix of rural and urban areas, and a broad age demographic, Dr Fallon said.

“We are testing the water with this survey,” she said. “This is a reasonable design for where we are now. We will see what this tells us or doesn’t tell us and then we will recommend the next steps accordingly.”

There is some concern that people may mistake the texts for a scam.

Dr Fallon said: “We just hope people trust us as, over the years, the environment has changed and texts with links may not be trusted.

“We want people to know about this so the text is not unexpected.”

Results will feed into the design of services through HSE long covid clinics, which are still being set up, and the GP network.

The Long Covid Advocacy Ireland (LCAI) group was invited by the HSE to get involved.  

Miriam Cullen, who has long covid since early 2020, welcomed this move.

“We hope the findings will reflect the range of experiences of all long covid sufferers in Ireland,” she said.

“I would like them to include people who didn’t get a positive result on PCR because there were no tests in the beginning, people weren’t eligible through nobody’s fault.

“They might be excluded from the figures.” 

She said LCAI was surprised to be invited and hope this will lead to improved access to treatment for long covid patients.

“It’s great to get the recognition because we are working very hard to raise this,” she said. “Because LCAI will be involved, if they listen — which hopefully they will — we can represent all long covid sufferers. It’s a start.

“People are really suffering. It would break your heart, you hear terrible stories,” Ms Cullen added.