An online group has been set up for people in the island who are taking weeks or months to fully recover from Covid-19.

It was set up by local illustrator Alice Quayle, who fell ill in mid-March with Covid-19 symptoms, and who still is mostly housebound and unable to do much work.

’It’s really annoying, as I absolutely love my work’, said Alice. ’I guess I fall into the category of the "long haulers" - the 5% or so of people with symptoms who haven’t fully recovered after weeks or months.

’Fortunately some of the worst symptoms have eased off but my lungs are still pretty bad.’

The online group (Covid-19 Recovery Isle of Man) is mostly for moral support and to swap tips and information. But they also hope to raise awareness, and hope to see:

- Regularly updated guidelines for Isle of Man GPs and health workers on how to diagnose and treat the wide range of symptoms reported by ’long Covid-19’ sufferers.

- Access to the UK NHS online portal for ’long Covid-19’ rehabilitation.

- Some tailored multidisciplinary support and rehabilitation for ’long haulers’.

All different ages can be affected by ’long Covid-19’, often very healthy, sporty, quite young people, and many health workers. People are finding themselves with a wide range of bizarre symptoms, and unexpected relapses.

Many are documented in the ’real-time’ symptom study of more than four million people run by King’s College, London. (https://covid.joinzoe.com and https://patientresearchcovid19.com/research/report-1/)

Thousands of people have joined UK ’long haul’ support groups online to provide moral support and try to find a way towards effective treatment.

Many of the ’long Covid-19’ sufferers say they initially had a mild bout of illness but then a severe attack following some aerobic physical activity, sometimes followed by relapses.

There currently seems to be little guidance for doctors and health workers on how to address and treat these wide range of symptoms.

Unfortunately some long-haul sufferers report being dismissed by health workers as having imaginary symptoms, even some of those who tested positive (tests are more accurate when done very early in the illness).

In the absence of guidance, sufferers are exchanging experience online about diagnosis and potential treatment / management of symptoms.

The virus latches on to ’ACE-2 proteins’, which can affect respiratory, pulmonary, nerves, cognitive, kidneys, liver, and thyroid systems. Symptoms include inflammation, blood clotting, rashes, arthritis, ’brain fog’ and tinnitus.

The virus can set off other conditions like glandular fever and Hashimoto’s disease. Post viral fatigue similar to ME is often reported.

Fortunately some large medical studies are starting up on how to understand, help and treat ’long Covid-19’, in those who had symptoms or tested positive.

The world’s biggest study into the long-term effects of Covid-19 is now being established, with 10,000 patients, for up to 25 years.

Professor Chris Brightling of the University of Leicester is leading the study. He has said: ’We’re seeing a huge spectrum of different problems... the severity of many of these problems seems greater than we’ve observed with previous conditions.

’We know that there’s an inflammatory response that affects many organs, and we also know it has impacts on clotting. To me this explains some of the much broader effects we are seeing.’

Professor Brightling is working with a multidisciplinary team, because of the ’need to think about multiple different diseases, because if we just look at Covid-19 through the lens of only one speciality, we’re going to miss this picture’.

The NHS in the UK has recently started an online portal for rehabilitation of post-covid patients. (https://www.yourcovidrecovery.nhs.uk/) The NHS is also making personalised packages of support available.

Specialist treatment centres are establishing which combine physiotherapy, diet advice, psychological support, and other clinical interventions.

One silver lining of Covid-19 might be better support for chronic fatigue conditions.

The Manx online group is set up mostly for moral support and to swap tips and information.

They also would like the option of a register for ’long-haulers’.

At present they say there doesn’t appear to be any on-island information or support tailored for post-Covid-19 patients.

’The island and our NHS have done a fantastic job in acting quickly and decisively to stamp out the virus,’ Alice added.

’And I’m glad to hear that there has been some training recently for GPs here on the longer term effects of Covid-19 and how to help recovery. But we do need more support here for "long-haulers".’

’And finally, a message to everyone: please don’t be complacent about this virus. If it doesn’t kill someone it can still knock them out and keep them off work or school for months, and we don’t yet know the long-term health implications.

’I don’t think we should be lowering our guard and forgetting that it spreads like wildfire.’