Long Covid: Call for Isle of Man patients to be consulted on services

The number of people on the Isle of Man with long Covid is not currently known

People with long Covid should be involved in the development of services to treat the condition on the Isle of Man, a campaigner has said.

Health Minister David Ashford pledged to develop a new approach to treating the condition in May's Tynwald sitting.

Covid Recovery Isle of Man founder Alice Quayle said patients had now spent a year being "guinea pigs", as no clear services were in place.

The Department of Health and Social Care has been approached for comment.

There is currently no medical definition or full list of symptoms for long Covid and it is not known how many people on the island have the condition.

Two people with long Covid can have very different experiences, but the most common feature is crippling fatigue.

Others symptoms include: breathlessness, a cough that will not go away, joint pain, muscle aches, hearing and eyesight problems, headaches, loss of smell and taste as well as damage to the heart, lungs, kidneys and gut.

Mental health problems have been reported including depression, anxiety and struggling to think clearly.

'Really basic gaps'

Ms Quayle set up the online support group to allow people to share their experiences and the latest information about long Covid.

Those with the condition had "very diverse symptoms and driving mechanisms", she said.

Calling for patients to be involved in putting together guidance for medical staff on the condition, Ms Quayle said there were "some really basic gaps in knowledge".

"Research is moving quickly, so there needs to be regular updates with the latest and best available knowledge," she added.

She said health officials needed to fulfil the commitment to, amongst other things, train GPs and other medical professionals about the condition and offer practical therapy, instead of a consultant-led service.

"We do hope that the new promised service goes ahead so that as many people as possible can try to get back to the life and work they had before," she added.