The first UK guidelines for the management of the long-term effects of covid-19 have been published today.

Around 80% of people who have the virus experience mild to moderate symptoms. But some of the remaining 20% who have a more serious illness can develop longer-term problems ranging from fatigue to heart, lung and kidney issues – known as long covid.

The new guidelines have been described as “just a starting point” and will be updated as understanding of covid-19 evolves.

Published by the Scottish Intercollegiate Guidelines Network (SIGN), NICE and the Royal College of General Practitioners, they were developed with the help of Mabli Godden, who contracted the virus at the start of the pandemic.

“My long covid symptoms have been bizarre and varied; the only thing that has been consistent is the crippling fatigue,” she said in a blog for Healthcare Improvement Scotland.

“Most days I sleep for between 12 and 20 hours and have done since March. I had a period of respite, where the fatigue was my only symptom from late April until late May and then I began to develop severe muscle and joint pain, brain fog, shortness of breath, chest pain, dizziness, exacerbated migraines, Raynaud’s and skin issues – among other things.

“The symptoms come in waves and often seem illogical and unconnected: they leave me deeply frustrated, upset and isolated.

“I am not an angry person and yet some days all I want to do is shout, but there is rarely enough air in my lungs to do so.”

Long covid has been defined as ‘signs and symptoms that develop during or after an infection consistent with covid-19, that continue for more than four weeks and are not explained by an alternative diagnosis’.

Some long covid sufferers also complain of ‘brain fog’ and struggle to concentrate.

Patients struggling with the condition can also read about what to expect in a new booklet produced by SIGN.

Safia Qureshi, Director of Evidence for Healthcare Improvement Scotland, which hosts SIGN, said today’s guidelines were an “important stage” in making sure people get the right care.

But Ms Qureshi cautioned that long covid is still not fully understood. She said: “We appreciate how difficult it must be for people to face so much uncertainty with this condition and the significant impact it can have on people’s quality of life.

“We will update the guidelines as new evidence emerges to ensure that patients and the clinical community can access the most up-to-date information on best practice and treatment options.”

The guidelines ask doctors to offer a range of tests to determine the impact on each person, with the possibility of urgent referrals for mental health support if needed.

These could include blood tests, fitness checks and x-rays.

If acute complications and other explanations have been ruled out, medics should consider referrals on to multidisciplinary assessment services any time from four weeks after the start of covid-19 symptoms.

Access to services is not limited to those who had their covid-19 diagnosis confirmed by a test as widespread testing was not on offer at the start of the pandemic.

Professor Martin Marshall, Chair of the Royal College of GPs, said: “It’s been a rapid but rigorous process, during which we have listened to both clinicians and patients who have had ongoing symptoms as a result of covid-19 to ensure the guidance is as holistic and comprehensive as possible given what we know.

“Covid-19 is a new virus, and long covid a new illness, so this is just a starting point and as more research is done and new evidence emerges, these guidelines will be updated.”