Patients with ongoing Covid symptoms should be referred to specialist clinics as early as four weeks after they develop the illness, according to the first official guidelines on the management of “long Covid”.
However, ME campaigners are disappointed that the guidelines fail to recognise a potential overlap between ongoing Covid symptoms and post-viral fatigue syndrome or ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), and that they provide no specific advice on symptom management – particularly how to deal with fatigue and energy management.
The guidelines were developed collaboratively by the National Institute for Health and Care Excellence (Nice), the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP). They stress that most people’s symptoms resolve within 12 weeks. However, for a sizeable minority of people, symptoms can persist or new ones can develop and worsen and have a continuing detrimental impact on people’s quality of life.
Longer-term impacts can include shortness of breath, fatigue and problems involving the heart, lungs, kidneys, nervous system and muscles and joints.
The guidelines say people may have ongoing symptomatic Covid-19 if they present with symptoms four to 12 weeks after the start of acute symptoms, and may have “post-Covid syndrome’ if their symptoms have not resolved after 12 weeks.
Referrals to long Covid clinics should be made on the basis of patients’ symptoms and the impact on their lives, rather than the severity of their initial infection or a positive test for coronavirus, the guidelines say.
“I welcome the fact that Nice has made it clear that long Covid exists, can have a major effect on a person’s quality of life, and that people require a comprehensive clinical assessment to detect ongoing problems involving their heart or lung function. But people with long Covid desperately need practical advice on symptom management, especially how to deal with fatigue and energy management,” said Dr Charles Shepherd, a medical adviser to the ME Association.
“This is where the guideline has failed – the information on symptom management is almost nonexistent. Many of the key symptoms of long Covid are exactly the same as those found in post-viral fatigue syndromes and ME/CFS. This is no surprise given the fact that ME/CFS can be triggered by any type of viral infection, including other coronavirus infections such as Sars.
“So it is very disappointing to find that much of what we have learned about symptom management in ME/CFS, especially the importance of having a period of post-infection convalescence followed by pacing and carefully keeping within an energy envelope, has not been acknowledged or incorporated into this guideline.”
In November, Nice dropped a longstanding recommendation that patients with ME/CFS be prescribed graded exercise therapy (GET), which involves incremental increases in physical activity to gradually build up tolerance. Patient advocates have long argued that GET can cause lasting damage to people’s health, and are concerned it might result in similar harm for people with long Covid.
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