Those With Long Covid Finally Get Some Guidance. Here's What It Says

New research shows one in five people with coronavirus develop longer term symptoms.

People with long Covid should be offered treatment and care for the long-term effects of their illness, according to new guidance published on managing it.

The latest figures suggest one in five people in the UK who contract coronavirus develop longer term symptoms. Around 186,000 people suffer problems for up to 12 weeks, according to the Office for National Statistics.

People with long Covid previously told HuffPost UK how they felt ignored by doctors or that their GPs didn’t seem to know what they were dealing with.

Now, the National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) have worked together to publish guidelines covering the care of people who have 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.

“This guideline highlights the importance of providing people with good information after they’ve had acute Covid-19 so they know what to expect and when they should ask for more medical advice,” said Paul Chrisp, director of the Centre for Guidelines at NICE.

“This could help to relieve anxiety when people do not recover in the way they expect, particularly because symptoms can fluctuate and there are so many different symptoms reported.”

The guidance is intended to be adaptable and responsive as understanding of the condition grows and new evidence about how to manage it emerges.

Here’s what you should know for now about what it means for you.

Long Covid can actually range in duration

The new guideline shares some definitions of long Covid as well as post-Covid-syndrome and ongoing symptomatic Covid – some of which cross over.

Most people’s symptoms of Covid-19 resolve within 12 weeks. However, for a sizeable minority of people, symptoms can persist or new ones develop, sometimes worsening. These long-term symptoms – which can include shortness of breath, fatigue, and problems involving the heart, lungs, kidneys, nervous system, and muscles and joints – can impact your quality of life.

Until now, long Covid has been used as an umbrella term for anyone with symptoms that last longer than usual. The new guideline splits the stages of Covid-19 recovery into the following three groups:

Acute Covid-19.
Signs and symptoms of Covid-19 for up to four weeks.

Ongoing symptomatic Covid-19.
Signs and symptoms of Covid-19 from four weeks up to 12 weeks.

Post-Covid-19 syndrome.
Signs and symptoms that develop during or after an infection consistent with Covid-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-Covid-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

In addition to these clinical case definitions, the guidance recognises the term ‘long Covid’ is commonly used to describe signs and symptoms that continue or develop after acute Covid-19. That includes both ongoing symptomatic Covid-19 and post-Covid-19 syndrome.

Long Covid needs to be taken seriously

The guideline emphasises the need to address inequalities in care for people experiencing ongoing symptoms. It also mphasises the importance of receiving empathetic care – after evidence from patient experiences showed many people felt their symptoms were not taken seriously.

People with acute (or early stage) Covid-19 should now be given advice and written information on the common symptoms of Covid-19, as well as ongoing symptoms that can occur. They should also be given details on what they can expect from their recovery, information on how to self-manage long Covid, and the symptoms they should look out for that they should seek help for.

Those who still have symptoms after four weeks or more should be urgently referred to acute services if they have: severe hypoxaemia or oxygen desaturation on exercise; signs of severe lung disease; cardiac chest pain; or multi-system inflammatory syndrome (in children), according to the guideline.

People with long Covid need care and support

People should be offered tests and investigations tailored to their signs and symptoms to rule out acute or life-threatening complications, and to find out if their symptoms are caused by long Covid or something else.

If serious complications and alternative diagnoses are ruled out, people should be referred to an “integrated multidisciplinary assessment service” (if available).

The most common symptoms of long Covid:

  • Breathlessness
  • Cough
  • Chest tightness
  • Chest pain
  • Palpitations
  • Fatigue
  • Fever
  • Pain
  • Cognitive impairment (brain fog, loss of concentration, memory issues)
  • Headache
  • Sleep disturbance
  • Peripheral neuropathy symptoms (pins and needles and numbness)
  • Dizziness
  • Delirium (in older people)
  • Abdominal pain
  • Nausea
  • Diarrhoea
  • Anorexia and reduce appetite (in older people)
  • Joint pain
  • Muscle pain
  • Depression symptoms
  • Anxiety symptoms
  • Tinnitus
  • Earache
  • Sore throat
  • Dizziness
  • Loss of taste and/or smell
  • Skin rashes

During their recovery, patients should be guided on self-management of their long Covid symptoms, and receive either support from integrated and coordinated primary care, community, rehabilitation and mental health services; referral to an integrated multidisciplinary assessment service; or referral to specialist care for specific complications, according to NICE.

People with long Covid should be given advice on self-managing their symptoms, setting realistic goals, details on who to contact if they’re worried about symptoms, sources of advice and support, as well as information on how to get support from other services – from social care to housing and finances.

They should also be supported in discussions with their employer or school about returning to work or education in a phased way, the guidelines say.

The guidance also suggests people should be monitored in their recovery, have regular follow-ups and, as part of this, access to multidisciplinary services for assessing physical and mental health symptoms and carrying out further tests and investigations.

NHS England has revealed that people with long Covid can now access specialist help at more than 60 sites up and down the country. Patients can access these services through a referral from their GP or other healthcare professional. This is to allow doctors to rule out other possible underlying causes of the symptoms.

Safia Qureshi, director of Evidence for Healthcare Improvement Scotland (of which SIGN is a part), said: “The publication of today’s guideline is an important stage in making sure that people who are experiencing long-term effects from COVID-19 get the right care and support that they need.

“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.”