Long COVID patients urged to set realistic goals and join support forums in official guidance

The National Institute for Health and Care Excellence (Nice) has published guidelines on how medics can help long COVID patients manage their symptoms.

Early research suggests four out of five coronavirus cases are mild, however, it can trigger a disease called COVID-19.

While most return to a clean bill of health, more than 150,000 former coronavirus patients in the UK alone are said to be enduring lingering complications, despite testing negative for the infection.

With the coronavirus only identified at the end of 2019, medics have been somewhat stumped when it came to treating “long COVID”, which has been linked to fatigue, palpitations, brain fog and even organ damage.

In November, a report by Nice defined “post-COVID-19 syndrome” as “signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis”.

Read more: Ultra-marathon runner reveals how he manages long COVID

It now recommends long COVID patients find “ways to self-manage their symptoms, such as setting realistic goals”.

Those who are “worried about their symptoms” or need “support with self-management” may benefit from online forums and apps, added Nice.

Watch: What is long COVID?

“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 from 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.

“Because this is a new condition and there is still much that we don’t know about it, the guideline will be adaptable and responsive as understanding of the condition grows and new evidence about how to manage it emerges.”

Read more: Doctor ‘gets so dizzy he cannot write a letter’ due to long COVID

The vast majority of people who become seriously ill with the coronavirus are elderly or have an underlying health problem, like heart disease or diabetes. Long COVID, however, is emerging even among people who had a relatively mild bout of the infection itself.

With tests in short supply at the beginning of the coronavirus outbreak, long COVID can also occur among people who never swabbed positive for the infection.

Long COVID’s cause is unclear, however, it has been suggested the immune response triggered by the coronavirus may lead to lasting inflammation that can theoretically affect any part of the body.

The infection may also linger in pockets of the body after it has been cleared from the airways.

Nice’s report – developed with the Scottish Intercollegiate Guidelines Network and Royal College of General Practitioners – “covers 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”.

Long COVID tends to resolve within 12 weeks, however, “a sizeable minority” endure persistent or even new complications beyond this time, with pre-existing symptoms sometimes worsening.

Patients have previously been told to pace themselves and rest as much as possible.

The panel behind the report, commissioned by NHS England and NHS Improvement, agreed there was “very little evidence” on the effectiveness of different long COVID “interventions”.

Nevertheless, after evaluating “current evidence and expert consensus”, the report provides recommendations for “healthcare professionals providing care for people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome”.

Ongoing symptomatic COVID-19 is defined as complications lingering for four to 12 weeks after the initial symptoms’ onset, while post-COVID syndrome occurs when these have not resolved after 12 weeks.

Read more: Personal trainer hires carer after long COVID leaves him ‘wiped out’

Nice recommends patients be offered “advice and information on self-management”, whether that be setting realistic goals or getting additional support via online forums and apps.

Medics should also tell relevant patients how to be supported by other services, like social care or housing.

Patients should also be guided through “discussions with their employer, school or college about returning to work or education, for example by having a phased return”.

With the report emphasising the importance of support, patients should be informed about “new or continuing symptoms” that they “can share with their family, carers and friends”.

The report stresses “it is not known if over-the-counter vitamins and supplements are helpful, harmful or have no effect in the treatment of new or ongoing symptoms of COVID-19”.

For patients who are referred for rehabilitation – whether it be physical, psychological or psychiatric – “ensure any symptoms that could affect the person being able to start rehabilitation safely have been investigated first”, the report tells medics.

Rehabilitation should be “personalised” to the individual based on their medical assessment and recovery goals.

The report also encourages patients to keep a record of their goals, recovery and symptoms, possibly via a tracking app.

Older patients may need additional backing, for example via short-term care packages or “support with social isolation, loneliness and bereavement, if relevant”.

For children, medics have been told to “consider referral from four weeks for specialist advice”. A referral may be appropriate if a child has COVID-related kidney or heart damage, for example.

Read more: Long COVID patient ‘not the same person she was’

Medics should then “agree with the person how often follow-up and monitoring are needed, and which healthcare professionals should be involved”.

“Using shared decision making, offer people the option of monitoring in person or remotely depending on availability, the person’s preference and whether it is clinically suitable for them,” states the report.

It may be appropriate for a patient to monitor their heart rate and blood pressure themselves from home.

“This guidance is a welcome step on learning the epidemiology and impact of this new pandemic,” said Professor Kamlesh Khunti from the University of Leicester.

“There are still a number of unknowns such as how we classify long COVID, including timeframe and the symptoms to be included.

“Much more research needs to be done on how it affects different populations such as ethic minority, deprived populations, people with severe (hospitalised) and milder disease, and people with pre-existing chronic diseases particularly those with multi-morbidity.”

Watch: Can you catch coronavirus twice?