COVID can be deadly, with a fatality rate of around 1%, but for those who survive COVID it can cause ongoing problems. Persistent tiredness, fatigue, cardiac and respiratory symptoms such as coughing and breathlessness are the most common features of long-COVID.

What is long-COVID?

Post-acute COVID-19 or long-COVID describes the various symptoms that may arise in the weeks or months following the disease. The term “long-COVID” is used to define COVID-19 that lasts for more than 12 weeks, although some people consider symptoms that last more than eight weeks to be long-COVID.

The World Health Organization (WHO), defines long COVID is a “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.” 

Symptoms of long-COVID, as reported by those who experienced it, are identified into three main groups: 

  1. Respiratory symptoms including cough and breathlessness
  2. Symptoms affecting other parts of the body, including the heart, brain, and the gut
  3. Generalised symptoms of fatigue

In a study of 4,182 people thought to have long-COVID, heart symptoms were commonly reported, such as palpitations or increased heartbeat, as well as neurological symptoms of ‘pins and needles’, numbness, ‘brain fog’ and symptoms of fatigue.

What is the risk of long-COVID?

Older people, women, and those with five or more symptoms in the first week of becoming ill with COVID-19 are more likely to develop long-COVID. Although the prevalence varies depending on age, co-morbidities and COVID variants, long COVID affects around 10% of 18-49-year-olds who get COVID-19, increasing to 22% of people over 70. In some studies, people with asthma were also more likely to develop long-COVID.

Does getting vaccinated reduce the risk of long-COVID? The answer is definitely, yes! Research from King’s College London suggests that having two doses of the vaccine halves the risk of developing long-COVID in adults who become infected. Other studies have shown that fully vaccinated adults are much less likely to need hospital treatment and tend to report milder COVID symptoms than those who are unvaccinated.

The relationship between long-COVID and ME / CFS

Many people suffering from long-COVID also have symptoms consistent with the postviral fatigue syndrome (PVFS) that we are used to dealing with in people who go on to develop ME/CFS. However, most definitions of ME/CFS require symptoms for 6 months or more, whereas long-COVID can be diagnosed after 8-12 weeks.

While most people with ME/CFS do not have any significant symptoms relating from COVID-19 that are seen as triggers, some do. PVFS and ME/CFS symptoms that may accompany long-COVID include muscle fatigue, myalgia, neuropathic pain, arthralgia, fasciculations, headache, dysautonomia, sensory disturbances, unrefreshing sleep (hypersomnia), post-exertional malaise and more. Many other symptoms have been linked to long-COVID, and in some cases, there are symptoms and clinical features that overlap with ME/CFS. However, long-COVID can have respiratory and heart damage not usually seen in ME/CFS.

When post-covid syndrome symptoms have persisted for more than 3 or 4 months, symptoms are more consistent with ME/CFS symptomatology, there are no significant COVID-19 related symptoms and no evidence of lung or heart damage, a diagnosis of a post-covid ME/CFS may be more appropriate.

Management of long-COVID

Unfortunately, to this point, there have not been any proven treatments to cure long-COVID, or ME/CFS for that matter. There is a lot of active research in this area, but as yet nothing proven to be effective. So, if you see someone promising a cure for long-COVID, treat these claims with caution.

In the absence of proven cures, treatment for long-COVID is currently based on managing specific symptoms and providing general support. It is important to manage specific organ problems in long-COVID, such as lung inflammation, cardiac or vascular problems.

The general principles used to manage ME/CFS as outlined in the recent UK NICE recommendations are a good framework to apply to management of long-COVID. In most countries, long-COVID clinics are being established so it is a good idea to link in with those. Whilst at the moment they may not have much to offer in terms of treatment, they are collecting data which will help to better understand long-COVID and will also be where trials of new treatments for long-COVID are run.

NICE have also recent issued guidelines for assessment and management of long-COVID. Rather than their usual guideline, which is based on years of published research, this is a rapid guideline, with some of the recommendations based on general principles and consensus opinions. This is because there aren’t good quality studies to inform the guidelines, particularly with regards to treatment.

Where can I get help?

With many people having been infected and continuing to be infected with COVID-19, long-COVID clinics are being established, usually at large research hospitals. Your GP / primary care physician will be aware of what is available in your local area and refer you on if needed. 

There is also a vast online community helping people with long-COVID open up, seek help, and share information. There are also online resources that promote strategies to help manage symptoms of long-COVID, such as the COVID Recovery Initiative.

Resources / links:

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