Patients at higher risk of developing ME after COVID-19 diagnosis

On ME Awareness day today (Tuesday 12 May) researchers at the University of Leicester have warned that up to one in ten patients who have had coronavirus could be at higher risk of developing Myalgic Encephalomyelitis (ME).

From previous studies involving patients with Epstein Barr and SARS, it has been estimated that one in ten people (10%) recovering from COVID-19 could develop ME. Whilst the exact causes of all cases of ME are not known, viral infection is commonly identified as a trigger.

As part of their rehabilitation, patients who have been critically ill with COVID-19 may require physiotherapy, and so physiotherapists could play an integral role in spotting the initial signs of the disease developing in patients.

Dr Nicola Clague-Baker, Associate Professor in the School of Healthcare at the University of Leicester said: “The link between severe viral infection and ME is clear, as evidenced in the previous outbreaks of SARS and Epstein Barr, which saw an 8 - 10% corresponding rise in the number of patients diagnosed with ME.

“During the national COVID-19 crisis, many physiotherapists will have been redeployed to front-line services, but as time goes on our attention will shift to the rehabilitation of patients that were critically ill with coronavirus. 

“Now is the time for physiotherapists to heighten their awareness of this serious complication from viral infection. ME develops from post-viral fatigue syndrome and is usually diagnosed between four and five months from the start of the viral infection.”

ME currently affects approximately 250,000 people in the UK and causes a severity of disability that often exceeds conditions such as heart disease or cancer. Around 25% of patients are completely bedbound, with symptom duration that can last indefinitely.

A defining feature of ME is Post-Exertional Malaise (PEM), which is characterised by a set of symptoms including fever, muscle ache, headache, sensitivities, fatigue and dizziness. PEM is triggered by physical or cognitive exertion, which can be as simple as taking a shower or talking to a relative, and it can last days, weeks, or even months. PEM can manifest up to 24-48 hours after exertion, so it is not always apparent what activity was the trigger.

The challenge for physiotherapists who are working to rehabilitate COVID-19 survivors is to identify those who start to display symptoms of ME so that they can adapt their approach to avoid triggering PEM and worsening the condition.

Dr Clague-Baker recommends looking for indicators that there has been a change to the patient’s daily life, for example they may have returned to work but are now having to use their weekends to recover or are finding daily tasks a struggle.

Dr Clague-Baker continues: “After a period of illness, people will be keen to recover and return to their normal activities, and many may try to ignore symptoms and believe they can ‘push through’ their fatigue.

“Careful questioning and an awareness of the viral infection in their history may help to identify potential new ME patients. It may be several months, or even years, before their symptoms are accurately identified.”

Clinical signs to look for include:

  • Post exertional malaise
  • Persistent reported fatigue that substantially reduces activity levels
  • Unrefreshing sleep
  • Muscle and/or joint pain
  • Cognitive disturbances (memory, attention, information processing)
  • Sensory disturbances (photophobia, sound sensitivity)
  • Orthostatic intolerances (inability to tolerate anti-gravity positions)
  • Ongoing flu-like symptoms, sore throat/lymph node swelling

Dr Clague-Baker, with colleagues from PhysiosforME, the University of Manchester and Oxford Brookes University have been successful in securing funding from the ME Association for a new study looking at a new approach in the diagnosis of ME. The new study will measure oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with ME whilst undertaking normal daily activities.