Boosting GP awareness of ME/CFS and long COVID

  3 October 2022  NWMPHN   

With cases of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), predicted to increase in the wake of the COVID-19 pandemic, there’s a strong argument for helping GPs boost their insight into this challenging condition.

North Western Melbourne Primary Health Network (NWMPHN) has partnered with Emerge Australia, the national patient body for ME/CFS, to compile existing diagnostic protocols for the condition, and offer GPs additional training in recognising symptoms and recommending management options and support. 

Estimates suggest that as many as 20 per cent of COVID-19 patients still experience symptoms one month after infection, with 5 per cent still reporting symptoms after 3 months. A recent Canadian study found that 25 per cent of people diagnosed with long COVID still experienced symptoms 12 months later. 

Long COVID expresses across a wide range of symptoms and systems, but for some the presentation is identical to ME/CFS. Symptoms include post exertional malaise (PEM), cognitive difficulties and muscle pains. 

Estimates of the percentage of long COVID patients who develop ME/CFS symptoms range from 16.8 per cent to 89 per cent. ME/CFS in children with prior COVID-19 infection appears rare. 

“It is critical that GPs ​think ME/CFS when confronted with long COVID,” said Anne Wilson, CEO of Emerge.  

“If symptoms persist for between 3-6 months post COVID or post any other viral infection then an ME/CFS diagnosis must be considered and appropriate management implemented. If caught early and managed properly we may be able to impact the ongoing disability and suffering.” 

It’s a subject very close to the heart of Louise De Pino, a trained social worker who has lived with ME/CFS for 21 years. 

“A chronic complex condition like ME/CFS needs care coordination from a GP, meaning that a patient will need their GP involved not only for medical support but also government, social and community supports,” she said.  

“Having a GP aware of this, prepared for this and ready to be there with a patient throughout the journey can make being diagnosed with ME/CFS less stigmatising and isolating.” 

Louise added that it was important for people to acknowledge the debilitating effects of the condition. 

“We all need to understand the significant impact this condition has on a person’s quality of life,” she said. 

“Often our health care systems are quite inaccessible for patients with complex chronic conditions like ME/CFS. When you have to begin making decisions based on how much energy you have – like making the choice between being able to attend a GP appointment, being able to have a shower or being able to cook food to eat – a person’s existence diminishes.” 

NWMPHN CEO Christopher Carter.

NWMPHN Chief Executive Chris Carter said ME/CFS had often been a neglected condition, with those who suffer it sometimes disbelieved.  

“Sadly, there was a stigma attached to having the condition, and considerable variation in approach by doctors,” he said. “The revised HealthPathways guidelines for ME/CFS reflect the fact that there is no single agreed approach. But by partnering with Emerge Australia to promote best-practice through education and training we are giving GPs a great opportunity to boost their skills and insight when it comes to the illness. 

“Symptom progression for people with Long COVID is something being studied and observed in real time across the world, but the link to ME/CFS is emerging as a significant issue and it’s important that health professionals are given every opportunity to identify it and respond effectively.” 

NWMPHN and Emerge Australia are presenting a webinar on 12 October 2022, with presenters including Louise de Pino. They have also revised and updated the HealthPathways Melbourne diagnostic guidelines for ME/CFS.  

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