#MillionsMissing

As cases of long Covid reach an estimated 1.5 million people across the UK, society is becoming more aware of the devastation post-viral illness can cause. Now those with long Covid are joining millions worldwide who have been living with post-viral illnesses for decades, including people with myalgic encephalomyelitis (ME).

Today, Thursday May 12, is ME Awareness Day. ME is a complex, chronic disease that affects multiple body systems – 25% of people with ME are so severely unwell they are housebound or bedbound. The vast majority of patients in Scotland don’t have access to any specialist care.

Before the pandemic, more than 21,000 people were living with ME in Scotland and we know this number has grown.

The charity #MEAction is calling its events #MillionsMissing to acknowledge people worldwide who are missing from society because of ME. People with ME need change urgently.

Healthcare professionals must be educated about ME and given the tools to support and treat patients. Quality research needs to be commissioned to better understand the disease. And the research that is already being funded

for long Covid should take the opportunity to explore the similarities and differences to ME. People with ME are only asking for the care and understanding they deserve.

An important message to get across is the significance of recognising the symptoms of PESE (post exertional symptom exacerbation). ME is one of the few conditions that responds adversely to too much physical and mental activity, causing a deterioration in health, either at the time or up to 24 hours later. This can take anything from hours to months to recover from. It is so important to find a baseline to avoid PESE.

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