Less talk and a lot more action is urgently needed to help sufferers of ME

Sir, – As cases of long Covid across the UK reach an estimated 1.5 million people, society is becoming more aware of the devastation post-viral illness can cause. Many people remain unaware that those with long Covid are joining millions worldwide who have been living with post-viral illnesses for decades, including people with myalgic encephalomyelitis (ME). Next Thursday is ME Awareness Day. ME is a complex, chronic disease that affects multiple body systems – 25% of people with ME are so severely unwell that they are housebound or bedbound.

The vast majority of patients in Scotland don’t have access to any specialist care – 75% are women, which may explain the dismissive treatment from many professionals.

Before the pandemic, more than 21,000 people were living with ME in Scotland alone, and we know this number has grown. The charity #MEAction calls their events on May 12 #MillionsMissing, to acknowledge the millions of people around the world who are missing from society because of ME. My daughter had ME between the ages of six and 19, spending most of that time confined to her bedroom.

We regard her as luckier than many people with ME – she wasn’t in a wheelchair and recovered some years ago, but it had a huge impact on her life and the family.

The Scottish Government has committed to implementing the updated guideline for the management of ME that was published by the UK National Institute for Health and Care Excellence (NICE) last year, but we’ve had promises before and we need action now.

Medical education about ME is abysmal and must change immediately. 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.

To find out more about ME or the charity #MEAction, you can visit meaction.org.uk Helen McDade. Lettoch Terrace, Pitlochry.