“If you’re experiencing post-viral illness after COVID-19 I implore you to take it from me: Stop. Rest. Pace.”

Sian Leary is an active #MEAction UK volunteer who helped produce the film “I got a virus”. This acted as a reminder early in the pandemic that people with myalgic encephalomyelitis (ME) know what it is like to get a virus and never recover.  Moreover, it warned of the mass of post-viral illness to come.

Months later, we’re seeing that tens of thousand of people with COVID-19 are not recovering. An estimated 10-12% of all people with COVID-19 will go on to develop ME. This devastating statistic is motivating those with ME to warn people with long COVID to take care of themselves now so that they have the best possible outcome.

That’s why #MEAction started the Stop. Rest. Pace. campaign, so that those with long COVID can get the care the ME community desperately deserved (and continues fight for). 

If you have ME and you are wondering, “Does reaching out to long haulers help us?” The answer is yes! More people are talking about post viral illnesses than ever before. Supporting and mobilising with long haulers who are getting ME will draw awareness to the disease, and strengthen our cause. We are a supportive community filled with love and compassion. The time to utilise that is now. 

This is Sian’s story:

At age 16 I got a virus. Back then, I stopped. I rested. I paced. For 6 months I was debilitated, unable to attend school, often unable to see friends, and experiencing an increase in symptoms after trying to exert myself. However I was supported at home, enabled to pace, and due to having identifiable tonsillitis I was given time off school. After those 6 months I recovered 100% of my health.

At 19 I got a virus. This time it was sinusitis. When I told my GP it felt like last time I spent 6 months sick, he said that wasn’t happening and I should return to university. I believed him. I didn’t stop. I didn’t rest. I didn’t pace. Instead, I made the 4 hour train journey back to university with my bike in tow. I have never recovered from that exertion.

I was diagnosed with ME, and spent 4-5 years severely ill, at times unable to speak. At my worst I didn’t step outside for 21 months in a row. I couldn’t see anyone other than my closest family who cared for me. I received little to no healthcare, and came up against great stigma. I’m now nearing 8 years from that virus, and while I am fortunate to be improved, I am still a long way from the functionality I had before I pushed myself to get back to university.

If you’re experiencing post-viral illness after COVID-19 I implore you to take it from me: Stop. Rest. Pace.

Join Sian in taking action with the Stop. Rest. Pace. campaign by making a video, changing your social media profile, and sharing tweets and posts. Let’s spread the word and support people with long COVID today.

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