The Perpetual Lockdown Of ME/CFS – ME Awareness Month 2021

pippa sat on top of made bed, wearing pink and grey pyjamas, long brown hair down. pippa has one leg propped up with her hand resting on it, the other hand holding a sign which says '10 years in lockdown'
Image from Action For ME’s #YearsInLockdown Campaign

This post has been grabbed from my Instagram page, where most of my ME/CFS Awareness Month shenanigans will be taking place this year. You can read more about my chronic illness story here, and find easy ways of getting involved and showing your support here!

Okay gang, May is ME Awareness Month. And if you don’t have a chronic illness and you’re about to stealthily scroll past this post, stop right there. This one is a direct appeal to you. Yes, you. 

I’ve been part of this online ME/CFS community for over a decade now. Every year, people whose lives have been turned upside down by this illness pour their energy into raising awareness, challenging stigma, and showing the world why they should care. And every single year for the last decade, I’ve felt disappointed. Disappointed, because more often than not this awareness month seems to become something of an echo chamber. We mostly reach the people who are already informed, rather than those who are not. We urgently need more non-disabled people to stand with us too. 

So, why should you care? If this past year has shown us anything, it’s shown us that *nobody* is immune from the effects of post-viral fatigue and potential complications. Any person could get a common virus one day and never get better – precisely what happened to many of us. And whilst I wouldn’t wish it even on my worst enemy, perhaps this is finally the turning point where the world begins to see just how debilitating and heartbreaking living with these symptoms can be… and that’s before you factor in the stigma, invalidation and endless gaslighting that are a non-negotiable part of the package deal of chronic illness too. 

My intention in sharing this isn’t to scare you, but to make you see that ME/CFS isn’t an isolated issue that affects a small minority and isn’t a cause for global concern. There are over 260,000 people in the UK alone with this condition, and with one in ten Covid patients developing longer-term complications, leading experts warn that number is likely to increase. There is no longer any excuse for complacency.

This May, my simple ask to you, non-disabled readers, is that you do the work. I’m putting myself on the line here but I’m going to say it – liking and sharing posts on social media helps, but it isn’t enough. Not this year – not if you’re privileged enough to have the capacity to do more. Instead, I’m asking you to learn about the historic abuse of ME/CFS patients, watch the Unrest documentary online, read about the PACE trial controversy that’s dictated the narrative of the management of this illness in the UK, donate to biomedical research funds, and learn to be real allies. In particular, listen to and learn from patients with Severe ME and Very Severe ME. This condition is a spectrum, and the ones most severely affected are often the ones who are neglected the most.

As restrictions lift in the UK, and the world begins to return to some semblance of ‘normal’, it’s people with chronic illnesses who are likely to be left behind once more. Legally we can go wherever we want, but ME/CFS means we have to stay where we are. In many ways, we’re in a perpetual lockdown… but we will not be forgotten. Engage. Stand with us. 

Thanks for reading! This post has been grabbed from my Instagram page, where most of my ME/CFS Awareness Month shenanigans will be taking place this year. You can read more about my chronic illness story here, and find easy ways of getting involved and showing your support here!

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