Long Covid, Hop-tu-Naa and ME

As Hop-tu-Naa approaches, please spare a thought for us living zombies in the Isle of Man and those who will be joining us soon. Am I joking? I wish I was. It turns out all those zombie vius films were  on to something. There are many of us numbed, dazed and confused, some dragging themselves  around – struggling to move, hidden in the dark and others angry and volatile.  

Who would have thought COVID, particularly ‘mild’ COVID could do this to people? Well, a lot of  people actually – the ME/CFS community for starters. Right from the beginning of the pandemic  groups were warning us having experienced the devastation of post viral illness first hand and  knowing the long history of many developing ME/CFS following viral pandemics. Our own ME  Support IOM lobbied the Government to communicate the importance of resting and pacing for viral  illness recovery and to prepare for all the chronic illness to come (we’ll circle back to that later). Who  else knew this would happen? Anyone with a half decent knowledge of original SARS (aka SARS-Cov 1) and its version of Long COVID, a serious illness impacting many who were infected. This feature  along with ME/CFS history painted a very concerning picture for COVID (aka SARS-Cov-2). Those with  awareness were raising the alarm and we can see the difference in COVID approaches now in many countries with experience of SARS-Cov-1. 

If you’re thinking it’s bad taste comparing ill people to zombies – which part is bad taste, the  comparison or the reality? If you saw me crashing you’d see my feet dragging on the floor, my jaw  hanging down and my arms limp at my sides. If I can still speak at this stage, you’ll hear slurred  words or strange noises. My eyes will be going in and out of focus and I’ll struggle to understand  anything you say, I may not be able to understand you at all. Is that disturbing? Does that sound  horrific? It is. Especially to me and many others with Long COVID and ME/CFS who live this. As you  picture us, the living zombies, along with zombie children and zombie babies (as sadly they too are  part of this picture), imagine the pain and heartache we and our loved ones feel. Imagine us  struggling to access help and having some deny or minimise our life changing condition. I’m sure you  can then understand why we are desperate for help, why we don’t want to get worse through insufficient support and reinfections and why we don’t want others to suffer like us. 

So, what can be done for us living zombies?  

I’m afraid there’s no cure yet. We’ve just had a Long COVID and ME/CFS service launched here which  is good. Could it have been created sooner? Yes. Should it have been created sooner? Definitely.  Islanders with Long Covid have been waiting a long time for this service but nowhere near the  decades the ME/CFS community here have waited. 

What can you do to help us living zombies? 

Support us and raise awareness. We have been, and largely are hidden due to our condition but also  through stigma often caused by lack of understanding and awareness. We have ME Support IOM  charity (www.mesupport.im) raising awareness of post viral illness plus more and also ME/CFS and  Long COVID adult and child support groups here. 

Be anti-ableist by promoting equality and opposing disability and illness discrimination. Be conscious  of accessibility and the obstacles we face participating in normal life. Our society will benefit as a  whole if it is inclusive for the growing number of us living with chronic health conditions. Help us  move forward, not backwards – we made some impressive leaps inclusion wise through health,  technology and study / working from home earlier in the pandemic; some have continued whilst  others reverted back and we lost those gains.

How can you reduce the risk of yourself or your loved ones becoming living zombies too? 

Practice and campaign for good COVID safety for us all and clean air – our condition is not rare and  many are being added to our number each day. Each COVID infection increases your risk so act  appropriately; many are now developing Long COVID for the first time on reinfection. Good COVID  safety also reduces other airborne viruses which is good for us all. 

Remember how important resting and pacing is for viral illness recovery, especially when post viral  illness develops. What is pacing? It’s a self-management technique for conserving energy. Pacing  requires strict balancing of activity and rest. This practice aims to prevent a person from pushing  themselves beyond their energy limits and ‘overdoing it’. 

Cast aside and dispel COVID narratives such as ‘just a cold’, ‘just the old and vulnerable’, ‘it’s  harmless’, ‘it’s inevitable’ and follow the science (mainstream). Independent SAGE are a really good  way to keep up to date with the data and mainstream science in an easy and accessible way. They  have a website: www.independentsage.org and weekly YouTube briefings: 

www.youtube.com/channel/UCqqwC56XTP8F9zeEUCOttPQ