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Long Covid scares me 

I am bemused by patients who have absolutely no fear of coronavirus and are blasé about protecting themselves and others from the virus, says Peter Kelly...  
 

The Covid virus does not really scare me. I am young and healthy. I exercise a lot and I sleep well. I don’t think I have ever had a flu and I rarely even get a cold.  

But long Covid does scare me. It scares me a lot, and more so since I read that there are similarities between long Covid and myalgic encephalomyelitis. ME is a horrific illness and I think if people knew more about ME they would be a lot more wary of Covid.  

The reason I know about ME is because one of my best friends from university has been suffering with the condition for over a decade now. It is a heavy cross to carry. ME is an extremely debilitating and frustrating condition to deal with it. It is also known as chronic fatigue syndrome and, in a nutshell, is a form of extreme tiredness. 

ME is not talked about much and for a time, it was not taken seriously.  

I asked my friend what are the three worst things about having ME. This is what he said: “Known as the orphan illness as nobody wants to take it on... There are thousands of people at home with severe ME that can’t leave the house but are offered no domiciliary care. 

“Even if you can get outside the house, many counties do not have an ME treatment facility. I have had family members with a back strain who are offered physio, however someone that has ME and can’t exercise is offered nothing. 

“The assumption that the illness is a psychological issue due to no strict test. There is no blood test so many patients are pushed towards counselling. When I first got ill, I was told I had health anxiety and it was all in my mind.  

“My reply was why would a healthy person wake up one day and make up all these stories of strange sensations in the body? I was still pushed towards counselling. Would a cancer patient be offered counselling as a cure? 

“The impact of the illness on your life and future is huge. Someone who gets ME will lose most of their life. It is like going into old age overnight. There is no cure. You have to learn to be a spectator of life, watching from the side-lines as people pursue career and family.  

“You end up excluded due to the nature of the illness. With this comes mental health problems due to the change in your life. Before you accept your fate, you try a host of alternative therapies filled with charlatans promising you everything.” 

I hope his comments give you some insight into the horror of having ME. I know myself, when he first got it, that I actually thought it was a psychological rather than a physical illness. But the more time I spent with him and the more I talked to him about it, the more I felt I had got it wrong.  

ME is definitely an illness that needs much more funding and research to get to the bottom of it. We all need to take it more seriously. I think long Covid is probably going to lead to a major reassessment of ME and hopefully more funding for research.  

Because of the early recognition of long Covid we are all going to be much more aware of ME over the next few years, and the blasé attitude that some currently display towards Covid will be seen as a foolish position. 

I would not wish ME on my worst enemy, having seen my friend suffer through it. I do hope long Covid proves to be less severe than ME, and not the devastating a life sentence that it has become for many people. My knowledge and fear of ME has certainly kept me on my toes about protecting myself from Covid as much as I possible can.  

I have regularly tested myself for Covid and, as far as I know, I have not had the virus yet. A couple of weeks ago, I had my first dose of the vaccine. Having said that, at the minute, I am being extremely cautious. 

We are at such a critical stage in the battle against the virus. Infection rates remain high, even though we appear to be past the peak. Of course, it is hard, living a restricted and socially isolating life but it will not be forever.

But another year, or how ever long it takes, of being cautious could be the difference between your life returning to a healthy happy one or taking an unfortunate change of direction like that of my friend James. 

My advice is to be smart, stay safe and see this through. 


 

Peter Kelly is a community pharmacist and occasional stand-up comedian based in London. 
 
 




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