Why would you willingly risk becoming like me?

I’m so baffled by vaccine reluctance, especially in populations old enough to remember polio. Covid causes long term damage and disability in a devastatingly high proportion of the infected.

Severe-acute-respiratory-syndrome-Coronavirus-disease-2019, aka SARS-COV-2, AKA Covid-19 attacks the organs, blood vessels, and nerves.

It’s not just a respiratory infection, it’s a systemic disease. We are seeing data now that at least 30% of the people who catch it habe hidden damage to at lease one organ; damage that will cause them health problems further down the track. This damage may go unnoticed for years then kill you suddenly or make you very sick, but for many, it causes trouble from day one.

For 11% of infected people, the damage done by the virus leaves the person chronically ill. Their body has changed and they never fully recover. This has been dubbed Long Covid, but it’s basically just yet another name for ME/CFS.

At the beginning of the pandemic, when the world was going into lockdowns to slow the spread of the newly named novel corona virus, covid-19, the ME research and patient communities were aflutter as we discussed what we thought would happen.

I hoped that this would help research into our condition, through opportunities to study the changes in the body as they were happening, increased funding, and new ideas about what might be going on. I hoped they would discover that we had a natural immunity to the virus and the disease was our bodies’ defending ourselves against future infections (like sickle cell anaemia and maleria). I hoped that any future vaccine or research would help the Millions Missing.

You see, roughly 18 years earlier there had been another respiratory virus, SARS, which swept through Asia, killing as it went. SARS was super deadly, as these things go (roughly 11% mortality rate) but not easily contained, thankfully. It was easy to track and contain because symptoms, like fever, occured before or when the person became infectious. Those unfortunate enough to become infected had 11% chance if dying, and around 10% of surviving but developing ME/CFS. Most survivors suffered some form of nerve or organ damage. We anticipated something similar occurring with SARS2-COVID19.

Soon, we started seeing reports arise of people getting through the acute infection but not really returning to baseline health. Over a year later, we see people with long covid still unable to work. We hate to say I told you so, but we told you so.

Like SARS, the rates of chronic illness after Covid-19 infection seem to hover around the 10-11% range. Thankfully, unlike SARS, the death rates are low (although still pretty devastating when you know everyone will likely get it eventually).

Yet people are reluctant to get the vaccine.

Even without knowing what my future held, if I had been told back before September 2005 that there was a SARS-like virus out there that gave 1 in 10 infected people ME/CFS (I had heard of it), I would have been concerned about potentially catching it. I don’t like those odds.

If I had been offered a simple vaccine injection, and told I could reduce my risk of catching that devastating viral infection by over 95% I would have taken it. If I had still needed convincing, all i would have needed was to be told that it would also cut the risk of damage in half if I happened to get sick (so reducing my risk of being disabled if exposed to it from over 1 in 10 to abound 5 in 2000).

I don’t know what virus triggered my illness, but would give almost anything to go back to mid 2005 with a vaccine for whatever made me sick.

My immune system was strong. I was healthy. I didn’t smoke, I drank very little alcohol, I ate properly, I exercised. I had just moved cities with the man I (then) loved and I had the job I had been wanting for years. I was happy with how my life was going. There was every reason to believe I could recover from any viral illness I caught.

But I woke up for work one day with a sore throat, like I’d been snoring or maybe singing loudly in a smokey bar. By lunchtime I was feeling really sick with a headache and sore body too. By 2.30pm I was in bed with a fever. I have never been well since.

My condition is degenerative if I don’t manage it properly, so while I was able to work for another year and a bit in that job, I got worse and worse. Eventually I realised I needed to leave that job, that I loved, leaving the industry I had trained so hard to join, and do something that was less taxing on my body.

I’ve changed careers multiple times now as I get less able to function with each one. Now I am not even able to give 1 hour of reiki because the effort of concentration is too much for my body.

I went from a full time physical and mentally demanding job to only being able to manage a couple of hours per week doing “hobby work”, and I can only do that if I don’t have to sit on my own, and if the task at hand doesn’t take too much concentration or mental effort.

That is what covid does to you (long covid is ME/CFS under yet another name).

If you catch covid, you have 10% chance of ending up like me. If you’re vaccinated, not only are you far less likely to catch it, if you do, you’re half as likely to end up like this.

With the vaccine, even infected, you are less likely to pass the infection on to others, such as those who can’t be vaccinated or are yet to be eligible.

The leading cause of death in people with ME/CFS/Royal free disease/Florence nightingale’s disease/long covid/tapanui flu whatever name you give it, is suicide. Our lives are no longer lives. We live in pain and isolation, often unable to see, hear, or even think without pain and nausea.

This illness takes away everything I love doing, sooner or later. I can’t sing, I can’t read, I can’t do my science work, I can’t exercise, I struggle to paint, I can’t dance. I can’t even drink alcohol without a careful plan days either side.

There’s no cure yet. There aren’t even any long term effective cures. The best we can do for ourselves is slow the decline as much as we can and hope that someone finds a fix for us soon.

It’s hell.

If you pass it on to an unvaccinated child, they too may end up like this… 1 in 10 will. Could you live with that?

If I had the chance to do over and do something that might stop myself getting sick, I would.

More than that, I would want to be sure I wasn’t going it to pass it on. I couldn’t live with knowing I’d done this to someone else.

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