Summary
In the absence of official guidance and mitigation during an ongoing public health crisis, I am now personally veering towards DIY preventative measures for my own safety.
Hello,
During the pandemic I have been fighting for M.E patients to have access to shielding and group 6 priority for vaccines but haven’t got anywhere, same as all other M.E organisations and national charities. I have been increasingly aware that being vaccinated doesn’t prevent infection or stop ‘mild’ infections from negatively impacting my M.E for months afterwards and am now veering towards DIY preventative measures. I had been thinking ‘well it would have been much worse if I hadn’t been vaccinated’….which is true to some extent. Remember, I had COVID19 in March 2020 so I know what an ‘unvaccinated dose’ of COVID19 feels like in me. It was blooming awful, I thought I was going to die in my sleep on the evening of day 10 (I wrote my passwords down when NHS 111 didn’t take my concerns seriously) and it took over 2 years of respiratory, endocrinology, neurology, and speech and language therapy appointments before I started to ‘improve’.
I have not received a COVID19 ‘booster’ since December 2022 and, as the UK Government are no longer vaccinating according to age, I am not eligible for a ‘booster’ now. I know that many people are lying and saying they are carers of vulnerable people when booking a ‘booster’ online (UK) and that was something I was considering but I have changed my mind.
I have been keeping up to date with ‘the science’….lots of different viewpoints but science nonetheless. Some said natural immunity didn’t last long enough to offer adequate ‘immunity’ whilst others claimed that natural immunity was better than a vaccination. I have taken it all on board but it hasn’t helped me to make any real life decisions to reduce my own real life risk from COVID19. I have worn a mask 99.9% of the times I have left my house for any reason and only risked not wearing one when I was confident (enough) that the ventilation (supplied by me) was adequate, for example the launch event for Foggy’s Global Challenge and Redefining Gravity and Stripy Lightbulb CIC’s training day in Cardiff. I did my own risk assessments for both and decided my use of HEPA filters for one hour before and during the event AND the number of people in attendance meant it would be ‘safe’ for me to present to my audience without wearing a mask.
I miss spontaneity
I hadn’t paid any attention to DIY measures that people were trying as there was little or no evidence that they worked and I didn’t want to waste money on things that would likely lead me to catch COVID19 due to a false sense of security. I was simply waiting for scientists and/or public health organisations to recommend something…anything! However, I started to realise that my M.E affected body suffers for months after every COVID19 infection whether vaccinated or not. Was there any point in having a vaccination, particularly one that so many people with my disease were having adverse reactions to if it didn’t prevent me catching COVID19 ? I am now thinking it’s not worth it for me.
This is not a recommendation or medical advice
I am now taking preventative measures rather than begging for a vaccination.
2023 currently means shielding or masks, social distancing and ventilation on the odd occasions I leave my house. Social events are a complete no-no at the moment because I would have to remove my mask to eat/drink/talk to people in loud environments.
Around two months ago, I chatted online to a ‘M.E. friend’ who had started taking Grapeseed Oil Extract as a preventative measure. This friend said that there is very limited research evidence that it is effective in protecting from COVID19 but we both agreed that ‘in the absence of a vaccine it’s a good plan B’. I did a bit of my own research online and it seemed like a reasonable step to take to protect myself. I bought some capsules online (reputable outlet) and started taking them whilst continuing to shield and mitigate. One week later, I started to feel very dizzy and nauseous. Originally, I thought it was an ear infection or migraine. I was really rough for 3-4 days….then I had a lightbulb moment. I checked the side-effects of the Grapeseed Oil Extract capsules ‘may cause dizziness and nausea’. I stopped taking them and VOILA…the dizziness and nausea stopped overnight.
Just my luck – what could I try now?!
Scrolling through X Twitter a few weeks ago, I came across a tweet from a Foggy Follower. She had gone out with friends and they had car shared to and from the night out. She was the only one of the group who did not catch COVID19 that evening. N1 hardly counts as ‘scientific evidence’ but what had she done as a preventative measure? She had taken Viraleze antiviral nasal spray and gargled with mouthwash containing CPC.
In my mind, even if I catch covid19 whilst using these preventative measures, my viral load will be significantly less. I believe this makes them worth trying. I have now purchased mouthwash and Viraleze (other sprays are available) and will be putting them into practice the next time I ‘go out’ or when I know I could be at risk. I tweeted about this a few days ago –
I’m going to use nasal spray/mouthwash/masks/ventilation/being careful re social distancing as PREVENTATIVE measures **situation appropriate.
Foggy Followers who are able to keep up with my social media output will know that 2 of my 3 COVID19 infections have been caught in my own home despite rooms being ventilated. I strongly believe that using mouthwash/nasal spray will also reduce my risk when I am relaxing and not masked up in a home environment. Prior to the pandemic, I regularly caught an array of viruses that usually ended up as one infection or another and caused misery for months. I am hopeful that these preventative measures will also help with that.
My M.E has got steadily worse with each infection since 2020 and I do not want to find out how much damage further infections will inflict on me. It feels good to ‘take control’ of my own health a little bit.
Anger
It is hard to not feel let down and abandoned by those in Government and public health organisations. I personally feel there has been an absolute dereliction of duty during this public health crisis where ‘vulnerable’ people are concerned. Why on earth should we have to research our own preventative measures? Surely that is their job?! In terms of doing their job to the best of their ability, if not now, when? Rest assured, I will continue to fight for people with M.E. to have the right to choose whether to have a vaccine or not. Choice is something we currently don’t have whilst M.E is not included in the ‘at risk’ list (unless you are lucky enough to have a M.E ‘aware’ GP)
Love Sally
and Foggy (OBVIOUSLY xxx)
Foggy’s US/Canada adventures!
Foggy is now back in Wales with Kat after spending a whirlwind 9 days travelling between Toronto and Vancouver (Toronto, Sudbury, Sault St. Marie, Schreiber, Dryden, Brandon, Swift Current, Calgary, Salmon Arm, Vancouver – see pics below), we’ll have an updated mileage figure in a few days. He’ll be back home in Foggy HQ for a restful couple of days before heading off to join Ryn and John on their Caribbean Cruise!
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