What a strange year 2022 has been! So much potential but such limited ‘progress’ for our community.
One step forward, three steps backward is how it’s been rolling for ME Foggy Dog this year, mostly due to the political turmoil in the UK, movement on any issue has felt impossible at times. But, we have persevered and will keep on going even though we are starting to get bruised foreheads from banging our head against brick walls.
Something that struck me this week, despite having an appalling memory and cognitive impairment, I remember each and every Foggy-sitter and where they have taken Foggy on his adventures. I have no idea how I remember, I forget so much other stuff, but I do. Those who have engaged with Foggy over the years have given us many happy memories and those special memories keep us going when things aren’t going quite right. I may not have ‘spoken’ to you recently but I remember you and think about you often. Whether you are Kathryn in Canada, Kristina in British Columbia, Nigel (still LOVE your 2019 video), Karen, Wendy, Kat, Gill and Alison in the UK, Jac in Australia or Howard in New Zealand (to name a just a tiny few)….thank you for being part of Foggy’s adventures and for helping us in our quest to improve the lives of M.E patients with awareness and research funding. We wouldn’t be what we are today without YOUR support and engagement.
The Shake It UP campaign continues after 13 months of work. Irrespective of the NICE guideline, this reporting system to report harms from non-pharmaceutical ‘treatments’ is still needed. M.E patients are TODAY being told to increase their activity levels and/or take part in CBT as ‘treatments’. This issue has not gone away. As we are all aware Long COVID patients are now experiencing the same ‘treatments’ despite half of Long COVID meeting the diagnostic criteria for M.E. Please sign the petition (international) and take part in the wider campaign (UK residents) if you haven’t done so already. I would have loved to reach 10,000 signatures by this Christmas but it currently stands at 8740 signatures. Foggy and I would be grateful for every signature, letter to an MP, retweet, share, and like. There are now possibly between 800,000 – 1,000,000 M.E patients in the UK (rough guess – includes half of Long COVID who meet the M.E diagnostic criteria) and yet most of the signatures on the petition are international. Please help to spread the word – thank you.
One challenge that we are currently up against is social media. The shenanigans with the Chief Twit are meaning that we have lost Twitter Followers and our community is now scattered far and wide on many different platforms. The Chief Twit’s messing around with the algorithm means that many of you are not seeing our posts (you’ve told us). Can we suggest, if you want to stay up to date with ME Foggy Dog on Twitter, you sign up for notifications? Make sure you are following ME Foggy Dog (@mefoggydog) then click the bell icon next to the ‘following’ button on our profile. You will then be notified anytime we post something. Unfortunately, it is the only way to get around the algorithm. It’s frustrating for us as we do a heck of a lot of work but a lot of it isn’t being seen unless Followers actively seek it out.
ME Foggy Dog has now also joined Mastodon as a plan B IF Twitter finally gives up the ghost. We are not currently regularly posting on Mastodon but that may change in 2023. Please click on this invite link to follow us on Mastodon. We continue to also have social media channels on Facebook, Instagram and YouTube (all – @MEFoggyDog), don’t forget we also have an email newsletter (sign up in footer of the website – mefoggydog.org). In other words, there are plenty of ways to follow our adventures and campaigning!
In a few days it will be Christmas, we know this time of year can be upsetting for some for many different reasons (this year is particularly tough due to the cost of living crisis). We know you are there and are thinking about you. We are sending love and hope that you manage to find joy in small things during this festive period.
ME Foggy Dog are hoping to have an AWESOME 2023 and are keeping paws crossed that you will all join us for the ride!
Foggy and I wish you all a Merry Christmas, Happy Holidays, and hope you all have a healthy(er) 2023.
Love Sally
and Foggy (OBVIOUSLY)