Shake It UP continues – CAMPAIGN INFO This blog is a follow on from everything I said in this video 3 weeks ago. National Reporting and Learning System I contacted NICE to make sure that I wasn’t going to be pursuing this issue like a dog with a bone unnecessarily. I wanted to know – …
It’s been a long day of planning and researching for this benefit concert challenge so I’m cheating a bit, I posted this as a thread on X earlier but, as the algorithm means barely anyone will have seen it, and because many MEeps have left X for greener pastures, I am reposting it as a …
Myalgic Encephalomyelitis can happen to anyone, it does not discriminate in terms of age, sex, or race. It doesn’t care whether you have a ‘positive mental attitude’ or walk on the pessimistic side of life. You know THOSE people? THOSE people who say YOLO? (You Only Live Once) THOSE people who throw caution to the …
Hi! I thought I had got out of the habit of ‘grabbing rest’ but it seems to have made a return due to the hot weather. I have fond (NOT) memories of needing to ‘grab rest’ when I worked full time, making the most of every spare second in which I could lay flat and …
Hi, As I have said a few times on social media this week, the article in The Times and Action for M.E reinforced what I have been saying for 18 months with my Shake It UP campaign. I have had too many conversations with M.E patients and their carers in which I have been told …
Hi, Sorry I haven’t posted an update for a while but other than emailing Steve Barclay MP, Secretary of State for Health and Social Care, and sharing information about the petition left, right, and centre, I haven’t had anything to report. Until now. I wrote to the Care Quality Commission (ENGLAND) on the 15th November …
Hi, As a social entrepreneur with ME Foggy Dog, I started beavering away behind the scenes on a new campaign in mid-August 2021. I knew the NICE guideline publication was coming, I also fully anticipated a backlash and non-compliance to the recommendations. I pre-empted the publication and got to work. I believe in transparency so …
I’d like to start with an apology, because this probably isn’t going to be as eloquent as I would like and that’s because the ‘brain fog’ which M.E. sufferers know so well is one of my worst symptoms. For me, it’s less like a fog and more of a complete sense of mental disorientation which …
Getting a diagnosis of Myalgic Encephalomyelitis often takes years. My own diagnosis took well over 2 years and I have spoken virtually to sufferers who waited decades. This is partly due to a lack of awareness and knowledge of M.E within the medical profession – some of whom doubt that M.E is a ‘real’ illness. …
This blog was inspired by a tweet I saw earlier today. The person who wrote the tweet was asking why more M.E patients weren’t involved in advocacy work and she commented how much more progress could be made if more patients got involved. Before I get started I should make it clear that nothing I …
