Christine Miserandino’s ‘Spoon Theory’ helped chronically sick people explain their limited energy reserves to non-chronically sick people. However, in recent years, our precious energy reserves haven’t solely been used up by daily life, but also actively stolen by an all too frequently hostile world. This is where the Knives Out Theory comes in—people living with …
Hello, I was unfair to Andrew Gwynne MP during Friday’s Instagram/Facebook Live and that is why I am writing this blog. I’ll admit that I skim read his letter response, received on 4th November 2024, as I am so used to getting generic replies it went in one eye and out the other. I only …
This blog follows on from this ‘open letter’ I have posted the response received from Paralympics GB / Every Body Moves on social media in recent weeks but am now actioning the next step. Response received 7th September 2024. Dear Sally, Thank you for taking the time to write to us. We appreciate your concerns …
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 I said in this video, the responses received from Lord Kamall and NHS CEO Amanda Pritchard have so far not addressed my concerns about the need for this new system to report harms from non-pharmaceutical ‘treatments’. I have not yet received a reply from Sajid Javid MP – Secretary of State for Health …
Hello, Many of you will have seen my video from this morning, it has lead to a lot of questions from patients and a lot of alternative suggestions have been added into the mix. I am writing this blog partly to get my own thoughts into some semblance of order but also to give a …
