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 …
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 …
[Embargo: For Immediate Release] Subject: Urgent Call for a NHS Protocol for Severe Myalgic Encephalomyelitis (M.E) To Secretary of State for Health and Social Care Victoria Atkins MP I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National …
Hi, Since having COVID19 in March 2020, I have had a croaky voice that seems to flare on exertion. It’s now my main indicator that post-exertional malaise is on the horizon. My voice starts to ‘go’ about 20 minutes before I start feeling like I am moving in slow motion and my rainbow of symptoms …
Hi! I haven’t written one of these for a while. I haven’t felt able to write a spontaneous M.E-related blog that isn’t part of a wider campaign or doesn’t have a specific purpose. The world, and a big chunk of its residents, has got very serious and hardened. There seems to be very little light …
Hello, This blog is a continuation of the blog written on 23rd October 2021 about the difficulties encountered when trying to obtain copies of the meeting minutes of APPG meetings about M.E. Needless to say that a lot of emails have been received and sent since the 23rd October! I now have copies of the …
Long-standing Foggy Followers will know that I fairly regularly ‘step away’ from Foggy’s social media for a few days when everything gets a bit too much. I’ve been doing this increasingly more frequently over the past 6 months. I’m finding that, as a community, we have needed to be very reactive during the pandemic than …
*Foggy* Hi! This year, Team Foggy will be taking part in our 7th M.E Awareness Week since we became AWESOME! (ME Foggy Dog was launched in July 2014). This year, my P.A will be hosting a virtual ‘International M.E Awareness Day’ event. It’ the first time she’s ever hosted an event on Zoom so it …
Hi, Today marks the 13th anniversary of the start of my life with Myalgic Encephalomyelitis. Unsurprisingly, I won’t be having a party to mark the occasion. To clarify, it is not the 13th anniversary of having a diagnosis of M.E (I was diagnosed as having C.F.S by a GP 2 and a half years later) …
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. …
