‘House-or-bedbound’: Accurate Lived Experience, Not Offensive Language

Silhouette of a person against a window in the background

As our community navigates the complex and often brutal realities of energy-limiting conditions (ELCs) like Myalgic Encephalomyelitis (M.E.), we can sometimes find ourselves at the crossroads of language and lived experience. This was highlighted last week in comments posted in reply to a The Canary Facebook post that included these seemingly innocuous sentences in the …

Read more

Shake It UP – Formal Complaint re Negligence in Patient Safety

Close up shot of text on a red surface. Text reads 'complaint'

Hi All, As many of you already know, M.E. Foggy Dog had been campaigning since November 2021 with Shake It UP demanding the creation of a reporting system to report adverse events from non-pharmaceutical ‘treatments. The associated petition, which had 9011 signatures and was accompanied by many hundreds of personal anecdotes of harm, was closed …

Read more

Paralympic Games and Greater Inclusivity – A Work In Progress

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 …

Read more

Myalgic Encephalomyelitis, YOLO, and Being ‘Unfixable’.

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 …

Read more

Shake It Up: Email to Steve Barclay MP – Secretary of State for Health and Social Care

Campaign image - The words Shake It Up are written on a blue square. There is also a white heartbeat rhythm symbol and a heart shaped icon. IN a red triangle are the words 'Even non-pharmaceutical treatments can harm'.

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 …

Read more

Shake It Up Latest – Care Quality Commission

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 …

Read more