Happy New Year! I hope you all had a restful festive break. I took a few weeks away from M.E. Foggy Dog’s work over the Christmas period to recharge, but as many of you know, the wheels never truly stop turning. Even while resting, my mind was busy reflecting on our journey and where we …
A shadow is looming over the disabled community: the potential return of widespread, mandatory face-to-face assessments for the Personal Independence Payment (PIP). While the world has tentatively embraced a “new normal” post-pandemic, for many disabled people, a key accessibility measure introduced during the crisis is under threat. The push by some MPs to reinstate in-person …
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 …
Living with M.E. (Myalgic Encephalomyelitis) presents daily challenges that are often invisible and misunderstood. For too long, our community has faced systemic barriers in accessing the support we desperately need. Now, more than ever, it’s vital that our voices are heard by those in power, and that’s why contacting your Member of Parliament (MP) this week …
Hi, I have a fuzzy brain this afternoon and whilst attempting to get a few ideas down on paper (email) to sort M.E. awareness artwork, I used Gemini (AI) to see if I could come up with a prevalence of M.E. in my hometown of Portsmouth. The M.E. Awareness Month poster will be displayed in …
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 …
