Burnout has been the recurring theme in every collaborative CEO/founder meeting I’ve sat in on over the past month or so (or the “third sector”, “VCSE”, “nonprofit world”… whatever we’re calling it this week). Not as a passing comment, but as a steady undercurrent. You can hear it in the tone of voices, in the pauses, …
Dear Secretary of State for Health and Social care, and Minister for Public Health and Prevention, Across the UK and internationally, clinicians and patient communities are observing a deeply concerning trend: individuals who experience multiple viral infections within a short period are increasingly developing long‑term, debilitating conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S.). One …
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 …
Dear unpaid carers, Today, on International M.E. Awareness Day, I am in awe of each and every one of you. I’m writing this, thinking particularly of someone truly remarkable – Shauna. Shauna, your unwavering love and dedication to Row shines so brightly. To see your strength as you navigate the immense challenges of caring for …
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 …
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 …
**Sensitive topic** From the outset, I want to make it clear that I consider myself to be in a place of privilege where this cost of living crisis is concerned. I wrote about my own personal financial situation a few years ago, and those circumstances have not changed. I am fortunate to have a good …
This blog was inspired by a tweet I saw yesterday from a ‘social worker’ in a thread about Long Covid. I took a screenshot of their tweet and my response, I hope the person who tweeted these remarks has the decency to delete their post as it is highly stigmatising and prejudicial to those with …
Since the start of my advocacy back in 2014, it has been very clear to me that many people in the wider world, outside of our M.E bubble, don’t care about Myalgic Encephalomyelitis because it doesn’t affect them personally. They don’t know anyone with the illness (that they are aware of – nondisclosure, anybody?!) and …
