Last week was the worst week for me health-wise, for a long time, for a variety of reasons! Monday, I badly twisted my ankle on a pot hole in a car park in Guildford (see the innocuous looking pot hole above!), I opted to self-manage at home due to the 30+ degree heat. I am …
Stepping away from my day‑to‑day life for four days shouldn’t feel like preparing for a marathon, but when you’ve lived with M.E for nearly two decades, even the gentlest birthday‑year adventure comes with its own side dish of realism, turning every small plan into a carefully orchestrated operation. After 12 years of advocacy and 20 …
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, …
I’ve always been slow to join the party, I’m always 6 months to 2 years behind the latest trend (case in point, I became a fan of Bros in January 1992…….Bros fans – See what I mean?!) . My initial intentional use of A.I. (Artifical Intelligence) in 2024 was no different. Chat GPT had been …
I want to be clear at the outset about what this piece is, and what it is not. Who Gets a Seat at the Table? Lobbying and Access in the UK is not a commentary on global politics, international relations, or any particular social issue. Like most people, I hold strong opinions in my private …
This blog is an informal write‑up of my recent trip to watch a Northampton Saints rugby match. It’s taken me a full week to have enough energy to write it, which probably tells you everything you need to know before you start reading. Before anything else, I need to be clear that I rested as …
In the space of a week, two separate political decisions have shaken confidence in the UK’s commitment to providing stable, compassionate, and evidence‑based healthcare. One affects people with very severe M.E./C.F.S., who have once again seen promised specialist care pushed into the distant future. The other concerns the sudden withdrawal of specialist training posts for …
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 relatively new term is making the rounds in media healthcare coverage: “Cyberchondria” It’s being used to describe people who search their symptoms online and become more anxious as a result. On the surface, it sounds like a harmless bit of jargon. However, for the Myalgic Encephalomyelitis (M.E) community, already battling decades of dismissal, misdiagnosis, …
The UK Government’s 2026 shift toward non‑pharmacological treatments (NPTs) and expanded social prescribing is being promoted as a move toward “personalised care,” but for people with Myalgic Encephalomyelitis (M.E), this policy change carries serious and often overlooked risks. This blog explores why the M.E community is uniquely vulnerable in this new landscape, and why urgent …
