shocking 3D room scans show life with severe disease
A former architecture student living with severe myalgic encephalomyelitis (ME/CFS) has created a series of 3D room scans to show what life with the devastating disease is like. From the…
ME/CFS charity has to apologise over ‘misinformation’ in care plan
One of the biggest UK myalgic encephalomyelitis (ME/CFS) charities Action for ME (AFME) has been promoting a document pushing misinformation based on a notorious harmful psychologising model for treating people…
Paralympics GB under fire for non-inclusive #EveryBodyMoves
Sally Callow is the founder of campaigning social enterprise ME Foggy Dog which raises funds for a chronic illness. Currently, she is on a mission about the Paralympic Games. This…
ME/CFS and long COVID face a deadly morass in modern medicine
Historically, medicine has had a problem with women, especially those who were not married. Sounds unrealistic? The nineteenth century wasn’t that long ago, and many diagnoses and treatments of physical…
ME/CFS leaves you grieving for the life you have lost
In silent darkened rooms where millions lie, the world turns unaware of profound loss of life. myalgic encephalomyelitis (ME/CFS) is not just a disease. It takes lives. While the stories…
Gastroparesis and the Ehlers-Danlos syndromes and ME/CFS
August is Gastroparesis Awareness Month. However, two conditions gastroparesis is often found in are also often overlooked: EDS and ME/CFS. Gastroparesis Awareness Month: what is it? Gastroparesis is a disorder…
Maeve Boothby O’Neill’s inquest was a whitewash and disaster
On Friday 9 August, the inquest into the death of very severe myalgic encephalomyelitis (ME/CFS) patient Maeve Boothby O’Neill concluded that she died of natural causes because of her ME.…
patients raise awareness, charities raise eyebrows
Another year, another Severe Myalgic Encephalomyelitis (ME/CFS) Day will pass with NHS hospitals abusing, neglecting, and psychologising patients living with the devastating chronic illness. Thursday 8 August was Severe ME…
Severe ME day campaign calls for public support for NHS protocol
Thursday 8 August is Severe myalgic encephalomyelitis (ME/CFS) Day. And this year, grassroots ME organisations will launch a new campaign to demand vital change for people living with this devastating…
ME charity posts article in affront to her memory
It’s the second week of an inquest into the death of Maeve Boothby O’Neill. In 2021, the 27-year-old died of myalgic encephalomyelitis (ME/CFS). However, it wasn’t the devastating disease alone…
Dr Weir gives evidence as NHS trust looks on edge
It has been day three of the inquest into the death of Maeve Boothby O’Neill, who died of myalgic encephalomyelitis (ME/CFS) on 3 October 2021, aged just 27 – but…
Maeve Boothby O’Neill’s inquest opens in Exeter
Monday 22 July was the start of an inquest into the death of a young woman with myalgic encephalomyelitis (ME/CFS). As written in MEpedia, Maeve Boothby O’Neill: was a young…