World-renowned paediatric ME/CFS specialist Dr Nigel Speight discusses a disturbing scenario: severely ill young people with ME/CFS and their families are persecuted by the healthcare professionals. This is a difficult video to watch, but it is incredibly important. https://www.youtube.com/watch?v=gAoQeyTXWWQ
Category: severe ME
Malnutrition and ME/CFS: the NHS is still getting it wrong.
This article was updated 13 February 2024. It's happening again. The young woman was so weak she could barely tap out a few words from her hospital bed, but she wanted to let the outside world know what was happening to her. The doctors had decided to take away her NG tube. They'd decided her… Continue reading Malnutrition and ME/CFS: the NHS is still getting it wrong.
A mother of a child with severe ME/CFS describes troubling experiences of medical harm and accusations of abuse in healthcare settings
Children with severe ME/CFS and their families all too often face misunderstanding and accusations of abuse in healthcare settings. There is little awareness of these experiences, in part because many families are understandably unwilling to share their stories. I'm very grateful to Tina Rodwell, who is a full-time carer for her son Angus, for sharing… Continue reading A mother of a child with severe ME/CFS describes troubling experiences of medical harm and accusations of abuse in healthcare settings
New free short module on severe ME/CFS
In honour of Severe ME Day (8 August) Dr. Nina Muirhead of Doctors with ME has teamed up with Learna to offer new educational content on severe ME/CFS. 25% of people with ME/CFS have the severe form of the illness. They are profoundly ill and have complex care needs, yet few healthcare professionals receive training… Continue reading New free short module on severe ME/CFS
A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS
I spoke with Sarah Boothby over zoom on 19 May, 2023. Our discussion was wide-ranging, and I've cut down and rearranged what was said for length and clarity. Maeve's story is profoundly upsetting, and discretion is advised. Maeve Boothby-O'Neil. I requested a photo and received this with the note: "She did not want to be… Continue reading A life cut short by medical neglect: interview with Sarah Boothby, whose daughter Maeve died at 27 of severe ME/CFS
Doctors’ lack of training leads to malnutrition danger for patients with severe ME/CFS
Update: as of March 1, Alice Barnett has had a feeding tube inserted and is receiving nutrition. Some patients with very severe ME will require tube feeding, either enterally or parenterally. There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may… Continue reading Doctors’ lack of training leads to malnutrition danger for patients with severe ME/CFS
ME/CFS Medical Education Campaign 