Author Archives: wames
ME/CFS Delivery plan: Unhelpful language
Language can hurt “The way language is used can frustrate or upset people who have ME/CFS.” This is one of the discoveries made by the Working Group who have developed the draft English ME/CFS Delivery Plan: My full reality: … Continue reading
500 miles for ME: Carer Rob raises £1,000 for WAMES!
500 miles for ME – Rob raises £1,00 for WAMES Rob began his challenge in June – to walk 500 miles for ME over the course of 100 days, to greet the sunrise at Paxton’s Tower, near Carmarthen. … Continue reading
MEA finds low opinion of NHS services for ME in Wales
MEA Count ME In survey of health and social care for ME/CFS and Long COVID 7,303 people in the UK completed the ME Association’s survey: 85% (6,208 people) had a diagnosis of ME/CFS 10% (730) had a diagnosis of … Continue reading
Energy Limiting Conditions: challenging disbelief & disregard (2)
Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 2 A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health … Continue reading
#DecodeME DNA study – the final push!
#DecodeME – sign up by 15 November 2023 It is now one year since the launch of the world’s largest DNA study for ME/CFS and the #DecodeME team have announced the final date to sign up. MORE participants are … Continue reading
Energy Limiting Conditions: challenging disbelief & disregard (1)
Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 1 A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health … Continue reading
Letter to those in a world untouched by ME, from Rachel
A letter to the world This is a piece of prose I wrote in the early years of living with ME. I remember feeling immensely frustrated when people in my life told me I looked well and was really … Continue reading
DePaul Symptom Questionnaire-Brief (DSQ-Brief): a brief screening scale for ME/CFS
A brief screening scale for ME/CFS Health professionals often use questionnaires to determine if a person has a particular illness. Prof Leonard Jason’s DePaul Symptom Questionnaire has 54 questions and takes much time and energy to get a full … Continue reading
Biomarker research: Developing a blood cell-based diagnostic test with Raman microscope
ME/CFS Biomarker is possible with Raman spectroscopy Researchers led by Prof Karl Morten in Oxford are confident they have found a suitable way of distinguishing between healthy people, other diseases and ME/CFS patients with high accuracy (91%), and can further … Continue reading
Research: WASF3 – a protein that disrupts cellular energy production in ME/CFS
WASF3 – disrupting cellular energy production in ME/CFS Malfunctioning mitochondria have long been thought to play a role in ME/CFS but working out exactly what is wrong is taking time. You may hear mitochondria called “the powerhouse of the … Continue reading
