Website with videos created by Natalie Boulton & Josh Biggs. Wellcome Public Engagement Fund Award. Professionals and patients explain key aspects of ME/CFS.
Jan 26, 2022 • 6 tweets • 2 min read
I remain hugely concerned about the people who became ill with ME as children, ten, twenty, thirty or more years ago: whose parents care for them, provide for them and enable them to have some meagre quality of life. They remain pretty much invisible and immensely vulnerable.. 1
as their parent-carers become too ill to care for them, or die. There is no safe provision available – for the kinds of environment and carer support needed in order for them not to relapse severely – ....[In] the recent Norwegian survey into the course of ME they found that.2
Nov 20, 2021 • 6 tweets • 2 min read
Me too.. and Criona's partner Mike. Criona sent me this in 2015 to be shared.. "In 2009 Mike was given the 'all clear' from the standard cancer test that many men are given, but was diagnosed with M.E. By 2013 his energy had deteriorated dramatically. 1/4 #pwME#MECFS#MedEd
By January 2014 he was bed bound. He would not go near a doctor because of Sophia's experience. He was frightened that they might section him in a mental hospital, as they had Sophia. In March I could no longer bear to see him suffering and in so much pain. 2/4
Nov 8, 2021 • 7 tweets • 3 min read
1. I feel very sad and angry, having watched Graham McPhee's funeral this afternoon. All these years gone. I want to share a section from the interview we did with him. "Bob (Courtney) was helping a number of quite eminent people get to grips with the complexities of it because
2. it's a very tangled study. I mean it’s terrible, but it’s tangled. And there are lots of things in it that you can use. He was trying to get lots of people to understand it better. There was a lot of people reacting against the PACE study, so another friend Janelle Wiley
