Discussions at Dawn
I’ve been recording a series of discussions at dawn(ish!) from Paxton’s Tower with some of the experts, as well as with each of the charities for whom I'm fundraising, in the hope of improving awareness and understanding of the illness.
Episode 1: What is M.E? With Dr. Nina Muirhead
ME Patient, Dermatology Surgeon, Director of Doctors with ME, Chair of CFS/ME Research Collaborative Medical Education Working Group, Forward ME representative, Expert Witness to UK National Institute of Health and Care Excellence. Author of the free ME/CFS online training module on Study PRN, which carries 1 CPD credit.
In this episode, Dr. Muirhead talks of her own experience as a person with M.E, outlines what we know about the causes and multi-system symptomology and their impact on the quality of life for M.E. patients. She describes the range of severity of the illness, including severe/very severe M.E. as well as her commitment to improving M.E education within the health professions.
Episode 2: Physical Exertion in M.E.
with Karen Leslie of Physios for ME
Karen Leslie, Chartered Physiotherapist specialising in neurology. Co-founder of Physios for ME (www.physiosforme.com)
Co-author: A Physiotherapist’s Guide to Understanding and Managing ME/CFS
In this episode, Karen explains what research tells us about the physiological problems in people with ME which cause such difficulties with physical exertion and lead to the debilitating cardinal feature of the illness, Post-Exertional Malaise (PEM) - an exacerbation of all symptoms: physical, neuro-cognitive-sensory. She describes how she and her colleagues, all very experienced physiotherapists, established Physios for ME, in response to their own personal and professional encounters with people with ME, and the inadequacy of existing understanding, training and provision. She outlines the kinds of strategies and support that physiotherapists can offer to help people with ME at various levels of severity.
Episode 3: WAMES
with Jan Russell, Chair of the Welsh Association of ME and CFS Support (WAMES)
In this episode, Jan talks about her own experience as a person with ME. She explains how the various regional patient support groups established WAMES to be a voice for people with ME in Wales, their families and carers, following the devolution of responsibility for Health and Social Services from Westminster to Cardiff (in 1999). She describes the battle people with ME in Wales have had because of the historic lack of recognition and understanding of the illness, and absence of funding for specialist services, but how Covid 19, in particular ‘Long Covid’, has more recently led to greater awareness amongst health professionals and decision makers. In 2023 the Welsh Government’s funding for Long Covid services was expanded to include patients with ME/CFS, and WAMES is currently liaising with health boards as they plan and implement their provision. Jan emphasises the need for these services to go beyond ‘fatigue management’, and provide adequately for ME as a serious multi-system illness which can present at a range of severity levels.
Episode 4: ME Research UK
The Welsh Association of ME & CFS Support (WAMES) is a charity which gives a national voice to people with ME, CFS and PVFS in Wales, their carers and families, in order to improve services, access to services, awareness and support.
WAMES is currently aiming to raise £1500 to build a new website.