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
With Sue Waddle, Trustee
It was Sue’s experience as the parent of a child with severe post-viral illness, eventually diagnosed as ME, a condition she’d never heard of, which led her to getting involved. She says, “I couldn’t believe so many people were so ill, and nobody was doing anything about it”.
MERUK was set up by two Scottish ME patients, a banker and a medical scientist, who’d decided the best way to ‘do something about it’ was through scientific research - to uncover the biomedical causes of the illness and potential treatments. Sue, a trustee of MERUK, talks about how the charity works, its wide range of research projects reflecting the multi-agency nature of the illness, and the importance of international collaboration.
Episode 5: Invest in ME Research
Invest in ME have kindly made this video for Discussions at Dawn. This amazing charity, founded by a small group of people with ME and parents/carers who saw a desperate need for biomedical research and decided to do something about it, now brings together the top ME researchers and clinicians from around the world at the annual IiMER International Research Conference and Colloquium. There’s an emphasis on high quality science and international collaboration, as well as encouraging and supporting the entry into the field of young researchers.
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.
To donate to this cause click on the button below, which will take you to the relevant JustGiving page.
Invest in ME Research's aim is to develop and sustain high-quality biomedical research into ME within a Centre of Excellence hub and with European collaboration with other institutes. This will lead to fundamental science being performed leading to multi-site clinical trials, improvement in standards and data analysis, the development of treatments, improvement of diagnosis and a more informed view of this disease amongst the media and the public.
This strategy will also improve education amongst clinicians and encourage more researchers to become involved in this disease.
To donate to this cause click on the button below, which will take you to the relevant JustGiving page.
The principal aim of ME Research UK is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis.
They also have a mission to Energise ME Research, which involves raising awareness of the need for biomedical research into ME/CFS globally, and providing high quality information on all aspects of the illness for a wide range of audiences – from summarising and appraising scientific literature on ME/CFS to informing the policy agenda.
To donate to this cause click on the button below, which will take you to the relevant JustGiving page.
