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.
ME Research UK
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.
Invest In ME Research
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.
WAMES
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.