Severe ME/CFS Information Pack


Severe ME/CFS is a cruel and physically disabling illness which wrecks the lives of thousands in the UK and millions worldwide. I know because it took my life for several years. One of my promises back then was to do all I could, when able, to help the Family and Friends of Severe ME/CFS Patients understand the nightmare that their loved ones are going through; what Patients and their Carers have to battle against every day, and how the understanding, support and compassion of Family and Friends can make such a dramatic difference to their speed of recovery. Hence this Blog and My Severe ME/CFS Information Pack now available as an e-book. I do so hope that both help guide you through the hellish maze that is Severe ME/CFS

Email understandingsevereme@hotmail.co.uk for details

Fantastic ME letter published in Daily Telegraph

SO GREAT TO SEE ALL THE M.E. CHAMPIONS JOINING TOGETHER TO EFFECT CHANGE FOR M.E. SUFFERERS...THANK YOU...

Breaking the ME enigma
SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.
Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.
Such lack of understanding even extends to blaming parents for the severity of their child’s illness.
It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.
Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.
Countess of Mar
Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot
Operations Director, ME Research UK
Jane Colby
Executive Director, The Young ME Sufferers Trust
Anne Faulkner
Hon Director, CFS Research Foundation
Tanya Harrison
Chairman, BRAME
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr
Consultant Senior Lecturer, St George’s, University of London
Simon Lawrence
Chairman, 25 per cent ME Group
Kathleen McCall
Chairman, Invest in ME
Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor
Derek Pheby
National ME/CFS Observatory
Neil Riley
Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer
Chief Executive Officer, Action for ME
Des Turner MP
Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows

Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME/CFS

2 comments:

Abigail said...

Thank you Cathy for your great blog x

rainbowflute said...

TAG! You're it! This is a bit of fun!

Visit http://rainbowflute.blogspot.com/ to find out more!

Love Teri xx

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