Bedfordale is home to a truly inspiring person; Jodi Bassett is a young person who has achieved as an artist and writer while suffering with a debilitating condition known as Myalgic Encephalomyelitis (ME).
Jodi's illness has made life a real challenge. Despite suffering from this debilitating condition since 1995 at the age of 19, Jodi is able to spend time at a keyboard while lying down and has used this time to run an on-line world newsletter and website on Myalgic Encephalomyelitis. She has now has completed a book on this subject entitled 'Caring for the M.E. Patient'.
The book outlines her story and how thousands of patients across Australia and the world undergo enormous suffering with M.E. Jodi describes how people's lives can be made worse by medical misdiagnosis which can leave them with suffering and a feeling of desperation. M.E. carries with it a social stigma and medical ignorance as despite patients suffering from a range of abnormalities which may be tested for, and the disease sometimes being fatal, they may be accused of suffering from an 'imaginary illness' as M.E. is often incorrectly said to be the same thing as 'Chronic Fatigue Syndrome.'
M.E. is an acute onset neurological disease which is similar to MS and polio and which occurs in epidemic and sporadic forms. Some of the symptoms that Jodi has include: disturbed sleep, headaches, cardiac problems (including POTS), neurological and cognitive dysfunctions, problems being upright and painful muscles and joints. In her book Jodi reveals her own battles with the medical profession and how mistreatment has left her bedbound for the last decade. All of her writing has been done from her bed, using a reclining laptop stand, and Jodi is on average able to write for only a half hour per day. She has been too ill to leave the house for over 6 years, although her condition has recently begun improving very slowly.
She recounts some harrowing stories of disability and desperation. She also provides helpful information for anyone who deals with M.E. patients such as doctors, carers, friends and family members as well as patients themselves.
Jodi's book is mostly about how to make things better. It provides practical ways for patients and families to recognise what they are facing. This new book also provides information on how to test for M.E. for doctors, and guidelines for carers and includes some helpful check sheets to help patients measure their disability levels over time.
The forward to this book was written by Dr Byron Hyde of the Nightingale Research Foundation in Canada one of the world's most experienced M.E. experts. Dr Hyde writes: 'Jodi is a very courageous young woman. I recommend her book to all and wish it every best success.'
So how has Jodi managed to do this while in the grip of this illness: 'I try not to let all the awfulness that comes with having this condition get me down too much. M.E. is something you try to kick in the shins a few times and then quickly run away, rather than overcome through perseverance. It's that sort of thing, but still, small victories are still victories, that's for sure! That I have been able to write this book, bit by tiny bit over 7 years feels like a miracle. Some days I can't even read any of my own book I'm so ill, let alone believe I wrote any of it! I hope so much it'll help other M.E. patients not have to suffer as much as I did. That would be so wonderful.'
Click here to view a scan of this article as it was printed. Unfortunately this newspaper does not have an online edition and is print-only.
JODI Bassett has published a book she has worked on for seven years while being house-bound by Myalgic Encephalomyelitis (ME). ME is a neurological disease causing cardiovascular, immune and central nervous system abnormalities, and Ms Bassett said sufferers were often misdiagnosed and therefore mistreated.
“There are patients out there far more ill than me that can barely speak or type at all,” she said. She said Caring for the ME Patient was part of her advocacy work for sufferers, and gave patients, doctors and carers advice to help deal with the disease.
“That I have been able to write this book, bit by tiny bit, over seven years, feels like a miracle,” she said. “I hope so much it wifi help other ME patients not have to suffer as much as I did. Seeing the book in print for the first time was pretty wonderful too.”
Ms Bassett, whose parents care for her at their home, said she became ill in 1995 when she was 19. “One day I was healthy and fulfilling my life dream of going to art school and the next I was severely ill,” she said. “But being a bit less bed-bound the last few years is really wonderful.
“Cooking myself an egg makes me feel like I’m bursting with happiness. I have to have hope that one day I will live independently, so that I can go on.”
The book is available from The Hummingbird Foundation website www.hfme.org.
The excellent article in the Comment News can be viewed by clicking on thislink.
Hello, my name is Jodi Bassett and I have an illness called Myalgic Encephalomyelitis. I am bedbound but have recently managed to write a book to help other patients with M.E.
This month sees the release of a book which discusses the enormous suffering of thousands of Myalgic Encephalomyelitis patients in Australia and many more worldwide. The book describes how people’s lives can be made worse by medical ignorance and abuse, which leaves them with lives of quiet desperation and immense distress.
The author of the book ‘Caring for the M.E. Patient,’ Western Australian artist, writer and patient advocate, Jodi Bassett, suffers from M.E. herself.
Jodi provides helpful information for anyone who deals with M.E. patients, such as doctors, carers, friends and family members, as well as patients themselves.
Jodi discloses her own battles with the medical profession and how mistreatment has left her bedbound for the last decade.
Most of all, this book is about how to make things better. It provides simple ways for patients
and families to recognise what they are facing, guidelines for carers and information on how to test for M.E. for doctors. ‘Caring for the M.E. Patient’ also includes check sheets to
help patients measure their disability levels over time.
The foreword to this book was written by Dr Byron Hyde, of the Nightingale Research Foundation in Canada. Dr Hyde is the world’s most experienced M.E. expert and has
studied both epidemics and individual cases of M.E. for over 30 years.
Dr Hyde writes: “There is so much false information that is picked up and disseminated. Any
attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plough through this field of weeds.
“Jodi is a very courageous young woman, who not only runs one of the few, balanced online ME. world newsletters and websites, but recently has completed a serious book on the subject of M.E."
“This book deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control. I recommend her book to all and wish it every best success.”
‘Caring for the M.E. Patient’ makes it clear that politics and financial interests can too often heavily influence, or even control, understanding of an illness. This can easily mean that patients too ill to speak out in more than a whisper become silent and isolated victims and have to struggle to be given basic respect, let alone proper care.
While this book is especially important for anyone dealing with M.E., it is also a timely reminder to all those who have contact with illness and disability that it is always important to begin patient care with a willingness to listen.
More information is available from www.hfme.org/caringforthemepatient.htm
Click here to view the article in the Valley Reporter.
An excellent new article on M.E. titled 'Misdiagnosing M.E.' has been published in Mindfood magazine, authored by Rachel Eldred.
The article includes an interview with me (Jodi Bassett), plus world leading M.E. expert Dr Byron Hyde. The article also discusses the illness and struggles of Australian M.E. patient Josie.
Journalist Rachel Eldred is to be congratulated for producing such an intelligent and fact-based doscussion of some ofthe issues facing M.E. patients and involving correct diagnosis of M.E. and also the misdiagnosis or non-diagnosis of 'CFS' and why this wastebasket diagnosis is not helpful to patients.
The article can also be viewed on this website.