 |
Email the Society |
 |
Donations |
ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001
Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP: Contact Fibromyalgia SA at the Arthritis Foundation of SA 118 Richmond Road, Marleston 5033 Ph: (08) 8379 5711 |
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
|
Disclaimer
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
| Become a Member | |||
|
Vision magazine now online
Sunday 15 April 2007
The Young ME Sufferers Trust publishes Vision, a magazine for young people, families and professionals.
The Trust has provided us with a press release regarding their latest issue:
THE LATEST ISSUE OF VISION HAS NOW BEEN PLACED ONLINE at www.tymestrust.org/tymesmagazine.htm.
What’s in this issue? Under the summary is an excerpt from our interview with Byron Hyde MD, author of the Nightingale ME Definition.
• Vision : Project Update
• In The Spotlight : “Schools swept by ME plague” (The Guardian)
Plus Sky News – 10th Anniversary of the Dowsett/Colby study
• Irish ME Group : Partner Group reviews College of Psychiatrists’ CFS publication
• Susie’s Springtime : More amazing artwork for you to colour
• Why CFS is not ME : The Trust’s submission to NICE
• Byron Hyde MD : Author of the new Nighingale ME Definition
• Letters of Commendation : Would you like us to recognise your best teacher?
• Super Spider at Large Again : More heroic holidaying
• ME Awareness Day : Music and poetry at Brentwood Cathedral
• Plus contributions from young people and families
THE BRIEF (2007-1) An information pull-out for older readers
• SEN or Not? Two parallel systems for modified education
“I was recently asked: ‘If you are a sick child you do have special educational needs, don’t you?’ Well no, not officially! It’s a different system…”
• Quotes : The Nightingale ME Definition
“ME is a clearly defined disease process. CFS by definition has always been a syndrome…”
• Focus on : Ten Points on the Education of Children with ME
“I am so glad to say that your staggered educational plan has worked – and is working – for my daughter…”
• Protecting Children : Child Protection Issues
INTERVIEW EXCERPT
The author of the Nightingale ME Defintion talks to Jane Colby.
INTRODUCTORY QUOTES
“A lot of the people who had actually investigated specific ME epidemics found the American definitions for Chronic Fatigue Syndrome quite aberrant.”
“They really were not describing what we were seeing as ME patients. We were dealing with a post-infectious illness that was chronic, severe, and involved the central nervous system.”
JANE : “Why did you make a speciality of ME patients?”
BYRON : “It was pure accident. I had polio as a child and was laid up for about a year. I had a repeat encephalitis in 1984 and lost my ability to walk again and it took me a while to recover. So I was stuck in bed, having enormous difficulty getting around, even to the washroom, so I wrote a book. And then I had a friend come - an Irish physician. He said, ‘It’s too bad you’re ill because we’re having this great party in Montreux and I’m sure you would have liked to come!’ And he went off to the party.
“It was a party of about twenty people, mainly doctors, nurses and social workers. Somebody at the party had a viral infection and they all came down with this strange illness. Half of them got better almost immediately, within a matter of days, but about twelve of the twenty became so disabled that they were bedridden. When I heard about this, I didn’t quite understand what was going on, and they certainly didn’t understand what was going on.
“Then my daughter came down with what I thought was a similar illness, a week or two after. She got well over a period of a month or so on her own, but as soon as she fell ill I phoned down to the Centre for Disease Control [CDC] in Atlanta and asked them if they had any idea what this was, and they said no, but there was someone at Harvard - Charles Poser, an expert in MS. They referred people to him because it had a lot of similarities with MS.
“I phoned him and he put the name ‘ME’ on it. This was the early days when there were not many MRI scanners around - we’re talking about 1984, 85. They were just starting, and CT scans missed a lot of cases of MS. So he was seeing all these early cases of ME, and saying, ‘This is not MS, this is something entirely different, similar in many respects, but different.’
[…]
“I gradually found an increasing number of people who knew other people who had investigated ME epidemics in the past. It became obvious to me that what we were dealing with was a post-infectious illness that was chronic, severe, and involved the central nervous system…”
To read the complete interview, go to www.tymestrust.org/tymespublications.htm.
Previous Page |
