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ME/CFS Australia Ltd
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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury North,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

ME/CFS South Australia 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 South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, 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.

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YouTube ME/CFS group

Friday 21 November 2008

YouTubeME/CFS Awareness - My Story is the name of a group of people who have posted YouTube videos about their experiences with ME/CFS.

In the words of “kazoom”, the group’s founder:

I have formed this group to raise awareness of the affects of Myalgic Encephalomyelitis on patients and their loved ones. The idea is to make a collection of patient testimonies of how the illness affects their lives, and hopefully use it to get more media attention.

Myalgic Encephalomyelitis is an illness that is still little understood and often denied by governments and insurance companies. It has been recognised by the World Health Organisation as a neurological disease for over 50 years. But in the 1980’s the condition was renamed Chronic Fatigue Syndrome by the CDC. The new criteria that the CDC drew up, majored on one very non specific symptom - Fatigue. Soon other criteria were drawn up in various parts of the world, all of which majored on fatigue and lead the way for inclusion of people with psychiatric and other problems. Today ME/CFS is largely treated by governments and the medical profession as being a psychiatric condition, even though there are over a thousand peer reviewed papers that show very real physiological changes in the central nervous system of those with true ME/CFS. This psychologizing of ME/CFS has lead to the widespread development of inappropriate psychiatric treatments and caused more suffering and even abuse of patients suffering from ME/CFS.

It is my hope that this collection of testimonies will help to raise awareness of our plight. Stories from ME/CFS patients those who have suffered under the hands of psychiatric treatments like GET and CBT would be of particular help. Please don’t worry too much about the quality of your video. Your story is more important than a slick video.

YouTube: ME/CFS Awareness - My Story

 


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