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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.
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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.
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This article is also available as a PDF file (guidelines.pdf – 37KB)
Shame on the RACP CFS Guidelines Working Party
1: What do we believe...?
2: What do the guidelines state...?
3: Theoretical problem...
4: What does the RACP believe...?
5: Who is this document aimed to help?
6: Selective information
7: Management of ME/CFS
8: Impediments to recovery
9: Exercise
10: CBT
11: Issue of biases
12: Overlapping conditions
13: Chemicals
14: Confusing comment
15: Sleep
16: Scholastic quality of document
17: Who controls this illness?
18: We deserve better
19: Repercussions
20: In conclusion
Talking Point
September 2001
In this issue:
Response
to Guidelines
Superannuation and Insurance
Volunteer Positions
ME/CFS/CFIDS Project
Support Groups
Shame on the RACP CFS Guidelines Working Party
The ME/CFS Society’s response to the Chronic Fatigue Syndrome Guidelines, Revised Draft 2001
By Paul Leverenz
On behalf of ME/CFS Australia (SA) Inc.
July 31, 2001
RACP
CFS Guidelines Project
RACP
6/352 Kent Street
Sydney NSW 2000
Fax 02 9299 6626
Email: hpu@racp.edu.au
ATT: RACP Working Party – Chronic Fatigue Syndrome Project
ME/CFS Australia (SA) Inc. thanks the RACP for copies of the Chronic Fatigue Syndrome Guidelines Revised Draft 2001. It is unfortunate, however, that we have been only given one month to comment on them – as a result this response has been rushed and is nowhere as thorough as it could have been. It is disappointing that such an unprofessional, un-collaborative approach should appear to be taken with regard to such an important document.
Persons with this debilitating condition and clinicians treating them deserve something much better. It is indeed a shame that this project, at a considerable cost to the taxpayer, has bumbled along only to produce this. In this document we shall argue that this whole project be re-evaluated for ethical, legal, scientific and professional reasons.
What do we believe about Chronic Fatigue Syndrome?
To understand our reaction to this document and for us to communicate clearly it is helpful you know where we are coming from.
We believe that Myalgic Encepathomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a debilitating condition. There is no diagnostic test, no curative treatments and the aetiology is unknown. Often ME/CFS is brought on following a viral infection, or chemical exposure. In no way does it have a psychogenic causation. Symptoms can cause varying degrees of impairment, some are mildly affected, others are virtually bedridden – some have died from the disease. Although some symptomatic relief may be found, recovery from the condition is indeed spontaneous – but it seems that many do not fully recover, and carry a measure of disability for life. Personal motivation and determination plays no part in the speed of recovery. The duration of the condition can vary from a year to a lifetime. In research we would tend to support the use of the Fukuda (1994) definition – but would actually prefer something a little stronger to ensure only genuine ME/CFS patients are selected.
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