ME/CFS Helpful Hints for Daily Living
Introduction
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a serious and debilitating illness which can affect males and females, children and adults, with devastating consequences for the sufferers, their carers, partners, families and friends.
Myalgic Encephalomyelitis, which includes CFS, is classified as a neurological disease in the World Health Organization’s International Classification of Diseases. (Bruce M Carruthers, Marjorie I. van de Sande. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document p1.).
The impact in the worst stages of ME/CFS is usually overwhelming for sufferers, their families and carers. A significant proportion of sufferers will remain quite debilitated and need varying levels of care and support for a considerable time.
How well sufferers cope with ME/CFS is dependent on a number of factors, including:
- Access to appropriate community support services and advice
- Level of awareness and understanding of ME/CFS by service providers, families, friends and carers
- Learning to manage the illness by achieving the correct balance between rest and energy expenditure
Support on a number of levels is required, including the following:
- Physically
How to manage functional tasks on a daily basis - Mentally
How to maintain mental health and prevent depression - Socially
How to keep contact with the outside world, and prevent social isolation - Spiritually
How to draw on our inner strength to maintain hope and spiritual faith in ourselves, God, and the world around us.
The lack of a co-ordinated package of care to address all of these issues poses an enormous challenge for those facing a protracted convalescence for the first time.
This website is a collection of practical hints on how to cope with and manage ME/CFS on a daily basis, and to assist in achieving a better quality of life; it does not attempt to cover possible causes or treatments. As the illness is of an evolving nature affecting sufferers in many different ways, the list of practical hints is a guide only to encourage sufferers to find new or better ways of coping. It will also assist families, carers, friends, and health care practitioners to find appropriate services.
There is information on where to look for help from a range of community resources with contact details. These services are available in Victoria, Australia, and similar services may exist in other places, but some detective work may be required to locate them.
If you are suffering from a very severe form of ME/CFS and totally bedbound and homebound, these websites offer much helpful and relevant information for severe sufferers:
M.E.Tips and Severe M.E. Website
www.metips.co.uk
A Hummingbirds Guide to M.E.
By Jodi Bassett
www.ahummingbirdsguide.com
Not Done Living Yet
By Ricky Buchanan
http://notdonelivingyet.net
The 25% M.E. Group
www.25megroup.org
If you are too ill to organise services for yourself, a relative, friend, carer, or independent organisation, may be able to help you to arrange support services.
Commonwealth Carelink Centres can put you in touch with a wide range of community, aged care, and disability services, and can be a good starting point.
Freecall 1800 052 222,
www.commcarelink.health.gov.au
The Aged Care Assessment Service (ACAS) can help people based on their need for support services. ACAS can identify and refer you to the community services appropriate to your situation, and their professional assessment and referral provides a supportive basis for your service requests. You can ask your doctor to refer and give you the local contact number for ACAS, or phone Commonwealth Carelink Centre, Freecall 1800 052 222 for your nearest ACAS.
If you are still having difficulty gaining the services you require, you may need the assistance of an Advocate from an Advocacy Agency to negotiate on your behalf.
Refer to:
Disability Services Victoria
(Information brochures are available in a range of languages).
www.disability.vic.gov.au and click on Advocacy and Rights.
Freecall: 1800 783 783 and ask to speak to an Intake Worker for your nearest Advocacy Agency contact number.
Commonwealth Carer Resource Centre
Freecall: 1800 242 636
www.carersaustralia.com.au
A Translating and Interpreting Service is available if you need assistance with a language other than English on Phone : 13 14 50.
For Clinical Guidelines, refer to:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
A Clinical Case Definition and Guidelines for Medical Practitioners
An Overview of the Canadian Consensus Document
Bruce M.Carruthers
Marjorie I.van de Sande 2005.
Pdf file available at www.ahmf.org
Hardcopies can be requested from:
CFS/ME VICTORIA:
Phone: (03) 9888 8991
email: mecfs@vicnet.net.au
www.vicnet.net.au/~mecfs