Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (M.E/C.F.S.)
M.E./Chronic Fatigue Syndrome Society (SA) Inc.
GPO Box 383
Adelaide SA 5001
Rm 420 4th Fl
33 Pirie St
Adelaide SA 5001
Ph: (08) 8410 8930 (Information & Counselling)
(08) 8410 8929 (Administration 10am-4pm Mon-Fri)
Fax: (08) 8410 8931
Email: sacfs@sacfs.asn.au
Web: http://sacfs.asn.au
ME/CFS is a physiological disease. Research has found that ME/CFS patients have significantly increased numbers of eosinophils (white blood cells associated with allergy) and alterations In the size and shape of their red blood cells. To solve the ME/CFS riddle a multi-disciplinary team approach is essential, requiring persons skilled In biochemistry, toxicology, microbiology, immunology and medicine. Research Is continuing.
What Is M.E./C.F.S.?
M.E./C.F.S. is not a clearly defined illness in that currently there is no diagnostic test, and diagnosis is by having a number of a defined collection of symptoms. Other possible causes for the symptoms must first be eliminated by diagnostic tests.
It is extremely variable in Its effects, affecting men, women and children of all races and social backgrounds.
At the moment there are no specific treatments but many people feel better If they can get adequate rest and if they make certain changes to their lifestyle.
What Are The Symptoms?
Initially you may have a flu-like illness with respiratory or gastrointestinal symptoms. Then follows undue muscle fatigue, exhaustion and a feeling of being generally unwell.
Other accompanying symptoms are:
* mild fever and sore throat;
* muscle pain and weakness;
* severe pain in the head, neck and shoulders and headaches which differ from normal In severity or type;
* poor concentration and short term memory aberrations with “brain fog” (difficulty with tasks usually accomplished easily);
* disordered sleep patterns;
* painful lymph nodes (sometimes with noticeable swelling);
* chemical intolerances and sensitivities to food and other substances (e.g. certain smells triggering headaches or nausea).
There can also be distressing psychological effects, at times you may feel emotionally quite fragile. The symptoms of M.E./C.F.S. resemble those of other debilitating Illnesses so your doctor will want to exclude other possible causes of your symptoms.
Sufferers often describe conditions which increase their symptoms or cause relapses e.g. physical or mental stress. further Infections, alcohol and extremes of temperature. A characteristic of M.E./C.F.S. is Its fluctuating pattern with good and bad periods; symptoms also vary from one time to another.
As with any severe or chronic illness, some experience anxiety or depression, but this Is a consequence, and wasn’t evident before the illness. This can be alleviated by understanding and support from family, friends and doctors.
What Causes M.E./C.F.S.?
M.E./C.F.S. may be triggered by viral or other infection, or exposure to chemicals. One hypothesis Is that during the Infection or exposure, the Immune system turns on to fight the invading bacteria or chemical, however, It then falls to shut down, resulting in many of these symptoms. Research around the world Is Investigating the interaction between the nervous, endocrine and Immune systems, additionally brain inflammation, abnormal red blood cells and newly discovered metabolites in the urine of M.E./C.F.S. patients. Recent results now indicate the possibility of developing a diagnostic test and cure. Information on current research Is available from the M.E./C.F.S. Society of S.A. Inc.
Management of M.E./C.F.S.
To date there Is no evidence that any particular treatment is widely effective but some things, together with time, increase the likelihood of spontaneous Improvement. Early diagnosis is an Important step not only in reducing stress for the sufferer and family, but ensuring better disease management.
Sufficient rest especially in the early stages and during setbacks is advisable. However, prolonged bed rest beyond the acute stage has its dangers since it is possible to become trapped In a vicious cycle of immobility and weakness. Within these general guidelines you will need to determine your own levels of rest and activity by experiment and experience. Active physiotherapy or “exercising yourself back to health” will probably leave you feeling worse and set you back.
Setbacks often follow on from sufferers doing too much, too soon, once they feel a little better. Often setbacks and improvements are a natural part of this fluctuating disease process and cannot be easily explained.
Most sufferers, in time, do recover, some even after several years of ill health. A small group remain chronically ill but continual deterioration in symptoms Is not the normal pattern.
What The Society Can Do For You
The M.E./C.F.S. Society of S.A. Inc. supports sufferers in South Australia and its main aim Is to Improve the quality of living for people with M.E./C.F.S.
The Society can provide you with assistance In obtaining a diagnosis and information about the illness, including updates on research. Quarterly meetings (with guest speakers) are organised by the Society so that you can learn the latest about the illness, ask questions of specialists in the field and interact with other sufferers. A quarterly magazine is produced to keep you informed of the latest research, diets, medications, therapies, etc. Assistance Is also provided for those who require liaison with schools, the Education Department, Open Access, Special Education. and other social services, including legal, medical. housing and other aspects.
The Society is also working to develop support groups in the suburbs and country; raise money for research; and raise the awareness of the illness in the community and Increase its credibility.
What You Can Do
Join the Society! Your subscriptions go towards research and the support functions mentioned above. Encourage family, friends, social clubs or employers to support research Into your Illness or donate useful Items (e.g. office equipment, supplies, etc). Provide fund-raising Ideas and any expertise you can offer to help the Society achieve its goals. Make contributions to the magazine in the form of fact, fiction, poetry, cartoons. helpful hints etc. We want the magazine to be entertaining as well as informative.
You Can Help Yourself
Most people feel more fulfilled If they can positively contribute to their own health care.
Read and understand what you can about M.E./C.F.S. Learn to pace and not over commit yourself. Recognise what your body tells you it can or cannot do. Avoid the temptation to “catch up” on jobs just because you feel a little better. Try and find a balance between rest and exercise which works for you.
Avoid or think seriously about conditions or activities which make you feel worse. General anaesthetlcs, antibiotics and vaccinations, while sometimes necessary, may increase symptoms in some sufferers In the short term. Guard against infections If you can but don’t cut yourself off from others more than necessary (particularly important for children).
If you think you have developed sensitivity to some foods since becoming ill, discuss this with your doctor. Aim to maintain a balanced healthy diet eating fresh rather than processed foods. Limit drinks or foods with additives.
If you are depressed or anxious don’t keep It to yourself. Counselling can often help and medication may be advised as a short term measure.
Seek your doctor’s advice for distressing and persistent symptoms such as Insomnia or excessive pain. Complementary medicine may also help relieve some symptoms for some people.
SAYME (South Australian Youth with ME/Chronic Fatigue Syndrome)
SAYME is the youth organisation of the ME/Chronic Fatigue Syndrome Sopciety (SA) Inc. Our main purpose is to reduce the isolation that many young people with CFS feel. We also provide some information on areas of interest to youth, particulary on education and CFS.
Our activities include:
- Quarterly Magazine: published every three months
- Website: www.sayme.org.au
- Meetings: monthly get togethers
- Contact List: a list of members who want to get in contact with others
Call the SAYME information line for more information: Ph 0500 523 500 (normal costs to metro Adelaide apply) or email: sayme@sayme.org.au
*Source:www.dircsa.org.au/docs/FoetalAl.htm
