The ME/CFS Society of NSW Inc.

Youth is no shield against ME/CFS, and the condition can create special problems for children and teenagers. It's rarely found in under-fives but young teenagers seem particularly vulnerable. According to American paediatrician Dr David Bell, in the 5 to 12-year age group, onset is often slow - but in adolescents, it can be acute and linked with a flu-like illness. Many of the clinical symptoms are the same as for adults, but in children and teenagers the central nervous system disturbances can result in poor school performance.

Listed below are some recommended books about ME/CFS and related illnesses. The Society's library catalogue may give additional information such as ISBN and place of publication.

Telling other people that you have ME/CFS is not always easy. Because there are still people who do not accept that this is an organic illness, there remains considerable scepticism in some quarters and disparaging terms like "yuppie flu" are still used. With increased awareness and education, this situation is changing, but knowing who, when and what to tell other people can present a problem.

Symptoms
Major symptoms of ME/CFS include severe prolonged fatigue, post-exertional malaise, sleep disturbances, pain syndromes and several of many possible disturbances to neurological and cognitive function including perceptual, sensory and motor problems, poor concentration and short term memory, autonomic nervous system problems such as orthostatic intolerance, breathing and heart irregularities and dysfunction of the gut, neuroendocrine disturbances such as changes to the control of body temperature and marked weight changes, and disturbances of the immune system such as 'flu-like symptoms and new sensitivities to food, medications and/or chemicals.

Managing ME/CFS
While there is no cure as yet, varying degrees of symptomatic relief may be possible in some instances. Different things work for different people so if you find something that works for you, stick with it until it no longer does or you no longer need it. Beware, however, of expensive rip-offs, shonky "cures" and emotional blackmail at times when you can be very vulnerable because of despair and clouded thinking. If someone promises you a major transformation, always ask to see the research papers and the scientific proof - and no matter how convincing the claims may sound, talk to your doctor or the Society first. Management plans should always be individually tailored and professionally guided.

What are the causes of ME/CFS?
Despite ongoing research, the cause of ME/CFS is not yet clear. In fact, there are a number of "causes". In many cases, onset appears to be linked to a stress to the immune system such as an acute infection (particularly viral), chemical exposure or immunisation. The symptoms do not clear up as would be expected; instead, they become chronic or may intensify and abate but never completely disappear, and are accompanied by profound fatigue and feelings of malaise. Occasionally, onset may be slow and insidious. There is also some evidence that certain common viruses are involved in the development of the syndrome.

The Society has an extensive library of over 150 books, 60 video and 70 audio tapes on a range of topics relating to ME/CFS, Fibromyalgia and related illnesses. There are even a few cookbooks for people with food intolerances.

Borrowing is available to all members of the society, however if your membership is about to lapse, you will be required to renew before you are able to borrow. A maximum of three (3) items may be borrowed at any one time.

By Elizabeth Ho

To celebrate the Society’s 25th Anniversary, a seminar with Dr Richard Schloeffel, a GP who specialises in treating CFS, was held. Dr Schloeffel addressed a capacity crowd of 90 attendees. He spoke for approximately four hours and answered individual questions for another couple of hours following that.

In his address, Dr Schloeffel said he has been working with CFS since 1981. Today his practice has over 2500 people his books are full. He said his intention is to get information out into the wider community so practitioners can be trained up in the diagnosis and treatment and management of CFS.