What are the symptoms?
ME can affect every organ and function of the body. People with ME experience symptoms that tend to be individualistic and fluctuate in severity. The major hallmark of ME is a severe, disabling fatigue. Usually it is an unexplained, never-before experienced, debilitating exhaustion that may cause the person to be bedridden for weeks or even months. Sore throat and enlarged, painful lymph nodes may be present and general flu-like symptoms frequently mark the onset of the disease. This fatigue and flu-like symptoms are experienced in combination with a number of other symptoms, some of which are described as follows:
    ME causes cognitive function impairments such as memory disturbance, confusion and difficulty with thinking and concentration. The abilities to read, write, tell time, perform mathematical calculations, communicate clearly and be oriented in space and time can all be affected.
    Other nervous system problems can include sleep disturbance, headaches, vision and hearing difficulties, tingling or numbness of the extremities, problems with balance, light-headedness, severe muscle weakness, muscle and joint pain, chills and/or sweats, low grade fever or subnormal body temperature, heart rhythm irregularities, palpitations, chest pain, and thyroid and hormonal imbalances. Often there are extreme sensitivities to noise, light, odours, and tastes, as well as allergies and food intolerances. Gastrointestinal problems such as diarrhea, constipation, and abdominal pain may occur.
    Many people with ME 'look' healthy, while others have some of the more visible symptoms of ME such as extreme pallor, dark circles under the eyes, atypical skin rashes and significant weight fluctuations (gain or loss).
    Affective functions (emotions) can be altered. Anxiety and mood changes may be severe, unprovoked and inappropriate. Depression may also occur as a consequence rather than a cause of ME.
   Because each person’s experience with ME is unique, individuals exhibit different symptoms at varying intensities. Also, symptoms often wax and wane and can change over time, with some diminishing or disappearing altogether while new ones emerge. Exercise tends to worsen symptoms as does any kind of exertion or stress.

Can children get ME?
A previously energetic child may shun physical activity and a good student may start to fail and require remedial classes. A child with ME can become dyslexic, tearful, physically weak and exhibit exhaustion and/or profound mood changes. Because of their age, children may be unable to understand and/or verbalize the changes in their physical and mental state. Physicians may misdiagnose the child as being depressed or having a behavioural problem or school phobia.

How can I find out if have ME?
It is essential to obtain an early and proper diagnosis, as misdiagnosis can lead to inappropriate treatment which may worsen your condition. Ruling out all of the other diseases which share the symptoms of ME is vital. Find a physician who is familiar with ME and its management techniques. Describe all of your symptoms so the doctor has as much information as possible and see your doctor if new symptoms arise. Currently, diagnosis is based almost entirely on the history that you describe and the findings upon examination. There is no single lab test that can identify ME, although there are certain findings which can support the diagnosis.

What treatment is available?
There is, as yet, no cure or universal treatment for ME other than individual treatment for specific symptoms.

• Early treatment to reestablish normal sleep routine is important in the management of ME, and rest is recommended as required to maintain energy (particularly during relapses).
• A change in diet helps some patients. Since some people develop food sensitivities, it may be helpful to experiment with diet to discover which foods are tolerated and which should be avoided.
• Estimate your activity level daily and then attempt half of it.
• Some exercise (but only within your limits) is encouraged, even if it is only gently stretching or very short walks!
• Seek professional help if reactive depression becomes a problem and/or to assist with the life-style changes necessary to manage a chronic illness. Try to find a counsellor, social worker, or psychologist familiar with chronic illness generally,  if possible ME specifically.
• Join a support group to help relieve the isolation which ME can create and to learn more about the disease and how others cope with it.
• When you are feeling better, avoid the temptation to catch up with unfinished tasks as this is likely to cause a relapse. Build up your activity level gradually and listen to your body when it tells you to rest. It is important to recognize your limits and not push beyond them.

What can I do to help myself?
Learn as much as you can about ME. Your local ME support group is an excellent source of information, as is your community library.
Try to pace and not over-commit yourself.  Listen to what your body  tells you it can and cannot do.

• Keep a journal of your symptoms, activities, feelings, and medical history (e.g. appointments and tests). Record what makes you feel better and what makes you feel worse. This will help monitor the disease’s course for yourself, your doctor(s) and your disability insurance companies. It will also make you more aware of your capabilities and limitations.
• Join the local ME support group. Groups can help you understand and cope with your illness and provide an outlet for concerns and fears. They are also a valuable source of up-to-date information.
• Find a knowledgeable, understanding physician for diagnosis and ongoing treatment. New symptoms should be thoroughly investigated to exclude other illnesses. Your doctor may prescribe medications which may relieve some of your symptoms. Adjunctive and/or alternative therapies may also be of value.
• When possible, avoid situations which tend to make you feel worse.
• Do something good for yourself each day.

Will I get better?
ME seems to take one of three courses. Some people recover completely in a one to three year period. Others recover to a reasonably functional state, but are prone to relapse if they go beyond the limits the disease imposes. A third group develops a chronic condition which may last several years, although improvement and even recovery are still possible within this group.  

How soon will I get better?
Sorry, we don't know. It does take time. The earlier the diagnosis and undertaking of a course of treatment, the better recovery appears to be. Negotiating limits to activity, both physical and brain, seems to be an important element in recovery.

Can you help me with disability claims?
We do have a number of members who are willing to assist on an individual basis in filling out forms. Some monthly meetings are devoted to filling out claims. It is best to contact the association directly, either by phone or by post.

Do you have a doctor in Victoria familiar with ME?
We can direct individuals to doctors who are accepting new patients.

Do I need to join a support group?
The need for support and understanding from family, friends, the medical community and community services cannot be over emphasized. It is difficult to cope with ME alone. ME Victoria members welcome newcomers, and provide a forum for discussion and exchange of information and ideas. Support group meetings offer a unique opportunity to meet with other people who have ME in a friendly environment where help with individual problems is often available.

How can I access help through M.E. Victoria?
If you suspect that you or a member of your family has ME, please contact ME Victoria. We can help you understand and manage the problems of ME. We can assist in finding appropriate sources for help and information.

How can I become a member?
Membership of ME Victoria is $20 annually, (to cover the newsletter and administration costs). At the discretion of the Directors, fees may be reduced/waived where demonstrable financial hardship exists.

What exactly is MEVictoria?
     ME Victoria is a non-profit association created to help patients and their families cope with the physical and emotional strains arising from ME. Our goals are:

• To support individuals and their families who are affected by this disease.
• To create and promote greater awareness and understanding of ME among the medical community and general public.
• To advocate for improved diagnostic, treatment and support services at the local, provincial and national level.
• To organize and liaise with ME support groups.
• M.E. Victoria also provides a newsletter, support and speaker meetings, library with educational and resource materials, telephone access to a volunteer, and whatever other assistance its members can give.