MYALGIC ENCEPHALOPATHY / CHRONIC FATIGUE SYNDROME:
What is it?
ME/CFS is a serious, complex, debilitating illness of which the causes remain unknown. It’s possible that there is a single, as yet, unidentified cause, or there may be multiple causes. The two symptoms which are common to everyone with ME/CFS are incapacitating fatigue, which is experienced as profound exhaustion and extremely poor stamina, and delayed fatigue post exertion. The condition does not improve with rest, and persists for a minimum of six months, but for many it can last for years, severely impairing their ability to function.
ME/CFS is also known as Tapanui Flu, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME).
Who gets it?
It’s estimated there are up to 20,000 sufferers in NZ, and that the prevalence is higher than MS and breast cancer. It affects people of all ages and all ethnic groups, and is more common in women rather than men by seven to one.
How does ME/CFS begin?
It is thought that for many people ME/CFS is triggered by a viral infection, and often happens at a time when they are physically or mentally stretched. One theory is that infectious agents, and possibly chemicals can provoke the body’s immune system to counter attack, and possibly keep it in a lasting state of activation. This can result in the immune system being in a permanently active state. Another theory is that ME/CFS may be caused by viruses which affect the brain, and can’t yet be detected by diagnostic testing. Some scientists believe that ME/CFS is first and foremost a muscle disease, and secondary to this fatigue results from the muscle dysfunction.
Is there a diagnostic test available in NZ?
Unfortunately there is not, although currently there is a lot of research happening overseas in an attempt to find a diagnostic tool for ME/CFS. Diagnosis is made by clinical presentation and by testing to discount other possible causes of fatigue. The person must have had unexplained severe fatigue not resolved by rest for at least six months, and at least four of the main symptoms, including prolonged fatigue following previously tolerated exercise. For young people in particular, an early diagnosis with a good management and rehabilitation plan will enhance the chances of an effective recovery.
What are the main symptoms?
• The onset of fatigue that significantly reduces the daily activity of a previously healthy person
• Impaired memory (brain fog) and /or concentration
• On- going sore throats and tender lymph nodes
• Muscle pain and weakness
• Multi joint pain with no redness or swelling
• Headaches which are of a new type / pattern / severity
• Unrefreshed sleep
• Post exertional malaise (lasting more than twenty four hours)
• Nausea, bloating and/or irritable bowel syndrome
• Anxiety/depression/panic attacks
• Low blood pressure (Neurally Mediated Hypotension, caused by nervous system control) Dizziness, orthostatic intolerance (problems standing)
• Circulatory effects : palpitations, orthostatic tachycardia (raised pulse rate), shortness of breath on exertion
Is there any treatment for ME/CFS?
There is no specific treatment that will cure ME/CFS and the underlying immune system dysfunction, but there is much research taking place around the world looking at potential causes and treatment. Some people recover, some have periods of relatively good health and illness, and a minority gradually worsen over time. Some neither get better or worse, and some improve but never fully recover. Everyone responds differently, so a good management plan for symptomatic relief is required.
Factors contributing to recovery:
It is important for people to come to terms with the illness, accept the limitations the illness imposes, and adjust their lifestyle accordingly.
They should take an active part in the recovery plan, but have a 'common sense' approach, not endlessly chasing "cures", which can be counter- productive, costly, and frustrating.
Relieving symptoms and preventing relapses:
Symptomatic relief can be obtained from medications for sleep disorders, pain, depression, gastro intestinal disturbances, and allergies. Low doses are recommended initially then increased slowly as appropriate, as people with ME/CFS can react badly to medication.
Lifestyle changes, reducing stress, increasing rest, pacing oneself, eating healthily, nutritional supplementation, and regular aerobic exercise within the person’s energy allowance, are normally recommended. Smoking and alcohol should be avoided as nicotine can increase the heart rate and blood pressure, and may cause the worsening of symptoms such as palpitations. Alcohol can also interfere with sleep, and the general intolerance for alcohol that people with ME/CFS often have may cause a relapse.
Meditation, relaxation, creative visualisation, yoga, Tai Chi, acupuncture, hypnotherapy, counselling and cognitive behavioural therapy are just some of the things that may help with both physical and mental wellbeing, but it’s important to ensure the practitioner or tutor is properly qualified.
Services offered by the coordinator:
• Support, advice, education, and advocacy, for people with ME/CFS and Fibromyalgia, their care givers and families
• Home visits for assessment and advice
• Telephone follow-up at time of acute need
• Information on ME/CFS and Fibromyalgia
• Referral to other agencies’ services as appropriate
• A quarterly monthly newsletter, Koru, with news, advice , tips, and up to date research
• Promotion of awareness of ME/CFS and Fibromyalgia to health professionals and the general public
A monthly Educational Support Group meeting is held in Hamilton on the second Thursday of each month. Usually a guest speaker shares information on a topic associated with ME/CFS or Fibromyalgia. This group starts at 10.30am and goes till around midday. Caregivers and family members are welcome.
If you are interested in attending this support group meeting please contact Tracey Larsen on 07 834 4745 for more details.