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May 12 CFS/CFIDS/ME Awareness Day |
| "There is no pathology and there is no diagnostic test, and there is no treatment, and so people say there is nothing wrong with these people — they’re just depressed but the same situation occurred with Tuberculosis before they had microscopes." (Prof Garry Scroop) |
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May 12 CFS/CFIDS/ME Awareness Day |
WHAT IS CFS
Chronic Fatigue Syndrome (CFS) is an emerging illness characterized by debilitating fatigue lasting more than six months (The dictionary says fatigue means "Weariness from bodily labor or mental exertion; lassitude or exhaustion of strength"), as well as neurological problems and a variety of flu-like symptoms. You know what it feels like when you have a bad case of the flu - that exhausted feeling you get? - that's what CFS feels like. Add to that muscle aches and pains, headaches, and severe concentration and memory problems (the common term for this is "Brain Fog") and you have the basic symptoms of CFS. Some people have other symptoms too, including sore throat, fever, gastro-intestinal problems (IBS) and sleep disorders. For a more specific list of symptoms visit Mary Schweitzer's CFS information page. At times people suffering the effects of Chronic Fatigue Syndrome have great difficulty performing most daily activities, including things as simple as taking a shower or fixing a meal.
THE CAUSE
The cause of CFS is still unknown at this stage. Most research indicates that it is triggered by an abnormal response to a virus, often Glandular Fever, Ross River Virus, or Hepatitis. Some doctors believe that for some reason the body's immune system doesn't "turn off" after the the initial infection. The illness seems to prompt a chronic immune reaction in the body, however it is not clear that this is in response to any actual infection, this may only be a dysfunction of the immune system itself. For some people, symptoms start gradually, for others the onset is sudden. Before being diagnosed with CFS it is important to rule out any other possible causes of common symptoms, such as: Hypothyroidism, Sleep apnea, medication side effects, lupus, Multiple Sclerosis, Cancer and Depression.
WHO GETS CFS
Current research indicates that 70-80% of sufferers are women (common for most immune related conditions). Onset is usually around the age of 25-45 but can occur in pre-teens and those aged over 45.
THE CURE
Chronic Fatigue Syndrome will usually last for five years or more. Most Sufferers of CFS will improve over time but some never regain their pre-CFS level of health. There is currently no cure for CFS. Management of the illness depends greatly on the individual. Some symptoms such as muscle aches, headaches and sleeping difficulties can be helped with the use of medication. Total bed rest is not reccomended although at times sufferers are unable to get out of bed. Some exercise is recommended but overdoing it can lead to several days or weeks of feeling worse.
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You sure look good"...or... "You don't look sick"
Saying such things makes the sufferer feel as if you don't believe in the severity of their symptoms. |
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I feel tired too
This comment minimizes the suffering. CFS involves much more than merely being tired. Its a painful, debilitating disease. |
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I wish I could take a few days off to catch up on my rest.
People with CFS are not on vacation. |
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You were working too hard. That's why you got sick.
This may imply to the sufferer that s/he is to blame for what has happened. |
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How are you?
Don't ask unless you really want to know. Frankly the sufferer generally feels terrible but may not wish to complain. |
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So-and-so had CFS and she was only sick for a year.
Each case of CFS is different in duration & severity & pointing to another's early recovery can be discouraging to one suffering longer. |
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Don't offer medical advice
Unless you are asked for it & are qualified to give it. |
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Don't imply
...to persons with CFS that if they have a setback it must because of something they did or didn't do. |
SUGGESTED THINGS TO SAY OR DO
| Show that you believe they are really sick. |
| Make a phone call, or go to visit. Calling first is usually a good idea. |
| Respect any restrictions as to visitors or phone calls. If a person cannot have visitors or talk on the phone, send a card or letter. People with CFIDS often look forward to opening the mail each day. |
| Be compassionate. Sometimes this just means acknowledging what the ill person is experiencing. |
| Offer to run errands, do their grocery shopping, take them to the doctor & so forth. |
Live Chat to chat live about CFS or just meet people who know how you feel
AUSTRALIAN CFS ASSOCIATIONS
ME/CFS Society of Victoria
ME/CFS Society of New South Wales
ME/CFS Society of Queensland
ME/CFS Society of South Australia
Canberra CFS/FMS Page
AMERICAN CFS ASSOCIATIONS
CFIDS Association of America
OTHER CFS LINKS & PERSONAL PAGES
My personal CFS Page
Mary Schweitzer's CFIDS site..comprehensive, up-to-date information
Mary Schweitzer's CFS page..contains info on organised events
CFS - Frequently Asked Questions
Latest News about CFS
The Alison Hunter Memorial Foundation
Jeff Clark's CFS Page
Shocking case about treatment of a teenage CFS sufferer
NIAID Publication on CFS