ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Unsolicited advice about Fibromyalgia & CFS
Thursday 11 August 2011
Those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) seem to be advice about our illness from people who (usually) mean well but don't have a clue what they're talking about.
I find it extremely amusing that so many people with no medical training and no knowledge of FMS or ME/CFS think they "get it" better than us, our doctors, and lots of researchers who've been puzzling these things out for decades. Some of the old standards are:
I've come across a few others, as well:
And of course, there's the fad-du-jour: take whatever supplement has made news lately and all your ills will be cured. This sometimes naive, sometimes bad advice can come from anywhere. Right after I joined Twitter I just had to reply to a tweet that said, "Fibro=tissues, myalgia=inflammation. Don't let your doctor over-diagnose you!" That was from an actual health-care worker (some kind of physical therapist), who claimed to treat people with FMS! I had to point out that actually, my=muscles and algia=pain, and if anything we're UNDER diagnosed.
The bottom line is -- we can't keep people from giving us unsolicited advice, but we can be smart about what we do with it. Some of it is worthless, but now and then you can glean something useful from it. The key is to do your own research, make your own decisions, and stand your ground.
What crazy advice have you gotten? How have you handled it? What's the best advice you've gotten about managing your illness? Leave your comments below!
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The above, with comments, originally appeared here.
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