ME/CFS AUSTRALIA (SA) INC
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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 the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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Treatment evangelism in Fibromyalgia & CFS
Thursday 18 November 2010
Treatment Evangelism in Fibromyalgia & Chronic Fatigue Syndrome
I see it all the time -- someone with fibromyalgia and chronic fatigue syndrome finds a treatment that works for them, and they start preaching about how everyone else should try it. A blog comments or forum post will saying, "I'm telling everyone," or "Finally, I've found the cure! You have to try it!"
I've gotten a touch of that enthusiasm myself at times. It's hard not to, when you know millions of us are looking for something that works, and you believe you've found that elusive miracle. In fact, it's easy to feel like you need to let other people know about it.
It's a noble impulse, and certainly we can learn a tremendous amount from each other. However, I do want to caution you about putting too much faith in what has worked for someone else. If you get too caught up in their enthusiasm, it's easy to bypass research, get your hopes up, and then take it really hard when the treatment fails.
Each of us has our own combination of dysfunctions and abnormalities that lead to a unique set of symptoms, and that means we each need to find the combination of treatments that works for us. That combination may work for some others, but it will be less effective for many and utterly ineffective -- possibly even harmful -- for some. For example, I don't have much of the typical fibromyalgia immune dysfunction. However, I do have an autoimmune thyroid condition. If I were to jump on the wrong bandwagon and try something that really ramped up my immune system, I'd be hurting worse. Someone who's problem is mainly immune would get little help from my neurology-based regimen.
We each need to learn as much as we can about our own unique cluster of symptoms and the most likely causes of them so we can make the best choices about our treatments. Do your research on potential treatments, no matter how many stories you hear about how great something is. Talk to your doctor to make sure you're not doing something dangerous. (You don't need your doctor's permission to try non-prescription treatments, but you should hide what you're doing, either.)
On the flip side, if you find yourself becoming evangelistic about a treatment, remember that your experience isn't the same as everyone's. Try not to become pushy, and don't take it personally when someone contradicts you. It's great to share information about your success -- that's the best way for us to learn -- but always keep our differences in the back of your mind.
If someone's making you crazy with treatment evangelism, try to keep in mind that they're just trying to help. Too often, I see someone who's failed with that treatment say derogatory things about the treatment and the person suggesting it, and that doesn't help anyone. I think the best approach is to offer your own experience, to help other readers put the suggested treatment into perspective.
Have you tried treatments based on someone's infectious enthusiasm? Do you get tired of seeing people who seem like cheerleaders for a particular treatments? Have you become evangelistic about a treatment, only to have it stop working or start causing side effects?
Learn more or join the conversation!
The above originally appeared here.
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