Sigh. We have so got to change the fucking name of this disease.
And what are the helpful suggestions that the US Department of Health and Human Services apparently offers?
* Keep a log of activities that trigger extreme fatigue, and try to avoid those things.I'm not sure which one of them made me laugh more.
* Try to get some light exercise. But always talk to your doctor before starting an exercise program.
* Take an over-the-counter pain reliever for the aches, muscle and joint pain, and headaches that can accompany the syndrome.
* Try a non-drowsy antihistamine to help with allergy-like symptoms.
* Talk to your doctor about whether an antidepressant can help you feel and sleep better.
* Join a support group.
6 comments:
* Keep a log of activities that trigger extreme fatigue, and try to avoid those things.
For me, the most ludicrous was that one. Um, yeah. Walking across the room... I'll try to avoid that. Sitting up to grab the remote when I am too tired to hold up a paperback book. I'll avoid that, too. Open a jar? I'll avoid it. Type on a computer, I'll avoid it.
ARRGGGHH!!! Idiots!
Yeah that one started me off with a laugh, but it was hard for me to pick the one that made me laugh the most.
*Take an over-the-counter pain reliever
Dude, I take 120 mg of morphine a day. I don't think they even begin to understand the "aches, muscle and joint pain" we're talking about here.
And clearly they don't get just how serious and debilitating this disease is.
:::shaking my head:::
Yes, I saw that one, too. I try to mostly ignore crap like that - it's just so far from the truth. Fortunately, there's more and more REAL research being reported, too. I cheer every time I read an article or news alert about CFS based on real, hard science.
Sue
Heya Sue,
Sorry to take so long getting to your comment. Yeah I usually ignore the crap also, but this one was so egregious I just had to poke fun at it.
As I talked about in my post about how scientific paradigms shift, there is a lot of good biomedical research coming out -- and the media has an economic incentive to share that instead of the crap.
I suspect with the article in this post, the writer didn't really know much about ME/CFS and just took a bunch of "advice" from the US DHH, which also doesn't know much about ME/CFS. But I think the name "Chronic Fatigue Syndrome" really is to blame for such woefully understated articles like this, as it allows a writer who knows little about the illness to simply rely on what the name implies to shape his or her writing.
Yeah, a name change cannot happen soon enough. In addition to trivializing the illness, it makes advocacy really awkward. Back on May 12 I posted an essay about "CFIDS Awareness Day." Since then I've heard arguments that ME is a better term than CFIDS. I don't have the medical knowledge to form an opinion on this. I have no idea whether brainstem inflammation or immune system dysfunction is more relevant. I've been switching to "ME" based on the fact that this term has been around the longest ... which means my posts on the subject are now all inconsistent.
Obviously, the advocacy issue is pretty trivial when compared to the harm perpetuated by the term "chronic fatigue syndrome." But it's hard to combat the ignorance caused by the bad term when no one can decide what the good term is.
Yes I'm quite ambivalent about what should replace the universally despised "Chronic Fatigue Syndrome". I actually thought the term neuroendocrine immune dysfunction, which the name-change committee came up with in 2002 was the best from a clinical perspective. But a lot of patient advocates complain that it is still susceptible to use by the psychiatric school of thought. I dunno. I'm supporting the ME term simply because the International Association of Chronic Fatigue Syndrome adopted it and appended it to it's organization name.
Hopefully this will get sorted soon as you're so right, it really impedes advocacy.
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