Responses to various comments about ME and FMS

Some of the comments are pretty old by now, but there are certain themes that come back, over and over again. I’ve decided to answer them once, and that’s it.

ME and FMS are not “lifestyle” diseases. Researchers have found genetic, neurological and cardiological anomalies, so get off that blame-the-victim bullshit. We know better. We’ve done the diet and exercise dance. We’ve tried air-cleaners and removing toxins and natural cleansers and vitamins and health foods, and while some of them are nicer than the alternatives, they cannot cure chronic fatigue syndrome or fibromyalgia because they are not part of the cause.

While we’re at it, no, alien abductions don’t cause FMS, either. I know you’re laughing, but there really is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chronic Fatigue Syndrome” is a totally inadequate name for a disorder whose sufferers experience far, far, more than a little tiredness. That’s why we have a new and better name for CFS, as of January 2007: ME/CFS, or myalgic encephalopathy/chronic fatigue syndrome. The disease has been known as ME all along in the rest of the world, although sometimes the acronym was used for myalgic encephalomyelitis. Personally, I preferred one of the other suggestions, chronic neuroendocrineimmune dysfunction syndrome (CNDS), but I wasn’t on the committee.

I would happily rename fibromyalgia “you don’t want to be me” or “betrayal by entire body, taking your mind with it,” but I don’t think anybody is suggesting that it be renamed. The name just doesn’t seem adequate to its impact, though it’s a little better than some of the older names, like “rheumatism.”

To others who have said “prevention is better than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plenty of aphorisms, too. Tell me, pray, how one “prevents” disorders whose origin is unclear? As I said above, researchers have identified genetic anomalies. We have fairly good evidence that fibromyalgia, at least, has a genetic component. We’ve got brain scans showing that fibromites’ brains react differently to painful stimuli, and other tests showing that our spinal fluid has much higher levels of a neuropeptide involved in transmitting pain impulses than non-fibromites.

With that in mind, how would you go about “preventing” fibromyalgia? Advising us not to breed? Many of us have already done so by the time we’re diagnosed—and, of course, that can’t help us when we’ve already got the disease. We can use our own diagnoses as warnings that our own children may have a susceptibility to fibromyalgia, but what then? Smother them in cotton batting, to keep them from experience any stressors in life that might set off the FMS bomb in their genes?

Being fat doesn’t cause ME or FMS, either, although it’s common to gain weight after developing either disorder. I don’t know anyone who is able to maintain the level of activity he or she did before falling ill, and many of the drugs used to treat the symptoms of these disorders cause weight gain. Losing weight is even more difficult for us than for other people. Telling us that we’d feel better if we lost weight is not helpful in the least. I’ve never once heard of anyone who was “cured” of FMS or ME because he or she lost weight—and if it were happening, I would know it, because I pay a lot of attention to these things.

Even if I thought weight loss offered a “cure,” or even amelioration of symptoms, I see no reason to discuss drugs like Xenical at any length. Any drug or procedure promising weight loss will has an easy time getting approved because of our society’s hatred of fat people. Fen-phen, anyone? “Oh, the drug will kill some patients, or leave them with permanent heart damage? Hell, it’s worth it if there’s a chance of losing weight!” The weight-lossself-hatred industry has more than enough money and power to lube their way past any flimsy little regulations standing in their way.

Diet and sports and their relation to weight are another thing all together, and beyond the scope of this blog. I recommend you to peruse the worlds of the delightful Sandy Szwarc over at Junkfood Science, who does cover that topic, frequently, thoroughly, and well.

January 23, 2008 · Cyn Armistead · 8 Comments
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8 Responses

  1. Divinely Crafty » I’m Angry Today. - January 25, 2008

    […]   I am angry that anyone who is ill should have to spend one drop of their precious energy into responding to those who doubt,blame, ridicule and abandon them.  We don’t have to look far back in time to see illnesses and conditions that were once […]

  2. Katathome - January 28, 2008

    I came across your site by chance, and am so glad I did!
    Reading your comments on the responses to ME and FMS, I could almost cry that you were able to voice all I had felt inside at the constant battle I have to prove myself not a malingerer (albeit through silent accusations, and offers of instant cures that ‘are sure to work’!), and that FMS isn’t a product of my mind!
    Thank you.

  3. chronic chick - February 4, 2008

    Hi,

    I really enjoy reading your site. Ive had fibro and lupus for what seems like forever. I’m working on a site over at wordpress. http://www.chronicchicktalk.com
    and was wondering where you got the accesiabilty thing for the font size. Could you please let me know. Thanks

  4. cyn - February 4, 2008

    I’m glad you enjoy it 🙂 I’ll check out your site soon!

    The accessibility plugin is from WebGrrrl.net.

    I took a quick look at your site, and say your message about getting a link from your message board back to your main site. I’m reasonably sure that you can replace the phpBB logo and link up there in the upper-left-hand corner with your own graphic and a link to your site. If that’s difficult, how about trying one of the forums that is made to integrate with WordPress? My partner has used BBPress, and says he’d probably use Vanilla if he had it to do over again. I’ve heard some good things about WP-Forum, but there might have been a security problem recently – you want to be sure that’s been resolved, if there was one, before trying it. Since the site and board are new, switching over shouldn’t be too big a deal. phpBB is really overkill for most forums 🙂

    Good luck!
    Cyn

  5. Jo - February 5, 2008

    I always enjoy reading your site and I too am disgusted with all the crap, crud, and BS that people say about people with CFS and FMS.

    It’s always easy for those who have no clue to give advice or open their mouths about things they know nothing about. Unfortunately they just don’t get it until/unless it happens to them.

  6. cyn - February 5, 2008

    I used to say that I wouldn’t wish this pain on my worst enemy. After so many years of naysayers, I’ve changed my tune. If I could, I would happily force every doctor, especially, to live with severe FMS/CFS/ME or some other chronic disability for a minimum of a year. I’d like to give the other clueless people a taste, but it’s the doctors who do the most harm, as far as I can tell.

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  8. chronic chick - February 18, 2008

    Hi,
    Thanks for the accessibility link. much appreciated…