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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  Tags: allergies, causes, CFIDS, Chronic Fatigue Syndrome, diet, exercise, fatigue, Fibromyalgia, FMS, genetic basis, health foods, ME/CFS, myalgic encephalopathy, neurological disorders, Pain, treatments, weight loss  Posted in: Blogroll

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