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 a 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,” 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 expe­ri­enc­ing 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 have 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-loss self-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 alto­geth­er 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.

Cyn is Rick's wife, Katie's Mom, and Esther & Oliver's Mémé. She's also a professional geek, avid reader, fledgling coder, enthusiastic gamer (TTRPGs), occasional singer, and devoted stitcher.
Posts created 4254

8 thoughts on “Responses to various comments about ME and FMS

  1. 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.

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

    The acces­si­bil­i­ty plu­g­in is from

    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!

  3. 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.

  4. 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.

  5. Pingback: » 104 Great Resources for CFS, Fibromyalgia & Interstitial Cystitis

Comments are closed.

Related Posts

Begin typing your search term above and press enter to search. Press ESC to cancel.

Back To Top