Will there be a cure?

I respond­ed to a post in a friend’s Live­Jour­nal, in which she talked about a friend of hers who has just been diag­nosed with chron­ic fatigue syn­drome. Her friend was very upset that my friend did­n’t believe there is a cure for fibromyal­gia or CFS (at least, there isn’t one right now). This is part of my response.

I think that the fact that there’s final­ly acknowl­edg­ment from the CDC and the like that CFS is real, and research prov­ing that FMS is real and show­ing a genet­ic link, is very promis­ing. That great­ly increas­es the prob­a­bil­i­ty of research being done that might find a cure or at least decent treatments.

But no, I don’t real­ly look for a “cure” for either dis­ease. I think the best we’re going to see for some time is bet­ter treat­ments for the symp­toms. I’m fair­ly cer­tain that both dis­eases will be found to be genet­ic weak­ness­es trig­gered by envi­ron­men­tal con­di­tions that dam­age the ner­vous and/or immune sys­tems. Gene ther­a­py may be able to repair some of that dam­age. Maybe. Germline ther­a­py might offer our descen­dants the pos­si­bil­i­ty of not pass­ing the genet­ic weak­ness­es on to their children.

But—not expect­ing a cure does­n’t mean that I don’t pay atten­tion to the research and the lat­est infor­ma­tion avail­able about treatments.

I think hop­ing for a cure, in some ways, can be a way of try­ing to shift respon­si­bil­i­ty for how we pro­ceed to the med­ical estab­lish­ment. If there isn’t one com­ing, the only improve­ment we’re going to expe­ri­ence is what we man­age with what’s avail­able now. The improve­ments we make in how we eat, move, sleep, inter­act, etc. are up to us, and they can make a huge dif­fer­ence. We can get some relief from cur­rent­ly avail­able med­ica­tions by work­ing with our doc­tors. We can use var­i­ous tech­niques to improve our cog­ni­tive func­tion­ing or prop our­selves up despite fibro fog. And if we aren’t sit­ting around wait­ing for some­body else to hand us a cure, we’re more like­ly to do those things.

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.
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14 thoughts on “Will there be a cure?

  1. At Last some­one else with a pos­i­tive atti­tude to hav­ing a ‘non-cur­able’ ill­ness — so many peo­ple with Fibromyal­gia spend their lives not only dom­i­nat­ed by the ill­ness but also wast­ing valu­able liv­ing time search­ing for the elu­sive ‘cure’. Maybe my tips might help on my blog at
    http://disabledwithfibromyalgia.blogspot.com
  2. Of course there is no “cure” for a dis­ease that is bare­ly rec­og­nized, and cer­tain­ly not under­stood by the med­ical pro­fes­sion. Peo­ple do go into remis­sion though, some­times indef­i­nite­ly. Are they cured? Until we know what is caus­ing CFS and FMS, we won’t real­ly know. I agree that hav­ing a pos­i­tive and open atti­tude is a good idea, if you don’t want to be mis­er­able all the time.
  3. Our way of life is caus­ing these “so called” dis­eases. Do not look for a bac­te­ria or any genet­ic anom­alies. The symp­toms could be iden­ti­fied as caus­es in this case. So, do not make that mis­take. We have to think again if CFS and FMS are dis­eases or just symptoms.
  4. I is said that pre­ven­tion is bet­ter then cure. The dis­ease nev­er attacks imme­di­ate­ly but always first symp­toms appear and this is the prop­er time when pre­cau­tion­ary mea­sures should be tak­en to save one self from the ill­ness. The pro­fes­sion­als can only dif­fer­en­ti­ate whether CFS and FMS are dis­eases or mere symptoms. 
  5. Titus has his point. There is a lot of imag­i­nary dis­ease invent­ed for the sin­gle pur­pose of mak­ing mon­ey. Take obe­si­ty, for instance, and you’d see every sin­gle drug for it (like xeni­cal for an exam­ple) has a indi­ca­tion for diet and sports as a relat­ed treatment.
  6. Stop and think a lit­tle. “Peo­ple go into remis­sion”; we’re not talk­ing mir­a­cles here, aren’t we? I belong to the non believ­er side. I don’t real­ly believe CFS is a dis­ease. Well, not a com­mon one you can buy online pre­scrip­tion for it. It is some­thing about cause and effect. When the caus­es dis­ap­pear peo­ple goes into remis­sion. Unfor­tu­nate­ly we don’t know the caus­es for sure.
  7. If you’re a “non-believ­er,” Sylvy, why are you here? If, at least, you mean that you don’t believe CFS/ME exists. 

    Say­ing that CFS has a cause does­n’t mean that it isn’t a dis­ease. Polio is a dis­ease, and there’s cer­tain­ly a cause for it!

    When the cause of a dis­ease “dis­ap­pear,” though, the vic­tims do not nec­es­sar­i­ly “go into remis­sion” or imme­di­ate­ly get well. Their bod­ies have been neg­a­tive­ly affect­ed by the dis­ease, and in many cas­es the dam­age will be evi­dent in some way, large or small, for the rest of the patien­t’s life­time. They may have to be care­ful to mon­i­tor their ener­gy, or avoid cer­tain trig­gers, or wear braces on their legs, even after they are “well.” That does­n’t mean that their ill­ness did­n’t happen.

    There is quite a lot of proof regard­ing the exis­tence of CFS/ME now&mdashenough so that the Cen­ters for Dis­ease Con­trol has final­ly acknowl­edged it, years after the reast of the world’s med­ical com­mu­ni­ty did so. I sug­gest that you update your infor­ma­tion regard­ing the search for a cause.

  8. Is CFS dead­ly? It sure­ly short­ens your life..doesn’t it? And what are the symptoms?
  9. I don’t know that CFS has been proven to short­en the length of most peo­ple’s lives, although I’ve heard of one death attrib­uted to it. It cer­tain­ly affects the qual­i­ty of life, and I know of sui­cides caused by that fact.
  10. Most peo­ple with CFS/ME will show some improve­ment over time, espe­cial­ly with treat­ment. Some peo­ple recov­er in less than two years, while oth­ers remain ill for many years. How­ev­er, health and func­tion­ing rarely return com­plete­ly to pre­vi­ous lev­els. Most peo­ple who recov­er sta­bi­lize at a low­er lev­el of func­tion­ing than that before their ill­ness. In some cas­es the con­di­tion is severe and/or per­sists for many years. Those who have been affect­ed for sev­er­al years seem less like­ly to recover.
  11. Hey Cyn­thia,

    I came across your blog while research­ing infor­ma­tion regard­ing fibromyal­gia and CFS, more specif­i­cal­ly the quail­i­ty of life patients expe­ri­ence on a day-to-day basis. I thought you might be inter­est­ed to see this arti­cle from a com­pa­ny called King­fish­er since treat­ment of these dis­eases is rarely dis­cussed and is a top­ic you have cov­ered in the past.

    Hope you find it inter­est­ing and wor­thy of discussion 🙂

    -Scott

  12. CFS is dead­ly. But maybe we should con­cen­trate more on the cause. Maybe the drug com­pa­nies should tell us more about the adverse effects of some of their products.

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