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 increas­ing 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.

December 11, 2006   Posted in: Chronic Fatigue Syndrome, Fibromyalgia

14 Responses

  1. pat - December 14, 2006

    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. Ed - January 24, 2007

    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. diplas@myway.com - May 25, 2007

    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. Salman - June 1, 2007

    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. Deniss - June 28, 2007

    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. Sylvy - July 26, 2007

    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. cyn - August 17, 2007

    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. buga.daniel@gmail.com - October 4, 2007

    Is CFS deadly? It surely short­ens your life..doesn’t it? And what are the symptoms?

  9. cyn - October 4, 2007

    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. alin360@gmail.com - November 5, 2007

    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. Scott - November 7, 2007

    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. cyn - November 7, 2007

    Hi Scott. I would have liked to have read the arti­cle, but the link didn’t work.

    Thanks,
    Cyn

  13. Scott - November 8, 2007

    oops sorry about that…here it is again. hope­fully that works

  14. fforimajue@gmail.com - March 26, 2008

    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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