What races do FM affect

Discussion in 'Fibromyalgia Main Forum' started by mindbender, Oct 16, 2006.

  1. mindbender

    mindbender New Member

    I gotta go feed farm animals, but I gotta question. What races does this affect? Is it largely white, and if so why? I don't know if they'll allow this one, but if they do I think this is very interresting.

    We are working so diligently to correlate this DD. I think the question needs to be asked. I guess I'll come back later and see replies.

    If I'm wrong at least we will know.
  2. NyroFan

    NyroFan New Member

    Mindbender:

    I have a guess. I believe minority people or people of color have these illnesses, but like so much in that community: it goes unreported and untreated.

    Statistics have shown that minorities have more illnesses that are undocumented.

    just my guess,

    Nyrofan
  3. elliespad

    elliespad Member

    You KNOW you're gonna get clobbered for this. Everyone afraid of stepping on peoples toes, being politically correct. The rightous will flogg you for sure. Well, it's been asked before, and I've answered before. I'm a white woman with both CFS and Fibro.

    I would guess it's only seen in Industrialized countries as they haven't been poisoned to death with environmental chemicals. But, the Third World isn't usually part of researchers' demographics so we may never know.

    **Oh, and my prediction, you will see a HUGE surge of CFS/Fibro/Autoimmune Diseases in Thailand as, after the tsunami, "they" went wandering through streets and villages, with children huddled in rows, with protective gear and fogged the hell out of cities' - to keep down the mosquitos and insects. So, in a few years, there will be thousands with symptoms, and they'll say it's from the horrible post-tsunami conditions and stress they endured. No blame on the chemicals they sprayed. They were known to be a simple, joyful people.

    There, now they can clobber me in stead of you.[This Message was Edited on 10/16/2006]
  4. mindbender

    mindbender New Member

    Because I can blieve it, sad but true.

    Shouldn't we work on changing that.

    I started off in a low income clinic. They changed Dr's so fast that I was having to tell them my Diagnoses. My medical charts read like a novel. After finding this site I found that there were names for my symptoms. They are not in my charts.
  5. Slayadragon

    Slayadragon New Member

    I am pretty sure that mental illness of all types has traditionally been highly underreported in Asian countries because families feel the obligation to care for relatives with such problems (such as depression) and feel a level of shame about it. That may be true of people of Asian descent in America as well, insofar as they still hold this same sort of value structure. I don't know if this is changing as new drugs to treat depression have been developed.

    If this is the case,, then illnesses like CfS (which cause people to become incapacitated for no apparent reason) probably would be underrported too.

    My guess would be that people with low self-efficacy, little financial resources and little access to healthcare might be underreported and undertreated. (In that case, the mortality rate of the disease---due to such things as homelessness resulting from it---might be quite high.) People with poor nutrition, healthcare and toxic exposure as children might also be more susceptible to it. (All of these are extreme for most Native Americans living on reservations, and for blacks and Hispanics living in what is sometimes called the "inner city" or in poor rural areas.)

    If that is the case, the underreporting amongst some socioeconomic groups would be lower even though the rates in those groups (due to toxins and poor nutrition) might be substantially higher.

    Again, I believe that reported rates of depression for blacks are lower than that for whites in America, but that be due to socioeconomic rather than genetic factors.

    It would be interesting to compare CFS rates amongst people of different races but the same socioeconomic background and see if they differ.

    Since genetic testing shows that this disease (or at least a subsegment of it) is indeed related to genes, it is possible that there is an innate difference between races.

    I'm not even sure that there is a racial difference in reported illness, though. I would assume so (at least due to the socioeconomic and cultural factors) stated above), but I'd like to see research numbers.
    [This Message was Edited on 10/16/2006]
  6. webintrig

    webintrig New Member

    conditions are not prejudge against races, age, nor gender.

    I think your genes and the location on where you lived such as around chemical plants and being subjected to other chemicals as well as meds.taken that has been put into our bodies and the abuse our bodies and minds have taken are the factors here.

    There is no accurated documantation on the above figures. There is no way CDC will ever get an accurate count either.

    What needs to happen is more research needs to be done on our conditions.

    Government, the medical community, family and friends need to help with this and spread not only the word...but get involved by spreading the word.

    I know for some of us we have a support system already in friends and family, most of all being here is a support system, but the other{s} I mentioned especially the government is where we need to be pushing this issue.

    Just an observation and my opionion.

    Fibro hugs,
  7. Callum

    Callum New Member

    ...because the health-care system stinks in this country (the United States), and one of the foulest odors comes from the statistic that health care is not equal regardless of race OR gender.

    I'm a white male. I know that that has afforded me a lot of benefits I never asked for. My fear is that CFS & FM may go under-reported due to the institutional racism that cannot but contaminate the health care system, especially in the U.S., the only industrialized country that does NOT offer universal health care.

    Just as CFS was misdiagnosed when it was primarily women who contracted it ("Dear, you're probably just an 'hysterical house wife'" - yes, although I'm a man, the treatment women often receive from male doctors TICKS ME OFF!), I wonder if the same thing may be happening in minority communities.

    And yet, perhaps there are different statistics per different racial makeups. Why is Sickle Cell primarily a disease that afflects people of African descent? I remember reading, and this was years ago so it might no longer hold true, that Chronic Epstein Barr affected people in Asian countries differently than it did in people of European descent.

    That's my equivical answer - probably useless.

  8. mindbender

    mindbender New Member

    Some say a car crash stirred it out of them. I was physically abused as a child. I, and three of my brothers were beaten about the head numerously for 7 yrs. they say I got the worst of it though, because I was the youngest, and was in the situation the longest. At the time I also reacted to the beatings differently I had the attitude, you won't bring me down. I believe that attitude subjected to abuse changed that thin line in me ,and tipped me closer to mental disorder. I've fighted it all my life. I think I just finally broke.

    All this went unreported also.
    Dan
  9. Lolalee

    Lolalee New Member

    Mindbender, I think your question is perfectly legitimate and don't see any reason for you to get rebuked for this.

    I am Hispanic and have CFIDS and FMS. My sister, who also has Lupus, and 2 female cousins have FMS. I had read somewhere that these illness were very prevalent in the Hispanic population so I Googled this and found the following:

    ......According to the Center for Disease Control and Prevention - CDC, (Dr. Bill Reeves, CFSAC meeting on April 4, 2005,) it was reported that 90% of persons afflicted with CFS/CFIDS are women. According to DePaul University, (Dr. Jason Leonard et all, 1999) the highest prevalence rate of folks with CFS - 726 per every 100,000- is actually found in the Hispanic - Mexican American and Puerto Rican population. African American CFS Prevalence rate is 337 per 100,000. CFS prevalence among white is – 310 per 100,000. Since then there have been other prevalence studies (CDC) indicating that 2.2 million persons in the U.S. may suffer from CFS.

    I do wonder about the male/female ratio. Do you think it's possible more men have it and don't know it?

    Lolalee
    [This Message was Edited on 10/16/2006]
  10. Callum

    Callum New Member

    Luckily, I wasn't raised this way, but I have met a lot of men who were told growing up that men don't show "weakness", and that means admitting to pain. Of course, with those who are knocked completely off their feet with this DD, what choice would they have? But, I know in my case at least, I could function for all 12 years I've had this. Not well, and not without a great deal of pain and discomfort, but I could function. I wonder how many men so afflicted would not admit to feeling like this for fear that their masculinity would be questioned?

    Then again, so many men are such babies, aren't they? My mother would be down sick with the flu and still take care of me and the house when I was young. My dad would get a head cold, and you would have thought he was dying as he'd lay on the couch groaning...LOL

    Callum
  11. shar6710

    shar6710 New Member

    I don't know how discussing the racial makeup of a set of ill people could be construed as politically incorrect.

    I've seen the CDC statistics too. I think it is very probable that caucasians were over-represented in early figures because our access to health care is generally better. If the primary risk factor turns out to be stress than I would think minorities would be more effected in the USA.

    Some people have griped that government studies have done random sampling in metropolitan areas instead of studying known patients. Perhaps this was to discover the true prevalence of the DD across racial lines?

    Just some thoughts,
    Shar
  12. elliespad

    elliespad Member

    If STRESS were the determining factor, then minorities and those living in EXTREME poverty would be better represented, not the YUPPY white woman that doctors/media liked to portray. Never thought of it that way.
  13. zion1971

    zion1971 New Member

    most of my peers have never heard of CFS. they don't know what to say to me. there is a notion that this is a "white" disease. i am a living testimony that that isn't true. historically, african americans have not been treated well in the medical community. i have always had excellent insurance, so doctors and nurses have been more kind to me. but i have witnessed personally the different ways that minorities are treated versus whites (through family members illnesses). medical professionals often assume an African American has no money, no insurance and treats them accordingly. really, the golden color is green. money makes all of the difference. but i digress :)

    i have found that african americans are more familiar with fibromyalgia. i know many middleaged african american women with this condition. i have NEVER met another african american with cfs. this isolates me even further than the illness itself. there is NO support in my community for this illness at all but it exists. we suffer alone and in silence.

    hope this helps.


    [This Message was Edited on 10/16/2006]
  14. homesheba

    homesheba New Member

    very interesting post and im glad it was asked as i have also wondered about it and would forget to ask... plus i have wondered if men had it just as much as women but also just didnt say so.
    thank you for this info.
  15. victoria

    victoria New Member

    I think for men, they more often get dx'd with 'unknown' or something else; at least that is what the few male members of our local support group report, I'm not sure all 3 of them actually have the dx of FM...

    It took me a looooooong time to admit to CFIDS as the common notion/'joke' was that it was white women driving BMWs but who could go shopping at the mall... (and yes at the time I had the smallest BMW...)!

    And then 10 years later my son showed all the signs I have of CFIDS, then went on to get all the pain associated with FM by age of 17.

    I am positive that he would've eventually ended up with the dx of FM, but the doctor wouldn't even make a guess after running all the basic blood tests and they were all 'normal', altho he at least agreed there was something wrong with him since he had an abnormally low pulse and BP and losing weight ...

    BUT he also didn't know who to refer him to for further workup. So basically we were initially left hanging as there was no certain direction to follow.

    (Well, just as well, as I figured it out anyway - he was positive according to CDC standards for Lyme...)

    all the best,
    Victoria
    [This Message was Edited on 10/16/2006]
  16. carebelle

    carebelle New Member

    When I ask this last year they took the post down I hope yours is more successful. I believe it is a real good question. Just like heart desease affects different races .

    I am white but I have American Indian blood in me. Along with English,and Irish .
  17. elliespad

    elliespad Member

    I remember all the flack you got over asking this question last year, that's why I joked about it earlier. Imagine anyone taking offense at such a thing!
  18. damz68

    damz68 New Member

    I think you are right for the most part, they assume if you are black that you are poor and uninsured. But the poor blacks are treated just as the poor whites. Discrimination has changed. I think it is about rich/poor not black/white.
    As seen in NO.

    As far as race goes, according to Dr. Lapp, latinos have the highest rate of CFS. Funny thing is when I first got ill with some wierd stomach flu I was working on a construction job that had over a hundred illeagles working.
  19. Slayadragon

    Slayadragon New Member

    If I were going to take a wild guess about this, I would start with zion1971's comment about fibromyalgia being common in the black community but "CFS without the fibromyalgia" (yet to have its own separate name) not being common.

    I have had genetic testing done, and my immune genes are very bad. (This is consistent with another test that suggests that my immune system is working poorly and that my viral load is very high.)

    I have "CFS without the fibromyalgia" (which started with that drop-dead flu like they had in Incline Village). My brother has the disease, it seems that my grandfather had it, and my mother may have a milder form.

    What I wonder is whether "CFS without the fibromyalgia" is a pretty much purely genetic disorder, which strikes people regardless of their socioeconomic status. Maybe it just _seems_ like a "yuppie disease" because people who are more well-off have more access to doctors who will report it even if they nonetheless dismiss it as "nerves". (Lower-class people, on the other hand, may be dismissed as "lazy.")

    I think this sort of syndrome has been around for a long time. "Neurasthenia" (defined in my dictionary as fatigue mixed with cognitive difficulties) sounds an awfully lot like it, and was a not-uncommon diagnosis in the early 1900's.

    On the other hand, maybe fibromyalgia is part genetic but also substantially environmental. All that pain sounds like it could be a result of toxins to me, for example. If that's the case, then people who are more highly exposed to such toxins (such as people who live in polluted areas) seem more likely to get it. (Of course, there would be outliers who are just especially sensitive and thus get fibromyalgia even though they're not exposed that much.)

    Blacks and Hispanics are more likely to live in (and to have grown up in) polluted areas. If this hypothesis is true, they should be more likely than the general population to have fibromyalgia but not more likely to have CFS.

    It's hard to imagine that fibromyalgia was as common 50 years ago as it is now. "CFS without fibromyalgia" is easy to dismiss as being no big deal since there are no objective symptoms except the vague "tired and cloudy-headed". "CFS without fibromyalgia" is harder to dismiss, since people who cannot walk 50 feet without extreme pain have to be a) deliberately faking symptoms or b) actually in physical pain. That much pain seems likely to have been brought to doctors' attention even if the doctors eventually concluded it was hallucinatory.

    My guess is that the DePaul study mixed fibro and non-fibro patients together? I'd like to see them divided in order to determine whether race is significant in both groups.

    It also would be interesting to see if people who grew up and/or lived in polluted areas had more fibromyalgia than people who lived in less polluted ones.

    Actually, I may post this question on the board and see what kind of answers I get.
  20. Lolalee

    Lolalee New Member

    Interesting Post.