how many people in your area have CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Aug 11, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    How many people do you know in your town that have CFS or FM?

    I was wondering because an article I read recently estimated the CFS population at 1 person out of 1000. Yet, in my own small north-western corner of Calgary, Canada, I personally know six people who have our DD, and they know many others in Calgary who are sick with it. In fact, I remember there are five or so in our immunesupport community who live here in Calgary.

    So I am curious to know how prevalant CFS/FM is in your area. Do you think that your town has a high CFS/FM population, or a low one? How many people do you know locally who have the disease?

    ((curious)) Shannon

    [This Message was Edited on 08/11/2006]
  2. meowee

    meowee New Member

    Strangely enough, I don't know any personally. I have heard from other people of a few that have it pretty badly, they are on canes, etc.

    good question.
  3. victoria

    victoria New Member

    and I'm in a metro area of less than 200,000 - in fact i think it is less than 150,000.

    And I know that there are more, because they keep popping up here and there... it is such an isolating disease, most/many cannot attend the local support group.

  4. mrdad

    mrdad New Member


    My experience has been that if I mention my problem with
    CF, almost everyone I speak to either thinks they could
    have it or that they may have " hadthat" in the past.

    Most of the time if not all the time their fatique re-
    volves around an over extended lifestyle especially
    among my young friends! It becomes a momentary explanation
    for their being tired.

    Its almost nap time again!
    MRDAD
  5. Sandyz

    Sandyz New Member

    I live in a rural area. The town I live by has a population of about 1500. I know of about 4 other people that have it. I asked my chiro though how many people with FM or CFS patients he has and he said he has 25 patients in the area. I wish we would have a support group in the area but we don`t. The people that have it here that I know seem to want to keep it to themselves.
  6. keke466

    keke466 New Member

    I live in a small rural town. I don't know how to find out cause the dr can't tell me who they are. Was thinking about putting out the flyers from here and putting my name and phone number or email address on them and tell them they can contact me if they want but not sure about that. Might not be a good idea to put my info out there.

    Then thought about running a small ad in newspaper or penny news paper asking for info or something. Not sure how to word it.

    Keke
  7. darude

    darude New Member

    They are diagnosing on average one child a week at the Childrens Hospital here. FMs group here has 66 people in it and the CFS group around 35. mmmmmm scary isn't it. I personally know 14 people with these DD's here. Also there is a VERY high rate of MS and autoimmune disease. This City is TOXIC!!!
  8. victoria

    victoria New Member

    DePaul University
    Media Contact: Roxanne Brown Jahi 312/362-8623

    Prevalence of Chronic Fatigue Syndrome is Highest Among
    People of Color and Women

    A ground-breaking, community-based study of Chronic Fatigue Syndrome (CFS), headed by a DePaul University professor of psychology, explodes the myth that individuals with the condition are largely white, middle-class women who don’t really have a serious malady.

    Leonard Jason’s “Community-Based Study of Chronic Fatigue Syndrome,” which appears in the October 11th issue of the American Medical Association’s Archives of Internal Medicine, reports that there is greater prevalence of CFS among African Americans, Latinos and women, and affects 422 of every 100,000 Americans. The rate of prevalence is twice as high as rates previously reported by the Centers for Disease Control, which means as many as 800,000 people nationwide may suffer from the condition.

    “This is the first random sampling with full medical work-up of an ethnically diverse population,” said Jason. “Data from our study indicate that CFS is one of the more common chronic conditions.”

    The random telephone sampling of 28,673 adults in Chicago not only found the highest levels of CFS among people of color and women, but individuals with CFS were more likely to have lower levels of education and occupational status.

    According to the study, previous findings that falsely indicated that patients with CFS come from upper social classes were based upon those individuals’ access to particular health care settings.

    “Studies that relied on referrals from physicians and medical clinics have under-estimated prevalence because many low-income individuals lack access to the health care system and many patients with fatigue drop out of the medical care system,” explained Jason.

    The study began with telephone questioning of randomly selected residents in eight Chicago communities that offered racial/ethnic and socioeconomic diversity. Those persons who indicated during the survey that they had suffered from unexplained, persistent or relapsing chronic fatigue for six months or longer and did not have a disease that might cause fatigue, were defined as having chronic fatigue syndrome-like illness.

    This group participated in the second phase of the study, which included a detailed medical examination at Mercy Hospital and Medical Center.

    According to Jason, more than 90 percent of those sampled and found to have CFS were previously undiagnosed. “This indicates that there are many people in the general population who are not currently diagnosed or under adequate medical care,” he said.

    In the community-based study, Latinos demonstrated the highest CFS prevalence at 726 cases per 100,000 people versus 310 per 100,000 for whites. The Latino population sampled within the study was primarily comprised of Mexican Americans and Puerto Ricans.

    African Americans, previously thought to be far less afflicted by CFS than whites, account for a prevalence rate of 337 per 100,000.

    Chronic fatigue syndrome prevalence among women in the study was considerably higher than for men, with 522 women afflicted per 100,000 as compared to 291 men per 100,000.

    The prevalence rate for women with CFS is higher than it is for AIDS, breast and lung cancer. “When comparing the prevalence of CFS in women to the prevalence of other diseases, CFS emerges as a serious women’s health concern,” said Jason.
  9. blessedmom2four

    blessedmom2four New Member

    i just moved, and then found out somebody in my new church has it. Weve talked several times, i literally cried when she called me.

    i felt like God moved me there for a reason because i faced so much persecution at my prevous church because the dr. never could find what was wrong, and i was on alot of meds at the time
  10. Shannonsparkles

    Shannonsparkles New Member

    Blessedmom2four, I'm very very happy that you have a friend now who can relate to the DD, and hopefully a community that will be accepting of you. (( ))

    Victoria, thanks for the article. I was very surprised to see that the disease rates in women and men were so close - about 500 women to 300 men. This may not be a "woman's disease" after all!

    Darude, ty for the local info. It's awful to think of children getting this DD. What IS it about Calgary anyway?