Who Else With CFS Do You Know?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 12, 2007.

  1. Slayadragon

    Slayadragon New Member

    For those with CFS: Do you know other people who also have the disease (or what seems to be the disease)?

    If so:

    Are they related by blood to you?

    When did they get sick?

    When did you get sick?

    Did you know one another before one or both of you got sick?

    To your knowledge, have you both been exposed to anything that could be considered a toxic element?


    The purpose of this question is to try to see to what extent CFS is caused by genetics vs. contagious pathogens vs. environmental problems (such as toxins or physical/emotional stress).

    (Another possibility is that it is caused by a spontaneous genetic mutation, but that is not something that we can study outside a laboratory.)

    Your contributions with regard to providing info would be much appreciated.


    P.S. Obviously we want to list only people you know in "real life," not on the Internet.
    [This Message was Edited on 01/13/2007]
  2. Slayadragon

    Slayadragon New Member

    The people I've met personally and who I know or suspect to have CFS are:

    * My maternal grandfather. He seems to have come down with the disease in the late 1920's and died of adrenal cancer in 1984. (He was about 20 when he got sick.)

    * My brother. He came down with what seems to be the disease in 1986. We have been in contact throughout our lives. (He was about 15 when he got sick.)

    * A good friend's mom. She lives in the community in Indiana where I grew up (her house was about 10 miles away). I have seen her sporadically over the years. We both got sick in about 1996, but had not been in any direct contact for a couple of years prior to that time. (She was about 55 when she got sick.)

    I have not heard of CFS being especially prevalent in the community where my brother and I grew up (and where my friend's mom lives), but it is possible.

    I had been living just north of Chicago for about 10 years when I got sick at age 32.

    Addendum:

    My other two siblings do not have CFS, at least not yet. My youngest brother is only 24, though.

    My mother was an only child. She may or may not have a mild form of CFS. If so, it was acquired in her 50's, after my brother and I both were sick. [This Message was Edited on 01/13/2007]
  3. malinta

    malinta New Member

    I was diagnosed in 1996 with cfs, my sister was diagnosed in 1997. I also have a close friend that has cfs. We did not meet until after I was diagnosed.

    My friend was diagnosed somewhere in the 80's.

    My sister and I are the only two of four siblings with this illness. Last year my sister started feeling better. She is almost back to feeling 100 % better. And this is someone who was bedridden most of the time, couldnt drive due to cognitive problems, etc.

    I along with my friend remain disabled. My friend lives in another state.

    As far as I know my sister and I werent exposed to anything that my two brothers weren't.

    Hope this information is useful.

    Mal
  4. Adl123

    Adl123 New Member

    Dear Lisa,
    I know 4 people with CFS. Three are cousins, and the other is a friend who has it in conjunction with Lupus.

    I dont know when they got it. One cousin 's activities are limited and the other two are still tooting around doing things. One has her own home-based business. She makes leather purses.

    My friend has had it for a long time. She's limited in her activities and I don't know how she, or any of the others got it. My relatives are not investigating it in any way, as far as I know. My friend is a military wife with many years overseas.

    As for me, I first showed symptome in about 1970, and the Dr. just told me to teach half a day. that sisn't last long. I worked full time (sometimes 3 jobs) and very hard until 1993, when I had a "crisis" and within 9 months I had taken early retirement from teaching.

    Terry



    [This Message was Edited on 01/13/2007]
  5. Slayadragon

    Slayadragon New Member

    I wish that the general population knew more about stories like yours (and mine).

    I had no idea it was so dangerous to push myself really hard when in bad physical condition. If I hadn't done that, probably I never would have gotten CFS.

    Of course, slowing down when you're sick is just common sense. Unfortunately it's not the American Way, though.

    [This Message was Edited on 01/13/2007]
  6. ritatheresa

    ritatheresa New Member

    I am sure I developed this around puberty. It is then that I began to develop fatigue. I did test positive for past Epstein Barr infection, but I do not ever recall being sick with mono ever.

    My sister definately is suffering from early stage. She is always exhausted but able to function, that's how it started for me.

    My daughter also show signs. Since I was diagnosed last year she started to display symptoms. Her doctor thought I was being an alarmist, but I am watching her very closely. I'm trying to correct our nutrional health because I already see improvement with simple diet changes. We are both also taking fiber each day, and I take Acidophillus. She's also feeling better.

    My sister in law is also suffering from what seems to be a post viral condition.

    I pray this can be figured out one day in the future. Too many peoples lives have been devastated, myself included.

    Hope I helped you somewhat, thanks for your post, Ritatheresa
  7. Forebearance

    Forebearance Member

    I have no "real-life" friends or relatives with CFS.

    At the time I came down with it, I was living alone and far away from my family members. If it was contagious, I probably caught it from my workplace.

    Since PIV-5 in pigs (PRRS) is contagious for two weeks when they first get it, I've thought about who I may have come in contact with the first two weeks of my illness. The answer is only a few grocery store employees. I was really on my own at that time.

    I was under some career stress before getting sick, which kept me awake at night and probably ran down my immune system. The only toxic exposures would have been a few fabric dyes and some new-car interiors (plastics).

    My job involved visiting extension offices, which were also frequented by pig farmers.

    Forebearance
    [This Message was Edited on 01/13/2007]
  8. vickiw

    vickiw Member

    A friend from work has had CFS for about 30 years. I've had it since September 2002. We were working together when I got sick.

    I have a first cousin who has had CFS for about 25 years. Her 13 year old daughter was diagnosed within the last year or two.

    My cousin had all of her amalgam fillings removed but I don't think it made a great deal of difference. I don't believe her daughter has any fillings. I can't think of any common toxic elements that we were all exposed to. However, all of us had mono.

    It's possible that my grandmother on the same side of the family also had CFS (I grew up with the impression that family members thought she was lazy and somewhat of a hypochondriac).
  9. grace54

    grace54 New Member

    I have 3 friends with cf/fibro. All type A's all seem to be brought on after many negative emotional experiences such as divorce, death in family, abuse etc. Who knows what we were all carrying around waiting for a stressed immune system to take us down. I know of no infections in any of us except yeast issues. Hormone deficiency is what they discovered in me at FFC.None of us related and no close proximity, suffered about 6-7 years. Good subject
    [This Message was Edited on 01/13/2007]
  10. acer2000

    acer2000 New Member

    Are they related by blood to you?

    I know nobody else with this condition (CFS), no family members have it or any friends.

    When did you get sick?

    I got it following a successful heart operation. I had been burning the candle at both ends for about 2 years before the operation, and then I went back to work before being fully recovered.

    To your knowledge, have you both been exposed to anything that could be considered a toxic element?

    My mother was a dentist, so its possible I could have been born with a higher than normal mercury load, although prior to my operation and stressful job, I had not shown any symptoms of it. I only have 4 small amalgams, which I will probably have removed. Dentist says they can "drill around them" and not vaporize the fillings, so I'll probably do that soon. I did have some allergies and asthma as a kid, but they both went away by the time I hit puberty. Always had tons of energy though.
  11. yellowbird

    yellowbird New Member

    .>>(Another possibility is that it is caused by a spontaneous genetic mutation, but that is not something that we can study outside a laboratory.)

    From the front page of the LA Times:

    Chronic Fatigue Is in the Genes, Study Finds
    Mutations are to blame for a syndrome often scoffed at as imaginary, researchers say.

    By Thomas H. Maugh II, Times Staff Writer
    April 21, 2006

    Chronic fatigue syndrome, often dismissed as the imaginings of depressed and whiny people, is caused by genetic mutations that impair the central nervous system's ability to adapt to stressful situations, according to a major new study by the Centers for Disease Control and Prevention.

    Small changes in many of the genes in the brain prevent the nervous system from rebounding from everyday stress and from less frequent, stronger pressures, eventually triggering a cascade of molecular responses that leave the patient severely debilitated, researchers reported Thursday in 14 separate papers in the journal Pharmacogenomics.



    "This is the first credible evidence for a biological basis" for the syndrome, said CDC Director Dr. Julie L. Gerberding.

    The findings will provide immediate help in diagnosing the disorder, which often puzzles physicians because of the broad spectrum of symptoms and the absence of defining biochemical markers.

    It should also lead to the development of effective treatments for patients, who receive only therapy to mitigate symptoms — or in some cases are scoffed at as slackers.

    "It is very hard to treat an illness until you understand what it is physiologically," said Dr. Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City. "This is a very important foundation" for developing new treatments.

    Chronic fatigue syndrome, commonly known as CFS, was first recognized in the 1980s but was long dismissed as the complaint of "a bunch of hysterical, upper-class white women," said Dr. William C. Reeves of the CDC, who led the new study.

    Diagnosis is difficult because many of the psychological symptoms, in mild form, are common traits of a modern stressful life.

    Over the last two decades, most physicians have come to recognize CFS as a valid illness, he added, but there has been virtually no information about its causes. It has even been difficult to provide a precise definition of the disorder.

    Experts agree that it affects as many as 1 million Americans, causing severe exhaustion, widespread musculoskeletal pain, impairments in thinking and sleep disturbances.

    It strikes four times as many women as men but is equally debilitating in both. It occurs most frequently between the ages of 40 to 60.

    Physiological manifestations, which must be present for at least six months for a diagnosis, can include sore throat, tender lymph nodes, headaches of a new or different type from those experienced in the past, and malaise after exertion.

    "They are as impaired as people with multiple sclerosis or AIDS or who are undergoing chemotherapy for cancer," Reeves said. "They don't die, but they are severely debilitated."

    To learn more about the disorder, a CDC team focused on Wichita, Kan., which turns out to be a statistical microcosm of the United States in terms of wealth, urbanization, age, race and other factors.

    Initially, the team surveyed a quarter of the population, or about 56,000 people, looking for symptoms of CFS.

    Reeves said they found that about 16% of people with the disorder had been diagnosed and received some treatment.

    The group then identified 227 CFS volunteers who each checked into a hospital for two days to undergo a complete set of mental, physical, blood, sleep and other tests. Included was an assessment of the activity of 20,000 genes.

    Data in hand, the CDC assembled four independent teams — each containing experts in medicine, mathematics, molecular biology and computer science — and challenged them to interpret the results. Each team produced two or three of the new papers, and their results were surprisingly consistent.

    <b>The teams found that there were at least four distinct forms of the disease, each with its own genetic profile and symptoms but all including disabling fatigue. Some had relatively mild symptoms, whereas others were debilitating.

    But all the forms shared genetic mutations — technically called single nucleotide polymorphisms — related to brain activity that mediated the response to stress.

    In particular, five polymorphisms in three genes were "very important," said Dr. Suzanne Vernon of the CDC, co-leader of the study. Those polymorphisms alone were sufficient to diagnose about 75% of cases.
    </b>
    The genetic findings are particularly important because they can lead to new drugs, said Dr. K. Kimberly McLeary, president and chief executive of the Chronic Fatigue and Immune Dysfunction Syndrome Assn. of America.

    "Pharmaceutical companies have been sitting on the sidelines because they have not been able to get their hands around CFS," she said. "This gives them something to latch onto" and identifies treatment possibilities that haven't been explored.

    The teams also found a strong correlation between the severity of CFS and what they called allostatic load, the cumulative wear and tear on the body resulting from chronic or inadequate adaptation to stressors — such as changes in everyday routine, disease, and physical and emotional trauma.

    The CDC is gearing up to attempt to replicate the findings in a study of 30,000 people in Georgia, Reeves said.

    The data have been given to 30 other groups of scientists who will meet at Duke University in June to present their own interpretations.
  12. cherylsue

    cherylsue Member

    I wonder what drugs the pharmaceutical companies are developing to help with CFS gene mutations?

    CherylSue
  13. musikmaker

    musikmaker New Member

    I have a first cousin that has had CFS for 30+ years. I have had it since 4th grade when I had a bout with hepatitis. I think my younger sister is starting to get the symptoms though she isn't there in her thinking. She is in the process of going to different Doc's (we all know the scenario).



  14. LISALOO

    LISALOO New Member

    I don't know anyone, my mom knows to people who got better after 3-4 years