going in circles

Discussion in 'Fibromyalgia Main Forum' started by tala, Nov 20, 2002.

  1. tala

    tala New Member

    Friends..Everywhere I've turned, CDC, NIH, and others, all responses are they have no specific data concerning fibro/cfs in cluster groups or otherwise.
    Starting at a local level is my next step.
  2. tala

    tala New Member

    Friends..Everywhere I've turned, CDC, NIH, and others, all responses are they have no specific data concerning fibro/cfs in cluster groups or otherwise.
    Starting at a local level is my next step.
  3. amymb74

    amymb74 New Member

    did you check out the info on the studies in Wichita? Amy
  4. Roxi

    Roxi New Member

    While reading bulletins here recently I know I read something about a cluster.
  5. Mikie

    Mikie Moderator

    Get this book. It details the cluster outbreaks of CFIDS starting with the one in the mid-80's in Incline Village, NV. The CDC and NIH are well aware of cluster outbreaks; one of them was about 35 miles up the coast from me in Punta Gordo in the 50's.

    You will get very angry at how the CDC and NIH have stonewalled on this issue and how funds set aside for research for our illnesses has been used for other purposes. Uncle Sam's been a crappy uncle to those of us with these illnesses.

    Love, Mikie
  6. tala

    tala New Member

    Yes i've started looking closer to home about this subject. The site i found about sedgwick county didnt supply much info though. Would you please send me the links you found? No you're not being pushy my friend. It's going to take "us in numbers" to make anything widely known, and I've started rounding up those here in my town. thnks for your help.
  7. amymb74

    amymb74 New Member

    CFS/CFIDS/ME Clusters Listing
    Some History - The Clusters in this Century

    (From the video Living Hell, prod. Lennie Copeland, Authentic Pictures, in collaboration with The CFIDS Foundation of San Francisco, California, 1993, 60 min.., available from the CFIDS Association of America.)

    1934 - LA Hospital - 198 employees
    1936 - St. Agnes Convent - Wisconsin
    1937 - Erstfeld, Switzerland
    1938 - Frohberg Hospital, Switzerland
    1939 - Herefield Sanatorium, England
    1948 - USAF Base, Iceland
    1949 - Adelaide, South Australia
    1950 - St. Joseph Infirmary, Kentucky
    1952 - Middlesex Hospital, London
    Copenhagen, Denmark
    Lakeland, Florida
    Whitley Hospital, England
    1953 - Chestnut Lodge Hospital, Maryland
    Psychiatric Hospital, Washington, DC
    Indiana University
    Jutland, Denmark
    1954 - Tallahassee, Florida
    Seward, Alaska
    British Army, Berlin, Germany
    Liverpool Hospital, England (staff)
    1955 - Royal Free Hospital, England - 292 staff
    Dalsten, England
    Perth West Australia
    Gilfach Goch, Wales
    Boscombe, England
    Addington Hospital, South Africa
    Johannesburg, South Africa
    Seybwema, Sierra Leone
    Patreksfordur, Iceland
    Ridgefield, Connecticut
    Punta Gorda, Florida
    Newton Willows, England
    Pittsfield and Williamstown
    Hygiea, Sweden
    Coventry, England
    Brighton, South Australia
    1958 - Athens, Greece - nurse's school
    1959 - Sporadic cases in England
    1961 - Basel, Switzerland
    1962 - Convent, New York
    1964 - England (Schools)
    1965 - Franklin, Kentucky (factory)
    1967 - Scotland, sporadic cases
    1968 - Fraidek, Lebanon
    1969 - Medical Center University, New York
    1970 - North Carolina Symphony
    Lackland Air Force Base
    Hospital for Children, London
    1975 - Sacramento, California (200 staff)
    1976 - Southwest Ireland
    1977 - Dallas-Fort Worth, Texas
    1979 - Southampton, England
    1980 - Helensburgh, Scotland
    West Otago, New Zealand
    1984 - Incline Village, Nevada (300 patients)
    1985 - Canada
    Lyndonville, New York (125 children)
    1988 - Sonora, California
    1990 - Elkgrove School, California

    Even though the experts assure us that we are not contagious, cluster outbreaks such as those listed above make us wonder how definite those assurances are.

    I can't help wondering, when looking at the above list, what in the world happened in the early 1950's? There may be many answers - but are the people sick with these "difficult" illnesses the "canaries in the mine" for our planet? Somehow, I don't think I want to know the answer.

    Copyright 1996 Sue Klaus

  8. amymb74

    amymb74 New Member

    Heres a bit from one of their articles:

    Diverted Funds Restored

    The CFIDS Association of America immediately launched a successful Congressional campaign to gain restoration of the full $12.9 million to CDC's CFS research program. These funds, to be restored incrementally over the period 1999-2004, are being managed by the highest levels of DHHS and CDC to ensure that they are used as directed by Congress on CFS research.

    As a result of the influx of funds to CDC's CFIDS research program, the agency has sharply increased its efforts to better understand this illness. After gathering recommendations from CFIDS advocates and researchers, CDC has developed a plan to "reinvigorate" its research program. The agency is initiating survey; a registry of CFIDS patients; a revision of the CFS case definition (based on medical evidence); and research on endocrine and sleep abnormalities, pathogenic agents, environmental exposures and brain imaging. CDC has also stated that it will expand its collaborations with other scientists, look into the quality of life of CFIDS patients,**** investigate reported clusters in occupations and families,**** and launch a national CFIDS information campaign directed at health care providers.

    - Looks like the are/have done studies on clusters in the workplace & in families - I can tell you if you are not a member-join! They have great info - check out their website. They put out a cfids chronicle 4x a year & also a physicians edition so you can have it sent directly to your doc (2 docs are included in your membership) If you are having financial problems due to cfids then you can have a complementary membership. At the back of the chronicle there is a classified section for people doing exactly what you are doing - trying to gather info. You could put an ad in about how you're researching clusters & a way to contact you if they have info to share. If you want info on how to join let me know - I know their website doesn't mention the free membership due to hardship but if that is your case I have the adress to write to. I have belonged to the organization for about 8 years & I can tell you would be useful to them. They encourage research, input from their members, & awareness. I think I am going to become more active in the group instead of a silent member! I'm rambling..........Amy
    [This Message was Edited on 11/22/2002]
    [This Message was Edited on 11/22/2002]
  9. amymb74

    amymb74 New Member

    I don't know if this info is allowed here or not - hopefull you will get it first if it isn't -

    There is a growing network of support groups who are combining information and forces to try to unravel the origin of our diseases. The one’s who are most active are:

    The Mycoplasma Registry, 303 47th Street, No. J-10, San Diego, CA 92102-4801, (619)266-1116

    Candida & Dysbiosis Information Foundation, PO Drawer JF, College Station, TX, 77841-5146, (409) 694-8687

    The Road Back Foundation, 4985 N. Lake Hill Road, Delaware, OH, 43015-9249, www.roadback.org

    Keep Hope Alive, PO Box 27041, West Allis, WI 53227

    *small section of an article written by sharon briggs - shasta cfids
  10. amymb74

    amymb74 New Member

    5. CFS Program Activities
    Drs. Hughes and Mahy reviewed the approach used at CDC for the study of infectious diseases. Dr. Reeves introduced key scientific staff, outlined the CFS program objectives, and reviewed the prevalence findings from the Wichita CFS study. A detailed research plan will be presented to the program-review group in the coming weeks; program plans will also be presented at the upcoming meeting of the CFS Coordinating Committee. Future activities of the CFS program tentatively include the following: continue the Wichita study; maintain an active clinic at the study site; determine if the Wichita data can be extrapolated to the general population; continue to assess risk factors for CFS; determine if there are differences in the occurrence of CFS by region; initiate studies using molecular fingerprinting techniques to identify patterns of genetic expression; begin a national registry of CFS patients; provide current and appropriate health information to a variety of constituent audiences; pursue hiring or contracting with a neuroendocrinologist; and begin work on review of the current CFS case definition. The program is also interested in conducting cluster investigations and in developing more-focused health education activities and products. Participants addressed several aspects of the CFS research program (below).

    James M. Hughes, MD, Director
    National Center for Infectious Diseases
    Mailstop C12
    Centers for Disease Control and Prevention
    Atlanta, Georgia 30333
    Phone: 404-639-3401

    Brian W.J. Mahy, PhD, ScD, Director
    Division of Viral and Rickettsial Diseases
    Mailstop A30
    Centers for Disease Control and Prevention
    Atlanta, Georgia 30333
    Phone: 404-639-3574

    William C. Reeves, MD, Chief
    Viral Exanthems and Herpesvirus Branch
    Mailstop A15
    Centers for Disease Control and Prevention
    Atlanta, Georgia 30333
    Phone: 404-639-1338

  11. amymb74

    amymb74 New Member

    do a search for 'cfids clusters' - that will get you the names & how to contact those researching clusters of cfids. There are so many resources to try - you should be able to get some answers or at least bring your problem to them - let me know how it goes or if you need more info......don't forget - if you don't already belong then join the cfids assn of America. theyre a great organization. Even this site supports them! You don't get the 1 on 1 support like you do here but they have the whole activist thing going on.
    Also, do get Osler's web like Mikie said- great book! I read in 2x![This Message was Edited on 11/22/2002]
  12. tala

    tala New Member

    Oh my gosh Amy..Little do I know about what I'm attempting to find out and how to go about it. After seeing all you posted, my heart sank with sadness. I'm but one fish in the sea. I don't have the energy to persue. Thank you for all the information though. God Bless You.
  13. nancyneptune

    nancyneptune New Member

    You guys I love this kind of stuff. I'll do the research. I need to know what the hey you're talking about with the clusters thing tho. Do you mean that in certain areas geographically there have been large numbers of people getting CFIDs? Does that mean Fibro too? How do they know there are "outbreaks" of it? It takes forever to get diagnosed I thought. I will educate myself on the basic backround stuff first, then I'll go for the jugular. I don't trust the CDC either. I don't know why you would think they'd be honest about anything, they are a gov't agency with many secrets. They must always be taken with a grain of salt. Like the Ex-Files says, "trust no one".
  14. Mikie

    Mikie Moderator

    Like I'd like to be on a national registry available to the CDC or NIH. No way!

    Love, Mikie