Sujay and parents with CFS children

Discussion in 'Fibromyalgia Main Forum' started by AmyKaiser, Jul 7, 2003.

  1. AmyKaiser

    AmyKaiser New Member

    April 2002 (still active April 2003)

    The OFFICE OF CIVIL RIGHTS (Department of Education) will investigate complaints against school districts/colleges/universities for not handling CFS or MCS students appropriately. We have a complaint ongoing and find that it is not stressful for us -- and just filing the complaint resulted in better treatment from the school district. They have an online complaint form at

    edit edit....

    If a school district has ever threaten the Becca Bill or reporting you to Social Services, this constitute harrassment -- and they will both investigate and have the authority to take action. It costs NOTHING...

    If your child/student is no longer of school age, they cannot directly take action; but you can email ocr@ed.gov with your experiences (citing the school district) and your belief that this is a systematic discrimination against a class of students (those with CFS and MCS).

    Please pass word along to the parents of any students with CFS... again, it costs nothing and they are interested in receiving details of complaints... When I asked them for past cases with CFS, they could not locate any ....it may be time to change that...

    Ken Lassesen


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    April 2001 (still active April 2003)

    Please sign the Petition!


    The National CFIDS Foundation and RESCIND are sponsoring a petition to recognize Myalgic Encephalomyelitis as a serious and debilitating disease.

    The petition is at: http://www.petitiononline.com/MEitis/petition.html

    Permission is hereby granted to anyone to include the petition in newsletters or to have it available at conferences.

    For people who do NOT have access to the Internet (and preferably only those) signed copies of the petition will be collected at the RESCIND office, and we will take them to the next meeting of the "CFSCC" in whatever incarnation and timeframe that might occur. The RESCIND mailing address is:

    M.E. Petition
    c/o RESCIND, Inc.
    9812 Falls Road
    Suite #114-270
    Potomac, Maryland 20854

    The response thus far has been most impressive and the petition is already ranked as one of the top 25 at that site. There have been more than 460 signatures in a little more than a week, with NO publicity push, just word of mouth on the Internet. The comments are very informative and insightful. Many comments express and capture the pain, frustration and despair of living with this illness that is so misunderstood (due in large part to the inappropriate, demeaning name) along with long overdo demands for recognition and help. They clearly reflect positively on the knowledge, dedication and resolve of patient community as a whole.

    Hillary Johnson, author of Osler's Web, was one of the first to sign. After all the years of research and dedication that went into the writing of her book, her endorsement is significant and reassuring. She wrote:

    "CFS was a name selected in 1988 by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the SSA than about public
    health. Their deliberate intention--based on the correspondence they exchanged over a period of months--was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. In doing so, they also deliberately ignored a substantial body of published research on ME. The harm they have caused is surely one of the
    greatest tragedies in the history of medicine. The government scientists involved in this fraud should have been prosecuted years ago. Restore the name in the U.S."

    It is helpful to give information as to where you are from when signing the petition. Also, please remind everyone that family, friends, co-workers etc. can sign also -- it does not have to be limited to patients.


    Tom Hennessey, jr
    President
    RESCIND, Inc.
    www.geocities.com/capitolhill/4277

    Jill McLaughlin
    Executive Director
    National CFIDS Foundation, Inc.



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    Old announcements that used to be here can be found on the General Information page with links to their full text.



    [This Message was Edited on 07/08/2003]
  2. AmyKaiser

    AmyKaiser New Member