CFIDS and FMS Support Group of DFW

Table of Contents

  • Meeting Calendar
  • Cheney Seminary - Professional Video Tape Available
  • May 12 CFS/FM Resolution Adopted by Texas Legislature
  • May Awareness Activities
  • New Policy
  • CDC Misappropriates 57% of CFS Research Funds
  • CFS Name Change Working Group Formed by Federal Committee
  • Pain Bill Introducted in Congress
  • New York to Florida Wheelchair Relay for FM/CFS Awareness
  • Transcript of a February 1999 Cheney Presentation Available
  • Chency & Suhadolnik Keynote: November '98 Philadelphia Symposium: Summary of Video Available
  • Media Coverage
  • Brain Surgery May Help FM and CFS
  • Researchers Find Neurological Abnormality in Fibromyalgia
  • Germans Research Hydrotherapy for Fibromyalgia
  • Ampligen
  • Researchers at U.T. Southwest Find Enzyme Abnormality in GWS
  • LTD Trends: Good News and Bad News 
  • New SSA Program: Trouble for some with SSDI
  • New SSA Ruling Should Help CFS Applicants for SSI and SSDI
  • CFS Radio Show Transcripts Available
  • A Tribute to our Caregivers
  • Tips for Family Caregivers
  • It's Helped Me!
  • Internet Resources


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    CHRONIC FATIGUE SYNDROME and
    FIBROMYALGIA SUPPORT GROUP OF D/FW

    Sponsored by Harris Methodist HEB Hospital

    Summer 1999 NEWSLETTER

    New Policy

    Those who contact our support group requesting information will be sent a brochure with information about our support group, CFIDS, FM, and contact info for national organizations. They will also receive a copy of our medical professionals referral list. Our referral list includes psychologists, psychiatrists, chiropractors, naturo-paths, myofascial therapists, massage therapists, kinesiologists, herbalists, dentists, lawyers, etc.

    The packet includes information about our group, CFIDS and FM brochures, educational material order forms from national organizations, and the referral list. It also includes over 20 articles on the following topics:
    Symptoms and characteristics of CFS
    Fibromyalgia treatment overview
    Integrated medicine
    Treatment approaches of Drs. Cheney, Teitelbaum, Crook, Conley, and Friedberg
    Sources of vitamins, supplements & herbs
    NMH treatment
    Gulf War Syndrome and CFIDS
    Pain treatment
    Research findings on Substance P and RNase-L
    Info on documenting & applying for disability
    Coping and management tips 

    The complete 60-page information packet costs $5.00. (If you pick it up at a meeting it is $4.00.) Those facing financial difficulties can receive it at no cost.

    Contact Carol Sieverling to receive a packet.

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    CDC Misappropriates 57% of CFS Research Funds

    The Inspector GeneralÌs report determined that of the $22.7 million the CDC was allocated for CFIDS research since 1995, the CDC spent only $9.8 million on CFIDS research. The report also stated that CDC officials lied to Congress about the funds.

    The CFIDS Association of America was instrumental in bringing this to light, particularly in assisting Dr. William Reeves, the whistleblower at the CDC. Kim Kenney, The CFIDS Association's Executive Director stated "We have suspected for some time that the funds we fought so hard for on Capitol Hill never made it to CFIDS research labs. We are outraged and will not let this matter rest. We want the funds restored and the responsible parties held personally accountable. This is a betrayal of trust in medicine and government."(Information for this story was taken from the article in the May/June 1999 CFIDS Chronicle.)

    You can help by writing your representatives in Congress and asking them to restore the money. You can find their addresses as well as an appropriate form for your letter at the Congressional email website. A sample letter can be found at CFIDS Association. Your voter registration office (see the blue pages in your phone book) can also tell you who your representative and senators are. 

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    CFS Name Change Working Group Formed by Federal Committee

    At the last CFSCC (Chronic Fatigue Syndrome Coordinating Committee) meeting Kim Kenney, Executive Director of The CFIDS Association of America, was charged with developing a set of criteria for changing the name. She surveyed more than 150 patients, doctors, and researchers from around the world.

    The criteria that were presented and approved include the following: The name must have the support of prominent members of the medical and research communities to encourage its acceptance and promote its usage in journals; if the name is scientific it must be evidence-based, eliminate or minimize the word "fatigue", not focus on any one symptom, not portray a condition so broad as to be meaningless, describe symptoms and/or affected body systems, not stigmatize those diagnosed; it must not cause confusion by sounding like other previously named conditions; it must be possible to use the name internationally and attempts must be made to build international consensus.

    Kim also proposed the formation of a workgroup to explore the issues involved in changing the name and make a recommendation to the CFSCC and the Secretary of Health and Human Services. The workgroup proposal carries several deadlines: formation by Aug 31, first meeting by Nov 1, and recommendation of a new name by Sept 30, 2000.

    A senior level DHHS staff person, perhaps the Surgeon General, would chair the working group. The remainder of the group would consist of three members of the CFSCC (one of whom will represent a federal agency such as the CDC or NIH), three patient advocates, three CFIDS clinicians, and three CFIDS scientists. Members may come from outside the US. (Information in this story came from an article in the May/June 1999 CFIDS Chronicle.)

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    Pain Bill Introducted in Congress

    Senator Connie Mack (R-FL) and Senator Ron Wyden (D-OR) introduced The Conquering Pain Act of 1999 to assess and improve the quality of care given to patients in extreme pain due to chronic illness and make this information far more accessible to patients, their families and health care providers.

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    New York to Florida Wheelchair Relay for FM/CFS Awareness

    On June 16 Russell Jones began a 1,246 mile journey in his wheelchair from Constantia, New York to Daytona Beach, Florida. Volunteers will take turns pushing him along the route. Jones is the President of Our World FM/CFS. The group is seeking volunteers to push him. Jones' "Push for Awareness" is expected to conclude July 2 in Daytona Beach. 

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    CAB ON AMPLIGEN BEING FORMED

    A National Community Advisory Board is forming to promote Ampligen and monitor the safety of trial subjects.

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    Researchers at U.T. Southwest Find Enzyme Abnormality in GWS

    Robert Haley and team found many GWS veterans have low levels of a gene (PON-Q) that controls production of an enzyme that helps destroy toxins. The enzyme is highly specific for nerve agents sarin and soman, and the pesticide diazinon.

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    NEW SSA PROGRAM: TROUBLE FOR SOME WITH SSDI 

    On June 7, 1999 the Clinton Administration announced a new program to help those who are receiving SSA disability benefits on the basis of "mental impairment" or "affective disorders" to return to work. This program is part of the White House Conference on Mental Health and may be very helpful to certain people. However, many people with CFS and FMS accepted an SSDI award on the basis of psychiatric illness rather than physical illness, usually because so little was known about CFS/FM.

    The news release stated that as many as 60% of affective disorder cases can be controlled with appropriate treatment. However, a review of 200 Social Security claims revealed that many beneficiaries with affective disorders were not being treated by mental health professionals. SSA believes that by providing the best possible mental health treatment to disability beneficiaries with affective disorder, many of these individuals will be able to overcome the disabling effects of their illness and successfully transition back to work.

    This new project could adversely affect those with CFS/FM that have been awarded benefits based on mental impairments. If your SSDI claim is in process, try not to accept an award based on mental impairment. If you already have SSDI and the award was for a mental/psychological condition, it may be a good idea to establish a relationship with a psychiatrist or clinical psychologist who understands CFIDS/FM. (We have several on our referral list.) His or her records, and being under their care, might help avoid serious problems if you are reviewed. 

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    NEW SSA RULING SHOULD HELP CFS
    APPLICANTS FOR SSI AND SSDI

    On April 30 the Social Security Administration issued a Ruling stating that CFS is a Ïmedically determinable impairmentÓ, clarifying that disability benefits apply to CFS patients, just as they do to other disabled Americans. While this won't make obtaining benefits a breeze, it should make it easier to acquire benefits at an earlier stage in the process. The Program Operations Manual System, the basic guidebook for handling disability claims, will be revised shortly to reflect the Ruling. Training of SSA personnel about the ruling, which is binding on adjudicators at all levels, including administrative law judges, will begin in July. A copy of the Ruling can be found at The CFIDS Associations website, or can be obtained by sending a business-sized, self-addressed envelope with 77 cents postage with a request for "SSA Ruling" to the CFIDS Association, PO Box 220398, Charlotte NC 28222-0398. An analysis of the ruling can be found at the Social Security Advisory Site (not affiliated with SSA) at http://ssas.com/ssr99-2p.htm. 

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    CFS RADIO SHOW TRANSCRIPTS AVAILABLE

    A New York radio station airs "The CFS Radio Show" every other Sunday. Nationally known researchers and clinicians are interviewed. Transcripts are available at the website members.aol.com/rgm1/private/transcr.htm. A transcript of an interview with Dr. Cheney can be found there, as can Dr. Myra Preston's discussion of QEEG brainmapping. Another interview is with the researchers who developed Immunocal, the whey protein supplement. Other topics include stealth viruses, Ampligen, HHV6, Amino Acid Therapy, RNase-L dysfunction, CFS and ADD/autism in children, and mycoplasma. 

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    Internet Resources

    The transcript of the chat on FMS and Exercise, led by Kim Jones, RN, MN, FNP, is available at http://my.webmd.com/members/521842. Kim also led a discussion of FMS and Sleep that is at the same website, except it's #341509. You must sign up as a member to access these sites. 

    Classified Ads for the CFS/FMS/MCS community are available at Immune Web Classifieds. Check the site out if you have something to sell, trade or buy, or if you have or need housing or a job, or if you want to meet someone new.
     

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