Mary Schweitzer disturbing direction of cdc research

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Apr 17, 2009.

  1. simpsons

    simpsons Member

    Warning this may make your blood boil!!!

    Hi, saw this on co cure today and thought it would be good to highlight this email from mary schweitzer. Mary seems to be highlighting how the phychiactric body are leaving out the most severely affected me/cfs sufferers from their research and including people with depression in their research.

    this is very serious and obama has as mary states put much money into research which they are trying to get their paws on. Also with their connections to the insurance industry they are providing more fuel to the insurance companies not to pay out for me/cfs deeming it as Psychiatric. This extract shown below sums it all up really.

    "CDC's plans all involve promoting the disease as
    something psychological, caused by "stress."




    From: Mary Schweitzer <marymsch@COMCAST.NET>



    I found this language in the call for the CDC
    "stakeholders' meeting on CFS" to be most
    disturbing. (See below)

    They refer to "medically unexplained chronically
    fatiguing illnesses, in particular CFS."

    This language is important, because disability
    insurance companies use the phrase "medically
    unexplained syndromes" (or MUS) to deny
    claimants.

    CDC's plans all involve promoting the disease as
    something psychological, caused by "stress."

    They have a new set of questionnaires that lop off
    the top 30 percent in severity (the most severely ill)
    and then add in women with depression.

    They blatantly violate the CDC's own Fukuda study of
    1994, that stated the most important area for new
    research would be to identify subgroups.

    Instead, they keep broaden the definition more and
    more, to blur the lines and exclude the very ill.

    And now they have boldly adopted the language of
    insurance companies as well.

    The following language concerns me the most:

    "The objective of the five-year strategic plan is to
    conduct public health research leading to the control
    and prevention of medically unexplained chronically
    fatiguing illnesses, in particular CFS."


    Sound familiar?


    Where was the voice of the patient
    as stakeholder, when this was created?


    Obama pushed through a lot of funding for medical
    research in the economic revitalization bill, and I'm
    certain they want to capture their fair share, but
    their research just gets scarier and scarier. I see
    Peter White's fingerprints in this.


    Mary Schweitzer





    ```````````


    From: TheCFIDSAssociationofAmerica <cfidslink@CFIDS.ORG>



    The CFIDS Association of America just received this
    advance notice of the following public meeting. The
    Federal Register announcement, copied below, is
    expected to be published on April 15. The
    Association encourages all those who are interested
    in the CDC's research to express their views, in
    person or in writing. Please send your statements
    directly to CDC at CFSResearchPlan@cdc.gov.


    ``````````````````````````


    CDC Stakeholders' Meeting
    on CFS Strategic Research Plan


    On April 27, 2009, 1:00-5:00 PM, CDC will host an
    open meeting concerning chronic fatigue syndrome
    (CFS).

    The meeting will take place at CDC's Global
    Communications Center, Building 19, Auditorium B2,
    1600 Clifton Road NE, Atlanta, Georgia 30333, and is
    open to the public, limited only by the space
    available.


    The purpose of the public meeting is to solicit input
    from interested parties on issues that CDC will
    consider as it develops a five-year strategic plan for
    its CFS research program.

    Input is sought only on the CFS strategic research
    plan, not on CDC's overall CFS program. As CDC is
    one of many institutions conducting research on
    chronic fatigue syndrome, the strategic plan will only
    address research that is within CDC's purview.


    Topics Include: The objective of the five-year
    strategic plan is to conduct public health research
    leading to the control and prevention of medically
    unexplained chronically fatiguing illnesses, in
    particular CFS.

    The agenda will focus on the goals and objectives of
    CDC's CFS research program in five major categories:

    - Studies of Defined Populations
    - Provider-based Patient Registries
    - In-hospital Clinical Studies
    - Laboratory Studies
    - Provider and Public Educational Intervention
    Research


    The agenda does not include development of
    consensus positions, guidelines, or discussions or
    endorsements of specific commercial products.
    Agenda items are subject to change as priorities
    dictate.


    Members of the public wishing to make an oral
    statement during the meeting should limit their
    remarks to five minutes and should address the
    research agenda.

    Written comments and suggestions from the public
    on the research agenda are encouraged and may be
    submitted to the email address listed below by April
    22, 2009. While CDC will carefully consider the
    individual comments and opinions it receives, it will
    retain discretion in its decision-making process. A
    draft strategic plan will also be presented at the
    Chronic Fatigue Syndrome Advisory Committee
    meeting held May 27-28, 2009
    (http://www.hhs.gov/advcomcfs/).





    Background:


    CDC recently solicited and considered
    recommendations from an external review panel that
    evaluated the research and professional education
    components of the CFS research program. The
    panel's report summarizing the findings of the peer
    review has been published on the CDC CFS website
    at
    www.cdc.gov/cfs/pdf/cdc_cfs_research_program-external_review.pdf.


    In brief, the panel noted that:

    (1) the CDC team currently leads the world in both
    the breadth and depth of their research into CFS;

    (2) the efforts of CDC have highlighted the public
    health importance of CFS;

    (3) all current research projects address important
    issues; and

    (4) CDC is uniquely positioned to conduct a broadly
    based research program derived from the population,
    a large-scale educational outreach program
    (particularly to healthcare professionals) and to
    provide expert web-based resources for patients,
    their families and non-healthcare professionals.

    The report included several valuable
    recommendations which CDC has begun to
    implement, starting with the development of a
    strategic plan to drive the program's research,
    prevention, and control activities for the next five
    years. This meeting will provide input to that
    strategic plan.


    Persons anticipating attending the meeting are
    requested to send written notification by April 22,
    2009, including name, organization (if applicable),
    address, phone, fax, and email addresses to the
    contact below. Additional information on visiting
    CDC is available at
    http://www.cdc.gov/about/resources/visitGuide.htm.


    For Further Information Contact:
    CFSResearchPlan@cdc.gov

    Send an Email for free membership
    ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
    >>> Help ME Circle <<<<
    >>>> 9 April 2009 <<<<
    Editorship : j.van.roijen@chello.nl

    ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
  2. outofstep

    outofstep Member

    This guy got a professorship at Emory by saying that CFS is a form of post-traumatic stress disorder, and who knows what other incentives he's being offered by drug & insurance co.s etc. to reclassify CFS as a psychological illness by making the definition so vague that it no longer describes our disease.

    He's trying to hijack the name CFS and the attached funding to further his own agenda. Many of us would be excluded from his definition because of ordinary CFS symptoms like viruses, thyroid dysfunction, etc.

    Please email the CDC and tell them that you know what they're up to and you don't approve. We need all of the funding that we can get for CFS-and what they're researching at the CDC is not CFS! If they're not going to research CFS then the funding should go to those who will.

    The CFIDS Association makes it easy for you-if you go to their website (cfids.org), click on "patient advocacy", then "grass roots action center" and then click on the first thing under "action alert" ("Express your views about CDC's CFS research"). They give you a template so it's takes very little effort. Please don't let the CDC get away with this.
  3. simpsons

    simpsons Member

    the angelic prof simon wessly and peter white got away with 12million pounds in the uk, whilst biomedical research got nothing

    ot only that but their bogus research has lead to the only treatments being offered being cbt and get.

    thanks outofstep
    god bless all
  4. outofstep

    outofstep Member

    If there is any justice in this world then there is a toasty place in you know where awaiting these monsters. They are pure evil if they can live with themselves knowing that they are making their money by denying medical treatment to (and basically torturing) legitimately ill people.

    The UK situation is just heartbreaking. Hopefully the new genetic and viral research will break the quacks' stranglehold on CFS soon and will turn things around. Ultimately they will lose-but it's tragic that they are hurting so many people in the interim.
  5. skeptik2

    skeptik2 Member

    ...and why complain to them? Call your Representatives immediately and express your outrage that the CDC may get money from the stimulus plan that would put a serious and debilitating illness on a "psychiatric track"!

    Isn't it nice that the "Public Meeting" announcement will take place only 12 days before the actual meeting? (So no patient has time to plan going?)

    The CDC does not want to hear from us regarding their watering down of the criteria; their obfuscation of the seriousness of the illness; their undermining the rights of the patients to informed healthcare and disability rights, etc., among other things.

    They only want to fulfill the criteria demanded by the funds pretend to get input from all interested parties.

    Only your Representatives in Congress can do anything about this! Do not waste your time going to .orgs or any other place.

    skeptik2
  6. spacee

    spacee Member

    In 1992 I had an appt with Dr. Steven Strauss at the NIH. He was in charge of studying CFS. He only asked me psychological questions and "ruled out" CFS cause I had had some panic attacks a few years prior.

    Our hope is our own research and getting the attention of Big Pharma to make some money off of us through testing and treatments.

    I am so disgusted with the CDC and NIH that I could chew nails and spit rust as my mother used to say.

    Spacee
  7. simpsons

    simpsons Member

    well all it takes for bad people to prosper is for good people to do nothing....

    so here follows an email from tate mitchel on just how to get there even if you cannot make it in person. Better to have tried and failed than never to have tried at all.

    as many people as possible should make their voices heard. let them know what IT is that you the patient wants. that this is not medically unexplained infact there is much explaination and some brilliant research already being done that you the patients would like to receive more funding.

    just my favourites are whittlemore peterson dr chia who both have children with the illness and the gene research being done by us and uk. you all no doubt have your favourite areas


    here is tate email

    A conference line will be available for persons wishing to //participate via
    telephone. Participants will be able to listen to the full proceedings, and
    time will be devoted to receiving comments from telephone callers. Persons
    wishing to comment via telephone should send written notification by April
    22, 2009, including name, organization (if applicable), address, phone, fax,
    and email addresses to the contact below. Additional details and call-in
    information will be available on this website prior to the meeting."

    -For Further Information Contact:
    CFSResearchPlan@cdc.gov

    From CDC website(copied and pasted in full below)
    http://www.cdc.gov/cfs/meetings/2009_04.htm


    *****************************************************************************************
    CDC seeks input to shape a CFS strategic research plan

    Acting on a recommendation from an external peer review of CDC’s CFS
    research program conducted in November 2008 and in preparation for
    presenting a draft 5-year strategic research plan to the CFS Advisory
    Committee in May 2009, CDC is seeking input from interested parties on
    issues that CDC will consider as it develops this research plan.

    The objective of the five-year strategic plan is to conduct public health
    research leading to the control and prevention of medically u'nexplained
    chronically fatiguing illnesses, in particular CFS. CDC is seeking input on
    the goals and objectives of its CFS research program in five major
    categories:

    1. Studies of Defined Populations
    2. Provider-based Patient Registries
    3. In-hospital Clinical Studies
    4. Laboratory Studies
    5. Provider and Public Educational Intervention Research

    Public input can be submitted in several ways:

    - Written comments can be sent via e-mail to:
    CFSResearchPlan@cdc.gov.
    - Written comments can also be sent via mail to:

    CFS Research Plan
    MS A-30
    1600 Clifton Road, NE
    Atlanta, GA 30333

    - Oral comments can be made in person or via telephone at a public
    meeting at CDC on April 27, 2009 (additional details below).

    For consideration in developing the May 2009 draft of the plan, comments
    must be received at CDC by May 1, 2009.
    Stakeholders’ Meeting—April 27, 2009, 1:00-5:00 pm EDT

    The meeting will take place at CDC’s Global Communications Center, Building
    19, Auditorium B2, 1600 Clifton Road NE, Atlanta, Georgia 30333, and is open
    to the public, limited only by the space available.

    The purpose of the public meeting is to solicit input from interested
    parties on issues that CDC will consider as it develops a five-year
    strategic plan for its CFS research program. Input is sought only on the CFS
    strategic research plan, not on CDC’s overall CFS program. As CDC is one of
    many institutions conducting research on chronic fatigue syndrome, the
    strategic plan will only address research that is within CDC’s purview. An
    agenda will be available on this website prior to the meeting.

    Persons anticipating attending the meeting are requested to send written
    notification by April 22, 2009, including name, organization (if
    applicable), address, phone, fax, and email addresses to the contact below.
    Additional information on visiting
    CDC<http://www.cdc.gov/about/resources/visitGuide.htm>

    A conference line will be available for persons wishing to participate via
    telephone. Participants will be able to listen to the full proceedings, and
    time will be devoted to receiving comments from telephone callers. Persons
    wishing to comment via telephone should send written notification by April
    22, 2009, including name, organization (if applicable), address, phone, fax,
    and email addresses to the contact below. Additional details and call-in
    information will be available on this website prior to the meeting.

    For Further Information Contact://///


    CFSResearchPlan@cdc.gov


    Page last modified on April 16, 2009
    thats it guys

    GOD bless you all
    never give up

  8. outofstep

    outofstep Member

    There's no reason for us to make it easy for the CDC to malign and misrepresent us and steal our funding. And the fact that this is a chronic problem with this agency is even more reason to take action-our taxes fund these jokers and they need to answer to us.

    The WP Institute puts the CDC to shame. They (the CDC) need to model themselves on the non-profits who have made more progress in the past few years (with little funding) than the CDC has made in over 20 years.

    Thanks for the conference line info-I'm sure that many people will take advantage of it. Please keep passing along any new info you get and keep fighting the good fight!