Public CFS CDC meeting -- Immediate Action Requested -- Please do this! :)

Discussion in 'Fibromyalgia Main Forum' started by azsunflower, Apr 15, 2009.

  1. azsunflower

    azsunflower New Member

    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

    Please send your statements directly to CDC at CFSResearchPlan@... or use
    the Association's Grassroots Action Center to send a message by visiting

    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

    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

    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

    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

    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 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

    For Further Information Contact: CFSResearchPlan@...

    If CDC does not hear from the patient community about its research agenda, it
    will consider the silence to be support for its current underperforming program.
    Read this report about the most recent public meeting and follow links to
    testimony provided by Dr. Suzanne Vernon and Kim McCleary on behalf of the CFIDS

    [This Message was Edited on 04/15/2009]
    [This Message was Edited on 04/22/2009]
  2. SpecialK82

    SpecialK82 New Member

    Thanks so much for posting - I am going to write in.

    Let's see if we can't bombard them with messages and let them know how we feel just by sheer volume!!

  3. QuayMan

    QuayMan Member

    A petition has been set up today by a patient with CFS to complain about the CDC using the empirical/Reeves definition for CFS research. This might help complaints about the definition at this meeting or other meetings such as CFSAC meetings. For anybody interested, the address is

    PS. Hope this is ok to post - had a quick look through the rules and nothing stood out
  4. outofstep

    outofstep Member

    and I'm happy to tell them. Thanks azsunflower.

    and thanks Quayman for the petition link-that's great especially for those who are not up to writing anything.
  5. QuayMan

    QuayMan Member

    Thanks outofstep. And just to be clear, there's no reason why people can't do both i.e. sign the petition and write in.
  6. outofstep

    outofstep Member

    Yes, I did both-the letter writing was particularly cathartic :)

    Like Kristina said we need to flood them!

    As azsunflower said you can go to and click on "patient advocacy" and then "grassroots action center" and then the first thing under "action alert" and they give you a template to write in and then you just click to send.
  7. skeptik2

    skeptik2 Member

    Watch out, everybody!

    1st in the world in research? Since when?

    It explicitly states that don't want to hear about their research to date; only what they are planning to do, and that includes only "fatigueing illnesses"...that is NOT M.E.!

    They have diluted the original 1988 and the second 1994 definitions so much, it certainly does not define my illness anymore...and that's their goal.

  8. outofstep

    outofstep Member

    But their future research will be based on their current definition and they will continue to receive funding for our disease while researching something entirely different-unless we bring attention to it and express some outrage.

  9. spacee

    spacee Member

    And they want to heap guilt upon us "if we don't respond".

    When the current research comes forth, they will look like the fools they are.

    Pretty cathartic for me...thanks.

  10. stschn

    stschn New Member

    Now is the time to be proactive please lets all do it.
  11. quanked

    quanked Member

    What is this definition that is evoking the negative response to the cdc meeting? I tried finding the definition but I do not possess the mental acutity required to exptrapolate the definition from the study I located that was suppose to contain the definition.

    I would really like to understand why folk are signing a petition about the a definition. I have cfids and fibro among other medical stuff. thanks.
  12. quanked

    quanked Member

  13. xchocoholic

    xchocoholic New Member

    Can someone please tell me is this what the CDC's 5 year plan is ? Is the plan just to study us AGAIN ? Don't we have enough data on CFS/FM by the CFS researcher's ? I've been sick for almost 20 years now and I know the researchers have been collecting data on us since before 1990.

    I just loved the Georgia study where they called 17,000 households to see if someone had CFS ... Wouldn't it have been simplier and more effective just to contact the physicians in that state ? But why bother anyways ? Do we really need to know how many people in GA have CFS ?

    And has anyone seen anything about the CDC recommending using the comprehensive stool test, Lyme tests, adrenal function tests, etc to help us ? Did I miss it ? This seems like a no brainer to me.


  14. mbofov

    mbofov Active Member

    I had received an e-mail about this from the CFIDS association, but put it on the back burner. Anyways, I sent the CDC an e-mail today including info re the research being done at the Pacific Fatigue Lab at the University of the Pacific, Rich Van K's paper, SArah Myhill's paper re mitochondrial dysfunction and a paper by Dr. David Bell, showing similar results to the Pacific Fatigue Lab.

    Oh my -

    We'll see -

  15. SpecialK82

    SpecialK82 New Member

    thanks frenchtulip for the link - very informative!

    Xchocoholic - I agree with you 1000% about the GA study - what in the he## was that supposed to accomplish? To find out if more people have CFS than are reported? Who cares -do we go poll people and ask them if they have the symptoms of MS or cancer? Why don't we try to fix the people that have already raised their hands.

    I admittedly have only read the info on the CAA site, but I don't see much to their 5 year plan that sounds very aggressive. In my letter to them, I included the need for subtyping and also how we should set some real goals for 5 years - like good, effective treatments.

    So far, I feel like all this studying is just going around in circles - we need to accomplish something.

    Unfortunately, we can't afford to stop pushing the CDC, they have the deepest pockets - it's our best chance at getting well!

  16. xchocoholic

    xchocoholic New Member


    thanks ... I think you hit the nail on the head with your recommendations. I eliminated the nuero problems and much of the brain fog I had by working on my leaky gut but the fatigue defined by these researchers is exactly what I'm left dealing with now.

    I'll be sending an email with this info too. I hope that instead of them wasting money researching something that has already been researched, they'll look for why this is happening.

    BTW. The NIH did a study on CFS and leaky gut which showed most of those in the study improved. Anyone know why the CDC isn't up on this ? Does the CDC stay up on anything the NIH does ?


  17. mezombie

    mezombie Member

    Bumping this for others.

    azsunflower -- maybe you could edit your first post to let people know of the extended deadline for comments? Perhaps you could post the petition information there as well?

    I'm afraid many people might not read past the first post.

    Thanks for bringing this to the attention of fellow board members.

    [This Message was Edited on 04/23/2009]
  18. simpsons

    simpsons Member

    you make a great point about the georgia 2007 prevelance study. in fact i got an email from tom kindlon via co cure today. its very interesting to say the least. the study get heavily knocked, in particular the i nclusion criterea. isn,t peter white one of wessley,s arch angels?

    do you know i,m sure that there is a human right not to be treated phychologically for a physical illness. if the nice guidlines case in england had included the human rights act they would have had to take that into account.

    we must have a human right to medical treatment for an illnes that we can show through tests exists.

  19. Forebearance

    Forebearance Member

    Well, I did it!

    I was scared and unsure of what to say. But then I realized that our power lies in numbers, not in the exact words we use. I decided it was more important to write SOMETHING and to show that one more person cares about what they do with all our tax money than to say the perfect thing.

    I hope everyone on this board will write to them.
  20. xchocoholic

    xchocoholic New Member

    I did it too. I was worried about what to say too but like you said it's better to write something than nothing .. Marcia