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Deadline april 26 to effectively save the cfsac!

Discussion in 'Action Alerts and Advocacy' started by Sing, Apr 18, 2010.

  1. Sing

    Sing Senior Member

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    Please read Cort's blog, Taking Back the CFSAC. This week is critical for public testimony to help keep them in any real existence. I just sent my letter to cfsac@hhs.gov and received back the following automated letter:


    The next CFSAC meeting will take place on Monday, May 10, 2010. More information is located at: http://www.hhs.gov/advcomcfs/.

    The CFSAC Support Team is currently processing assignment requests for oral comment at the meeting. Assignments are being prioritized for oral comment on the CFSAC charter. More information on the charter is available at: http://www.hhs.gov/advcomcfs/charter/index.html.

    Members of the public wanting to submit written testimony to CFSAC members at the meeting, should, at a minimum, submit one copy of their material to the Executive Secretary at cfsac@hhs.gov, prior to close of business on Monday, April 26, 2010. Submissions should be no more than five (5) pages.
  2. jspotila

    jspotila Senior Member

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    Bumping this up to share this link to the federal database on federal advisory committees: http://fido.gov/facadatabase/committeeMenu.asp?cno=5136&FY=2010

    The Federal Advisory Committee Act requires that each committee (there are 1,000 across all agencies) submit updated info for inclusion in the database. The link above is to the entry for the CFSAC and includes a little more info on committee budget, etc.
  3. Jerry S

    Jerry S Senior Member

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    I just finished emailing my written testimony to the CFSAC. Thanks, Sing, for this thread! :victory: :sofa:
  4. creekfeet

    creekfeet Sockfeet

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    I've been sunk deep in socks and am now skirting the edge of a crash, but I really want to understand and act on this issue. I'll read Cort's blog and write to the CFSAC soon as I can put a clear thought or two together.
  5. sarahg

    sarahg Admin Assistant

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    This is vitally important. Put aside whatever you planned to do today and write these good people a letter. You do not need to be a US citizen to have a stake in the process. You have until 5 pm (EST, I assume) April 26, Monday, AKA tomorrow- to submit it. Tell them that we are not out of the woods yet, there are not enough doctors to treat us, we must have equitable funding with comparable disease for research, the CDC and NIH still does not give a crap if we live or rot. Without this committee nothing is going to change, no one will be accountable. It can be argued that even with this committee that will be the case. (We sure could use a body whose recommendations are binding, a ME/CFS caucus in both houses of congress, and a congressional investigation into the CDC's research program, etc. etc.) But without this we are toast. If you are not up to cohesive thought making (and I fear I may not be before the deadline) copy and paste is your friend, just give a brief explanation that you are too sick to put it into your own words, but the following sums up how you feel.

    We are in the process of setting up a repository thread for letters, including CFSAC testimony. Due to my recent health setbacks and distractions it is not up and running yet. If anyone would like to help me make that happen, please send me a message. (and to all who have sent me messages about the lyme thing, thank you! I swear I really will answer them soon!)

    This thread
    http://www.forums.aboutmecfs.org/sh...stant-(s)-wanted-easy-advocacy-letter-archive

    starts with a description of what the letter thread will be like, and following that are the links to all the threads containing letters that Koan and I could find. it does not link directly to letters. But if you need a way to find other letters for inspiration, it may be a little bit of help. Also Sing's post above contains a link to Cort's article about this particular meeting and why writing a letter THIS TIME is so very IMPORTANT! Cort's points about the very existence of CFSAC are very good.

    I am shocked that there has not been more uproar about this. Especially after how sucessful the last meeting seemed. We need to avoid complacency. I fear that others may be like me and at the very end of their rope health-wise (I am kicking myself for not having done this weeks earlier when I had a lot more brain to give) Also there is a lot else going on. But this IS IT. These people are on our sides, they want to continue, but we need to show their higher ups that we are paying attention and we are not going to go away.

    Please also if you have submitted testimony, post it here if you would not mind.
  6. Dreambirdie

    Dreambirdie work in progress

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    Yes, if someone could PLEASE post their testimony and give me a clue how to put this letter together.
    I will gladly do it if I am told what to say and how to say it, as I am much too fried today to actually use my brain.

    Actually, you could even PM, if you don't mind. It's an important issue and numbers of writers will matter.
    thanks
  7. jspotila

    jspotila Senior Member

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    Testimony submitted 4/25/10

    AGREE AGREE AGREE! Sarahg is absolutely right. Here is my testimony, submitted today:

  8. Dreambirdie

    Dreambirdie work in progress

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    Thanks Jenny... that was fast! :eek:

    ETA: I just sent my letter, which is basically an extract of Jenny's, along with a few thoughts added on.

    Goodnight... and good luck.
  9. Jerry S

    Jerry S Senior Member

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  10. Dreambirdie

    Dreambirdie work in progress

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    Thanks Jerry.
  11. Dolphin

    Dolphin Senior Member

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    Thanks Jerry! :Retro smile:
    Best of luck to everyone with their testimony this time around.
  12. jspotila

    jspotila Senior Member

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    For Comparison

    I am really regretting that I could not do more research on federal advisory committees before tomorrow's deadline, but maybe someone will be able to use this info for their in-person testimony.

    I found the webpage for the federal Interagency Autism Coordinating Committee: http://iacc.hhs.gov/about/charter.shtml

    Their charter:
    Um, ok, holy crap. Compare that to the toothless language of the CFSAC charter. This committee comes up with a strategic plan for research, submits it to Congress and NIH, including budgetary recommendations. You know, what the CFSAC has been saying for years that it cannot do. And the committee roster? Five people from NIH alone.

    I'm out of steam here, and haven't read the rest of the site carefully. But don't let anyone tell you that a federal advisory committee should be satisfied with only 18% of its recommendations being implemented.

    If anyone is commenting in person at the CFSAC meeting, or anyone has connections to members of the CFSAC, please consider looking into this comparison. I'm sure it's not apples to apples, but it does show that a federal advisory committee can actually do real work and be heard.

    ETA: the budget for the autism committee is over $1 million, including federal staff time. CFSAC budget is about $170,000.
  13. The Phantom

    The Phantom Member

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    Preface to CFSAC testimony

    Please forgive the last minute nature of this post. Frankly, I don't know how some of you manage to keep on top of all these threads. I've had to take a long break from the website to deal with other matters. Do you all have supportive families that wash the dishes, pay the bills, bring in groceries, cook, take baths for you...? Kudos to Koan and others who are combing the site for ideas for letters. Truly. Meanwhile, I think I hear my current pile of dishes climbing the stairs, moaning "wash me, please, wash me."

    Anyway, I'm going to post my draft of my written testimony in a separate post, so it'll be easy to cut and paste if anyone should want to slice and dice. It's long. I just wrote it, so it may get edited a bit before I send it in.

    I have a few comments to make about it before I post it. First, as you'll see, I owe a huge debt of gratitude to Jenny. Thanks so much for your work, Jenny. It made it much easier to get started, and to help make sure I wasn't forgetting something important, which I probably did anyway. The Federal Advisory Comittees Database site was very enlightening, and I didn't know it even existed. Also, I think adding those 2 additional ex officios is a great idea. There are probably other things I should thank you for, but I'm too tired to remember what either of us wrote.

    And I agree with Jerry that anything Tom Kindlon writes is always helpful. We all owe a lot to Tom. If you haven't signed his petition against the Reeves definition please SIGN IT! Here's the link:
    http://www.ipetitions.com/petition/empirical_defn_and_cfs_research/

    And, because I don't post very often so I don't say thanks often enough, thanks to all who post here--I learn so much from this website when I have the energy to read it. And, of course, thanks to Cort for all his work.

    Mostly I agree with what Jenny said, but there are a few differences which is why I'm bothering to post my testimony--so people can pick and choose what they like from what will hopefully be several sources. These are what are, I think, the two important differences:

    I think it's very important that the Committee acknowledges the importance of an adequate definition and validates the search for an etiology in its Charter. That's explained in the testimony.

    I don't feel like endorsing Dr. Jones as the permanent Federal Officer for the Committee. Although I know she's a popular figure for some, my opinion is that arranging the webcasts is part of her job. It should have been done as soon as the technology was available, yes, but I personally don't think doing that and arranging for a bigger room qualifies her for sainthood. Thanks, yes, sainthood, no. If you look at the Federal Advisories Committee database you may notice that that's all that's been done. Here's the link: http://fido.gov/facadatabase/acrform.asp?type=RO
    I hate to say it, but I think it's sort of like an abused child saying "Thanks for the bread and water, Mommy. Gee, yesterday I just got water." Sorry. I just had to let that out.
    I don't think we know who shortened the meeting to one day, shortened the public testimony to three minutes, set the agenda for public comment as the Charter (not XMRV, not the definition, not the research funding........). Could it be Dr. Koh, who is listed as the "Committee Decision Maker"? Did Dr. Jones fight against these changes? Or could it be Dr. Jones herself who did it? We just don't know. I'm not saying she didn't fight. I'm not saying she did it. I'm saying we don't know. I don't want to endorse someone for a permanent, important position when I don't know what she's doing. Maybe somebody else knows something I don't know. Maybe I'm overly suspicious.

    By the way, based again on the Federal Advisory Committees Database website, it appears there's no reason to panic that the Charter won't be renewed. However, it does appear that, at least in terms of time, they're cutting back on the bread allotment, so to speak.

    And, I just read Jenny's post about the Autism advisory committee (thanks again, Jenny). Aaarrrggghh. I'm just going to post what I've already written, but I may do some revising tomorrow. Got to go to sleep. One last comment--if you can, please send something coherent to the committee by tomorrow at 5. Send it to cfsac@hhs.gov
  14. The Phantom

    The Phantom Member

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    CFSAC written testimony May 2010

    I strongly support the renewal of the Chronic Fatigue Syndrome Advisory Committee Charter. I suggest the following additions and/or revisions to the Charter.

    Functions

    An additional advisory function should be added to the Functions section of the Charter: to evaluate the likely etiology(s) and develop an accurate and effective definition of Myalgic/Encephalitis/Chronic Fatigue Syndrome.

    Comments:
    Until the Committee addresses the important issue of the definition, it will be difficult to adequately advise the Secretary about the other three topic groups that are currently in its Charter. Once an adequate definition has been established, this issue can be removed from the Charter. I comment further about this at the end of my testimony.

    If a single etiologic agent is found for ME/CFS, this issue can also be removed from the Charter. However, until that occurs it is extremely important for the Committee to continue to encourage the search for etiology(s) and to evaluate the accumulated evidence and the impact the current evidence has on prevention, diagnosis, treatment, accommodation and services.

    By ignoring the important issue of etiology in its Charter, the Committee is tacitly implying that there is no etiology for this illness, which, in turn, endorses the all in your head hypothesis. This was never an acceptable hypothesis, but, in 2010, we have an abundance of evidence of physiologic abnormalities in ME/CFS, some of which point to one or more potential etiologies. It is time to acknowledge this in the Committees charter.

    Establishing a consistent definition and/or the etiology(s) of the illness will lead to a better name.


    Structure

    Two new ex officio members should be added to the Committee: a representative from the Agency for Healthcare Research and Quality, and a representative of the Surgeon General.

    Individual ex officio members should have a term not longer than ten years.

    Comments:
    The AHRQ representative will help to identify best practices in the treatment of ME/CFS and to disseminate that information to health care providers and patients. The Surgeon Generals representative can help to facilitate the production of a Surgeon Generals letter about ME/CFS, and to promote awareness of the illness by health care professionals, federal agencies and the general public.

    Although continuity of representation of federal agencies is valuable, ex officio members can also become mired in preconceptions and controversies from the past. It is valuable to introduce new perspectives, both for the Committee and for the federal agencies.


    Meetings

    Preface:
    There is a need for adequate time for the committee to address its responsibilities. It is of grave concern that the current meeting (May 10, 2010) is one day instead of the usual two, and that the time for public comment has been limited to a point where it is practically impossible for anybody to say anything.


    In the past the Committee has met four times a year. This schedule should be resumed. Each of the three topic areas discussed in the current charter (knowledge and research about epidemiology and risk factors, current and proposed methods for diagnosis and treatment, and development and implementation of information programs) should be the topic of one of three of the quarterly meetings and the fourth meeting should address etiologies and definitions, an issue that is not currently being addressed in the charter, as discussed above. If and when etiology is established, it will be possible to drop back to three meetings per year. At the end of each 2 day meeting 2 hours should be devoted to integration, which should consist of two parts: first, a current action plan (of items Committee members or ex officio members need to research or act on) and current recommendations (to the Secretary), and, second, an assessment of the results of past action plans and recommendations. This assessment should also be forwarded to the Secretary.

    All meetings should be videocast via the internet in real time and should be archived and available on the Committees website.

    Comments:
    According to the Federal Advisory Committees Database, it is anticipated that the CFSAC will continue to serve as a conduit for information from the Department to the patient population and vice versa. It is impossible for patients or non-Committee care providers to communicate usefully with the Committee in three minute sound bites. The amount of time for public testimony should be increased, not decreased. Patients, researchers and caregivers have a great deal of useful information about this illness to communicate.

    It is noted in the Federal Advisory Committees Database that only 18% of the Committees recommendations have been acted upon. This essentially means that 82% of the Committees time is being wasted. This is expensive. During the assessment section of the meeting the following questions should be addressed by the Committee members with the active participation of the ex officio members: why are the recommendations not being implemented? Are they unreasonable or are Federal agencies unresponsive? This assessment should also be forwarded to the Secretary.

    Videocasts are a necessary accommodation for the disabilities and financial realities of people with ME/CFS.


    Annual Cost Estimate

    If the number of meetings is increased the cost of Committee functions will also increase and will have to be calculated.

    Comments:
    If the number of people suffering with ME/CFS in the United States is conservatively estimated at 800,000, the current cost of the Committee to U.S. taxpayers is currently approximately 20 cents per patient. Given the economic impact of the disease, a doubling of this cost does not seem unreasonable.


    Report

    A report of the status of all recommendations made by the Committee should be produced at the end of each meeting and posted on the website. The report should categorize the recommendations according to which federal agency is responsible for implementation, where applicable.

    Comments:
    This would enable all interested parties, including Committee members, ex officio members, the Secretary, members of Congress, as well as the patient, research and provider communities, to keep track of progress toward reaching the goals of preventing, rapidly diagnosing and treating &/or palliating this difficult illness.




    Further comments related to the function of the committee at this time:

    I am among the many people who appreciate the effort the CDC appears to have made to change the leadership of its CFS division. Hopefully, this will be the first of many steps forward. However, it will be impossible to move forward until there is a reasonable and consistent definition of ME/CFS that is used by all clinicians and researchers. There is nothing more important to the advancement of the science of ME/CFS than an accurate and consistent definition. Without a definition, it is impossible to advance research, evaluate potential etiologies, diagnose and treat patients, and fairly deliver services.

    Thankfully, we have an accurate and consistent definition of ME/CFS: the Canadian Consensus Definition. I ask this committee to endorse this definition and to insist that it be used to identify patients in all studies funded by our taxpayer dollars. In my testimony in October, 2009, I pointed out that the Fukuda definition is flawed but has been used in a significant body of research. Dr. Leonard Jason has recently produced a video, sponsored by the CFIDS Association of America, that discusses the flaws in Fukuda and the consequences of those flaws. I urge this committee to watch this video or to ask Dr. Jason to present this information directly to them at its next (hopefully quarterly) meeting. It is especially important for the ex officio members of this committee, who represent our important health-related federal agencies, to understand the issues he raises. Failure to understand the importance of an accurate definition of ME/CFS has the potential to cause tremendous harm, not only to people with ME/CFS now, but to the general population who may be at risk of acquiring it. We do not know if this is an infectious disease or not. If we do not correctly address the issue of the definition we may never know the answer to this question. We are in danger of wasting precious resources on research that will tell us little, if anything. Please endorse the Canadian Consensus Definition.

    In addition, we need increased funding for ME/CFS research, for a collaborative trials network, and for centers of excellence where patients can be studied and treated and professionals can be trained.
  15. Dreambirdie

    Dreambirdie work in progress

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    Thanks Phantom.

    Please, everyone who hasn't done so, get your letters done today!
  16. jspotila

    jspotila Senior Member

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    I'm sorry, now I am realizing I phrased that recommendation in a confusing way. Here is what I really meant: the current charter does not designate any particular position at DHHS as the designated federal officer. So it is possible for a low-level career person to be made the DFO, and we've seen the damage done to the committee in the past by DFOs who don't take it seriously. Dr. Jones is great, but I think we've benefitted more from the higher profile position that she holds at DHHS. So my recommendation was that her position be named as the DFO - not her specifically. I was moving chunks of text around, and I didn't realize that was no longer clear. Dammit.
  17. The Phantom

    The Phantom Member

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    I wish more people would read through this thread

    I totally sympathize. These little reply boxes are hard to deal with. I agree we need a strong person as the DFO. Thanks again for all the important information you've given us.

    By the way, I'm wondering if it's possible to get Gerwyn's long post on the DSM5 moved to a more appropriate thread. It's a good post, but it's long and it's in the wrong place. I'm afraid it may discourage people from reading through and getting to other posts. Does anyone know how to get in touch with a moderator? Are they allowed to move posts? I'll see what I can do, but if anyone already knows how to do it that would save some time. The clock is ticking. 5 pm.
  18. Dreambirdie

    Dreambirdie work in progress

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    Hi Phantom--

    I dropped Gerwyn a PM and asked him to delete his DSM-5 post.
    There is a copy already on the DSM-5 thread.
  19. sarahg

    sarahg Admin Assistant

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    rough draft...proofread me! I'm still working on it, but I'll get done in time. point out flaws, spelling errors, general ornery mood, etc. I will try to fix it. My formatting did not really stay the same, but whatever.


    My health has regrettably declined to the point I am unable to submit to you the type of well thought out testimony I have in the past. Instead, I must provide you with a brief introduction and a series of points. I would like to remind you that the written, telephone, and in person testimony you receive is representative of the needs and demands of thousands of patients who are too ill to manage even this.

    I am astonished that at such a critical juncture in the history of this disease the time allotted for this committee and for public testimony has decreased. I am astonished that the very existence of this committee is uncertain. The problems that led to the creation of this committee are far from resolved. We, out here- as patients- cannot see much in the way of progress.
    • We still live with the preposterous name “chronic fatigue syndrome” as a label for our complex disease. We cannot tell people what disease it is that we have and expect them to understand what it means without a lengthy explanation, if at all.
    • It is still nearly impossible for us to find knowledgeable doctors and effective treatments that are covered by insurance.
    • Our disability claims are still being unjustly denied.
    • Medical schools are still not adequately training doctors to treat us, or even to understand what this disease actually is. Medical schools do not even have staff capable of accomplishing this.
    • We have no government- sponsored centers of excellence to look to when we need treatment.
    • William Reeves may be gone from the CDC, but the flawed research definition and the faulty research done with that flawed cohort remain.
    • Our doctors are still receiving this inaccurate research with the seal of approval of the CDC, and as a result, we are still suffering the consequences of the CDC’s past research.
    • A definition of this disease that insists upon post exertional malaise as a hallmark symptom has yet to be adopted by the CDC.
    • A permanent director of the CDC CFS program has yet to be appointed, and we have no word on what will replace the irresponsibly crafted five year research plan, or the direction that the CDC program will take. Will the Emory University psychiatry department still be taking part in research into this physical condition?
    • We remain shocked and dismayed that the NIH budget is still directing exponentially more resources to health issues such as erectile dysfunction than it is to this chronic disabling disease, especially when we see what the funding levels of diseases with similar disability levels and prevalence rates are.
    • We deserve better than what we are getting, and we have deserved better for an inexcusably long time.

    So, the time to act is now. This committee is more essential now than it ever has been, we are not out of the woods yet and we will not be for some time- the charter absolutely must be renewed. Due to our disability and marginalization from society and the medical system, we are unable to consistently advocate for ourselves. Due to the laughable nature of the name “chronic fatigue syndrome” we are still politically untouchable and invisible. When it comes to representation of our interests in Congress and to government agencies, we remain as disenfranchised as ever. As you work through the process of renewing your charter, please do what you can to increase the committee’s relevance and effectiveness, and work towards mechanisms that will yield results. Here are some suggestions of things to include in the renewed charter:

    • The committee must go back to 2 day sessions, and allow the previous levels of public comment.
    • The committee must revert to meeting 4 times a year, given the increased interest and pace of research, in order to ensure that the committees recommendations are acted upon, and that subcommittees have adequate time to formulate them.
    • Videocasting of the event needs to be guaranteed in the charter to allow access to the proceedings for the majority of affected parties who are too ill to attend. Accommodations for people with disabilities on site must be guaranteed as well.
    • Right now, this committee is the only way for affected parties to hold relevant government agencies accountable for their actions regarding this disease, this accountability needs to be maximized in every possible way. Look to the charters of other advisory committees, especially those with higher implementation rates, and find mechanisms to increase the implementation of committee recommendations.
    • The status of all recommendations, past and present, should be kept updated on the CFSAC website, and all responses from government agencies concerning these recommendations must be made public as well.
    • The committee should appoint ex officio members from any relevant agencies who are not already involved in this committee.
    • Above all else, remember that this is not the time to simply maintain the status quo, this is the time to push for as much relevance, authority, and accountability as is feasibly possible. We are counting on you.
  20. Jerry S

    Jerry S Senior Member

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    Excellent, sarahg!!!!!! I wouldn't change a thing. I went through it line by line and couldn't find any typos. But, then I didn't find all of mine after proofreading half a dozen times.

    :Sign Good Job: :thumbsup:

    Best wishes,
    Jerry

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