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CFSAC Meeting June 20 -21 2018 Announcement

Discussion in 'Upcoming ME/CFS Events' started by Gemini, May 16, 2018.

  1. Gemini

    Gemini Senior Member

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    Good morning, below is the link to the Federal Register notice (FRN) announcing the upcoming CFSAC meeting June 20-21, 2018. We will be accepting public comments through Wednesday, June 13. We will post the final agenda on the CFSAC website as soon as it becomes available. We look forward to your public comments. Thank you.

    https://www.federalregister.gov/documents/2018/05/09/2018-09844/meeting-of-the-chronic-fatigue-syndrome-advisory-committee

    The CFSAC Support Team

    Email: cfsac@hhs.gov

    Website: http://www.hhs.gov/ash/advisory-committees/cfsac/index.html

    Sign up for the CFSAC listserv to receive the latest updates about CFSAC: http://www.hhs.gov/advcomcfs/cfsac_email_list.html
     
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  2. Sing

    Sing Senior Member

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    The agenda has been posted and CFSAC is receiving public comments at cfsac@hhs.gov until June 13. I sent in the following:

    As a patient with ME/CFS for nearly 22 years, and one who has followed the research, I want to submit to the federal government and its agencies, an important idea:

    The evidence from ME/CFS research is showing that patients exhibit a general down-regulation across key systems in the body, as if the homeostatic dial has been turned down and reset. The evidence also shows there are multiple sources of causation, initiating illnesses caused by viral, bacterial, fungal, or parasitic agents as well as by toxic exposures and sometimes immunizations. Then there are 1/3 to 1/4 of patients report a gradual onset with no specific, identifiable cause. Though a genetic component has been indicated by family incidence, no specific one has been determined. While the majority of identified patients are adult and female, it has been shown that anyone at any age can get it.

    The consequences of this illness are that most can no longer work or go to school full time, while 1/4 are house or bedbound.

    The general point is that potentially anyone can get this lifelong downturn in their health, as a result of any severe infection or exposure, with effects which range from the disabling to the fully crippling.

    Since we know that there will continue to be such public infections and exposures, shouldn’t it be a priority for research to learn both exactly what is going on within the ME/CFS condition and how it can be successfully treated? Especially if it can be learned how to reset the body’s homeostasis back to normal? A few of the top researchers in this field are attempting to do just this, though on shoestring budgets which continually disrupt or postpone what they can achieve.

    Wouldn’t this be a smart priority for institutional and financial support? This illness, which has been found worldwide and which already affects approximately one million in this country, could easily become even more widespread when there are future epidemics or toxic exposures. Additionally, the scientific knowledge which could be gained might well prove to help in the understanding and care for many other illnesses.
     
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  3. Gemini

    Gemini Senior Member

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    CFSAC Meeting Agenda-- Webinar

    Day 1 June 20, 2018

    9:00 a.m. to 5:00 p.m. (EDT)
    Call in number: 888-788-9429
    Participant passcode: 5959754


    9:00 a.m. Call to Order/Roll Call/Logistics
    CDR Gustavo Ceinos, M.P.H., Designated Federal Official

    9:10 a.m. Opening Remarks
    ADM Brett P. Giroir, M.D., Assistant Secretary for Health
    Nicole Greene, Acting Director, OWH
    Faith Newton, Ed.D, Chair, CFSAC


    9:20 a.m. Approval of minutes from last CFSAC meeting
    CFSAC Members

    9:30 a.m. Updates on implementation of recommendations from last CFSAC meeting
    CDR Gustavo Ceinos, M.P.H., Designated Federal Officer
    Faith Newton, Ed.D, Chair, CFSAC

    9:45 a.m. Agency Updates and Questions
    Centers for Disease Control and Prevention: Ermias Belay, M.D
    Agency for Healthcare Research & Quality: Theodore Ganiats, M.D.
    Social Security Administration: Michael Goldstein


    11:00 a.m. Presentation from Liaison Organizations
    Simmaron Research, Inc: Courtney Miller
    Massachusetts CFIDS/ME & FM Association: Leah Williams
    ME Action: Terri Wilder


    12:00 p.m. Lunch

    1:00 p.m. Public Comments
    Members of the Public

    2:00 p.m. Discussion of public comments
    CFSAC Members

    2:15 p.m. Update from the Medical Education Work Group
    Medical Education Work Group: Lucinda Bateman, M.D., Chair

    3:00 p.m. Break

    3:15 p.m. Research Update on Pediatric ME/CFS
    Peter Rowe, M.D., Division of General Pediatrics & Adolescent Medicine, Johns Hopkins School of Medicine

    4:00 p.m. Recommendations and next steps
    All

    5:00 p.m. Adjourn

    Day 2 June 21, 2018

    9:00a.m. to 5:00p.m(.EDT)


    9:00 a.m. Call to Order/Roll Call
    CDR Gustavo Ceinos, M.P.H., Designated Federal Official

    9:10 a.m. Opening Remarks
    Faith Newton, Ed.D, Chair, CFSAC

    9:20 a.m. Agency Updates and Questions
    National Institutes of Health: Vicky Whittemore, Ph.D
    Department of Defense: LTC Christopher L Tracy M.D., FACP, FACR
    Department of Veteran Affairs: Drew A. Helmer, M.D., M.S.


    11:30 a.m. Update from the Pediatric Education Work Group and Parent Information Center
    Faith Newton, Ed.D, Chair, CFSAC
    Carmen Sanchez, Education Program Specialist, US Department of Education

    12:00 p.m. Lunch

    1:00 p.m. Research Update on Adults ME/CFS
    Derya Unutmaz, M.D., Jackson Laboratory for Genomic Medicine Farmington, CT

    2:00 p.m. Break

    2:15 p.m. Update from the Clinical Trials and Treatment Work Group
    Amrit Shahzad, MBBS, MBA, CFSAC Member

    3:00 p.m. Agency Updates and Questions
    Food and Drugs Administration: Silvana Borges, M.D.
    Health Resources & Services Administration: TBD

    3:30 p.m. Public Comments
    Members of the Public

    4:30 p.m. Discussion of public comments
    CFSAC Members

    4:45 p.m. Next steps
    All

    5:00 p.m Adjourn

    *Final agenda subject to change due to availability of speakers
    **Deadline for submission of Public Comments is June 13, 2018
     
    Dolphin likes this.
  4. Gemini

    Gemini Senior Member

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    Bump, starts tomorrow.
     
  5. Diwi9

    Diwi9 Senior Member

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    Is anyone listening?

    ETA: Toll number: 773-681-5893, Toll free number: 888-788-9429, Passcode: 5959754
     
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  6. Sing

    Sing Senior Member

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    Yes I’m listening. (It is being recorded.) I didn’t hear it from the start this am, but my impression is that over the years I have listened, at least our people have progressed in clarity, organization and focus. It’s like a baseball team—we’re getting better. By “we”, I mean not only patients but also the doctors, other professionals, advocacy organizations, etc. I know we haven’t won a lot of games, but we are definitely improving as a team and will be more successful.
     
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  7. Wally

    Wally Senior Member

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    Does the online link to the webinar have sound? I am asking because on my iPad, I was able to see the slides that were posted, but there was no sound. Anyone else using an iPad to try to access the meeting? Trying to figure out how others had success listening to and watching the meeting, so I might be able to work out my tech issues before tomorrow’s meeting. Any suggestions?

    @Sing, @Diwi9, @Gemini
     
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  8. Sing

    Sing Senior Member

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    I only listened over the phone. My iPad had given me a message that Safari didn’t accept something for the online event (slides and audio).
     
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  9. Wally

    Wally Senior Member

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    @Sing - I am just puzzled why the meeting would not be easily accessible for people to watch by just going to the government’s website and clicking on a link. I was required to give my full name, e-mail address etc... just to download a new app (Chrome Webinar) that came on without sound. May have been tech problems on my end, but I am just a patient who is not well and so far this “public” CFSAC Meeting” did not feel very easy to gain public access to. It seems like time after time the government fiddles with how these meetings will broadcast and there is some glitch in the delivery that makes access for the public, especially for disabled and cognitively challenged patients very difficult.

    My other gripe is that it is hit or miss, if I get an e-mail about these meetings. I have signed up for the listserv a number of times and I have received confirmation that I am on the list. However, when the next meetings role around I may or may not receive notification of the meeting. I always check my spam or junk folder to make sure the message did not end up there. Maybe I am on a a secret “no admittance” list for these meetings or just extremely technically challenged.

    Perhaps there is needed a “Special Counsel”* to look into why there seem to be so many problems with providing consistent notification and access to government info. about ME/CFS.

    *For those not in the U.S., my Special Counsel comment was made with some sarcasm based on how our political landscape is currently consumed with talk about “Special Counsel” investigations and reports.
     
    Last edited: Jun 20, 2018
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  10. Gemini

    Gemini Senior Member

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    At the end of Day 1, they announced a different Call-in Number for Day 2:

    Day 2 June 21, 2018

    Call-in number: 1-888-942-9693


    Participant passcode: 5959754 (same as Day 1)
     
  11. Sing

    Sing Senior Member

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    Cindy Bateman is doing a great job organizing for needed changes!
     
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  12. Gemini

    Gemini Senior Member

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    I don't think so @Wally. For my Windows 10 laptop I have to call-in on my phone which I put on Speaker for sound.
     
  13. Wally

    Wally Senior Member

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    @Gemini - Thank you for providing the new call in number for tomorrow’s meeting and letting me know how you accessed the meeting for viewing and sound.
     
  14. Diwi9

    Diwi9 Senior Member

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    @Wally - Yes, you have to call in for audio and can view the slide presentation on line. Took me a while to figure that one out this morning.
     
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  15. Diwi9

    Diwi9 Senior Member

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    I was a bit surprised that Amrit was so disparaging toward advocacy groups not working together...I see the exact opposite thing happening. Then, along comes Cindy Bateman spoon-feeding the federal government with a healthcare model she's investigated by way of her non-profit...when federal agencies should have the institutional knowledge to make propose these changes. Imagine if Cindy Bateman were in a federal appointment...she's so productive...glad she's on Team ME!
     
  16. Sing

    Sing Senior Member

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    @Wally I sympathize with you and have the same difficulties. I put the meeting on both my calendars, then looked for the thread to find out what to do as I hadn’t gotten any updated notification from CFSAC recently. I wonder if their recording somewhere will have both sound and slides? Wouldn’t it be nice if everyone who had registered would get a link for a recording with both, afterwards? I hope whatever is made available that a link will be posted on this thread.

    Thank you @Gemini for letting us know the different phone number for tomorrow. I missed that.
     
    alkt likes this.
  17. pwme_92

    pwme_92

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    Update, presentation is live now. I will also share out an archived recording (though you may need to register with NIH to access that).

    Currently, Mathew Reinhard (co-chair along with Nancy Klimas) is sharing out information about the NIH-VA Gulf War Illness Deep Phenotyping Study
     
    Sing likes this.
  18. pwme_92

    pwme_92

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    @Wally, I couldn't agree more and it is *not* intuitive to access the proceedings. However, I may be able to provide a bit of insight after working in similar environments (NSF, USAID) for some years now to provide communications channels to the public.

    Short answer
    I'd wager a bet that some harried staffer or contractor didn't set up some campaign/link correctly somewhere. This probably doesn't offer you any more information than what you've already surmised.

    Long answer
    How hard can't it be? Why can't agencies and government entities get it together when sharing their findings around costly and time-intensive projects?

    A large part of this is due to the simple nature of very, very inefficient government contracting. The agencies/bureaus are most concerned with their primary missions (or, at best, the dedicated bureaucrats/civil servants employed therein who make it their "life work" in these settings). So, at NIH, they're most concerned about the science/medicine.

    Now, presenting that stuff out to the public (through public affairs) becomes secondary. It's not the agencies primary reason for existence.

    There's also a flood of content/findings that come through. Every single researcher/project is convinced that their project is the most important work being done. An efficient agency sets priorities and sticks to them, routing and elevating key priorities. IMHO, there is no "efficient government agency," the term is oxymoronic.

    To summarize the paragraphs above, often the people at the top of the pyramid don't set consistent, clear, immutable objectives for their staff; much less clear marching orders.

    And then administrations change and an entire agency may have to "pivot" for political expediency. An agency cannot pivot. Rather, it begins a large, clumsy, unwieldy turn that--if lucky--may be nearing completion when a new president is elected. At that time, an agency may receive an entirely new mandate. Wash, rinse, repeat.

    Then you have "beltway bandits," government contractors, whose primary business is winning government bids. In my experience, there is no "go-to" for multimedia and communication solutions among agencies; rather, there it's an organic environment that some winning contractors may handle in-house and some other winning-contractors may then bid out to a sub-contractor. And there are different parameters/requirements for every bid.

    Depending on how a contract is fulfilled, it will either be clean, elegant, and usable for the term of the contract (and, ideally, beyond, if it's future-proofed). And a smart contracting officer/staff will build on prior procurements to expand its capabilities.

    Unfortunately, at least in my experience, that rarely happens. Because, by design, agencies do *not* staff/fund for this capability, that fact, coupled with the rapid rate of change with technological tools (web, AV, multimedia, etc.), leads to a constant churn it what's used and the tools used to share/present information to the public.

    If you're still with me, I'll now backtrack -- the phone has been around as a communication channel for over 140 years. Outside of a hiccup here or there given staff and contracting turnover, there is no reasonable explanation or "answer" as to why a group or agency cannot painlessly make a teleconference available to the general public and, then, share out all other resources presented via email.
     
    Last edited: Jun 21, 2018
  19. Hope123

    Hope123 Senior Member

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    Trying to watch today.

    As usual, the ability to access CFSAC is horrible. Couldn't access the webstream this morning and was told that the link on the current CFSAC website is WRONG.

    WRONG: URL: https://www.mymeetings.com/nc/join.php?i=PWXW7447575&p=5959754&t=c

    Called CFSAC up and they told me that they sent out a new link yesterday to the Listserv. However, I'm on the Listserv and did not get any e-mails notifying me of so. Asked them to re-send link again and will post.

    CORRECT URL:

    Participants can join the event directly at:
    https://www.mymeetings.com/nc/join.php?i=PWXW7447583&p=5959754&t=c

    FOR AUDIO: I am not sure why there are issues with Webex audio; in other settings, I have used Webex and we just hear audio directly.

    But for CFSAC, I have to dial in:

    Call in number: 888-942-9693

    Participant passcode: 5959754

    I have been watching CFSAC for years and it's always a terrible mess the way they make everyone jump through hoops to participate: especially people who are already disabled and have a difficult time with cognition.
    It's ridiculous for them to make this a) a webinar and b) switches passcodes AND URLs over 24 hrs. How the H*LL are people supposed to keep track? I've participated in multiple other non-CFSAC teleconferences over the years and it's never as messy as CFSAC.

    If you want to complain - I'm going to -- call them up or write:

    Contact CFSAC
    For further information, contact:

    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    Office of the Assistant Secretary for Health
    U.S. Department of Health and Human Services
    Hubert H. Humphrey Building, Room 712E
    200 Independence Avenue SW.
    Washington, DC 20201
    (202) 690-7650 (Voice)
    (202) 401-4005 (FAX)
    cfsac@hhs.gov (Email)
     
    Last edited: Jun 21, 2018
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  20. Diwi9

    Diwi9 Senior Member

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    I still can't log in...at least I can dial in and listen.
     

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