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On The Record

November 22nd, 2013

Public comment for the CFS Advisory Committee is due next Friday, November 29th. That’s not much time to prepare and submit comments, but I believe that you should if at all possible (instructions are here). Here’s why:

CFSAC and HHS need to hear your voice. Your input and point of view is important. CFSAC members and HHS employees need to hear it. By submitting public comment, you have a chance to speak to them and tell them what you think. The Federal Advisory Committee Act requires that the public be given such opportunities. Use it.

OnTheRecord_0001We are building a record. One of the advantages of the CFSAC meetings is that everything is on the record. When it comes to public comment, this is important. We need to be able to point Congress, policy makers, and the media to evidence of the government’s action and inaction on ME/CFS. One source of such evidence is the CFSAC public record.

We need to educate people. There are voting and ex officio members who join CFSAC with little or no understanding of what it means to live with this disease or which policy issues are of greatest concern to us. That’s not necessarily the members’ fault. I’ve been told that HHS currently provides no orientation for new members. The only way to be sure that members know about our perspectives is to share them through public comment.

Speaking isn’t enough. Technically, you can get a public comment slot without submitting something in writing. But your five minutes of comments won’t be part of the official record of the meeting. The meeting minutes no longer summarize public comments, so the only way your comments are officially captured is through written submission. It’s true that the videos of the meetings are available, but it’s not officially part of the record and no one will know where to look for your comments.

It has a direct and cumulative effect. There have been meetings where something said in comment is quoted by a committee member during discussion. There are also trends over time that have a less direct but cumulative effect, such as complaints about the CDC Toolkit. Coordination of multiple comments around a particular theme is especially effective.

We need to hear each other. I know I have learned from listening to your public comment. Sometimes you reframe an issue in a way I never thought of, and raise concerns to new levels of importance. Sometimes I am simply moved by what you said or how you said it. Hearing from you helps me think about the issues, and also inspires me to keep doing this work. And I certainly hope my public comment has been helpful to you!

More ways to comment. With this meeting, prerecorded video comment is once again being accepted. You can also submit comments in writing only, speaking only, or writing and speaking. Since this meeting is by webinar, in person comment will only occur by telephone.

I know it’s hard to write even one page of comment. I haven’t written mine yet! But it is very, very important to put your thoughts on the record. If you want to participate in public comment for the upcoming meeting, here is what you need to do:

Above all, speak your truth and let your voice be heard. It really matters.

 

  1. Ess
    November 22nd, 2013 at 12:10 | #1

    Hi, Jennie—Thanks for informing us very specifically about ‘FOR THE RECORD’ and making the point that ‘written’ comment is a permanent record (I will again ask for ‘read receipt’–as there are times when something can go wrong out in cyberspace–so we will pre-empt that).

    Soooo, much work to do; very important CRUCIAL work–I have printed out the CFSAC Webinar sheet on Public Comment so as to follow the guidelines–AND also your headlines of Testimony Tips which is an excellent guideline and format.

    You are right–if there was ever a time to SPEAK UP for ourselves and MILLIONS of others debilitated and oppressed with this horrific disease (and many of whom for various reasons are not able to)–here is a chance–we need MANY VOICES–writing will be my venue.

    Just to confirm once again that persons from outside the USA are allowed/WELCOMED to comment ?

    Many thanks again–your blog is verrrry helpful and informative, Jennie, and gives opportunity for ‘the conversation’ and sharing of ideas as we remain steadfast with being HEARD in the quest of a FIX for ME/CFS :)

    • Jennie Spotila
      November 22nd, 2013 at 12:21 | #2

      Written and pre-recorded video comment from people outside the US is accepted. Telephone comment is not. I hope you are able to submit something, Ess!

  2. readyforlife
    November 22nd, 2013 at 12:15 | #3

    If I write something a send it in will I have to read it? I’d like to write something so its on the record but I don’t want to have to call in and read it. I’m confused how this works.

    • Jennie Spotila
      November 22nd, 2013 at 12:23 | #4

      I know, the instructions are very confusing. You can absolutely submit written comment without calling in to read it live. You have two options: you can register to watch the webinar and attach your written comment to the registration. Or you can email your comment in to CFSACDec2013@seamoncorporation.com.

      Either way, you need to send that comment in by NOVEMBER 29, 2013. Not much time, but I hope you can send something in!

  3. Ess
    November 22nd, 2013 at 12:43 | #5

    Thanks for the outside USA/international clarification, Jennie. I certainly intend to send in a written submission!!! Lots of work to do–drafting/writing–reading and rereading . . . to get to the final copy!

    Just wondering–will you post this important info–ON THE RECORD–to other blogs to help reach far and wide ??

    @Jennie Spotila

    • Jennie Spotila
      November 22nd, 2013 at 12:50 | #6

      Good idea! I just posted it on Phoenix Rising. Feel free to share the link to the post far and wide in other venues where you think it will be helpful.

  4. Ess
    November 22nd, 2013 at 12:50 | #7

    A lot of fine details as per ‘readyforlife’s’ comment –N.B. — we are also required to register to send a written comment and they specifiy the format under ‘written comment’–such as number of pages, single spacing, 12-point type-face, etc. OK–guess we gotta follow that to the ‘letter’. @Jennie Spotila

  5. Ess
    November 22nd, 2013 at 13:53 | #8

    Jennie–I have more to say — it is because of your posting today that I will send in written comments–being involved in this process is not ‘what I know'; you do–I will gladly do my part by writing in.

    Thanks for reaching out to and reminding us; sometimes we need a little nudge, help and encouragement to offer up in that most important ‘speaking out’. @Jennie Spotila

  6. Ess
    November 22nd, 2013 at 15:00 | #9

    NEED ANYMORE REASONS FOR US TO SPEAK UP — At this link re Insurance Companies / psychiatrist / doctor connection with a bias re ME/CFS.

    http://www.lawyersandsettlements.com/articles/denied_disability/interview-wrongly-denied-disability-claims-insurance-7-19260.html#.UoT2zvlEKR1

    see the SECOND COMMENT posted by Nancy B., November 16, 2013

    AND

    http://www.americanbankingnews.com/2013/11/20/incorrect-government-information-could-be-hurting-chronic-fatigue-sydrome-patients-new-research-finds/#comments

    Helpful article in the NEWS–comment section there below from Nush re situation in Denmark with ME/CFS child removed from home–psychiatric care–GET–DISASTER–WHAT a horror show :( It is NOT okay for this to be happening anywhere!!

  7. Ren
    November 22nd, 2013 at 19:45 | #10

    Thanx for sharing this info!!

  8. Justin Reilly
    November 24th, 2013 at 13:37 | #11

    I am generally in favor of web conferencing to save money for our government, but do they really need to take out the video and the shortening to half the time is unacceptable.

    Thanks to Jennie for pointing out that phone in, video and in-person comments aren’t on the record, only written ones are! I had no idea. They need to make this more explicit.

    I suggest that we all focus on demanding that CFSAC denounce the IoM contract and call for its rescission and adoption of CCC! If we all hammer this home, I think we will have a good chance of getting them to do it.

  9. Ecoclimber
    November 24th, 2013 at 17:24 | #12

    After reviewing the last 9 years of meeting, did you expect anything different? As I commented before, the agency personnel on these committees are not the decision makers. They DO NOT have any real authority. Bureaucracies use these boards for public venting. It’s a ploy effectively used from the local school board, city councils to government agencies.

    Just watching some of the videos of prior years as patients gave their testimonies while agency members were fiddling around with their mobile devices, reading, texting was enough to convince me on the lack of credibility with this board. They were more concern with monitoring the clock than listening. Their bored faces were a dead giveaway.

    Very few instances of anyone really challenging them as the Aids patients did in the 80’s. I have not researched this aspect but I am curious if CFSAC and similar hearings must be conducted by specific rules set out in Federal Procedures, Guidlines or Regs or statutes.

    If this patient community waits until after the IOM conclusion based on the findings and fact, it is too late as the GWV found out. What recourse did they have other than Congressional hearings that went know where and their board stripped of funding and personnel.

    You have to stop it now and this means probably with a lawsuit or a ground swell of public opinion. A nice RICO class action lawsuit against the head of the organization would be nice.

  10. Ess
    November 24th, 2013 at 18:27 | #13

    BANG ON, ECOCLIMBER!!! We must STOP THIS NOW!!

    The ME/CFS EXPERTS and RESEARCHERS spoke up to ‘us’ and to the WORLD AGAINST THE IOM contract AND spoke FOR use of the CCC–they are leading the way for us to follow suit–may well get to a LEGAL ‘suit’!!

    The ME/CFS EXPERTS and RESEARCHERS KNOW full well of the devastation of the BIOLOGICAL disease of ME/CFS–they KNOW it knows NO boundaries in age or gender–they KNOW that ME/CFS IS a GLOBAL CRISIS — AND, has reached a GLOBAL CRISIS because the BIOLOGICAL DISEASE OF ME/CFS has been relegated and politicized to the waste basket for years and decades–ALL THE WHILE . . . S P R E A D I N G.

    Sooo, to continue the ‘story,’ the EXPERTS and RESEARCHERS ARE THE GOOOOD GUYS, as we know!!!

    BUT–‘the other team’ — we’ll call the BAD GUYS are ‘onto’ what the ME/CFS EXPERTS AND RESEARCHERS are doing and they want to put a STOP to the TRUTHS AND PROGRESS WITH ME/CFS research–because there has been MUCH COVER-UP for various reasons (and they need to keep that ‘shhhhhh–a secret’) — (cover-up) such as pretending that ME/CFS does not ‘really’ exist and if ‘they’ just IGNORE ‘us’ — WE and ME/CFS will just go away. WRONG ON BOTH COUNTS!!!! The IOM contract is one of ‘their’ tools in their toolbox.

    Let’s hear it for the GOOOOOD guys!!!!

  11. Ess
    November 25th, 2013 at 03:18 | #14

    Feel validated in your comments to the CFSAC–see the link with info re Dr. Sir Simon Wesseley. In human behaviour, oft times the NUT will call the other/s NUTS to deflect from themselves; I read anger issues and tantrum-like behaviour too.

    http://www.cfstreatmentguide.com/1/post/2013/11/sir-wessely-rides-again.html

  12. Ess
    November 25th, 2013 at 15:38 | #15

    Hmmm–I am getting confused with the process of sending in written comments–here are my questions if you would be so kind as to help with the clarification, Jennie–pls and tks :) Soo–if you want to watch the webinar AND send in written comment–then WE MUST REGISTER—BUT–if not able to watch the webinar AND wish to send in written comment ONLY, then our option is to e-mail our written comments to the e-address as above ?? I was getting concerned that if we simply e-mailed our comments–and didn’t register–then our comments would not be allowed–but as I reread AND reread, I see that registering written comments goes with watching the webinar. That was my confusion. Have I figured that out correctly?

    ALSO, ONLY 500 participants will be allowed to register for this meeting–I am assuming that does NOT include ‘non-registered’ e-mailed comments–thus, allowing potentially for more than 500 voices ? @Jennie Spotila

    • Jennie Spotila
      November 25th, 2013 at 16:00 | #16

      With the caveat that I do not know what CFSAC meant to say in their instructions, I think you’ve read this correctly. If you want to watch – with or without comments – you must register, and there are 500 spaces. If you do not want to watch, you can send those comments in by email without registering.

  13. Ess
    November 25th, 2013 at 16:48 | #17

    Thank you for the clarification, Jennie–I understand the caveat–that is what has led to the confusion.

  14. Gabby Klein
    November 25th, 2013 at 16:49 | #18

    I am not really clear as to what we are watching? Will we actually ‘see’ the CFSAC members from their individual locations?

    • Jennie Spotila
      November 25th, 2013 at 17:24 | #19

      We won’t see the members. I suspect all we’ll see is Powerpoint slides.

  15. readyforlife
    November 26th, 2013 at 17:11 | #20

    This is the fifth day of working on a letter to send. At first I wrote about the IOM contract and then thought no everyone else will be writing about that. So I thought I would write about the need for more funding. Then for some reason I started watching old CFSAC meetings and listened to people over and over again ask for funding and other important things. And nothing has been done. Watching the old footage just made me sad. So much suffering. So now i’m sitting here wondering if it’s worth writing anything. I just wasted five days trying to write something.

    • Jennie Spotila
      November 26th, 2013 at 17:19 | #21

      If you can do it, I think it’s worth writing something. Even if it’s been said before. Especially if it’s been said before!! We have to keep banging the drum. You might say something a new way, or phrase it just right to catch someone’s renewed attention. I think we need to keep speaking, increase the numbers, and recruit new voices.

  16. readyforlife
    November 26th, 2013 at 18:26 | #22

    Ok just sent my letter in. I’m sure once they read it there will be big changes coming. :)
    I’m glad I sent my letter at least I can say I tried.

    Thanks Jennie

    • Jennie Spotila
      November 26th, 2013 at 18:41 | #23

      Thank YOU! Every voice matters.

  17. Ess
    November 26th, 2013 at 23:11 | #24

    Gooood going, Ready for Life—every voice COUNTS and helps–WE count and we say so!!

  18. Sandra
    November 27th, 2013 at 11:27 | #25

    Since my public comment focused on the issues surrounding the IOM contract, I sent a copy of it to the IOM at mecfs@nas.edu. I wanted them to hear what I had to say as well.

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