Author Topic: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013  (Read 2886 times)

Patricia

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #30 on: December 11, 2013, 08:37:13 PM »
The treatment of ME patients by the US government, especially the HHS and CDC, is abysmal.

Obviously, CFSAC chose to require both a computer for visual and telephone for audio for this thing they are calling a "meeting" in order to make it as difficult as possible for ME patients, knowing that cognitive problems occur with the illness.   They want to make ME patients invisible.  It is only the latest in a 30-year-long record of failures of the US government agencies to do anything worthwhile for ME patients.

How much longer are ME patients going to sit quietly, saying please and thank you, to CAA, PANDORA, CFSAC, CDC and HHS for being treated to decades of suffering and death?

Sorry, I cannot listen to this fiasco any longer.  I have left my phone off the hook, so CFSAC is babbling along to itself in an empty room (which, frankly, I think is what it really deserves). 
« Last Edit: December 11, 2013, 09:45:34 PM by Wildaisy »
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Patricia

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #31 on: December 12, 2013, 02:49:46 AM »
What did Hillary Johnson think of today's CFSAC  "meeting"?  This is what she said on Twitter.
 
  •       Hillary Johnson@oslersweb    Inside-voice patients privately apologizing to fed officials for outside-voice patients' activities re IOM? Wow. Lobotomies-R-Us!
     
  Details      
  •       Hillary Johnson@oslersweb    From a D.C. insider:  $1 million is considered "budget dust" at DDHS, where budgets are often rounded off to nearest 10  or 100 million.
        Details
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Patricia

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #32 on: December 12, 2013, 03:11:22 AM »
This is what CFSAC's was posted in the CFSAC feed, taken from screenshots, was said during the meeting today.  Nancy Lee, M.D., made a very nasty attack on M.E. patients.  Some of what she said, which I distinctly heard with my very own ears, does not appear in this transcript

Here's the transcript:

Quote
Nancy Lee:
 
 I just want to remind everyone that CFSAC is an advisory committee, not an oversight committee. We take the advice and put it through our public health experience.
 
 I think later on Susan will be talking more about the NIH study. I really can't discuss that except to say that NIH is closely involved in this contract as far as managing the contract.
 
 I would like to close my remarks just to say that CFSAC members and ME/CFS advocacy had a true opportunity to contribute important information, perspectives and recommendations. I already know this and am happy about it.
 
 I've seen so much vitriol and personal attacks in email and blogs around the IOM study. I don't see how this will be constructive going forward, given the opportunity before the ME patients and families. 

(insert Dr. Lee's comment about those "inside voice" advocates "reeling in" those advocates she thinks are too aggressive)
 
 Everyone I know working to make the clinical diagnostic criteria a reality has good intentions and wants to make things better for ME/CFS patients. Implying that IOM staff or committee members don't have good intentions will not be helpful, and it could backfire.
 
 I had patient advocates apologize to me in private, when this happens in a public meeting or blog or email.
 
 Eileen Holderman:
 
 That was an indictment and a criticism of the advocacy community, and I need to respond to that on behalf of the advocates. I can't let that stand.
 
 This is a _highly_ contested issue. But for the most part you have seen constructive criticism -- experts' letters, advocates' letters, petitions, the congressional meetings, the demonstration, the proper letters, the Twitter campaign, media articles. So I am standing up for the community, saying thank you to the community for all they are doing.


CFSAC's transcriber really cleaned up Dr. Lee's nasty attack on M.E. patients.  I suppose we'll see if they do the same when they release the audio tape of this fiasco of a "meeting."  Or then again, since they are obviously not accountable to anyone for anything, they might just decide not to EVER release such a tape.  Or they may decide to doctor it before they release it.  That would not work, though; there were far too many of us listening today with our own reliable ears.

Nancy Lee, M.D., showed her true feelings today.  She indicated through her nasty diatribe against M.E. patients that she respects neither the disease nor those who suffer from it.  It is time for Nancy Lee, M.D. to be replaced as federal officer on CFSAC.  Someone who has no respect for either the illness or the disease should not be in such a position of power.


After Nancy Lee, M.D. spent about ten minutes in a nasty diatribe against aggressive ME advocates, she said that some advocates have privately apologized to her for the behavior of other advocates.  Then Dr. Lee said that those advocates had better find those advocates and "reel them in."


This is a blatant insult by a medical doctor directed at patients--M.E.patients who are fighting for their lives!  How dare she?

If you are on twitter, please tweet this:

@Sebelius Disappointed at CFSAC attack on ME patients today by Nancy Lee, MD, Fed. Ofcr. She should be replaced.#seeME #mecfs

 
 
 
 
« Last Edit: December 12, 2013, 03:21:36 AM by Wildaisy »
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Talkingfox

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #33 on: December 12, 2013, 04:31:54 AM »
If you remember last meeting she went on a diatribe about how put upon she was, working weekends and everything, and no one appreciated it.   Phht.

Patricia

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #34 on: December 12, 2013, 04:43:27 AM »
Quote
If you remember last meeting she went on a diatribe about how put upon she was, working weekends and everything, and no one appreciated it.   Phht. 

Yes, now that you mention it, I do remember that.  Poor baby!  We need to fix things so she doesn't have to do this any more--such as getting her replaced as Federal Officer assigned to CFSAC.

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Talkingfox

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #35 on: December 12, 2013, 09:31:18 AM »
oops, I think I may have gotten confused in the game of musical bureaucrats.

It may have been Susan Maier that was kvetching about how rough her stint at CFSAC had been

floydguy

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #36 on: December 12, 2013, 02:23:57 PM »
I have the additional quote from Lee.  She basically requests that those not using "inside voices" be "reeled in".  I'll post when I can.

Robyn

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #37 on: December 12, 2013, 05:14:19 PM »
oops, I think I may have gotten confused in the game of musical bureaucrats.

It may have been Susan Maier that was kvetching about how rough her stint at CFSAC had been

Oh I'm so sorry her life has been so inconvenienced by having to deal with our illness, SOMETHING SHE SIGNED UP FOR!!! And the fact due to all their non-action and dealing and listening to our fake advocates, the CAA and Pandora. We have been stigamatized for decades!  Patients have been living in torturous pain and agony, to the point many have taken their own lives.  I'm sorry but I don't feel sorry for her.  If she can't do what she signed up to do then GET OUT. We pay their salaries. Living for decades with an undiagnosed, untreated, and incurable illness is a bit rough.

Patricia

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #38 on: December 23, 2013, 03:04:59 PM »
http://www.hhs.gov/advcomcfs/meetings/presentations/cfsac-dec-10-11-2013-presentations.html

 Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations December 10-11, 2013
Hubert Humphrey Building
200 Independence Avenue, S.W.
Room 800
Washington, D.C. 20201Public TestimonyWednesday, December 11, 2013Written Testimony
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Wally

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Re: CFSAC Fall 2013 Webinar Meeting Dec. 10-11, 2013
« Reply #39 on: January 14, 2014, 12:23:42 PM »
I am so far behind in my reading that I missed some of these posts.

I was trying to find an audio and/or visual recording of this meeting on-line, but so far I have not found either. Has anyone been able to locate these?  I would think that it now being over 4 weeks since this meeting(s) took place that the HHS should have the resources available to make said meeting recordings available?

I did not have an opportunity to provide my experience with dealing with uploading my pre-recorded testimony for this meeting, but it was quite interesting.

As some of you may be aware, I was in D.C. Lobbying/demonstrating for this illness during the period that this little fiasco meeting took place and I was not able to listen/watch the meetings myself.

I believe I may have given some public testimony from the back of a cab on the way to the airport on the afternoon of Dec. 11th. However, I am not sure if this conversation was ever broadcast? I would like to hear what I said (even if cringe worthy) while "flying from the seat of my pants" without any notes to look at.  How I ended up giving public testimony from the back seat of a cab is in another part of my adventure in Washington that I still plan to share (at a later date) with anyone who is interested.

Writing up a report on how my trip to D.C. went has not happened as quickly as I planned due to my complete exhaustion following this trip, the Christmas and New Year's holidays, a bout of the flu, extensive planning required for my return trip to D.C. at the end of the month and trying to keep up on all the activity surrounding the IOM contract. Wow! Just a few things in the hopper. I think this would be overwhelming for a "normal" person. I am pretty darn proud of all my fellow ME/CFS patients to see how much we can accomplish even when faced with a complex illness with varying degrees of disability.

Go! Canaries! You know that when they start trying to tell people that you should quiet down and play nice that you are beginning to be heard and the status quo is no longer in place. I plan to keep chirping away and I hope you will join me. More info. to follow later this week on how you can help with Round 2  of "Wally Goes To Wasshington, if you would like to join in the message this ME/CFS patient will be bringing to D.C. using "Wally's" outside voice.

I leave you this morning with yet another oldie but goodie to keep your toes dancing while you rest in your beds getting ready for the fight we continue to face.

Wally  8)

[url]http://youtu.be/tH9zG28GQEg[url]

P.S.  Why does Wally (Susan Kreutzer) not show up in the CFSAC's list of people providing public testimony? Are these lists only for people who gave written testimony.  Wally did provide pre-recorded testimony as per the CFSAC's instructions. This testimony is in the hands of the CFSAC/HHS and it is available on my YouTube Channel at http://youtu.be/PJFQZrpW5uY. 

Apparently, the HHS was not able to hear my testimony when they tried to play the recording. Just a thought, but perhaps if you take you hand off the mute button when you feel that patients are not using appropriate "inside voices" you might be able to actually hear what patients are trying to tell you. 

(Note - I re-uploaded this video on my channel last night to include an additional 30 seconds of my video testimony that I had taken out of my "official" submission" to the HHS in order to come in under their 5 minute rule for submitting public testimony. I just thought it would be worth posting this additional few seconds of testimony in order to show what I had tried to say in its entirety, especially because my YouTube Channel has no time restrictions.)  ;)

Sent from my iPad