CFSAC Meeting Dec. 3rd & 4th, 2014

[OneWaySurvival]

who is this guy who is all about "we missed our opportunity to have any sort of effect or influence"?
and just waiting until it's all done to offer a commentary after the fact?

I think it's Gaylen Marshall who calls it [sic] "CSF".

Gailen Marshall is no longer there. The guy making the above comments (who has experience on other P2P processes, etc.) is Gary E. Kaplan, D.O.

 

[leela]

Oh, sorry @OneWaySurvival , I wasn't clear...I meant in the past, during his tenure there, Gailen consistently used to refer to the disease for which he was a sitting committee member by the wrong name.

 

[OneWaySurvival]

I've had problems listening the last 2 days -- especially during Donna Pearson's presentation as well as her comments. This is concerning to me because she is the sole patient advocate. I have asked DHHS to post her Powerpoint and possibly a transcript online. If you agree with me, tell CFSAC staff also.

I actually was able to hear Donna's entire presentation. Some have emailed her directly and told her they missed audio on half her presentation, and she mentioned it on the broadcast. However, I was able to hear the whole thing, and my guess is that others did too.

If I knew Donna's email, I would tell her and reassure her that at least some people in the public heard her entire testimony. Her comments and her knowledge of the CFSAC charter has been fantastic, and I do hope a transcript is made available.

Donna is really knocking it out of the park today. She has been a super star.

 

[Valentijn]

Was Donna's presentation the one where the volume was really low? I was only able to hear it by maxing the volume on the video player and on my laptop.

 

[OneWaySurvival]

Oh, sorry @OneWaySurvival , I wasn't clear...I meant in the past, during his tenure there, Gailen consistently used to refer to the disease for which he was a sitting committee member by the wrong name.

Yes, I remember him being dyslexic and he ALWAYS called it CSF instead of CFS. I don't remember if he ever called it E.M.

But even with him gone, I was puzzled to see how many of the slides yesterday by various presenters (feds and non-feds) had it spelled out ME/CSF. Just another reason to get rid of the CFS acronym altogether, right?!

 

[Wally]

Is the CFSAC not provided with an outline of procedures/guidelines for conducting CFSAC meetings (i.e. number of voting members needed for a Quorum, types of sub groups that can be used to assist the committee etc...)? I found it interesting that Donna Pearson (a new member to the committee) seemed to be the most knowledgeable person participating in the meeting regarding these procedures/guidelines. It also appeared that the past and present Federal designated officials assigned to this committee may also not be well versed in the different type of sub groups that can be utilized by the committee to facilitate completion of projects.

 

[Wally]

Was Donna's presentation the one where the volume was really low? I was only able to hear it by maxing the volume on the video player and on my laptop.

@Valentijn,
I was also not able to hear a lot of her presentation due to a problem with the sound. I had the speakers on my computer turned up to full volume.

 

[Sing]

I felt that overall it was a good meeting. I felt that the people involved are interested in moving things forward. What I am contrasting this meeting with is particularly the meetings that Dr. Nancy Lee chaired. She both confused and obstructed the real purposes of this committee and insulted some of the presenters along the way. Her absence is a huge relief to me. I certainly hope she gets her comeuppance for violating the rules for committees.

 

[leela]

Sing, I totally agree. I don't know how or why people are allowed to get away with lying and cheating, especially in a public service capacity.

 

[Sing]

To me it is unconscionable! Some follow the exact letter of the law as the committee today with Barbara's input was doing, while others arrogantly brush aside both the spirit (intention) and letter of the law, feeling they are entirely above it. What these people are probably doing is acting in keeping with whomever and whatever they see as holding the real power in the situation, the powerful people and their purposes. I certainly would not regard people like Dr. Lee as courageous.

 

[RL_sparky]

Can someone who listened today tell me if Dr. Montoya took part and if he contributed? I know he missed yesterday and also was not on the bit I was able to listen to. He must have a lot on his plate or sick to not take part.

 

[Nielk]

I am writing this while pretty ill but, I felt I had to write down some of my thoughts.


I have to strongly disagree with those who felt that this was a “good” meeting felt that it was greatly problematic. The following words come to mind:


Unprofessional

Ignoring

Disconnected

Co-opted



Unprofessional


The quality of the webcast was very poor. There was a problem with the sound intermittently fading in and out. The slides were either jumpy or when viewed in full screen mode (the only way to actual see it), the words were faded out.


The committee members seemed to take time out such as answering a door or a phone call. There were a number of times when phone calls and/or background music was heard.


Public comments were abruptly stopped at three minutes in lieu of the courtesy of a 30 sec. warning. One patient/advocate’s testimony was rudely cut off in the middle and it took about 20 mins. to get her back on.


During discussions, members seemed ignorant of CFSAC rules.


Ignoring


Jennie Spotila and other advocates testified to the fact (which Jennie blogged on extensively) that Nancy Lee had illegally “altered” CFSAC recommendations by totally leaving one out and deleting reference to the Canadian Consensus Criteria on many others. (This was a key point for the recommendations)


This should have been really disconcerting to the CFSAC voting members who have worked very hard in composing each of these recommendations. They should all be appalled and I was sure that they would discuss this problem at this meeting.


All I heard was silence.


Disconnected


I feel that this committee is disconnected to the patients/advocates’ voices. During these two days, we have heard from more than a dozen public testimonies. All comments stressed the fact that our community is against the IOM and P2P. These two processes are not needed, expensive and the outcome will be damaging to the community.


What I heard from the committee is mostly praise and anticipation for these results. (Except Mary Ann who voiced her misgivings)


Co-opted


This is the BIG one!


It seems that HHS has hired the CFSAC committee to be their marketing group. Sue Levine gave a talk of how CFSAC can “help” ROLL OUT the upcoming final report of the P2P and IOM. They want to find the best way to quickly disseminate the results far and wide. She proposed using all types of media. She even mentioned Phoenix Rising!


There was not one word of hesitations by Levine as to the QUALITY of those reports. They proposed starting a working group within CFSAC to prepare for this public relation coup.


I am angry…real angry.

 

[Nielk]

Can someone who listened today tell me if Dr. Montoya took part and if he contributed? I know he missed yesterday and also was not on the bit I was able to listen to. He must have a lot on his plate or sick to not take part.

Montoya was absent both days.

 

[Undisclosed]

I am writing this while pretty ill but, I felt I had to write down some of my thoughts.


I have to strongly disagree with those who felt that this was a “good” meeting felt that it was greatly problematic. The following words come to mind:


Unprofessional

Ignoring

Disconnected

Co-opted



Unprofessional


The quality of the webcast was very poor. There was a problem with the sound intermittently fading in and out. The slides were either jumpy or when viewed in full screen mode (the only way to actual see it), the words were faded out.


The committee members seemed to take time out such as answering a door or a phone call. There were a number of times when phone calls and/or background music was heard.


Public comments were abruptly stopped at three minutes in lieu of the courtesy of a 30 sec. warning. One patient/advocate’s testimony was rudely cut off in the middle and it took about 20 mins. to get her back on.


During discussions, members seemed ignorant of CFSAC rules.


Ignoring


Jennie Spotila and other advocates testified to the fact (which Jennie blogged on extensively) that Nancy Lee had illegally “altered” CFSAC recommendations by totally leaving one out and deleting reference to the Canadian Consensus Criteria on many others. (This was a key point for the recommendations)


This should have been really disconcerting to the CFSAC voting members who have worked very hard in composing each of these recommendations. They should all be appalled and I was sure that they would discuss this problem at this meeting.


All I heard was silence.


Disconnected


I feel that this committee is disconnected to the patients/advocates’ voices. During these two days, we have heard from more than a dozen public testimonies. All comments stressed the fact that our community is against the IOM and P2P. These two processes are not needed, expensive and the outcome will be damaging to the community.


What I heard from the committee is mostly praise and anticipation for these results. (Except Mary Ann who voiced her misgivings)


Co-opted


This is the BIG one!


It seems that HHS has hired the CFSAC committee to be their marketing group. Sue Levine gave a talk of how CFSAC can “help” ROLL OUT the upcoming final report of the P2P and IOM. They want to find the best way to quickly disseminate the results far and wide. She proposed using all types of media. She even mentioned Phoenix Rising!


There was not one word of hesitations by Levine as to the QUALITY of those reports. They proposed starting a working group within CFSAC to prepare for this public relation coup.


I am angry…real angry.

I feel just about the same way. They do nothing. They get worse year after year. They sound so unprofessional. Useless.

@Nielk -- I didn't watch much tonight, if anything, because I was fed up -- what did they say about Phoenix Rising.

 

[Nielk]

I feel just about the same way. They do nothing. They get worse year after year. They sound so unprofessional. Useless.

@Nielk -- I didn't watch much tonight, if anything, because I was fed up -- what did they say about Phoenix Rising.

Sue Levine just called out a list of venues to promote the results of the IOM and P2P and Phoenix Rising was part of the list.
By the way, in case PR is used in that way, it will be my sign to hang my hat and leave.

 

[Sing]

I heard Dr. Montoya speak today, but he had an emergency call and had to leave later on in the meeting.

 

[Sing]

Sue Levine just called out a list of venues to promote the results of the IOM and P2P and Phoenix Rising was part of the list.
By the way, in case PR is used in that way, it will be my sign to hang my hat and leave.

I might be mistaken but I thought that this spreading the word plan was specifically about a new name, which is one of the things on the list.

 

[Nielk]

I might be mistaken but I thought that this spreading the word plan was specifically about a new name, which is one of the things on the list.

No - definitely NOT.

It was very clear that it is to disseminate the final result of the report. We don't even know if there will be a namce change.

 

[catly]

I only got to listen for an hour or so yesterday and only a few minutes today but I appreciate all those who provided testimony and who made comments on PR...so thanks to you all.

 

[RL_sparky]

Montoya was absent both days.

I heard Dr. Montoya speak today, but he had an emergency call and had to leave later on in the meeting.

Well I hope he is working on something big! I know how much he wants to help the community so it has to be important if he missed most of the meetings.
Thanks for the response.