CFSAC - Do only 200 people in the world care about CFS?

[Sasha]

Ignore my recent post - my leaky brain didn't realize the sound was being made by another window I had open. DERP.

DERP here also. Didn't read this thread til later. Argh.

 

[Sasha]

Well, if they can get the CDC Toolkit pulled straight away, and possibly replaced by the Primer, that's one good thing. That poor CDC guy (couldn't catch his name) seemed to expect everyone to be happy they'd just sent it to 17,000 doctors telling them to CBT/GET everybody (is that right? They'd actually sent it out already?). He can't have been aware of all the objections from the ME community and it worried me that he didn't seem to be taking it in that people thought the content harmful. He just seemed to keep repeating that people were objecting to the tone and wording. I loved that lawyer guy who kept saying "content! it's the content!"

I think it's true, the lack of continuity means that there's an endless stream of people from other agencies turning up and with no idea of what's been going on. For the CDC to send that guy without briefing him was ridiculous.

 

[CBS]

Well, its official! Apparently not even the eleven members of the CFSAC committee can make the effort to appear interested in CFS! If you're waiting for the US Gov't to do something about this damned disease, good luck!

 

[CJB]

No, it is not. Directive is to provide advice to Secretary of Health.

(this could be a fundamental failing in the charter, design, etc. Do other advisory committees have power? um, the name implies not. why not? who regulates the agencies? nominally, Congress and the White House, but in reality, Congress and WH defer to the agencies - all of them, not just health; this is a systemic failure in our entire government structure: there is virtually NO accountability for agencies, they do whatever they like, they run by a GOBSART model, they are self-contained)



Yes. New info to new members, who cycle through regularly (good feature for informing more ppl? but makes the panel dysfunctional, as must continually start from scratch to inform new people of severity, nature, etc.)

Supposedly info passed to Koh, Sebelius. What they do with info is beyond me. Write a letter in reply and then put recommendations in the round file?

[/quote][/quote]

You're bringing me back to a particularly rough point for me personally in the meeting. The chair, Nancy Lee, was reporting that last year's recommendations had been through the review process (apparently lengthy and demanding), the letter had been sent to Secty' Sebellius (sp?) and they thought it was "powerful". Which sounded great until the realization sunk in that NOTHING had been actually done with the recommendations from last year except rattling around in bureaucratic soup.

From what I can tell, they are an Advisory Committee where the government interfaces with the patient representatives. They are supposed to then formulate recommendations the agency reps can take back for action. They have no authority, but hopefully influence.

 

[shannah]

[/quote]
The chair, Nancy Lee, was reporting that last year's recommendations had been through the review process (apparently lengthy and demanding), the letter had been sent to Secty' Sebellius (sp?) and they thought it was "powerful". Which sounded great until the realization sunk in that NOTHING had been actually done with the recommendations from last year except rattling around in bureaucratic soup.
.[/quote]

Didn't she also mention something about an official reply was in the works but had to go through the approval channels and would be ready (at a snail's pace) for the next meeting. Do these people realize their meetings are not weekly but 6 months apart??? If this kind of thing went on in private industry, the country would be bankrupt!

Typical government subcultlure mentality! They justify their lofty titles and their comfortable incomes with impressive sounding material and self congratulations believing their own rhetoric.

 

[urbantravels]

Thanks for that. I didn't find the mute button on CoveritLive, so I was stuck alternating between listening to the irritating click and muting everything and getting by with the CoveritLive report. Now that I know there is a button somewhere I'll look for it more thoroughly next time.

It's in the thin bar across the bottom of the page, directly to the right of the "CoveritLive" logo. It's a tiny blue speaker-shaped icon.

 

[urbantravels]

So, are the new members of the committee not briefed in some separate venue beforehand, rather than playing catch-up during the public meeting itself? Or perhaps they are provided briefing materials beforehand which they don't read? (which would not be the first time that has happened in the history of meetings).

The public testimony is heart-wrenching, but who really sees it? And does it really differ from year to year? It seems like the wrong place for an appeal to the emotions, since the people on the committee actually *can't* do anything different whether they are emotionally moved or not. And you can't "pass along" an emotional response to your higher-ups, much less have it influence their actions.

 

[Sasha]

The public testimony is heart-wrenching, but who really sees it? And does it really differ from year to year? It seems like the wrong place for an appeal to the emotions, since the people on the committee actually *can't* do anything different whether they are emotionally moved or not. And you can't "pass along" an emotional response to your higher-ups, much less have it influence their actions.

Good point - have been wondering whether the balance of the public testimony is wrong.

I've started a thread to discuss the meeting now it's over and see if we can come up with some constructive things to get the best out of this committee. It's here:

http://forums.phoenixrising.me/inde...acs-over-what-should-we-do.17972/#post-273941

 

[SOC]

So, are the new members of the committee not briefed in some separate venue beforehand, rather than playing catch-up during the public meeting itself? Or perhaps they are provided briefing materials beforehand which they don't read? (which would not be the first time that has happened in the history of meetings).

It is the responsibility of the committee chair to make sure the necessary information is disseminated to the committee, and to influence the members to read it beforehand. It's my impression that the committee members were not given advance materials. However, if they had been and didn't read them, the committee chair did not call them on it. That's poor chairmanship. I'm not confident that even the committee chair was up to speed on the necessary information. Did the chair even know the CCC and the ICC exist, for example, much less know what the differences are?

The public testimony is heart-wrenching, but who really sees it? And does it really differ from year to year? It seems like the wrong place for an appeal to the emotions, since the people on the committee actually *can't* do anything different whether they are emotionally moved or not. And you can't "pass along" an emotional response to your higher-ups, much less have it influence their actions.

My thinking exactly. It's nice to be heard, and the emotional message seemed to get through to some of the committee, but if they have no background in the state of ME/CFS in American medicine today, they can do nothing meaningful for us.

It government employee parlance, this is called a do-nothing committee. Agencies send low level officials because they are required to, but nobody cares enough to plan, organize, research, or otherwise do something constructive about the subject. I don't blame the committee members for this, particularly. It's the fault of the organizing agency that there's no importance given to the committee's area of responsibility.

 

[Dolphin]

I have never followed a whole CFSAC meeting that closely (the nearest thing to it was the last one) but my impression was that Lenny Jason used to use some testimony as a springboard to make points/recommendations in the meeting.

 

[Otis]

regarding not getting message from "don't call it ME" emails, judging by the ones I have seen, it's possible the message could need to be articulated more clearly if Nancy Lee was mistaken in how she interpreted them.

I would recommend focusing on the definition as key, and mentioning the name as related to that and as an "also vital".

It's not helpful to me to focus on ME versus CFS, because there is no real entity that is CFS. Oxford-CFS is a catch-all for patients no one wants to bother with, including ME and a whole lot of others (missed cases of Lupus, MS, MDD, rare diseases, etc.). Reeves Disease was specifically designed to catch a lot of primary depression (without necessarily having any fatigue, weakness, physical debility, etc. - indeed they don't even have to have a disease of depression, some transient emotional troubles will do). And Fukuda-CFS is a really bad attempt, conflating Mono with their population of ME, and being too vague, and still catches a lot of misdiagnosed other diseases.

These are subtleties that I don't think a bureaucrat will understand so they shouldn't try.

 

[CJB]

After some time to reflect, I think maybe one of the more important things for me was the time the agency reps took in explaining process. There were rules about everything including who could gain access to the building in which the meeting was held. Since 9/11, security has tightened everywhere.

At the time I resented the speakers for taking up the time in that way, but it sparked a conversation about other diseases that have gained funding, physician and public education, research, drug trials, etc. A very pointed question was asked about AIDS and which avenues were used to speed up the process of developing tests and treatments. Nobody knew, but guessed it happened because people were dying and it was infectious. I think the post that jspotila is preparing will have some insight.

They also commented that other diseases had specialty associations like American Academy of Rheumatologists for instance (I'm not sure if that's the actual name) for Fibromyalgia. They promote physician education, research, etc. Does anyone know if Gulf War Syndrome has a specialty association?

This advisory council is only one entity to which we can appeal here in the US. I wouldn't despair at the plodding nature of the meeting. There are some very hopeful things going on and bureaucracy almost always has a plodding quality to it.

Thank you everyone who attended, testified, and helped in preparation or otherwise assisted with the testimony. Probably everyone who testified is paying their dues which is what the committee members won't see. Big hugs and rest up.

And thanks for this thread. I've read some really thoughtful and thought-provoking posts.

ETA: This forum has real power. Cort made a very compelling case for what we can do as a community.

 

[Hope123]

Thanks to everyone who watched, listened, testified, or sent in testimony!

Here is what I have learned over time that might shed some light on why things are partly the way they are:

1) Officio members serve for a few years; often it takes them time to learn about ME/CFS and the process so that they actually have less time than their term to influence things

2) The gov't announces when CFSAC members end their term and people can apply to be a member. There have been some knowledgeable people who have applied in the past but for whatever reason, were not picked. I don't know what we can do about this. If people feel CFSAC isn't working well, I encourage them to try to apply. Having a spot at the table is better than having NO spot.

3) CFSAC members are bound by strict federal rules which limit what they can say or do. Some of these rules seem unreasonable to me but these are federal rules that apply to other advisory committees as well and changing the rules might be difficult. Google "FACA" to learn about the rules.

Having worked in large organizations, one things I learned is that if you know the rules in place, you can learn to use those rules to get what you want sometimes. Higher-ups sometimes use people's poor knowledge of the rules to block subordinates from getting what they want/ need.

4) Subcommittee members do meet between the two meetings but federal rules dictate that for decisions to be made the whole committee must meet in public or with public oversight of some type.