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Time Change Equals Jet Lag, ME/CFS Style
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CFSAC - Do only 200 people in the world care about CFS?

Discussion in 'Action Alerts and Advocacy' started by Hope123, Jun 8, 2012.

  1. Dolphin

    Dolphin Senior Member

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    I presume the sound you're hearing isn't the sound from this page: http://forums.phoenixrising.me/index.php?pages/CoveritLive2/ ?
  2. urbantravels

    urbantravels disjecta membra

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

    urbantravels disjecta membra

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    Dolphin, you diagnosed my problem within seconds of my figuring it out myself. Derp derp derp.

    Sorry, rough night.
    Dolphin likes this.
  4. Cort

    Cort Phoenix Rising Founder

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    I think they are trying hard but if you heard Jennie Spotila's testimony you realize they have accomplished disappointingly little....her testimony was a real eye-opener. The committee passes recommendations up and apparently not many have been acted on...

    Otis I fully agree (now, if I didn't before) more organization is really needed....
    WillowJ and George like this.
  5. Cort

    Cort Phoenix Rising Founder

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    I think they are trying hard but if you heard Jennie Spotila's testimony you realize they have accomplished disappointingly little....her testimony was a real eye-opener. The committee passes recommendations up and apparently not many have been acted on...

    Otis I fully agree (now, if I didn't before) more organization is really needed....
  6. shannah

    shannah Senior Member

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    Yes Cort, Jennie's testimony was pointed wasn't it - and I thought perfectly placed right after Matthew's. A climactic ending to the morning session.

    Hopefully the words were also powerful motivators to the committee members breaking for lunch. Both of these people spoke clearly and concisely and in a most respectful manner. Their words needed to be heard. Hats off to them!
    Dolphin likes this.
  7. Otis

    Otis Señor Mumbler

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    Sasha - thanks for your clarification - we do agree more than we disagree. Being an engineer I have to trot out some analysis now and again. :) As I mention later in this post, I was pretty much driven from being able to follow the conversation today but participating as much as possible is definitely valid in my book.

    I hear you WillowJ. As long as the intent is to convey actual participation, I totally support it.

    I'll tell what just about drove me to mute the sound and not pay attention today was the person who was whacking away at the keyboard right next to an open mic. It was much louder than anyone speaking and because I've lost the ability to filter different sounds (is there anything ME doesn't destroy?) such that it all is mixed up in one horrible cacophony (like a 5th grade band concert!) and I couldn't really follow the conversation. AHHHHHHHH.

    It used to be the close-captioning that drove me nuts - the visual overload was just too much. I finally just moved the window to the bottom of the screen where the horrifying white letters weren't visible. That's not a slight against the hearing-impaired (and I hope people have a way to get it if they need it) but I think many of us were probably feeling nauseous watching those words scrolling by.

    Anyway, I hope everyone had a good CFSAC.

    Otis
    Sasha likes this.
  8. Dolphin

    Dolphin Senior Member

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    Any chance you're referring to what urbantravels referred to a few posts above?
  9. Otis

    Otis Señor Mumbler

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    Well, it could have been the CoverItLive page but it seemed to stop when a specific male voice was speaking but that could have been a coincidence. This week has taken a huge physical toll which has definitely drug my brain down with it.
  10. Otis

    Otis Señor Mumbler

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    And true leadership has to emerge! The committee over the years has passively accepted that they have no real authority and that change is a long and hard process - but it doesn't have to be. It takes strong leadership, guts, determination and the willingness to take a stand even it it offends some people. Consensus on the scale they want to achieve will never happen.

    I missed Jennie's testimony but I'll definitely go back to catch the replay. In part of my lost post I talked about the fact that the committee has to demand the time and resources (e.g. $) they need. I recall a CFSAC where Wanda was telling the committee that there was less money and that they're have to go down to two two-days meetings a year. You would have though she said there's not a budget for milk and cookies anymore. There should have been screaming and shouting. Instead there was some meek discussion about using Skype more. When Koh and others offer to help they should be called out and asked about the diminishing resources and lack of action on recommendations right then and there. Stand on the damn desks and show some backbone. Captain my Captain! :)

    And it's patently obvious that nothing of consequence happens between meetings which is absolutely a travesty and is directly harmful to patients because it impedes progress. One of the few meaningful things Nancy Lee (boy did she miss the point about the "don't call it ME" emails) tried to do was get some movement in the subcommittees. I'm not holding my breath.

    Sigh. :ill:
    WillowJ likes this.
  11. shannah

    shannah Senior Member

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    Otis said
    "One of the few meaningful things Nancy Lee (boy did she miss the point about the "don't call it ME" emails) tried to do was get some movement in the subcommittees. I'm not holding my breath.

    Sigh. :ill:


    Re Nancy's remark - You caught that one too Otis? I went back over it a few times cause I thought I had heard it backwards! It'd be hilarious if it wasn't so painful.

    Far too many transitions in the committee over the last 9 months or so. Loses continuity and any forward momentum.
    WillowJ likes this.
  12. Dolphin

    Dolphin Senior Member

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  13. urbantravels

    urbantravels disjecta membra

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    Serious, non-snarkily meant questions about CFSAC:

    Is it empowered to actually *do* anything?

    Do these meetings convey any NEW information to anyone who does not already have it, and/or to anyone who IS empowered to actually make decisions?
  14. urbantravels

    urbantravels disjecta membra

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    When I went back to the CoveritLive page, which I had open in another tab, and closed it, the loud typing noise stopped in mid-clatter, which was pretty convincing to me. Before that it had been intermittent; I think it's just keyed to how quickly the tweets are coming in.

    The typing noise is evidently meant to convey the excitement! Of having new information come in! Like as if there were Teletypes going in the room! (Which in addition to being annoying, is weirdly anachronistic.) I did figure out later how to mute the sound, but it was a tiny, tiny button that was hard to find.
    WillowJ likes this.
  15. SOC

    SOC Back to work (easy, part-time work)

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    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.
  16. WillowJ

    WillowJ Senior Member

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    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]
  17. WillowJ

    WillowJ Senior Member

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    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.
    Otis likes this.
  18. WillowJ

    WillowJ Senior Member

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    Fukuda is a really bad attempt at a serious definition, that is.
    Oxford and 'Empiric' are not even attempts at serious definitions (they don't even attempt to distinguish anything from much anything else, so colossal fail at being a definition or diagnosis)
    SOC and Dolphin like this.
  19. Dolphin

    Dolphin Senior Member

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    Just a point of info: in the 1990s up till around 2001 (?) it was the CFSCC - the CFS Cordinating Committee. I think that meant it had more power. I didn't follow US CFS politics that much then so don't know how different it was.
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  20. alex3619

    alex3619 Senior Member

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    Hi Willow, I see Fukuda as an attempt for an interim research case definition that was supposed to change and evolve. Instead it became enshrined in the bureaucracy and then the standard, even for clinical use. This was a distortion of its intent. The failure to advance the definition I would argue is due to lack of official interest, lack of funding, and failure of the CDC to properly engage in biomedical research. That last failure is probably a result of the growing influence of psychobabble.

    The Oxford and Reeves definitions appear to be agenda driven. That agenda I call the Dysfunctional Belief Model for the Oxford definition, and probably the Reeves definition too, though other things may have been involved there, I do not know enough about the details to be sure.

    I have a real problem with science that is ideologically driven rather than data and reason driven. It leads to distortions, bad science, and scientific cults. This is quite different from problems with bad data, though the poor methodologies which tend to be embraced by ideologically driven science frequently produce data of dubious value.

    Bye, Alex
    WillowJ likes this.

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