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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. Nielk

    Nielk

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    Because it would exclude them?
    BEG and SpecialK82 like this.
  2. Nielk

    Nielk

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    There's no case definition because there are no biomarkers.

    They can't study biomarkers because there's no accepted case definition.
    leela, Valentijn and elbosque like this.
  3. snowathlete

    snowathlete

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    When I used to work, I was responsible for change/progression/improvement within a big organization.
    I chaired washup meetings after huge projects that played out over years and multiple locations around the globe. I took on this role from someone else and looked at previous washup data. Basically, what i found was there was lots of talk, some good, some bad and some actions that came out of it, but there was just too much going on. Not enough focus. Not enough genuine change.
    I wonder if that is the case here a bit? There are so many subjects coming up, all good, but still, so many.

    At work, In the end I changed the format. I told people that even though they had alot to say, lots of complaints and so on, they could each only bring one topic to the table. I also said that at the end of three meetings about it we would pick two things only to change. But that we would absolutely completely fix those two things. Nail them. There was some resistance, but I forced it forward. Come the next washup everyone was on board, because they saw it work. The two things from the last washup did get fixed, it was hard work to do it, but because everyone was focused those two things got done really really well. Then we moved on to the next two things next time. Over several years things really did improve significantly.
    I wonder if there would be some kind of opportunity here to get people to agree to focus more heavily in one or two areas and that might bring more definate, quicker results?
    justy, BEG, SOC and 2 others like this.
  4. Hope123

    Hope123 Senior Member

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    Yes, it's painful and even more so that they didn't allow Mary Dimmock to talk as a patient rep other than Eileen H. What happened to Nancy Lee's 'Nothing about us without us'? Boy, she has a short memory!

    I don't know yet what we can do but a clear message needs to be sent by the patient community that we will not tolerate a return to the Dark Ages through CFSAC. I'm voting for Obama for many reasons but if he gets elected, we need to reach out to the President on this since he specifically asked his Deputy Chief of Staff to watch ME/CFS.

    Eileen H. (patient advocate on CFSAC) barely got 5 people to outvote Dr. Marshall to put "ME/CFS experts" instead of plain "experts." Why would they not want experts? Hubris, bias, prejudice, inability to look at evidence objectively, fear of being a leader, fear of losing future NIH grants, inability to say "I don't know", etc. -- take your pick. Bottom line -- they want to preserve the status quo and not find real solutions.

    And they wonder why people with ME/CFS contemplate suicide! The nerve................................
    SOC, Sing and Valentijn like this.
  5. Valentijn

    Valentijn Activity Level: 3

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    The researchers seem pretty united in what they want. It is the CDC and NIH representatives that are consistently obstructing them in certain areas.
  6. urbantravels

    urbantravels disjecta membra

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    I can't help wondering if there are any other diseases where *lack* of expertise is seemingly so valued.

    People who are completely ignorant about it are sometimes proud of their ignorance - "there's nothing to know because it's a bogus disease, I'm glad I don't fall for that nonsense!"

    People who *should* know more about it owing to their professional obligations - doctors, health administrators - but don't have much knowledge and never seek to expand their knowledge, often don't see this as a problem. The underlying implication is that it's OK to know little or nothing because there's really nothing *to* know.

    Am I out of my blinking mind, or are there people sitting on this panel who apparently think that expert opinion is worth *less* than uninformed opinion? Because experts are biased by...knowing stuff??
    leela, SOC, Sing and 2 others like this.
  7. Valentijn

    Valentijn Activity Level: 3

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    I think the reasoning was that because we don't have a medical course of study/specialty in ME/CFS, there are no experts. Or something. Yes, more bullshit.
  8. alex3619

    alex3619 Senior Member

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    It was repeatedly dismissed that the bulk of medical professionals know nothing about CFS. I think that is a fair claim, but its misleading. The bulk of professionals have limited knowledge, which is mostly out of date, and often quite wrong. Its a minority of medical professionals who are up to date, largely because they have a reason to stay up to date on ME or CFS or similar illnesses.

    What concerns me most is not doctors who do not know much about CFS. Its the doctors who think they know about CFS, but whose ideas are based on obsolete science, disproved hypotheses, and hypotheses masquerading as solid theories, who worry me the most.These practitioners have the potential to derail an advance (such as through a stakeholder meeting), though it is more likely that they may slow the advance rather than stop it.

    Bye, Alex
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  9. SpecialK82

    SpecialK82 Senior Member

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    Unfortunately, I missed the last two hours, just heard them arguing about setting a meeting with all the stakeholders to decide if CCC sounded like a good definition. Did that idea pass? Or did it have to go for a recommendation? I love Steve K, thank God he kept pushing the point - Let's Move Forward People!

    One concept that was startling to me, was that Sebilious doesn't have the final say in implementing an idea because each of the agencies have some autonomy ---- What?

    So not only do we need to put pressure on her office, but also on the rest of the alphabet soup!
  10. Hope123

    Hope123 Senior Member

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    True, as embodied by the statement "A little knowledge is a dangerous thing."

    Also, there are studies showing that the most incompetent people are the ones who THINK they know everything and can''t recognize their own incompetence. The ones who don't know anything and are honest with themselves do less harm.
  11. Hope123

    Hope123 Senior Member

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    Yeah, that was an interesting exchange. So CFSAC's June recommendation to remove the Toolkit was shot down, it seems, by CDC, even though it might have gone to the Secretary. Well, at least we got our feedback and know better whose obstructing what.
  12. madietodd

    madietodd Senior Member

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    Could we do better? I mean this as a serious question. I'm having a vision of us crowd-sourcing somehow. I'm sorry that my brain doesn't retain information, so I'm forced to talk in generalities. But there are a number of excellent ME and CFS organizations, which are producing quality written material - about diagnostic criteria, current research, good doctors, treatment protocols, etc. What if the best ones pooled information into a meta-website, structured from the get-go as the ME and CFS gateway for information.

    It wouldn't be a place for argument or discussion. It would be a repository for what we all DO agree on.

    Madie
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  13. urbantravels

    urbantravels disjecta membra

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    http://en.wikipedia.org/wiki/Dunning–Kruger_effect

    The Dunning–Kruger effect is a cognitive bias in which unskilled individuals suffer from illusory superiority, mistakenly rating their ability much higher than average. This bias is attributed to a metacognitive inability of the unskilled to recognize their mistakes.[1]
    Actual competence may weaken self-confidence, as competent individuals may falsely assume that others have an equivalent understanding. As Kruger and Dunning conclude, "the miscalibration of the incompetent stems from an error about the self, whereas the miscalibration of the highly competent stems from an error about others" (p. 1127)
    caledonia, leela, SpecialK82 and 2 others like this.
  14. SOC

    SOC Moderator and Senior Member

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    I thought during the June meeting, and my thinking is confirmed at this meeting, that Dr Lee seems completely unaware that we don't fall under one of her expected fields of medicine -- rheumatology, cardiology, etc -- which shows a shocking lack of understanding of the complexity and status in the medical world of the illness for someone in her position on the committee. We need to make it clear to her that there are no local doctors willing or able to treat us. That's a large part of our day-to-day living problem. Our very few experienced specialists are all we have.
  15. SOC

    SOC Moderator and Senior Member

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    Okay, who said that crap? The CDC reps, perhaps?
  16. Valentijn

    Valentijn Activity Level: 3

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    Somewhat paraphrased, Susan Maier from the NIH.
  17. SOC

    SOC Moderator and Senior Member

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    Does the woman have no clue about the history of the illness?

    To be fair, what I saw at the meeting seemed like she cares about people, she's just so clueless about ME/CFS. Or am I thinking of the wrong person?
  18. Valentijn

    Valentijn Activity Level: 3

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    She's the plump one with short hair that looked like she wanted to stab everyone that disagreed with her about anything. Generally looked bored or exasperated. She was one of the worst offenders regarding circular reasoning.
    Nielk likes this.
  19. SOC

    SOC Moderator and Senior Member

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    Some thoughts coming from my experience as a former federal employee --
    There are innumerable committees (and similar structures) needed to try to correlate the work of our massive country's multitudinous organizations. It's the nature of the beast.

    There are always some committees whose work (for whatever reason) is considered less critical (or more do-nothing) than others. Those committees are used as trainee committees -- places to send your least experienced people to get them into the swing of how committees like this work. They are usually run by the less capable people in the organizing office. This has it's advantages... unless you're one of the people who really needs the committee to do something.

    My theory is that CFSAC has been viewed as a training-wheels committee for as long as it existed. None of the organizations is taking it seriously and none are sending their better people to represent them. That may have changed recently re the CDC since they've taken some flack from the committee over the past couple of years. Now they send some people whose job it is to defend the CDC, not forward the interdepartmental communication about ME/CFS.

    These are not people who are movers and shakers (yet). They're getting experience under their belts to go on to bigger and better things. Rocking the boat is probably not on their personal agenda. ;)

    Dr Lee, imo, runs a very poor committee -- little structure, planning, goal-setting, preparation, or accomplishments. Dr Marshall seems to be taking the whole thing more seriously based I what I saw yesterday.

    I suspect that what we really need to do is to push the organizations themselves to see this committee as more important. We need them to require more from the people they send, and to send more effective people.

    If we go on as we are, with the type of people the gov't agencies are sending, we'll swirl around in this backwater of the HHS forever, going round and round and getting nowhere.
    caledonia, snowathlete, BEG and 2 others like this.
  20. Hope123

    Hope123 Senior Member

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    Yes, it's been discussed that as soon as the very competent Dr. Wanda Jones started to become more interested in patients, she gets a promotion. And Dr. Dennis Mangan who ran the NIH group prior - also interested in patients -- he retired.

    An interesting remark, I believe from Dr. Lee, was that government physicians don't practice medicine. While that's not entirely true -- some, like the National Health Service Corps physicians, do -- that statement is nothing to brag about either. Maybe that explains why the views expressed are so odd sometimes. If someone is not a living, breathing suffering human being in front of you asking for help but a number to be checked off or fitted in a category (e.g. a subspecialty), you don't treat them with the care you do a person.
    SOC likes this.

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