Nielk
Senior Member
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Why are they so opposed to having only ME/CFS experts at the CCC/ICC meeting?
Because it would exclude them?
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Why are they so opposed to having only ME/CFS experts at the CCC/ICC meeting?
Am I the only one in pain watching this?
.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.
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
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!
Dr. Lee, the designated federal official, is overstepping her boundaries. It's ridiculous to NOT draw upon the experience of clinicians and scientists experienced with this illness to come up with an ME/CFS definitions. She's saying that the rest of the medical profession needs to come up with the definition.That would be like the blind leading the blind! Medical professionals who we know already aren't educated about ME/CFS and have a bias against it are going to come up with the case definition?!
As Dr. Fletcher points out, in HIV (and I would say lots of other diseases), experts come up with the initial definition and then people in the medical profession are educated about it. Meanwhile, the definition gets refined. Case definitions are not made by taking of a poll of everyone and her brother.
"It's for the good of the patients to keep a broad definition so none of them get left out." Blech.
Okay, who said that crap? The CDC reps, perhaps?
Somewhat paraphrased, Susan Maier from the NIH.
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?
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.