Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.
One of the funnier aspects of the videocast.......at one point, the blue screen was playing techno!
I just got viral test results back from Dr. Rey (Klimas' partner), and the tests distinguish between old and active positive results. The doctors are right that most people test positive.......but not for current activation.
jimells or others waiting for disability hearing like myself - have you looked at this site? http://ssdfacts.com/
It's very helpful in estimating when your case will come up for a hearing, you can search by state and then city.
Also contains interesting statistics including favorability rates per judge.
Unfortunately, like others have mentioned, as soon as I get close to my estimated wait time, I go to this site and notice that they have extended the wait again. At least now I understand the reasons a bit more.
Regarding: Massachusetts CFIDS ME Assn? Alan Gerwit? Gewirtz? The first CFS primer was in 1992?! I learn something new all the time. There was also a comment on "The toxic psychobabble fog that has stifled research for over 25 years ...? " Did I get that right? He comments on misinformation and lack of will to correct misinformation.
The New PANDORA has an advocate training program.
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.
On a lighter note - what are those purple "bracelets" they are all wearing?
I agree 100%. And I'm so glad some of the committee members are INSISTING on making a recommendation based on what CCC/ICC experts already created and approved of.
Delay, delay, delay ... talk, talk, talk. Mary Anne Fletcher was right when she asked why they are so opposed to making progress in this.
"It's for the good of the patients to keep a broad definition so none of them get left out." Blech.
This is a meeting....to invite more meetings....for more meetings..for????????????????????
The repeated government insistence on a definition for "American patients" is mind boggling. Do they think the CCC only applies to Canadians and that we have a different version of the disease?
Thank god for Steve Krafchick the lawyer and Mary Anne Fletcher! This is what happens when you have only a few experts at the table and the rest are of dubious or little experience. Read Jennie Spotila's blog:
I would not want to trust my future on this group.
"So, you're a random doctor. Based on diagnoses of CFS you've made (based on our CDC definition), how would you define CFS? And then we'll consider redefining CFS based on what you and other clueless doctors think it is!"
The CDC/NIH ones are either a bunch of gibbering idiots or they're very clever at finding ways to make no progress.
Am I the only one in pain watching this?
Why are they so opposed to having only ME/CFS experts at the CCC/ICC meeting?
After seeing the recent testimonies, I think we need hit the CDC at every meeting. They have not conducted themselves with professionalism, and we need to point this out again and again and again.
I get the feeling that Susan Maier hates CFS patients for existing She seems so reluctant to do anything.
You can also try a Google Site Search
Separate names with a comma.