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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFSAC meeting Oct 3-4, 2012

maddietod

Senior Member
Messages
2,859
After hounding the doctors for over two years, I did finally have a tilt table test: it was 'normal', but it was done by cardiac people, who were mostly looking for heart problems, which I don't have. So far I haven't been able to test viral titers. The doctors just say, "Almost everybody tests positive for those viruses". I'm slogging through the ICC Primer. If it says something about viral titers, maybe that would help my argument.
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.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

Hope123

Senior Member
Messages
1,266
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.
 

Nielk

Senior Member
Messages
6,970
On a lighter note - what are those purple "bracelets" they are all wearing?
 
Messages
15,786
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?!

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.
 
Messages
15,786
"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!" :confused:
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
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.