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Announcment - CDC’s CFS Patient-centered outreach and communication activity (PCOCA) Conference Call

Ember

Senior Member
Messages
2,115
I will say that having Jason speak is something reeves would not have done. But IMO that's just crumbs to mollify us.
I don't expect that he'll be posed Dr. Grobstein's question: “You are a researcher. Do you think your opinions of a clinical definition are more valid than a clinician's?”
 

Hope123

Senior Member
Messages
1,266
If anyone has a Skype account ($3/ month - cancel anytime) and dials in through that; the conversation can be recorded via any number of free Skype recorders, which can be found by Googling.
 

akrasia

Senior Member
Messages
215
I will say that having Jason speak is something reeves would not have done. But IMO that's just crumbs to mollify us.

Hi Justin,

As you probably know I have no respect for the way institutions of government have behaved towards us. But why would they care about mollifying us at this point?

Jason has written damning critiques of both the CDC program and the Empirical definition. This is the first time the CDC has publicly acknowledged that there is intelligent, credible opinion that directly contradicts their policies. They didn't have to throw us a sop.

My hunch, in light of the apparent movement of the FDA on ampligen and the project with the Open Medicine Institute, is that something is going on behind the scenes that is moving towards giving the disease legitimacy.

Sometimes, I think this view is too optimistic and I am not without some doubt. Still, that's my intuition.
 

Ember

Senior Member
Messages
2,115
This is the first time the CDC has publicly acknowledged that there is intelligent, credible opinion that directly contradicts their policies.
The CDC may be basing their working relationship with Dr. Jason on his more recent opinions. His group (Jason et al., 2012) has tried to operationalize the ME criteria from Ramsay (1988), the London criteria (National Task Force Report on CFS/PVFS/ME, 1994), the Nightingale criteria (Hyde, 2007) and the Goudsmit et al. criteria (2009): “Our research group feels that post-exertional malaise is a cardinal feature of ME; the definition recognizes post-exertional malaise as prolonged restoration of muscle power following either mental or physical exertion” (emphasis added).”

Dr. Jason observes, “It is important to note that PEM cannot be definitively established without the inclusion of the patients’ self-reported symptoms.” He expects to measure these using his new diagnostic: the DePaul Symptom Questionnaire (DSQ).
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
It's possible to buy digital recording devices that you plug into your phoneline that allow you to record phone calls yourself.
I have RecordiaPro. If I can get into the call, I'll try to record Lenny's portion at least.
If anyone has a Skype account ($3/ month - cancel anytime) and dials in through that; the conversation can be recorded via any number of free Skype recorders, which can be found by Googling.

I think there are legal implications to recording phone calls... it would have to be disclosed/consented?

oh, I think I figured it out. If one party (including you) consents, that's legal federally, and in Georgia, according to this website:

http://www.citmedialaw.org/legal-guide/recording-phone-calls-and-conversations
http://www.citmedialaw.org/legal-guide/georgia-recording-law
 

Dolphin

Senior Member
Messages
17,567
I think there are legal implications to recording phone calls... it would have to be disclosed/consented?

oh, I think I figured it out. If one party (including you) consents, that's legal federally, and in Georgia, according to this website:

http://www.citmedialaw.org/legal-guide/recording-phone-calls-and-conversations
http://www.citmedialaw.org/legal-guide/georgia-recording-law
Although (not speaking legally) I think there is quite a bit of difference between a call that is planned to be open to a reasonably sized group of relatively random people that is recorded, and many other situations.
 

Sing

Senior Member
Messages
1,782
Location
New England
I was impressed with this call, the amount of information included as well as the tone. I felt encouraged by the respect Dr. Unger seems to have for Dr. Jason, whose work focussing on clinical and research definitions to bring them into accuracy as well as uniformity, is so crucial. I felt encouraged by both her humbleness and Dr.Jason's positive manner.
 

Ember

Senior Member
Messages
2,115
Thanks, Sing. I'm glad that you were able to listen and that you felt good about the call. But you're one of the few to have enjoyed Dr. Unger's “patient-centered outreach and communication activity.” Why must patients report now on this communication from memory?