Dr Vernon's webinar Thursday 18th at 2 pm EST
- Thread starter Countrygirl
- Start date
R
Robin
Guest
Thanks! I missed a LOT but hopefully they will have a full presentation on the CAA website so people can go fill in the gaps.
EDIT postscript: research is funded by patient donations! So give big $$$ to their research program. (that biobank sounds awesome!)
calzy
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Many thanks Robin for sharing your little bit of energy with us.
MJ
MJ
Abraxas
Senior Member
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Thanks very much Robin :Retro smile:
R
Robin
Guest
My pleasure!
Cort
Phoenix Rising Founder
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Great job Robin - I got in after 45 minutes, very professionally done - very exciting research - it helped having it being explained.
Two potential problems getting in; you need to update Java or if you have Vista you need to go to your Control Panel Click on User Accounts and Turn Your User Account Control Off
The person at the company said this applies to all people with Vista- which makes it incredible to me that they don't mention this up front.
Two potential problems getting in; you need to update Java or if you have Vista you need to go to your Control Panel Click on User Accounts and Turn Your User Account Control Off
The person at the company said this applies to all people with Vista- which makes it incredible to me that they don't mention this up front.
Dr. Vernon described some great work and from what she said, it is entirely funded by donations (and other CAA funds). This is the type of collaborative work that is going to lead to answers. In the past I've been reticent to donate to the CAA because of the messages the CAA has sent to physicians (not a huge fan of retaining the term CBT and GET is only appropriate for a subgroup and even then, it can be harmful if not done carefully and correctly).
I asked if it was possible to specify that a donation could go directly to the research program (at least until my other concerns are addressed - I hope this sends a message as to how strongly I feel about those other concerns - I suspect that I am not alone). I am fortunate in that I am in a position to donate yet I have hesitated to give it to the CAA. Does anyone if a directed donation is possible?
I asked if it was possible to specify that a donation could go directly to the research program (at least until my other concerns are addressed - I hope this sends a message as to how strongly I feel about those other concerns - I suspect that I am not alone). I am fortunate in that I am in a position to donate yet I have hesitated to give it to the CAA. Does anyone if a directed donation is possible?
Cort
Phoenix Rising Founder
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Absolutely, the CAA has a section on their donate page that allows you to target your donation.
For me its not only the science - which is very exciting - but the fact that these groups are talking to each other and working together intimately with each and incorporating each others results into their studies early on - that is so encouraging. Nobody does that kind of stuff - its never been done before in an explicit fashion with CFS research - and it should speed things up considerably. Dr. Vernon has put together a very innovative research program.
For me its not only the science - which is very exciting - but the fact that these groups are talking to each other and working together intimately with each and incorporating each others results into their studies early on - that is so encouraging. Nobody does that kind of stuff - its never been done before in an explicit fashion with CFS research - and it should speed things up considerably. Dr. Vernon has put together a very innovative research program.
Cort
Phoenix Rising Founder
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I don't see it either! There was one somewhere .....
Its not there anymore. That's too bad. I would note that the CAA engages in many activities - that while they may fall short in one area that they play important roles in others; I would cite their work digging up the financial misconduct at the CDC - that very well may have paved the way for Dr. Reeves dismissal, their new physician education program put together by Dr. Bateman and Dr.Lapp (I can't imagine it emphasizes CBT), and, of course, this research, the Biobank and the Research Network they're building.
I actually specifically contribute to their general fund monthly because I was afraid too many people were just targeting research and this would leave the organization floundering in other areas.
Its not there anymore. That's too bad. I would note that the CAA engages in many activities - that while they may fall short in one area that they play important roles in others; I would cite their work digging up the financial misconduct at the CDC - that very well may have paved the way for Dr. Reeves dismissal, their new physician education program put together by Dr. Bateman and Dr.Lapp (I can't imagine it emphasizes CBT), and, of course, this research, the Biobank and the Research Network they're building.
I actually specifically contribute to their general fund monthly because I was afraid too many people were just targeting research and this would leave the organization floundering in other areas.
K
_Kim_
Guest
I am very upset that they posted everyone's name and if you hovered, you could see email addresses as well. I sent a message to Kim M. and she said they would work on that for the next one, but they couldn't do anything about today's broadcast.
Shane, tee, Robin, fds, Kati....and many more of you: I could identify you. :Retro mad:
Not cool!
Shane, tee, Robin, fds, Kati....and many more of you: I could identify you. :Retro mad:
Not cool!
I thought the presentation was a good illustration of the new directions at CAA since 2008. Finally someone understands how to apply a 'systems biology' viewpoint to address the multi-systemic complexity of CFS!
Every study seems important, like they have narrowed to focus to studies they know can find something, no prospecting here, these are bread and butter efforts that should change the face of CFS diagnostics. One annoyance, everyone keeps talking about biomarkers, what is up with that? I just can't fathom why this myth persists that there is some great need for biomarkers for CFS. We have abundant biomarkers, have had some for over 20 years. What we need is good differential diagnostics. This was about research into better diagnostics, in my view. Some of these studies may also help with subset determination, as Dr Vernon mentioned near the end. Also, every study seems posed to reveal something new about CFS. The CAA is getting a lot of value for their investment here. Impressive. This is what we need, and a lot more of this type of effort.
Listening to this I could sense more than ever the reality of CFS as a complex multi-systemic disease with a profile as real as any other disease out there. A real class act, particularly the final study, a database of all CFS research, it is about time!
Every study seems important, like they have narrowed to focus to studies they know can find something, no prospecting here, these are bread and butter efforts that should change the face of CFS diagnostics. One annoyance, everyone keeps talking about biomarkers, what is up with that? I just can't fathom why this myth persists that there is some great need for biomarkers for CFS. We have abundant biomarkers, have had some for over 20 years. What we need is good differential diagnostics. This was about research into better diagnostics, in my view. Some of these studies may also help with subset determination, as Dr Vernon mentioned near the end. Also, every study seems posed to reveal something new about CFS. The CAA is getting a lot of value for their investment here. Impressive. This is what we need, and a lot more of this type of effort.
Listening to this I could sense more than ever the reality of CFS as a complex multi-systemic disease with a profile as real as any other disease out there. A real class act, particularly the final study, a database of all CFS research, it is about time!
Kim,
I had the same concern. I'm glad you said something (and you are always welcome to look me up when you're in town or e-mail whenever you want).
As for my question about the directed donation, I just sent the CAA a copy of the question as I had worded it in post #49.
I had the same concern. I'm glad you said something (and you are always welcome to look me up when you're in town or e-mail whenever you want).
As for my question about the directed donation, I just sent the CAA a copy of the question as I had worded it in post #49.
Did anyone get a screengrab of the EBV graph? That one was fascinating for me since like many of you my CFS was triggered by EBV.
I think the graphs might have been mislabelled though because the "early recoverers" were still fatigued at the end of the interval where as the "late recoverers" were all at zero. Doesn't make sense otherwise.
I think the graphs might have been mislabelled though because the "early recoverers" were still fatigued at the end of the interval where as the "late recoverers" were all at zero. Doesn't make sense otherwise.
OverTheHills
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WOW I Just Loved the Webinar
Missed the first part (its early in the morning here).
It made me feel like an adult ( not like the usually-patronising, always useless doctor patient interaction). I know I love CONTROL (sooo un-Buddhist) and thats a big thing you lose with ME.
Before I had the forum I felt like almost nothing was happening that might help me one day. Kept in the dark and not even fed bulls**t. The forums give me a steady drip feed of information - good and bad - and as I result I mostly feel there will be a path out one day.
And Webinars like that treat me as a grown up, give me a close up on real stuff that shows real promise. I'm not driving the bus but I feel I'm on the bus.
From what I've read on these forums this organisation is improving and is not perfect but IMHO they are to be congratulated big time on doing this. WELL DONE:Sign Good one::Sign Good Job:
Missed the first part (its early in the morning here).
It made me feel like an adult ( not like the usually-patronising, always useless doctor patient interaction). I know I love CONTROL (sooo un-Buddhist) and thats a big thing you lose with ME.
Before I had the forum I felt like almost nothing was happening that might help me one day. Kept in the dark and not even fed bulls**t. The forums give me a steady drip feed of information - good and bad - and as I result I mostly feel there will be a path out one day.
And Webinars like that treat me as a grown up, give me a close up on real stuff that shows real promise. I'm not driving the bus but I feel I'm on the bus.
From what I've read on these forums this organisation is improving and is not perfect but IMHO they are to be congratulated big time on doing this. WELL DONE:Sign Good one:
:Sign Good Job:Kurt,
I agree that there are already a number of distinct markers (Dr. V. just went over a number of them). I also asked if this presentation was being shared with physicians. All the energy and wasted time fighting with docs when this could be the message they are getting from the CAA (not CBT and GET - at least not in their present incarnations - I say clarify these issues by killing them and starting anew)!
The CAA is doing some great work. They need to shout this from the roof tops and make this kind of effort the face of CFIDS Assoc and CFS.
I agree that there are already a number of distinct markers (Dr. V. just went over a number of them). I also asked if this presentation was being shared with physicians. All the energy and wasted time fighting with docs when this could be the message they are getting from the CAA (not CBT and GET - at least not in their present incarnations - I say clarify these issues by killing them and starting anew)!
The CAA is doing some great work. They need to shout this from the roof tops and make this kind of effort the face of CFIDS Assoc and CFS.
Hope123
Senior Member
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- 1,266
I am very upset that they posted everyone's name and if you hovered, you could see email addresses as well. I sent a message to Kim M. and she said they would work on that for the next one, but they couldn't do anything about today's broadcast.
Yeah, I sent them a message live and they responded this was a new and unexpected feature they couldn't do anything about at the moment. I then wrote back asking them to at least tell people next time their name might be visible to others.
I know someone with the means who donates regularly to CAA and this person specifically writes a note with their check saying to research only. But like Cort, I donate to the general fund also. (A reminder: you can donate a little monthly and end up donating a fair amount by the end of the year.)
The webinar and slides are suppose to be loaded up later on. I suspect on the CAA website and their channel on Youtube, SolveCFS.
Ha! We used to call this being treated like a mushroom.