Suzanne Vernon Speaking in Colorado--Any Questions You Want to Ask?

[Mya Symons]

My husband and I are going to try very hard to drive down to Colorado and listen to her talk. Does anyone have something they want us to ask Suzanne Vernon? If so, let me know, and we will try to ask her after her speech.



Rocky Mountain CFIDS/FMS Association
October 9, 2010

Reminder:


We have Dr. Suzanne Vernon scheduled on Saturday October 16, 2010, 1-3 PM, in Heitler Hall at National Jewish Health (1400 Jackson Street in Denver; on the SW corner of Colorado and Colfax).

Dr. Vernon is the the Scientific Director of the CFIDS Association of America (the national advocacy group for CFS). She will provide an Update on CFS Research, including recent developments related toXMRV and MLVs.

For more information, see our event page (www.rmcfa.org/event.html) on our web site (www.rmcfa.org), or the prior e-mail (www.rmcfa.org/2010_09_Oct_Event.html) announcing the event.



Best regards,

Tim Smith
Rocky Mountain CFIDS/FMS Association

 

[Sing]

Mya, will there be a recording? Or would you take notes to share?

Thank you!

Sing

 

[xrayspex]

Mya, excellent, yes thanks for the offer, one thing I want to clear up as soon as possible, as I am just learning more about the options for advocacy for cfs/me lately, is whether CAA still has online the CMEs called SPARK! which stands for Continuing Medical Education for our doctors. I heard it had a picture of Peter White in their learning materials and quotes his beliefs that CFS/ ME is psychological and the CME's also teach our doctors to use CBT and GET as therapies for CFS/ME.

Could you please ask her if that is the case or was the case and if so when they could get that removed? I have given to CAA in the past but had no idea that was on their site and want to do whatever I can to support them to get that removed, if they still have that info up please ask her then what we should do to replace with more appropriate medical information.

 

[jspotila]

Mya, excellent, yes thanks for the offer, one thing I want to clear up as soon as possible, as I am just learning more about the options for advocacy for cfs/me lately, is whether CAA still has online the CMEs called SPARK! which stands for Continuing Medical Education for our doctors. I heard it had a picture of Peter White in their learning materials and quotes his beliefs that CFS/ ME is psychological and the CME's also teach our doctors to use CBT and GET as therapies for CFS/ME.

Could you please ask her if that is the case or was the case and if so when they could get that removed? I have given to CAA in the past but had no idea that was on their site and want to do whatever I can to support them to get that removed, if they still have that info up please ask her then what we should do to replace with more appropriate medical information.

The Spark site is still up, but I don't see links to either the CDC Tool Kit for healthcare professionals or the Clinical Care article that included sidebars from Dr. White (and Dr. Peterson and other respected clinicians). The contract with CDC was finished earlier this year. The Association developed an accredited CME on CFS with Medscape in 2009, after the CDC provider education contract ended (we chose to end it because of CDC wanted to emphasize the psychosocial framework). The Association does not teach doctors to use CBT and GET as treatments for CFS.

Hope this helps!

 

[xrayspex]

Jen--that helps a lot, thanks, I have been trying to educate myself on who is doing what, so relieved to hear that
peace
x

 

[urbantravels]

My Mom is probably going to go to this meeting. She lives in Denver and is always full of questions about CFS. Always happy to direct her to a good source of info so I can take a little break from trying to answer all the questions myself. :sofa:

 

[Mya Symons]

Mya, will there be a recording? Or would you take notes to share?

Thank you!

Sing

O.K. I will take notes and ask her if I can record her. I think I will go get a microphone for my ipod touch and digitally record the talk so I will have a copy to put on the computer (if I am allowed to record).

xrayspex, the other question about the CAA, SPARKS and the CAA having links to GET and CBT therapy including continueing education for doctors has been answered already, correct? Or is there something else you wanted asked?

 

[xrayspex]

s. vernon presentation

xrayspex, the other question about the CAA, SPARKS and the CAA having links to GET and CBT therapy including continueing education for doctors has been answered already, correct? Or is there something else you wanted asked?[/QUOTE]

Mya thanks for asking, think I am ok for now, need to ponder but will get back to you if have further questions to pose.

What sort of questions do you have?

 

[Mya Symons]

Mya thanks for asking, think I am ok for now, need to ponder but will get back to you if have further questions to pose.

What sort of questions do you have?

I am not sure yet. I don't really know much about the CFIDS Organization of America or Dr. Vernon. If I have time and energy, I plan to read more about Dr. Vernon and her thoughts on XMRV. Maybe I can come up with a good question or two after she gives her information?:\

 

[Otis]

Hi Mya,

I would ask if the CAA supports yesterday's CSFAC recommendation to change the name to ME/CFS. I would also like to know where there are planning to spend their 2010 research monies.

Thanks,
Otis

 

[omerbasket]

Mya, there is one thing I'd like you to ask her: Is the CAA currently performing/about to perform a replication study to the WPI study? And if not - and considering the facts that reproducibility is a main principle of science and that we already have enough studies that did not try to replicate the first one and none that did try to replicate it - why don't they do a replication study?

 

[Cort]

I don't know if they are; all I can say is that Kim McCleary clapped vigorously when it was suggested - so maybe there is some movement there.

 

[Cort]

Mya, there is one thing I'd like you to ask her: Is the CAA currently performing/about to perform a replication study to the WPI study? And if not - and considering the facts that reproducibility is a main principle of science and that we already have enough studies that did not try to replicate the first one and none that did try to replicate it - why don't they do a replication study?

I asked Kim about that at the CFSAC meeting; Glaxo Smith Kline is analyzing the samples - they are culturing the virus and Kim said they were in close touch with Dr. Mikovits about her methods. It sounded to me like they were replicating the study and adding stuff to it. GSK would certainly love to find that virus. We'll have to see the specifics when the study comes out.

 

[mojoey]

Hey Cort,

Did you get a chance to ask Kim about her position on the name change?

Great to hear GSK is getting on the ball. I think the blood working group study will be the main catalyst. GSK and other companies don't wanna pour a bunch of R&D into a highly uncertain outcome and would much rather let govt funds hash things out. But once they get the greenlight from NIH the clinical trials are gonna come fast.

 

[jspotila]

Did you get a chance to ask Kim about her position on the name change?

The Board has authority to set policy re: the name change for the Association. The Board is aware of the CFSAC motion passed on Thursday, and I am assuming it will be on the agenda for discussion at our next meeting.

 

[mojoey]

The Board has authority to set policy re: the name change for the Association. The Board is aware of the CFSAC motion passed on Thursday, and I am assuming it will be on the agenda for discussion at our next meeting.

Thanks. Board meeting aside, I wanted to know if Cort asked the CEO about her position on the name change.

 

[omerbasket]

I asked Kim about that at the CFSAC meeting; Glaxo Smith Kline is analyzing the samples - they are culturing the virus and Kim said they were in close touch with Dr. Mikovits about her methods. It sounded to me like they were replicating the study and adding stuff to it. GSK would certainly love to find that virus. We'll have to see the specifics when the study comes out.

I would still love to here an aswer for my question, since it doesn't seem reasonable that the CFIDS would not fund even one replication study about such a great matter.

Anyway, I really wonder what's happening with that GlaxoSmithKline study - first of all, ofcourse, when is it going to be published (or at least when the results would be published), and second of all - how many patients are they testing, and of which diseases (it would seem to me that if GSK find the virus in ME/CFS patients, they would probably have a real interest in looking for it in fibromyalgia, gulf war syndrome, MS, autism, cancercs, etc. I mean, it seems logical to me that they will look for it at least in one or two more diseases - becuase that might cause the profit to get even higher).

 

[jspotila]

Thanks. Board meeting aside, I wanted to know if Cort asked the CEO about her position on the name change.

Her position is that it is up to the Board. The Board will certainly ask for and consider her individual position in our discussions.

 

[mojoey]

Her position is that it is up to the Board. The Board will certainly ask for and consider her individual position in our discussions.

So are you saying that the CEO is allowed to discuss with outsiders what is going on with an unpublished scientific study, but the CEO is not allowed to discuss her opinion on a recommendation what has been unanimously agreed upon by an outside agency? I wasn't asking for her plan of action on the matter or the board's; I was merely asking if Cort or anyone else heard an opinion.

Since you're a board member and will be part of deciding on association's policy re: the name change, would you mind sharing with us your position on the matter?

 

[*GG*]

Mya, there is one thing I'd like you to ask her: Is the CAA currently performing/about to perform a replication study to the WPI study? And if not - and considering the facts that reproducibility is a main principle of science and that we already have enough studies that did not try to replicate the first one and none that did try to replicate it - why don't they do a replication study?

Good question, but my thoughts are the study the WPI was probably very costly?! And I don't think the CAA is that rich, but if they have the money, that would be good! They probably have a few research studies going on now that they are paying for, so I wouldn't think that they could just drop that and put their limited resources into a new study. Although it would help us out a lot.

Hopefully GSK will do a good job and leave no/few stones unturned in regards to replication!