Invitation to Participate on CDC's ME/CFS Technical Development Workgroup

[Mark]

@ Mark, have you asked Leonard Jason, Jen Brea, Ron Davis, Viggster, Searcher, Julie Rehmeyer, or Mary Dimmock if they are interested?

From that list, only Mary Dimmock. I don't think any of those names have been suggested to me before now; they're all good ideas though. Might be a bit late now but I could try to contact them tomorrow...

 

[medfeb]

Leela - I am representing Connecticut but will also try to post here when I learn anything.
Mary Dimmock

 

[leela]

@Mark, somehow in my severe flare of brainfog I misread your post as saying our excellent volunteer wasn't fully on board due to anonymity issues and you were looking for other names. I really should not read or post when I'm like this I can can actually feel my brain swelling during these episodes.

Still, it has been nice to take a moment to appreciate and ponder all the smart, capable, wonderful people in this community.

 

[Mark]

@Mark, somehow in my severe flare of brainfog I misread your post as saying our excellent volunteer wasn't fully on board due to anonymity issues and you were looking for other names. I really should not read or post when I'm like this I can can actually feel my brain swelling during these episodes.

Still, it has been nice to take a moment to appreciate and ponder all the smart, capable, wonderful people in this community.

No problem leela. I hope that most of the people on your list have got a seat already; I doubt there's time to follow up with them now but they'd all be good. That said, I think it's a good thing anyway that we have found a well-qualified volunteer from within the forum community.

 

[Mark]

I've just confirmed to the contractor managing the CDC workgroup that Phoenix Rising's representative will be Deborah Kavounas, the volunteer I mentioned above. I'm sure that Deborah will do a great job and very grateful that she has volunteered to do this.

We will set up a dedicated forum for communication about the workgroup, and Deborah will use that forum to liaise with forum members throughout the workgroup process. I expect that forum to be in place later today or tomorrow, and Deborah can then introduce herself.

Please note that Deborah will be posting using a new forum account, as I mentioned earlier. Deborah did not expect, when she was posting on Phoenix Rising, that she would be in the situation where she now has to reveal her full name, and it could compromise the anonymity of her family members if she were to reveal her forum identity. I'm sure many of our members would not want their full identity to be publicly linked to their forum accounts, so I trust that members will understand the need for this. We expect members to respect Deborah's need for privacy, and public speculation here about Deborah's forum identity will not be tolerated.

I'm confident that Deborah will soon demonstrate to members that she is an excellent choice to represent our community, and I'm excited about the prospect of our amazing community getting behind her and supporting her with feedback, research and encouragement as she starts work in her new role as Phoenix Rising's representative on the CDC's ME/CFS Technical Development Workgroup.

 

[Sasha]

Big thanks to Deborah!

 

[Mark]

Just in case anybody following this thread hasn't noticed, we've created the new forum and Deborah has started a couple of threads there to get some feedback from members on their priorities for the workgroup. The new forum is here:
http://forums.phoenixrising.me/index.php?forums/cdc-technical-development-workgroup.143/
...and the main thread at the moment is here:
http://forums.phoenixrising.me/index.php?threads/tell-me-why-this-matters-to-you.42275/

 

[RustyJ]

@Mark I have a few questions re the selection of @Deborah Kavounas, which do not relate to her private online identity, so they should not conflict with her online privacy concerns, and should be discussed in view of the sensitivity of the role.

I have searched these forums, but not found any discussion of these points, which I find a little puzzling. Or I haven't looked hard enough. Regardless:

What was the basis of Deborah's selection?
Why has Deborah been described as an 'excellent' volunteer, without qualification?
Was she the only volunteer? If not, why was she selected over others?
Since Deborah is a public identity, what further details about her background should we know about?
Does Deborah have any potential conflicts of interest with taking on the role, in her view or what could be interpreted as conflict of interest in the views of members of this forum?
Has Deborah ever been involved in the pharmaceutical industry in any capacity?

 

[Mark]

@@Mark I have a few questions re the selection of @@Deborah Kavounas, which do not relate to her private online identity, so they should not conflict with her online privacy concerns, and should be discussed in view of the sensitivity of the role.

You're right that your questions don't conflict with Deborah's privacy concerns. I don't agree that any of your questions have any relevance to any 'sensitivity' of the role, since they have no real bearing on whether Deborah will do a good job of representing Phoenix Rising on the CDC workgroup. But in the interests of transparency I'm happy to answer them.

I have searched these forums, but not found any discussion of these points, which I find a little puzzling. Or I haven't looked hard enough.

I suppose most people are more interested in answering Deborah's question about why the new CDC ME/CFS educational materials matter to you and what you'd like to see included. I don't find it at all puzzling that most people consider that a better use of their time and energy.

But, as you say, regardless...

What was the basis of Deborah's selection?

Because she volunteered, nobody else did, and she is clearly eminently suited to the role.

Why has Deborah been described as an 'excellent' volunteer, without qualification?

Because she is: she described her background, I spoke with her on video chat, we know her as a forum member and all board members and staff are agreed that we believe Deborah will do a very good job. Her experience as a caregiver, her understanding of the forum membership, her knowledge about ME/CFS, her relevant professional experience and her capability to do some things that ME/CFS patients would struggle to cope with, are all part of why I believe she will be an excellent representative.

Was she the only volunteer? If not, why was she selected over others?

The only volunteer.

Since Deborah is a public identity, what further details about her background should we know about?

It's up to Deborah what she wants to tell you about her background. I don't really think there's anything you need to know.

Does Deborah have any potential conflicts of interest with taking on the role, in her view or what could be interpreted as conflict of interest in the views of members of this forum?

No. I explored this with Deborah, there's no conflict of interest.

Has Deborah ever been involved in the pharmaceutical industry in any capacity?

Tangentially, in that she owns a business that supplies data analytics services to the pharmaceutical industry, but that business isn't relevant to this workgroup and Deborah is participating on this workgroup as a caregiver, so this doesn't represent a conflict of interest with the needs of this role.

 

[RustyJ]

I suppose most people are more interested in answering Deborah's question about why the new CDC ME/CFS educational materials matter to you and what you'd like to see included. I don't find it at all puzzling that most people consider that a better use of their time and energy.

Really. You're actually telling me and anyone else not to ask questions about the selection? You should be welcoming such discussion, not trying to close it down.

 

[Kati]

Thank you to @Deborah Kavounas for volunteering, for @Mark for answering the questions and for the forum board for screening her and making the decision.

I am completely satisfied with her choice and with Debroah's presence on the forum threads where her role is needed. I wish her luck, for all of us and for a successful process.

Edit to add: patient engagement is not only important, it is in my opinion essential to move forward. However with the features of our illness including cognitive dysfunction and post exertional relapse, it is extremely difficult to sustain an engagement which may include traveling to meetings, sustaining a few hours long meetings, going through reading, and formulating responses, may it be orally or written. Take a look at the attendance at all of the CFSAC meetings, for instance. And for those who have been able to be present, it came with a price.

So I am thankful for those who are making the sacrifice.

 

[Valentijn]

You're actually telling me and anyone else not to ask questions about the selection?

I'm pretty sure he was explaining why these things haven't been discussed already. She was the only volunteer, so details regarding qualifications didn't matter much, aside from her being a regular forum member, which had already been mentioned.

You should be welcoming such discussion, not trying to close it down.

He answered your questions, which is about as far from "closing it down" as someone can get.

 

[Mark]

Really. You're actually telling me and anyone else not to ask questions about the selection?

Perhaps you can reference the quote where I told you not to ask questions?

You should be welcoming such discussion, not trying to close it down.

I am doing neither. Whatever you think I should be doing, I still don't think that asking or answering the questions you asked was a productive use of the community's limited resources. There are lots of positive things I could have been doing instead with that time to try to push things forward. But I did answer your questions and I haven't told you not to ask them.

 

[Nielk]

I expect that community input is going to be absolutely vital for us in this case. The letter mentions reviewing drafts: provided we are at liberty to post those drafts publicly (or to members-only) then we can enlist the help of the community in reviewing them. A large part of the job of the representative will be getting that input and relaying it back to the meetings. But this depends on how open the CDC's process is going to be. I expect that most of the other reps won't be working that way: they will be discussing what goes on at the meetings with their boards, probably, but not so much with their members. I think this is probably something a bit different that PR can bring to this exercise, and I hope it will be seen by the CDC as a very valuable thing, because the impression I get is that they really do want some community engagement in this process.

@Mark - Have you received replies to your questions to CDC - for example how open the process will be and how much of it will be transparent so that it can be shared with the members of Phoenix Rising?

 

[Mark]

@Mark - Have you received replies to your questions to CDC - for example how open the process will be and how much of it will be transparent so that it can be shared with the members of Phoenix Rising?

Hi Nielk. Thanks for the prompt to post the CDC's reply to my questions; I meant to do so but forgot...too much going on at the moment...

Dr Unger replied, and Ariel Weiss forwarded her response. The last sentence is actual a response (only partial, perhaps) to MEAdvocacy's question, which Ariel has since confirmed was a copy and paste error (my own questions were split across 2 different emails and from experience of answering such enquiries I do know that considerable care is required to get this sort of thing right!).

There is not a requirement that the workgroup representatives be US citizens. We are seeking a broad representation in this process and included Phoenix Rising because it is a source of information for many advocates and patients. The Phoenix Rising representative need not be a qualified medical professional. We have invited representatives of national and state advocacy groups, so we anticipate that there will be input from the ME/CFS community. We did not specify how organizations would seek input from their members on this process. We agree that transparency is important, and would like to generate one conversation about the issues. If you have further questions about how to proceed, we will arrange for one of CDC’s health communicators to call you if you provide contact information and some suggested times. We are aware of the CFSAC comments on the IOM and these are being included for discussion.

I take this to mean that we should feel free to post publicly about anything we receive from the CDC, and anything that emerges during the course of the discussions. I thought that was probably the case anyway but it's good to have it confirmed.

 

[BurnA]

Has Deborah ever been involved in the pharmaceutical industry in any capacity?

I'm curious why you asked this question. Do you mind explaining your thoughts ?