CDC Patient Outreach Call starts in 30 min

[CJB]

http://forums.phoenixrising.me/inde...ication-activity-pcoca-conference-call.18821/

 

[waiting]

I'm on, CJB. System said I was the 3rd attendee.

 

[CJB]

You beat me in - I'm #5. Nobody's asking for pre-reg info.

Just heard someone say, "hi"

 

[CJB]

Both Dr. Unger and Dr. Jason are on the line. Meeting scheduled to begin at 9am EDT

 

[Doogle]

Just got connected15 listening in at this time.

 

[CJB]

Dr. Unger is speaking.

 

[WillowJ]

having heard only the second half of the call (thus none of Unger's original speech) (I got my alarm set wrong), it sounds like CDC is firmly committed to retaining the current set of patients on their radar including the misdiagnosed ones. Does that sound accurate to someone who heard the whole call?

 

[WillowJ]

Did the contractor who was moderating the call just say that they sent out an email notification, and will do so again for the next call in December? Does anyone know which email list is she referring to? I think I found out via PR or XMRV Global Action's Facebook page.

the email originally came out through the CFSAC listserv.

The contact info given in the original announcement seemed to be what was repeated in the call: CFSPCOCACall@cdc.gov

 

[waiting]

I didn't quite catch exactly what Dr. Unger said, but perhaps her comment near the end (so, this is the part you heard) about including "lumpers" with "splitters" being a good idea addresses that question, whereas Dr. Jason seemed to say "lumpers" cause problems with the definition. In general, I didn't hear that any decisions were made about which patients to include, but that they were allowing each clinic to select patients based on their own choice of definitions/criteria...? (I may have missed some of this....? Perhaps someone else can comment on this.)

As for the first half of the call, I don't think she referenced this at all.

Here is some of what she initially said: she talked about people having a number of concerns including the CDC website, but calling one of the top concerns the lack of quality health care. She said with these 2 annual conference calls, in addition to the 2 CFSAC meetiings, there are 4 updates/year from CDC.
She mentioned CDC partnering with medscape and that the course would be around for a year. I think she said that 5700 healthcare providers listened to the course and applied for the CME credit. After the course, they administered some post-test questions to the course- attendees and they said their biggest problem was lack of time.

She mentioned Diagnosis and sleep problems have been added to their website (I'm guessing the Toolkit?).
She discussed the multi-site data collection study they're doing. 450 adult patients will be involved; already have 24 patients. They'll (have) 50% by Jan 2012.

She mentioned Academy health research meeting - CDC had a booth with slides, educational materials (I wonder if that means the Toolkit...?)

She mentioned the upcoming NIH Overlapping Pain Conditions...

She said "CDC takes this illness seriously", that they're working to address concerns with the toolkit, revisions to be discussed at the next meeting (so wondering what happened to the CFSAC recomendation to replace the CDC Toolkit with the IACFS/ME Primer).

(you probably heard this next part, but here's a summary while I'm at it).

Then Lenny Jason spoke, discussing his recent papers, definitions. He did a great job relating the definition problems by comparing PACE trial in UK to what his studies have found (UK - CBT as most beneficial; versus his group - pacing as most beneficial). He mentioned HDHC (?)enzyme that allows DNA to unravel (inadequate messaging, so body can't use cortisol - tantalizing finding that needs to be replicated. However, there are discreptant results without making sure same patient types.

He talked about importance of operationalizing differences between major depression and me/cfs. He mentioned the importance of which instruments are used -- "SKID" vs. "DIS (diagnostic...)". He recomends researchers need to use "SKID", and NOT "DIS". His group found "DIS" is used frequently in ME, when it shouldn't be.

Cardinal symptoms -- PEM and memory concentration. Best to have both self-report (for symptoms) AND biological data. He said all definitions change over time -- even HIV case definition has changed over the years.

[...there was more...I'll try to complete later...]

Of note, Dr. Unger, in response to a question about including the Stevens protocol (Pacific Fatigue Lab), said that this would need to be included 'prospectively'. As study progresses, they would like to incorporate different data -- including the Stevens protocol.

Dr. Unger said the biggest barrier is the heterogeneity of the illness... she said that ME/CFS is a very challenging illness.

I thought it was interesting that perhaps all but one of the questions was directly from Joan Grobstein's list, as posted on the Patient Advocate website yesterday. Her list was excellent, but it makes me wonder if they perhaps only received a couple of emails with questions for the conference call.

 

[CJB]

Thanks, waiting. About all I remember is the next call will be in December and they will give 3 weeks notice.

 

[waiting]

the email originally came out through the CFSAC listserv.

The contact info given in the original announcement seemed to be what was repeated in the call: CFSPCOCACall@cdc.gov[/quote]

Thanks, Willow. Yes, I saw that just after I posted (so deleted it!). Thanks for confirming.

 

[WillowJ]

I didn't quite catch exactly what Dr. Unger said, but perhaps her comment near the end (so, this is the part you heard) about including "lumpers" with "splitters" being a good idea addresses that question, whereas Dr. Jason seemed to say "lumpers" cause problems with the definition. In general, I didn't hear that any decisions were made about which patients to include, but that they were allowing each clinic to select patients based on their own choice of definitions/criteria...? (I may have missed some of this....? Perhaps someone else can comment on this.)

...

I thought it was interesting that perhaps all but one of the questions was directly from Joan Grobstein's list, as posted on the Patient Advocate website yesterday. Her list was excellent, but it makes me wonder if they perhaps only received a couple of emails with questions for the conference call.

yes, that first bit was what I heard which made me make the comment above.

The rest of what you put down I mostly missed. Thanks very much!

I'd guess the lack of quesitons had to do with the very short lead time. I could think of only some very tart questions, and I was hoping to actually hear Dr. Unger before I asked those. I wasn't sure whether we were to email in ahead or during.

 

[WillowJ]

btw, there were 70 some ppl on the line when I dialed in

 

[waiting]

btw, there were 70 some ppl on the line when I dialed in

That's interesting -- at the start, I think the moderator said there were 100 lines available.

 

[CJB]

I do remember Dr. Unger saying there had been some changes to the website. My e-mail question was about that. I'm going to see if I can find out exactly what changes were made.

 

[Ember]

Is anyone able to provide a transcript for those of us who weren't able to listen?

 

[usedtobeperkytina]

I didn't get to hear it. But the reference to the new information on diagnosing and sleep is the new CME courses on the CDC website. It is not a reference to the toolkit. And when I say new CME course, I am not referring to the one on Medscape.

 

[Ember]

it sounds like CDC is firmly committed to retaining the current set of patients on their radar including the misdiagnosed ones.

It sounds as though Dr. Unger remains firmly committed to the Reeves approach then. Though Dr. Jason “seemed to say 'lumpers' cause problems with the definition,” she insists on “including 'lumpers' with 'splitters.'” I wonder how she rationalizes her refusal to commit to the test-retest protocol.

I wonder too how she rationalizes her failure to tape this communication.

 

[CJB]

Most of what Dr. Leonard spoke about was identifying patients for research purposes. He was very excited about the data mining and bio bank projects. As far as lumping and splitting, the gist seemed to be that there needs to be subgrouping and by going from the clinic to research and then back to clinic, subgroups would become defined.

It is so frustrating to have been there, listened to the call, but not be able to remember what in the hell happened. Without a recording, it's unlikely there is a transcript, but I do plan to try and find out. Trying to track down someone who knows what's going on is exhausting.

Thanks waiting for your notes. I tried, but didn't get much.

I have to say I was impressed with both speakers. Dr. Unger seems to know the score and I'm giving her the benefit of the doubt.

They did keep the "welcome" and Dr. Unger's comments to under 10 minutes. Dr. Jason began speaking at 8:10 and started taking questions at 8:30.

I'm glad they're at least trying something like this. Looks like they heard us about advance notice, at least.

 

[WillowJ]

It sounds as though Dr. Unger remains firmly committed to the Reeves approach then. Though Dr. Jason “seemed to say 'lumpers' cause problems with the definition,” she insists on “including 'lumpers' with 'splitters.'” I wonder how she rationalizes her refusal to commit to the test-retest protocol.

I wonder too how she rationalizes her failure to tape this communication.

I was kind of asking a question above. This is a bit of an assumption on my part, which could be unwarranted. Came from a small comment that lumping as well as splitting was valuable, (lumping to find commonalities which might exist across the "broad group" of this disease, splitting to find the differences)

and from, in answer to a question about HHV-6, a sigh, and an answer about the heterogeneity of the cohort--with a new and valuable concession to the importance of subgrouping because different approaches would be useful for different subgroups, and an important note that treatment studies might be a good way to locate different subgroups--and a note that they were sorry, did look for HHV-6 with an appropriate expert, "in Jacobs' lab",...

in some initials which I took to be the Georgia telephone cohort, and something about "stress patients" (so say my notes--I think it could be a reference to the gambling test? or perhaps that they subjected the Georgia cohort to some kind of stress, which would be a moot point, as at least 90% of them don't have our disease so no PEM to measure... sorry I don't recall better, maybe some else has better notes)...

and they couldn't find any HHV-6.

small wonder, that. I'd be astonished if they found the Georgia cohort looked like us.

But as I said, I didn't quite catch the initials that I took to be the Georgia cohort. And the other comment was short. I think my assumption is not unreasonable, but we should ask her before we conclude for certain.