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What is the CDC CFS program doing? Powerpoint presentation to CFSAC meeting useful.

Dolphin

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This file http://www.hhs.gov/advcomcfs/meetings/presentations/cdc_cfsac_activities_20111109.pdf has been around a while. But not sure if it has been mentioned much. It is the Powerpoint presentation by the CDC to the last CFSAC meeting (Nov 2011).

I just read it - it can be read very quickly.

It contains information on different CDC initiatives including some I wasn't aware of (I never watched/listened to the Nov 2011 CFSAC meeting nor have I read the meetings so far).

For example:

Production of new CME courses on track for 2012
- CFS: Clinical diagnosis and management .Team: J Jones, N Klimas, L Bateman, A Vincent, C Lueckte
- CFS and Sleep .Team: R Boneva, B Natelson, L Bateman, F Togo, W Moore

It can be read quickly, as I said, so somebody can quickly see if there is stuff they weren't aware of.
 

oceanblue

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Thanks, Dolphin.

Issued three contracts, clinical assessment of CFS:

- Beth Israel Medical PI, B Natelson
- Neuro Immune Disorders PI, N Klimas
- Open Medical Institute PI, A Koglelnik, D Peterson, C Lapp, L Bateman, R Podell

I'm no expert on the CDC but to see names like Klimas, Peterson, Bateman and Natelson on clinical assessement and education looks like progress to me, and a step away from the Empiric criteria.
 

Dolphin

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Thanks, Dolphin.

Issued three contracts, clinical assessment of CFS:

- Beth Israel Medical PI, B Natelson
- Neuro Immune Disorders PI, N Klimas
- Open Medical Institute PI, A Koglelnik, D Peterson, C Lapp, L Bateman, R Podell

I'm no expert on the CDC but to see names like Klimas, Peterson, Bateman and Natelson on clinical assessement and education looks like progress to me, and a step away from the Empiric criteria.
Yes, it is good, although Jennie Spotila pointed out on Twitter that there can be a difference between a grant and a contract so that these will be more restricted and are controlled by the CDC. So hopefully the CDC won't "misuse"/misrepresent the data in some way. But does look good.
 

oceanblue

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More info from the Research 1st website:
The CDC has entered into contracts with three physician groups: Dr. Benjamin Natelson (Beth Israel, NY); Dr. Nancy Klimas (Miami, FL); and a consortium formed by Drs. Andy Kogelnik (Open Medicine Institute, Calif.), Daniel Peterson (Sierra Internal Medicine, Nev.), Lucinda Bateman (Fatigue Consultation Clinic, Utah), Charles Lapp (Hunter-Hopkins Center, NC) and Richard Podell (NJ). These physicians will provide CDC with clinical expertise from physicians caring for patients with CFS from multiple clinical practices and will obtain standardized clinical, functional and epidemiologic data to ascertain the extent of heterogeneity within and between clinical practices. These contract awards were made in response to a May 2011 solicitation and were announced during the CDCs agency update at the Nov. 9, 2011 meeting of the CFS Advisory Committee. In 2012: This group will be working to identify a standardized approach to definition use in clinical diagnosis and management of CFS and improve standardization, integration and sharing of CFS data to benefit research.
 

Ember

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Yes, it is good, although Jennie Spotila pointed out on Twitter that there can be a difference between a grant and a contract so that these will be more restricted and are controlled by the CDC. So hopefully the CDC won't "misuse"/misrepresent the data in some way. But does look good.

Dr. Unger discusses the contracts here: http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video).

She says that the CDC will need at least a year to collect data from their clinical colleagues and possibly engage people that do not actually have contracts to discuss a process for revisiting Fukuda. Any subsequent meeting of experts, she says, will be prefaced by committees and pre-meetings, posting and comments, discussion and dialogue because everybody needs to have a voice in what the final product is.
 

WillowJ

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Thanks for the information. :Retro smile:

does anybody know who C Lueckte is?
 

Bob

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More info from the Research 1st website:

The CDC has entered into contracts with three physician groups: Dr. Benjamin Natelson (Beth Israel, NY); Dr. Nancy Klimas (Miami, FL); and a consortium formed by Drs. Andy Kogelnik (Open Medicine Institute, Calif.), Daniel Peterson (Sierra Internal Medicine, Nev.), Lucinda Bateman (Fatigue Consultation Clinic, Utah), Charles Lapp (Hunter-Hopkins Center, NC) and Richard Podell (NJ). These physicians will provide CDC with clinical expertise from physicians caring for patients with CFS from multiple clinical practices and will obtain standardized clinical, functional and epidemiologic data to ascertain the extent of heterogeneity within and between clinical practices. These contract awards were made in response to a May 2011 solicitation and were announced during the CDCs agency update at the Nov. 9, 2011 meeting of the CFS Advisory Committee. In 2012: This group will be working to identify a standardized approach to definition use in clinical diagnosis and management of CFS and improve standardization, integration and sharing of CFS data to benefit research.

Dr. Unger discusses the contracts here: http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video).

She says that the CDC will need at least a year to collect data from their clinical colleagues and possibly engage people that do not actually have contracts to discuss a process for revisiting Fukuda. Any subsequent meeting of experts, she says, will be prefaced by committees and pre-meetings, posting and comments, discussion and dialogue because everybody needs to have a voice in what the final product is.

It's 30 years too late, but it does seem like a move in the right direction. Am I too easily pleased or does this all seem genuinely encouraging?
 

Dolphin

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While I prefer Unger to Reeves, I recall some comment that they are going to try to prove that the (so-called) empiric criteria really aren't that bad. I think this is likely to be very selective use of the data.
They are in an awkward situation as still have studies in the pipeline done on "empiric" criteria patients. I don't think they will want to bash it too much. We shall see.
 

Bob

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While I prefer Unger to Reeves, I recall some comment that they are going to try to prove that the (so-called) empiric criteria really aren't that bad. I think this is likely to be very selective use of the data.
They are in an awkward situation as still have studies in the pipeline done on "empiric" criteria patients. I don't think they will want to bash it too much. We shall see.

OK, thanks Dolphin... I won't get too excited then... Like you say, we shall see...
 

oceanblue

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While I prefer Unger to Reeves, I recall some comment that they are going to try to prove that the (so-called) empiric criteria really aren't that bad. I think this is likely to be very selective use of the data.
They are in an awkward situation as still have studies in the pipeline done on "empiric" criteria patients. I don't think they will want to bash it too much. We shall see.
Do you know where that was said, and when? I got the impression that Unger was trying to cautiously move away from it e.g. pointing to the value of using standardised instruments in diagnosis, without actually endorsing the particular scales/thresholds used in the Empiric criteria. I doubt they'd choose those personnel for contracts if they really wanted to keep the Empiric - though no doubt they will evaluate the Empiric along with other criteria against the clinical data collected. If they'd wanted to be very selective about the data, why use researchers who signed up to the new International ME criteria to collect that data? Or maybe they just like a fight :D.
 

Dolphin

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Do you know where that was said, and when? I got the impression that Unger was trying to cautiously move away from it e.g. pointing to the value of using standardised instruments in diagnosis, without actually endorsing the particular scales/thresholds used in the Empiric criteria. I doubt they'd choose those personnel for contracts if they really wanted to keep the Empiric - though no doubt they will evaluate the Empiric along with other criteria against the clinical data collected. If they'd wanted to be very selective about the data, why use researchers who signed up to the new International ME criteria to collect that data? Or maybe they just like a fight :D.
Ostensibly it is a good move. I just thought I'd point out that there is potential for problems so we shouldn't presume anything.

I can't remember when she said it - it doesn't seem that long ago. I'd be thinking possibly one of the two CFSAC meetings in 2011 or else the IACFS/ME conference (or did she speak at the State of the Science conference?). (probably wasn't the IACFS/ME conference as never saw video for that while I think I watched her saw what she said)
I might not have phrased it correctly - she was possibly referring to one study in particular e.g. we are going to show that there was little or no differences using the empiric criteria in study X. I can't remember the exact words but it was a defense of the criteria and in the context of a discussion/question on the criteria rather than the study, as I recall.

And as I pointed out, there may be a difference between a contract and a grant in terms of what is made public.
I remember watching one of her talks to the CFSAC (possibly May 2011) and she wasn't critical of the empiric criteria. She was talking about the importance of using validated questionnaires (which the empiric criteria uses) and making other points generally in favor of it. We shall see what happens.
 

oceanblue

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Ostensibly it is a good move. I just thought I'd point out that there is potential for problems so we shouldn't presume anything.

I can't remember when she said it - it doesn't seem that long ago. I'd be thinking possibly one of the two CFSAC meetings in 2011 or else the IACFS/ME conference (or did she speak at the State of the Science conference?). (probably wasn't the IACFS/ME conference as never saw video for that while I think I watched her saw what she said)
I might not have praised it correctly - she was possibly referring to one study in particular e.g. we are going to show that there was little or no differences using the empiric criteria in study X. I can't remember the exact words but it was a defense of the criteria and in the context of a discussion/question on the criteria rather than the study, as I recall.

And as I pointed out, there may be a difference between a contract and a grant in terms of what is made public.
I remember watching one of her talks to the CFSAC (possibly May 2011) and she wasn't critical of the empiric criteria. She was talking about the importance of using validated questionnaires (which the empiric criteria uses) and making other points generally in favor of it. We shall see what happens.
Thanks for the clarification. I don't suppose Nancy Klimas, Dan Peterson and Lucinda Bateman would have signed up for this if they'd thought the CDC were going to cook the figures, and presumably they know a lot more about this project than we do. But then I do tend to look on the bright side - for the same reason I was confident the PACE authors would stick to their published protocol...
 

Ember

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While I prefer Unger to Reeves, I recall some comment that they are going to try to prove that the (so-called) empiric criteria really aren't that bad. I think this is likely to be very selective use of the data.
They are in an awkward situation as still have studies in the pipeline done on "empiric" criteria patients. I don't think they will want to bash it too much. We shall see.

Do listen to Dr. Unger here: http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video). I already posted it, so perhaps I should transcribe the part about the Reeves definition:

Hopefully by early next year we will have a publication that clearly explains the comparison of the standardized approach to applying the Fukuda definition, which I don't like to calling it Fukuda--it's the 1994 definition, and the approach that we had used in the past in Wichita studies and indeed everyone will find it very reassuring that the patient populations are very quite comparable. OK? So I think that will relieve a lot of the anxiety about what is going on.

One, that article will also include as supplemental material detailed explanation of actually how we did that criteria, so that is, that is to allay the concern of the current data that those large, large studies that are used that have the data collected the way we collected it. Those studies are still ongoing, the three studies are the registry study, I don't mean the studies are ongoing, data analysis and testing and all of that are still going on, the clinical study that we call the GCRC study and finishing up the follow-up surveillance study, so they all use, you know, we asked the questions the way we asked them and we'll have that data and be able to show that" (http://www.youtube.com/watch?v=nf2yOxf74bE).

I certainly agree with you that there is potential for problems so we shouldn't presume anything!
 

Dolphin

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Do listen to Dr. Unger here: http://www.hhs.gov/advcomcfs/meeting.../11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video). I already posted it, so perhaps I should transcribe the part about the Reeves definition:

Hopefully by early next year we will have a publication that clearly explains the comparison of the standardized approach to applying the Fukuda definition, which I don't like to calling it Fukuda--it's the 1994 definition, and the approach that we had used in the past in Wichita studies and indeed everyone will find it very reassured that the patient populations are very quite comparable. OK? So I think that will relieve a lot of the anxiety about what is going on.

One, that article will also include as supplemental material detailed explanation of actually how we did that criteria, so that is, that is to allay the concern of the current data that those large, large studies that are used that have the data collected the way we collected it. Those studies are still ongoing, the three studies are the registry study, I don't mean the studies are ongoing, data analysis and testing and all of that are still going on, the clinical study that we call the GCRC study and finishing up the follow-up surveillance study, so they all use, you know, we asked the questions the way we asked them and we'll have that data and be able to show that.

I certainly agree with you that there is potential for problems so we shouldn't presume anything!
Thanks Ember. That may be what I had in mind.

In case people are confused, they refer to the (so-called) empiric criteria as a standardized approach to, or operationalized version, of the 1994 definition (or the 2003 update).

However, they did it in a very weird way e.g. if you have no impairment in physical functioning or role physical (SF-36) but have lower scores on "role emotional" (tests depression and the like), you can qualify as disabled enough to satisfy the CFS criteria. So as I say a weird approach.
 

oceanblue

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Do listen to Dr. Unger here: http://www.hhs.gov/advcomcfs/meetings/presentations/11082011.html (see CFSAC November 9, 2011 10:45 am - 1:15 pm at approximately 1:00 on the video). I already posted it, so perhaps I should transcribe the part about the Reeves definition:

Hopefully by early next year we will have a publication that clearly explains the comparison of the standardized approach to applying the Fukuda definition, which I don't like to calling it Fukuda--it's the 1994 definition, and the approach that we had used in the past in Wichita studies and indeed everyone will find it very reassuring that the patient populations are very quite comparable. OK? So I think that will relieve a lot of the anxiety about what is going on.

One, that article will also include as supplemental material detailed explanation of actually how we did that criteria, so that is, that is to allay the concern of the current data that those large, large studies that are used that have the data collected the way we collected it. Those studies are still ongoing, the three studies are the registry study, I don't mean the studies are ongoing, data analysis and testing and all of that are still going on, the clinical study that we call the GCRC study and finishing up the follow-up surveillance study, so they all use, you know, we asked the questions the way we asked them and we'll have that data and be able to show that" (http://www.youtube.com/watch?v=nf2yOxf74bE).

I certainly agree with you that there is potential for problems so we shouldn't presume anything!
Thanks for the transcript. That's going to be a very interesting publication.

As Dolphin said
They are in an awkward situation as still have studies in the pipeline done on "empiric" criteria patients. I don't think they will want to bash it too much.
So they may well have a different attitude to the future work compared with defending the pipeline study. And it's going to have to be some publication to 'reassure everyone' about the comparability of patients between Fukuda and Empiric criteria.
 

Ember

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Thanks Ember. That may be what I had in mind.

Or you may have had in mind Cort's comments on the IACFS/ME Conference in September:

Mangan made it very clear that Unger picked up the ball with the CASA project and really pushed it forward when it looked like it might die. Having a CDC official work with the NIH and with the rest of the research community on something is pretty new.

They are sticking with the Empirical definition it looks like - Unger says a recent study shows its not so bad (but Jason's study on it was pretty bad). They are working with prominent ME/CFS physicians now instead of doing random sampling....and Unger has been talking to some patient groups.... There are some changes...They're doing their own thing - they're strong on the mind/body component, funded that nice basal ganglia work, the intriguing gynecological study and they're strong on NK cells too....They're never going to be the center of pathogen research that's for sure....
 

Ember

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We shall see what happens.

Dr. Unger has indicated on more than one occasion that she is also considering the input of patient groups. Here's more transcript of her comments at the CFSAC meeting in November:

We are certainly aware of all of the new definitions and the strengths and the weaknesses. And I think it's been very helpful to get this new information and to consider what other domains and other measures should be included and it will, you know, I've gotten lots of communication from people saying that CFS is different from ME; I've got people that insist that it's the same thing and synonyms. I think that there's disagreement, there's confusion in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphened name, and I think until there's clarity what we're talking about, we can't give good guidance. So there has to be more consensus among the experts, and that's hopefully where we're starting with getting just our contract initially started. This will be the beginning of the dialogue. And there's legitimate points to be made on both sides...it's separate, it's together, it's different...I don't have the answer yet. [15 seconds of awkward silence] (http://www.youtube.com/watch?v=uB8xnB69KaE&feature=relmfu).

And here she is in recent correspondence with David Tuller:

Dr. Unger indicated that the agency is in dialogue with other investigators about instruments and methods to best characterize and stratify CFS patients. The agency is also launching studies with several investigators to enroll and characterize patients from seven clinical practices headed by leading CFS physicians to help clarify issues involving the case definition as well as the name.

We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME [sic], the 1994 CFS definition and the newly proposed International ME definition, she wrote. We anticipate that this data will assist researchers and clinicians in considering further refinements of the case definition. With regards to the name of the illness, she wrote: Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward (http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/)."

In my opinion, it behooves us as patients to come to grips with the opportunity presented by "the newly proposed International ME defin[sicition" and to communicate with our advocacy groups about this issue.
 

WillowJ

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I'm also feeling cautious because of the balance on this team:

- CFS: Clinical diagnosis and management .Team: J Jones, N Klimas, L Bateman, A Vincent, C Lueckte

would the A Vincent be the one from Mayo who is interested in fibro? (I kind of doubt it's the one from Oxford who is interested in viral encephalitis, though that would be preferable) because that looks kind of bad.

Two good doctors, two unhelpful ones, and an unknown for the diagnosis and management team...

I admire Klimas, Bateman, Lapp, and the others for thinking they might be able to get somewhere with CDC. Says a lot for their spunk.

But again I'm concerned about the balance here, and then it's a contract situation as well, as has been pointed out.

I'm willing to give Unger the benefit of the doubt, but she does have a sticky situation with these expensive ongoing studies and, ultimately, she has bosses to answer to--the personnel in her upline has not changed. And some of the bosses are assuredly on the dark side.

But yes, we'll see what happens. With more involvement from experienced rational docs and other stakeholders, it's difficult to predict.
 

WillowJ

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No idea, a Google search makes me think it it might be a typo, it isn't a common name.

thanks. I had found someone who looked like a possible match on PubMed when I typo-ed what was given, but then I'd realized I'd made an error.