About : standard furniture adrian collection
Title : standard furniture adrian collection
standard furniture adrian collection
well, good morning, everyone.welcome to the spring??i guess it's still spring, although outside i'm beginning towonder, 2013 chronic fatigue syndrome advisory committee.i'm gailen marshal, i have the privilege of being the chair of this committee and we willstart out with our usual roll call. we have new members that we'll introduce afterwe actually call the roll. so let's see, they gave me this thing to work,let's start and we have the??voting members are the ones i'm supposed to call the rollfor. >> then we'll do everybody else so hold onjust one second and we'll do this right. let's start with eileen hollderman, thankyou.
>> here.>> rebeccal collier. >> susan le vine.>> here. >> steve krafchick.>> marrian fletcher. >> here.>> here. >> adrian casillas.>> he is not here, he was caught by storms in texas last night.we will be here sometime this morning, everything banner based on the flight schedule, thinkkindly of him, it's been a rough night for him, we also have ex�officio members here.we have three liaison, that's the texas way of saying it, that are represented and senttheir own representatives and we will if you
guys will give me a second because i'm stillflipping through all this paperwork, let's just call their names now.dr.�ken freeman, dr.�kim berry. >> dr.�fred freeburg and we'll go throughthose in a moment. i have the distinct pleasure to introducesomeone i know??oh, that's right. she's keeping me??that's why she sits nextto me. our ex�officio�members, please forgiveme again, we'll give you their specifics now, we'll go to roll now, elaine perry, amandawolfe? susan meyer.>> susan michelle. >> i'm filling in for teresa.>> oh okay.
>> keith hull�should have known that filling in for teresa,.>> deborah? >> beth sharp?>> here, and i think that's all. okay, so i think nancy has some housekeepingissues and then we will introduce to you who really needs no introduction dr.�wanda joneswho will speak on behalf of assistant secretary coe.>> morning everyone, so glad to see all of you here around the table and in our facility.welcome to the spring??it is still spring??wait till have you it here in july, mooting ofthe chronic??meeting of the chronic fatigue syndrome advisory committee.just a couple, two or three housekeeping announcements, remember, when you speak, we're being recorded.and we are being video streamed and live video
streamed and then these videos will be archivedso everyone who is speaking, needs to speak into the mic but first you have to make sureyou see the little green light. so please do that.we will continually remind you because all of us forget.so not to worry about reminders. we have a very tight schedule these two days.so we really need everyone to be prompt and we're look forward to that.we have extended lunch, just 15 minutes, i would suggest that everyone who needs lunchgo into the cafeteria that's right down the hall and get your lunch.you can bring it back here. i just want to say one word of thanks to mywonderful staff, some of them are here in
the room, the great leader of how this thinghappened is marty, and without her this would not be and her fabulous assistant joyce greyson,joyce is here at the moment but we really appreciate their help.we also received a lot of help from them and [indiscernible] who got all these here andthen from staff from our office who have helped this morning and will be helping during theday, getting you around and we really appreciate all of their work.>> i'd like the committee to show your appreciation with just a round of applause for this staff.they've done such a great job. [ applause ]>> and see marty, see, i told him what to do and marty tells me.[laughter]
okay, she'll come up with more stuff and theni'll tell you. okay, so go ahead.thank you very much. >> it's??it is actually distinct pleasureto work with these folks. they are dedicated to what they do and theyare certainly dedicated to the cause taken??they we're all working so hard to try to help.it's my distinct pleasure to introduce dr.�wanda jones, she is the principal deputy assistantsecretary for health here. she used to be the designated federal aficialfor this??official for this committee before nancy came on board.those of us who know here certainly respect her and i think those of us that really knowher, adhire her as well for the passion that
she has for the things that she does and iwould think i'm successful in saying there's no greater passion she has than to try topromote the idea of the advancement for good care for patients who have mecfs.so wanda? >> thank you gailen, it's a pleasure to beback before you. dr.�coe sends his regrets, he is at theworld health assembly with the secretary and an hhs team with a number of priority issuesthat are sitting before the world health assembly this week.so i said sure, i'll do that. it gave me a chance to come back and??i hesitateto use the word old friends. long standing friends because nobody's everany older than i am, but i've had resentment
from people in their 20s and 30s as they'vebeen aged inappropriately. so long time friends, colleagues, researchers,investigators, advocates, i mean everyone working to try to make a difference in thisillness owe so it's a pleasure to be back, to the viewing audience and to many others.i'm thrilled. there's been so much change and i think it'schange in a positive direction, we're not always sure, you know sometimes when changehappens, it is disconcerting to say the least. i'm an avid gardener, it's much therapy inhaving dirt under my fingernails and being out where things are green and calm and youknow and sometimes the more i mess with stuff, the worse it is.sometimes i've pruned things at the wrong
time or pruned them expwrong it takes thema while??them wrong and it takes them a while to come back.and this spring i've been truly rewarded by??maybe by my mistakes but my persistence.giving??you out to talk to them and encourage them, don't give up on me and i really dolike you and my plants have come back and the funny thing, the odd thing for me, somuch for life that's a great metaphor. because sometimes the more we mess with it,the worse it is. and change in our careers and in our lifespan is something that is constant and sometimes it's something we fight tremendously and sometimeswe just have to say, i'm going to go with it and just trust that on the other end, therewill be something better so what i have seen
just since i left is dfo for sifsac, has beena positive move within hhs and i really think this committee is responsible for a lot ofthat. that this committee's positioning.the this committee activities and the long standing recommendations and the work of theteam, the team i led, the team that nancy now leads to try to address those recommendations.it's really a driving conversation and consideration within and across the department.so i really salute all of you for keeping with it.it's never fast in government, it is particularly onerous, right now facing sequester and somany other issues that i haven't seen in nigh 26 years??my 26 years.but nonetheless, cfsme, mecfs, is still moving
forward.so acknowledging cfsac's changes and we have a new motive and i discussed them a few momentsago with rebecca, she's a nurse, from maryland wmore than 25 years nursing experience, 10years of case management experience in disability management so she'll bring a tremendous perspectiveto the committee. and in her current position she administeredand manages disability benefit fors the staff of the multicultural organization, her workexperience includes managing and coordinating patient needs to assess plan, and coordinatemedical care providers, and the care that is provided to workers who sustained catastrophicand brain and spinal cord injuries. and she has experience, also working withpersons diagnose wide mecps, so welcome, rebecca,
we welcome you to committee and we're gladto have you here and so thank you for serving. and as gailen�mentioned we have three liaisonorganizations, the charter will be amended?? >> it is.>> ??it is amended. sorry field functions messed that one up.>> you signed off on it. >> you sign off on everything.>> yeah. so at any rate, with three organizations nowat the table, again to bring a voice, even as nonvoting members but to be a voice anda visible presence at the meetings with iacfsme, with the new jersey cfs association and thecfids, association of america, so this gives us the opportunity to improve collaborationand communication across the organizations,
across the department and through this committeeto help bolster the work that it does. another piece of change that's coming is thatthe department in constantly assessing and reassessing its advisory committees and thereare now close to 270 advisory committees in this department, most of which report to thesecretary, you can imagine, i mean if you just did the math on each day of the week,if approximate the secretary took one advisory committee, she could spend each working dayof the week looking at advisory committee recommendations and actions, agivities andso forth, so the department has heard from me and many others, for sometime, that wedo need a much better approach particularly as the advisory committees that are managedout in the operating division, the cdc, fda,
nih and so forth as those filter in and cometo be presented to the secretary, plus those we manage within the office of the secretaryand we within oash, under dr.�coe, manage 10 committees ourselves.we have seven that are secretarial and three that are presidential.so all of those recommendations go into the same funnel and filter and make their wayup to the secretary, so we're overhauling some of the processes and changes that arejust beginning to happen but to front loadrather than just submitting after every meeting aset of recommendations, there have been best practices they think are about to be embracedwhere some advisory committees will meet over three or four meetings and then work on whitepaper or rational statement, longer than just
a brief paragraph, but you know essentiallydoing some heavy lifting to put the facts together and to put a well thought out recommendationand rational forward that really does help the department in decision making as thoserecommendations are filtered back out and we seek enengagement across the department.so some of that will be coming, this committee in its prior iteration, the cfs coordinatingcommittee actually took four meeting at one point to develop recommendations and at anotherpoint, i think there were two or three meetings before a set of recommendations were developedand again because there was some rational and supporting documentation.and i think we're really alt a unique place. this had is an inflection point and the wayin which this committee can further strengthen,
bolster its positioning and insure the successof uptake of recommendations across the department. and we couldn't do that without the vitalwork of the ex�officio�members at the table.and that's another place where i have seen phenomenal change and i couldn't be nor excited.for example, the recent fda stakeholder meeting and it was a ground breaking meeting for theirnew drug development workshops and the way in which fda ran that meeting, the interactivityof that meeting and just the overall very, very positive and productive way in whichtaken??they day and a half proceeded, i could not be more excited about the future of whatfda can do, but also as a model for other sorts of meetings at this department mightconvene and move forward territory towards,
i really salute our fda colleagues.cdc at that meeting shared information from their seven site clinical study on mefs, andextraordinarily exseating development and some new ways perhaps of thinking about ororganizing the vast amount of information that that study is generating and it really,it's somewhat daunting and yet i couldn't be more excited for how that can evolve overthe next year or so because it's not quite ready for that deeper, deeper dive but boy,the promise of those early findings is just phenomenal.nih is planning and evidence based methodology workshop and arc is doing the evidence mappingto support that. again terrific collaboration, long standingwork between those agencies but to focus those
towards research based case definition andusing evidence based methodology, will really stand the work of that workshop that willbear fruit for many, many years to come. it's tremendous opportunity here with nih'sworking groups, cdcs, activities, hrsa continuing to reach out to providers and try to leverageeducational channels. cms looking at opportunities and ways in whichdiseases and illnesses are considered and i think have you a speaker planned for laterin this meeting that will provide insights and elaine thank you for helping facilitatethat so there really to me could not be a more exciting time to be here and to be partof cfsac�to you know as the old saying goes, be part of the change that you want to see.and keep your voices heard and use your processes
through the advisory committee and participatein these meetings and engage as much as you can because we've all come so far and i thinkthe work we've done is so much better over these last five?seven years.it's just phenomenal. so i couldn't be more hopeful and more excited,and thank you all, and sorry i can't stay with you all today.[ applause ] >> wanda if you could take just a moment ifthere's anybody that would have a question for her around the table?then no more questions. she as a car waiting down stairs.>> i get to do my job this week. dr.�coe's job and a few others to boot.>> thank you so much for taking the time.
>> today's one of those days.>> thank you all i'm it. i'm it.we'll just say i'm it. thank you all.>> thanks, very much, wanda. i want to take a moment to expand on her commentsas it relates to our new members that are around the table and tell you a little bitmore about them. i think she told you about dr.�??about rebeccacollier�who is an incredibly experienced case manager with disability management andrebecca we are really looking?? organizations that were liaison members ofthis committee. it is the organization that selects the representativewho attends.
it is not the sfsac�committee or hhs officials,the three organizations are the cfsac�organization which has been the leading edge of mfs researchand policy education for more than 25 years. the association responsibly represents theneed of mecfs patients and their loved ones look working to make mecfs widely understood,diagnoseable and treatable. entired by courage, passion, volunteers bygifts small and large from supporters committed to a vision of a world without cfs, the cfs�associationleads with purpose, collaboration, respect, integrity and innovation and this organizationis represented most ably by kim mc�cleary, and you might have a couple of words you wouldlike to say. i figure you do.>> always, given the opportunity, yes.
>> thank you gailen.it's an honor to be back at this table. ken and i were talking about the fact thatthis committee is in its 10th year and i said well, in its prior life, it's really 20 yearsit was september of 1993 at cdc that this committee met in public for the first timeunder the name the chronic fatigue syndrome coordinating committee.so i think i have been at every meeting except one and am glad to have an active role withmy colleagues around the table and numbers of the public to facilitate discussion overthe next two days. thank you so much.>> thank you kim, very much. >> we're also pleased to have as the liaisonorganization, the international association
for chronic fatigue syndrome, myalgia militeisand fortunately that acronym is too long to pronounce so one of my pet peeves doesn'thave to go through. this is a nonprofit organization of physiciansand other health professionals, research scientists, educators and patients.its mission is promote, stimulate and coordinate the exchange of ideas related to cfsme�andfibromyalg research in patient care. iafcfsme, accomplishes these through one organizationof local, international and international scientific conferences and two, ongoing publishingon the topic of cfsmemplet specifically we have launched in 2013 a new peer reviewedprint and online journal named fatigue, biomedicine, health and behavior, published by rutledgetaylor and francis.
and there's a couple of urls here that peoplecan see, not only for the clinicians that they publish indeed 2012, but for the onlineversion of this journal. we post a current events news letter threetimes a year focused on cfs me, and fibromyalgia, in addition iacfsme releases public statementsaddressing new medical findings and policies related to cfsme.and their representative is their current president president, is that right?and is the editor of the journal and fred, welcome few comebts you might have for us?>> thank you, gailen. it's a measure to??pleasure to be here.i thank the committee as selecting ifscmeas one of the lives of representatives and ilook forward to the presentations and discussions
today.i think in listing these three organizations, so i represent a broad array of concerns inthe professional and patient community will help to??will help to enlarge the recommendationsthat come out of the committee to reflect what is going on within the larger community.so i??i then is all to the good to have the three of us here today.thank you. >> very good, fred, thank you.>> and the last organization, certainly not least, who is represented as the liaison memberis the new jersey chronic fatigue syndrome organization known as the njcfs, it was foundedin 1995. it is a 501 c?three all volunteer organizationwhose purpose include supporting patients,
family, disseminating reliable informationabout the illness, facilitating information between healthcare providers and patientsas well as promoting research into the causes, methods of diagnosis and treatments and cureof mecfs. njcfsa�provides patients and their familieswith many benefits including support groups help plan to request information, a web site,facebook page, physician and attorney referrals, a journal, lending library, medical information,medical conferences, high school student and medical school student scholarships, supportstudents and families to help receive educational accommodation, funding for mecfs research,public education, public policy and advocacy, all expenses are paid through donations, andfundraisers.
they are patients in families of patientswith mecfs, and they support and form and help patients to deal with this serious illresponse they have a web site listed on here, they are represented today by dr.�ken freedman.ken? >> thank you it's a pleasure to be here.njcfsa is a statewide patient advocacy organization and therefore our primary concern and focusis on individuals with chronic fatigue syndrome/me in the state of new jersey, however, our programswhich include not only patient care and advice to patients, but education and to some extentminor research grants has served as models and we have served as a model for programsin other states. in particular our medical student scholarshipto my knowledge is the first one that was
ever conceived or run in the united states,and it expanded into the state of vermonte and also into the state of wisconsin and wehope that similarly other programs that we have will be considered by other states andwe hope that some of??[phone ringing ] ??>> will be a positive impact. >> thank you so much.it's a great group, this is a somewhat bigger group, first time we've been actually fullvoting member wise for a while. all the positions are now full.we have one left. we are not full yet.but we've been fuller than we have been for a while.how about that.
that's closer.and i think that that presents wonderful opportunity. it presents new challenges as well.you heard from dr.�jones, the idea that that the hierarchy of hhs now believes thatwith all these different advisory committees around that there's a new way that's goingto evolve in terms of how recommendations are going to be developed with the backgroundinformation is going to be necessary to be forwarded on and i think these recommendationsin order for us to stay at the table and stay at what i believe is a great progress thathas been made over the last several years at the table, for cfs�related recommendations,i think it's going to take a new level of efficiency that goes far beyond what we cando in the short period of time that we have
over today meeting twice a year.in order to do that, there's going to be a lot of background work as we develop??as wedevelop the recommendations as we take input from the public again.i think it's important to take input from the public at this meeting in a public fashion,that's going to happen, we're actually introducing a new way to try to get more interaction withthe public, and we're piloting these. we'll see if it works, we'll see how wellit works, we'll see if there's a different way to do this that may work better for thepublic. there will be people that think this is agood idea, there will be people that know this is a good idea and there's a lot aboutthis, i've heard.
but i want to hear more.my e?mail address is no secret, everyone has pretty wide access to it.and i'm happy to hear it one way or another. the goal here is to do things as orderly andefficiently as we can and i was telling a couple of the new members this morning, mygoal is when they leave this meeting is to feel like they had an opportunity to get mostof the information that they wanted to lay out here to be laid out in an orderly fashionand to be done in a way that is collegial and cordial.as i've said multiple time system that we're all here for the same reason.many of us bring different perspectives to this committee, some of which are directlyrelated to patients or the process related
to this illness.some of which are a little bit more indirectly related because it brings expertise that maybe useful and in as we develop questions related to proper diagnosis or optical images matediagnosis to optimal therapy, to finally finding the causes, i believe it's causes so thatwe can find the cure for this illness someday. in order to do that, we would want to seekwhenever we can consensus, consensus does not necessarily mean unanog impedimentsitybecause sometimes that's hard to do but as we focus on substance and acknowledge thatmany of us sro different styles to achieve the same substance, that consensus shouldbe a goal that we should try and be able to do.sometimes that happens, sometime its doesn't
and when it doesn't, and there will be timewhen is it doesn't, we have to learn to agree to disagree.and to agree to disagree does not say??to agree to disagree does not mean that it'sa matter of of, you know six to five or a matter of the majority win asks that's theway it's going to go. to agree to disagree and i think with theexpertise around the table when there is a significant disagreement, i think what itmean system that further discussion, further information may be necessary.the goal here will be to do the things that will be useful as we develop meaningful andactionable recommendations that are sent on to the secretary that will ultimately resultin the improvement of the lot of the patient??life
of the patient??[phone ringing ]??we're goingto try to be punctual. i was ready to start at 9:00 this morning.let the record show, but i told i couldn't start until five after nine.but we will try to stop on time, start on time, to represent people, to respect people'stime so that people will feel like that they can get the information through that theywant to do. tell be important to listen to one another'sperspective. that's something that is easy to say, andsometimes hard to do and at least for me, it's harder to do based upon how passionatei feel about something. the more passionate about something, the harderit is more me to listen to someone who has
the opposite opinion.i don't know if any of you have ever taken a stephen covey based leadership program,but one of these, he has a small totem pole, it's a training to teach you not to talk oversomeone but let someone say what they have to say and in this exercise you do, you holdthe pole, i meant to bring it and forgot it, but you're holding the pole, have you a floor.somebody else can't talk until they pass the pole to the next person.now that's a little rudimentary and a little pedestrian and it's not something that willwork in a format like this but it teaches the principle of being respectful one another'sopinion and giving them a chance to make that opinion as they want to do.and the goal of course will be that we let
someone talk in a relatively uninterruptedfashion. within the context of human abilities that'ssomething we will strive to achieve and i think largely is achieved at this committeealready. in order to do that, we will try to do thiswhere most people will??if there's a given thought on the table, after a presentation,there are a lot of thoughts that come up, we'll try to consider these thoughts moreor less one at a time and let people then have comments as it relates to the thoughtand stay on task with that thought. it is my belief that by and large, most peoplecan make their thought known in a three minute time frame.so we're going to set essentially a three
minute time frame for you to make a comment.doesn't mean you can't come back to you again and respond.occasionally the next person whose speaking has something that is so distinctively oppositefrom what the first person said, that it really would be a appropriate to go back to thatfirst person and let them respond to that. in other cases, it may be it's a differentperspective but it's not a direct challenge if you will to what the first person said.tell be my job as an imperfect human, tell be my job to try to discern which one thatis, what i assure you is that based on personal behavior characteristics, if i make a passionstatement and dr.�mayer here disagrees with me completely, tell be hard for me to sithere if dr.�hull�is the next guy in line
and i want to be able to respond to dr.�mayer,if the sense is that it really needs to be worked out before we continue to go, for theoverall purpose of getting the thought worked on and pushed through, then i will go backand do that. so i would appreciate your cooperation withthis and your understanding, recognizing that there are those around the table that willthink i'm completely wrong thal, private by all means, tell me, help me understand, thisis as much a learning process for me as it is for everyone else, it is absolutely importantfor us to realize there are no bad ideas that come around the table.there are some that are better than others and some that ultimately don't survive thetest of time but it's important for us not
to simply think that, well, you know that'sreally a bad idea because it may not be the correct idea at the correct time but i thinkwith??the goal here is for everyone to feel free to express the ideas that they have toexpress and then finally, again, going back to what wanda was talking about earlier, thismorning. one of the things we're going to do, and we'lltalk much more about this, as the meeting wears on, a new format that we'll developto help is a more idea slash recommendation focus work groups outside of the committeeitself which will be useful for us to develop specific recommendations so that the committeecan then discuss, debate, whatever in an efficient time frame because remember none of thesethings go anywhere until the entire committee
approves them.so that is the way it's set up by federal statute.we can do discussions outside as long as we're not putting ourselves together as an entirecommittee because we're a public committee and we cannot discuss fully as a public committeeexcept in front of the public, that's what a public committee means.it does not mean that subgroups, subcommittees, et cetera cannot do that.we have operated primarily by topic related subcommittees up until now.research based or advocacy or patient based, and we're going to see how that evolves butas we develop these work groups. we're going to see, the goal is??this is nobody'sday job around this table, except for nancy
and marty and even then??well, yeah, let mefinish. and even then it's more their afternoon andnight jobs. see you stole my thunder, i was all readyto say something nice. we all do this again because of the passionthat we have for wanting to advance the cause of research, patient care and advocacy withpatients with mecfs, so with that, we will move to the next things that we need to dowhich are to approve first of all the october�2012 cfsac�machineutes.yeah? , kim, please?>> i have a quick question. will the liaison members be participatingon subcommittees and working groups as well?
>> absolutely.>> okay, thank you. >> the ex�officio's, just so everyone knows,they participate and the liaisons will, we consider you to be a critical part of thisgoing forward as we develop these things. yes.>> may i propose the minutes? >> yes, please.>> i'm not marked present in the list of people who were there, but it's evident they washere based on reading the transcript and i would ask that be corrected please.>> or it could be a spiritual thing. >> i think it was a mistake.>> [laughter] >> all right, that will be done.it will be noted.
a motion to accept?>> please? >> so moved.>> with the change. >> with change.thank you. >> all in favor say aye.>> aye. >> any opposed?great. >> gailen?>> move o gba. >> special permission to have an extra dayto complete reading the minutes and offering modifications if i have any?>> sure. that's fine.>> thank you.
>> okay, let me talk to you just a minuteabout??so this is really directed at the folks back there, and in the public, this that imentioned a moment ago and this is the new way of trying to see to get more realtimeand i put that in quotes because it's not absolutely realtime but it's closer, publicfeedback in aneredderly fashion what has been made available to you or if not will be ina moment are half page place for you to be able to write a question that you have.this is not at this moment for comments that you want to make because again, we gotta startsomewhere and what we're starting with is that based upon what you will hear in thecomments that will be made today and this day's session, you are welcome to write aquestion about what??well what about this,
well what about that and so on.those questions will be collected during the break and will will be collated because generallyspeaking and i've done this format a lot in national and international meetings is thatsometimes different people, write the same question different ways so can you put themtogether and say, there were three questions that really relate to this.the committee members will then be called upon to answer the question.we'll guess who the best person is to answer it, if somebody elses wants to add to that,they can. and basically within the time frame that wehave, which is allocated a half an hour today on your schedule, tomorrow is listed 15 minutes,i believe it's important enough they extended
that to 30 minutes tomorrow.so there will be 30 minutes today and 30 minutes tomorrow but tell be related to what's goingon on today's agenda and what's going on on on tomorrow's agenda with the attempt to engageyou in conversation that we have. whether we??several people have asked andi'll just say this upfront and we considered it, several people said what we want is wewant a chance to actually stand up and ask a question and strike up a dialogue with thecommittee. the consideration and i actually talk to someother advisory committee chairs who have and other hhs advisory committees, and the generalresponse was that this was a good compromise and it allowed you now, not trying to preparea month ago or wait three months or four months
until the next meeting, it allows you nowto question some conversation or some decision that was met and was a reasonable compromiseto try to keep things moving forward in an orderly fashion.if 10 people want to talk, which one of the 10 do i pick, which one of the three of the10 do i pick? is it the ones that stand up the quickestand i mean nothing but the most of respect when i say some of you can't stand up veryquickly because of the illness you have so it shouldn't be how quick you can stand up,shouldn't be how loud you are, shbt be what your last name begins with in the alphabet,this seemed to be a more reasonable way to tray.if it doesn't work and you think it's not
a good way??[phone ringing ]??i think thatand this morning we will collect??i say this morning today we will collect those commentsat 2:30. if you have to leave, give the??questions??sorry,give those questions to someone else and they can turn them in for you or to one of theofficials. there's a box back there as well.i was told i didn't know that part. >> all right, we're actually moving righton ahead, we're a bit ahead. so we'll see if we can??we'll use this timeup. we always do.so we'll turn next to our agency updates and the first one that comes up is the cdc.dr.�blay?
??belay.>> [indiscernible] >> ??my report is organized and we have educationinitiatives, study the [indiscernible]. this is the [indiscernible] final??productionwith collaboration with the??[indiscernible] you recall the video production as part ofchronic fatigue syndrome and it was moderated by [indiscernible] before the cme credit expiredin march of this year over 25,000 individuals have [indiscernible] in about??this includedabout 8000 private institutions and about 8000 [indiscernible].about 7000 continuing medical education [indiscernible] in the??[indiscernible] as of march�2013,i think, [indiscernible] visit the viedman crow tape??videotape message.now we just launched a new [indiscernible]
video production and this is a video of acms presentation, [indiscernible] issues and medical providers in there's [indiscernible]that are required before [indiscernible] and cfsac�inscription [indiscernible] at thisvideo launched this month, few weeks ago [indiscernible] there will be over 3500 [indiscernible] andthe 700 [indiscernible] and the video production is moderated by [indiscernible].now last year, december of last year we had this nice commentary [indiscernible] on thecdc web page and in that, what was entitlessed to back to school providing [indiscernible]educators and the cfs in [indiscernible] and probably before that sensitive in the website, in that web site translated??we're currently producing content for a cfs pediatric andadolescence web site and that's in production.
it includes fact sheets, information for healthcareprofessionals, parents and teachers in in content, cfs content is going through cdcclearance and we hope that that will be valuable. and you probably also recall about the videoproduction taken??they we've been working on using a standardized case patient, standardizedpatient for educating medical students and that production is almost finished.tell be posted at the portal and the med?ed�portal has slides and curriculum available for medicalstudents and teachers on that portal on that web site and which is maintained by an associationof american medical colleges. and in the standardized station video productionis now ready for clearance, going through the cdc clearance, it went through field testing,with selected medical students, and we got
feedback from those medical students and thatwas incorporated into the video production and as i say, this is going through clearance,at cdc and after its cleared through cdc, before it's posted on the med�portal, ithas to go through a peer review process and that's a standard for posting any videos oreducational materials on that portal. and this is regarding the multiside clinicalstudy that wanda jones mentioned earlier. just to briefly describe the study, the objectivewas to capitalize on the clinical expertise of physicians or experience that in the experiencein the care and management of cfs�patients and to collect the data available in thosesites and in standardized fashion and cfs among and hopefully to make the data availablefor evidence based??for evidence based assessment
of the case definition and fcs subgroups,so once the data are analyzed and collected and analyzed it would be??it would be availablefor this particular effort. the enrollment criteria is described hereand the exclusion krist kerria is for hiv is not included in age of diagnosis more than62 years was also an exclusion criteria. here the seven clinic sites, basically a who'swho of cfs, prominent members working on the cfs care in patients, and this is in the geographiclocations in the map. and the protocol for the study was developedin collaboration with the pis on those seven clinical sites and it involved physical examinationof the patients, in the seven clinical sites, and self?reported measures that's collectedthrough a questionnaire and then data abstraction
that's already available in the seven differentclinics, so it involved an extensive data collection basically on each patient.and as it was mentioned, dr.�ung er�presented the preliminary findings for that study orpreliminary analysis of the study, the fda drug development workshop.in the terminals as indicated there heterogeneous row generated aity of cfs as a whole and alsobetween different clinics but the phenotypic majors seem to be limited in their abilityto identify the subgroups. again this is preliminary analysis of thedata. and we aimed??our original objective was toenroll 450 patients and we have met that objective and so we have enrolled 450 patients and thedata collection has been completed basically
95% of data that we need to collect on thosepatients has been collected. now we have phase two of that study and phasetwo of the study would involve following up on all the??450 patients in all the clinicsto try to collect some clinical specimens, including blood for dna and rna extractionand also saliva for kort??cortisol�findings. and we would do the studies in selected clinics,in additional studies would include enrolling controls both healthy controls and ill patientcontrols to basically collect the same kind of data that was collected on all the 450patients will be collected from the controls, both healthy controls and the ill controls.and then we also plan to enroll pediatric and adolescent cfs patients and controls asmuch as we can.
and the irb approval for the second phaseof the study has been completed and it will be launched very soon.now this is describing the other laberations and activities we had at cdc and you're probablyfamiliar with what we call the pica code which is cfs patient?centered outreach and communicationactivity. this is a conference call, has a conferencecall format and we have 15 minutes devoted for update from the cfs programs from cdc,20 minutes of talk by an expert who will be invited to provide that presentation, andthen 25 minutes devoted to answering questions that are submitted from patients.we will have a mail box, that's available to patients and advocacy groups to submitquestions ahead of time and in those cases
questions will be answered during the 25 minutesat the picoca�code. and the most recent one we had was in january.nancy climbus, dr.�climbus was invited as an expert to present and she presented onon redefining exercise and cfs through reconstruction of are??administrative??aerobic capacity anda summary of that is availableot cdc and cfs web site.and recently we'll have to increase the call lines to 150 because of the increasing demand.and i mentioned about producing content for pediatrics and adolescent cfs and we're actuallyconsulting with experts about the content of that particular web site.i think that's pretty much it and if there are any questions?>> we have time for a couple of burning questions,
ieleen.>> thank you for that presentation, i was wondering if this would be the right timeto make the cdc review panel up date? ??update.>> no. >> okay, when would be the time, i didn'tsee it on the agenda? >> we'll work it in eileen, it wasn't partof the agenda, we'll work it in and we'll talk about it at the break.>> thank you because i did make numerous requests and i do it at every meeting.>> any other questions? yes, sue?>> hi, thanks for an good update on cdcactivities, i did have some questions about whether ornot you??[ no audio ]??
[ no audio ]we're all targeted to positions and i think that nursing is a??well, it's the largestgroup of healthcare professionals there is obviously there's an interest and i don'twant to speak for my other nursing colleagues, rebecca or lori, but i think we'd be interestedperhaps in this discussion at a future time about how we might reach out to this verylarge and obviously interested professional. >> i'll jump in just to make the comment thatthat will actually be addressed in that program tomorrow with the specifics as it relatesto nurse practitioners but it may be important to put it with the nurses as well as nursepractitioners, that will be addressed tomorrow kim,.>> we're running out of time so please make
these very short and directed to the doctor.>> thank you dr.�belay, does cdc have plans to make the data from the seven site studyavailable through the rcdc, the way that cdc aggregates data and make its available tothe public for approved use? >> that's a long process, you know puttingit and you probably have experience that we did it last time that usually takes on a verylong time but immediately we would have to analyze the data ourselves and make it availablefor preliminary analysis as i say has already been done and we continue to collect additionalinformation so and collect information analyze it and eventually future we would considerthat. >> last question?>> i may have three so you may have to cut
me off briefly.>> beth ung er�have gone round on training verses continuing medical education onlineand my personal belief is that the trained trainer program encourages and gives toolsto physicians much better than continuing medical education courses online, that beingsaid do you have any evidence that there has been an increase and effectiveness of diagnosisand treatment based upon the presentation or treatment online.>> that will be extremely difficult to capture in my opinion what the cme does is capitalon positions??cme does is to is to have to take questions and answer questions and get them right before they get those creditswhich means can you measure how much they have understood the topic area or subjectarea and that's why the cme mechanism is useful
and whether or not that actually translateinto improved management or difficult to carry, i think it will be difficult.>> we have to move owe still have three more groups to speak in the next 20 minutes.we'll come back to this, dr.�belay will be here for the entire meeting.so you're not going to get all your questions in for each of these but there will be timethis afternoon to further question him on some of the things he's reporting, okay?great. snore our next report is from cms and that'smiss alaine�perry. >> thank you, we appreciate those of you whotook the trouble to travel here and those at home, so i'll be brief and i'll help wuyourtime challenge gailen, and i can be brief
because we're actually having two speakersduring the course of these two days who are going to speak about activities of cms, ofmy agency one will be talking about the medicare coverage process, the process for making decisionwhatmedicare covers and the other will be talking about the new health insurance marketplaces.that will be rolled out, so i won't address those in my update so i want to mention acouple things. i always like to just??for the benefit ofpeople who are newer here, explain what my agency does, so those who have heard this15 times feel free to ignore me but basically cms runs the medicare program which everyone'sfamiliar with andee also run??and we also run the federal portion of the medicaid andchildren's health insurance programs which
are joint federal is state programs.we also have a new role that came about with the ofordable care act which is we are administeringthe federal portion, working with the states toxic effects implement the new health insurancemarketplaces and we're also responsible for regulation of the various consumer protectionsin the private insurance market that were created by the affordable care act and alsohave an important role in again working with states and localities ask private organizationsto inform consumernew health insurance options and about their rights and protections underthe affordable care act. i always like to make a pitch for healthcare.gov.excellent web site, user friendly and it can help people to learn about what type of insuranceoptions might be available to them and other
information about rights and information asconsumers and so i just want to mention that and there are people with the disease on ourprograms, one of the ways we can become eligible for our programs are if someone qualifiesfor social security disability benefits, due to illness they can become eligible for medicareafter a waiting period. there are people who are on ssi, they canbe on it and it will be expanded to more people and more categories of people who are lowincome so there will be other eligible opportunities there so it's an issue that we really careabout. the other thing i want to mention, i talkedto the committee about in the past is the center for medicare and medicaid innovation.this was created by the affordable care act
and it's goal is to, design, test and evaluatenew models of service deliver schepayment in healthcare??delivery and healthcare withthe goal of delivering quality and reducing cost through improvement.they've rolled out a number of initiatives and they've been up and running for a numberof years now. had a number of initiatives and eye talkedto but this in the past. the latest update is they have just announceda new funding opportunity and i did send this out to the committee i think last week whenit was announced but i just wanted to mention it again now, basically it's called healthcareinnovations, awards round two because they did another round about a year and half ago,i think and they will be spending up to one
billion for awards and evaluations, projectfrom across the country that tests new payment and service delivery models to deliver bettercare and lower costs for medicare, medicaid and the children's health insurance programenrollees. the models don't necessarily have to enrollonly people from those programs is my happening but they have to be and they have severalcategory of focus that they're looking for and one of them is models that improve care,one that's relevant to this group is models that improve care with populations with specializedneeds. they also specify they specifically want applicantsto propose testing of new payment models to care for the population that they're dealingwith so there's a web??can you go to the web
site to get more information the web siteis just cms.gov and you click on the center for medicare and information and can you goto the top and you go to the web site and they have more information and i am also happyto talk with anyone after the meeting to discuss this.that's all i have. any questions?>> any burning questions for alaine,. >> again both of these presentations latertoday and tomorrow do have question and answer sessions built in at the end of the session.if not, we move on to the health resources services??i should have said hrsa, and that'sbeth collins, shop??well, okay, unless you want to shift over??deborah?>> so i want to say welcome to our new members
and so today, basically my i'll be givinga quick update on some of the programs that hrsa is involved in but first i would liketo do as alaine�just did, give you a quick overview of our program.so hrsa is the healthcare agency that focuses on access to healthcare services, providessupport to health professionals and to communities to increase the access to healthcare.the budget is about eight and half million and it's been around the agency??been aroundsince 1843 or different forms or other and it oerates through six??operates through 10offices and the bureaus that you might be include with is the bureau of primary healthcareprogram, that would be the community health center netnetworks and school based clinicand includes maternal and child health bureau,
the programs, the state block grants fromthe children with special healthcare needs and and a number of programs focused on childrenand women and pregnant moms the hiv/aids bureau that targets primarily states and cities andcommunities that are burdened by hiv/aids and provide direct healthcare services andguidelines, the bureau of health professions help develop the workforce and also the bureauof clinician recruitment services focus on supporting scholarships and loans to providersto encourage them to work in communities that are high needs so that would be the nationalservice core program so i would want to focus on a few highlights for those that differentbureaus that might be of interest to this group in particular, the hrsa's health centerprogram has been expanding in response to
the health act and increase funding for healthcareservices and in particular for things to think about, just an update on the health centerprogram there, and the health center is approximately 8500 health centers across the country currentlyserving patients from communities, those health centers are funded through the bureau of primaryhealthcare, based on the shortage area scores and medically??medically underserved areaand population scores so our resources are targeted to those communities that are underservedand are requesting support for need for access to healthcare services.in the driver of that is this dezignation process and i'll get back to that in a minute,those health centers are governed by community board so over 51% of the board health centersare from the community, they help make decisions
about pryeritizing healthcare services, abouteverything that goes on in that community is governed by that community board and thenof course, as i said, there are charged to provide comprehensive primary care and thereally sweet spot for communities in need is that they receive patients regardless oftheir ability to pay, so they're sliding scales basedded on those??on the population's abilityto pay for that care. so so those are the number of communities,there are a number of sites across the country, another that's supported by the health basedcenter program and that is??those are centers as??[no audio] [� music �]??through a variety of grant programs and
teaching institutions and in addition thebureau monitors primary care workforce to insure that a number of providers that willwe need that we will be appropriate in the future and/or to??to keep a fingerot pulsein terms of what our current ratios are, of providers to patients and communities andalso this bureau manages the medically underserved population medical, the mua, mup, which isthe medical underserved population and hpsa, where they look at number of health professionalsthat are in a community compared to the need of that community.that particularly bureau has just begun funding a couple of programs that i think might beof interest to this group, one is an integrative medicine program and another is a coordinatedcenter for integrating medicine. this is a
first for hrsa and the integrative medicineprogram are grants, there are 12 of them, i believe, currently, geographically dispursedand i can provide that information and will provide that to the group here.for those programs they are preventative programs, primear illegals schethe focus is for themto incorporate evidence based and integrative medicine content into their existing preventivemedicine residency training to provide to faculty as well, to engage and provide thatclinical teaching ask to facilitate the delivery of that information across those preventivemedicine but the rest of the healthcare professions arena.so those grants as i mentioned are to graduate medical education programs and preventivemedicine and i have a list of those locations
lomilnda, derby of connecticut, johns hopkins,boston medical center, regents of university of michigan, university of umd& j.university of medicine and dentistry in new jersey, university of north carolina chapelhill, harry medical chej, that's the group of preventive medicine integrative medicineprogram grantees. the program also has a national coordinatingcenter for epithelial greative medicine so that's thentity that will be pulling togethernine data proviedmanning??dog evaluation of that impact and of the type, the curriculaand all kinds of evaluations of that particular grant program that i just mentioned that nationalcoordinating center also provides technical assistance, tell collect data, it will providetraining on disseminating and responsible
for disseminating the best practice that areidentified. that center is??these are all just fundedin the last couple of months actually and that center is located to the american collegeof preventive medicine on massachusetts avenue here in washington d. c. so i think that's??thatwould be??an organization that we will be following up with to learn more about whatthey're doing. so in summary, i just want to give you a quickoverview of sort of 16,000?foot view of hrsa, and a couple things we do and a couple programsthat might be of particular interest and we focus on increasing access to our health centers,we focus on idebt dentifying??identifying health professional shortage areas and populationareas, we focus on empowering and strengthening
the primary healthcare workforce and havethis new focus as we mentioned on integrative medicine.i do have the criteria as well for the medically underserved population dezignations, somethingcalled an exceptional medically underserved population that basically is for those populations,where??let's see the dezignation if unusual local condition which is are a barrier toaccess to or the availability of personal health services exist and are documented andif such a dezignation is recommended by the chef executive officer or population resides,so this is all??this is a process that is driven by populations themselves or drivenby communities if there is a particular need that is unmet and those communities regardlessof our other processes that we have, all the
health professional shortage area criteria,they may not quite match that criteria because it's based on basic primary care providers,the number of basic primary care provider but not necessarily the number of treatersfor a disorder so this special population process might also be something that thisgroup would be interested in taking a look at.so that's it for me, thank you. >> deborah thank you very much and for thesake of time we'll move on to our last agency update for this social security administration.amanda wolfe, this time i got it right. >> good morning i appreciate the opportunityto be here on behalf of the social security administration, i will keep my update briefbecause at our last meet nothing october,
2012, we provided a comprehensive overviewof the social security administration disability program as well as our evaluation of claimsinvolving cfsme, so i encourage you to go to the web site to look at materials we sharedat that time if you want south america information about our disability program related to cpsand me and i encowage you to go to the social secure etics web site at social security .gov,if you have questions about our program, as well as if you want to file online, we'reencouraging electronic filing but of course we have field offices and a service centeravailable if we have questions as well. so just for a quick update social securityadministration does administer the disability program under the social security act fortitle two of disability benefits and title
16 for supplemental security insurance.with that we always constantly try to evaluate and update our policies as necessary.our current policy for evaluating cfs me to provide additional guidance is what we calla social security ruling, this is ssr 99?two p, there's a link on the cfsac�web siteand i think you're all fairly familiar with that.from time to??[no audio ] [no audio ]>> ??followed up with that particular recommendation and we're looking at, ways to be as economicalas possible and we'll be providing e?mail internet linked information, some of the informationjust shared this morning as well as other
information to our national health serviceclinicians as well as our grantee sites. >> it's 10:30 so we will have a break.we will start again promptly at 10:45 with the public comments.so take a moment to refresh yourself, restrooms are right outside the door and we have somestuff for the committee. >> and just a reminder, visitors need to beescorted to the cafeteria and we have people here to do that.thank you.