Dr. Nancy Le o, do we have other discussions, other topics for recommendations? Yes, Eileen. Eileen Holderma ue Levine just had to leave, she handed me two recommendations that she would like. They're pretty simple and straight forward. One is that she would like to put on the CFSAC website that link that the Department of Education spoke of yesterday with the Parent Organization for Help. Dr. Nancy Le think that's -- certainly our intention. Eileen Holderma ou've already done that? Okay. Male Speake inaudible] Dr. Nancy Le ell no, but the link, but we could actually link, you know, on the left side, we can put a link to that, so, I think that's a great recommendation. Eileen Holderma t is good. Dr. Nancy Le ecause we can make that happen in a few weeks-- Eileen Holderma eah. Dr. Nancy Le week. I think is a great website. Eileen Holderma nd the other one she had was to add to the CFSAC website a list serve of the name of the patient organizations, perhaps the one she said that she spoke today and others that come here. Dr. Nancy Le think we'll have to think -- look into that -- we have -- Dr. Martha Bon here's many -- Eileen Holderma here's many, but she -- Dr. Martha Bon inaudible] I would hate for us to set a priority and just the ones that spoke today but all the minutes will be posted as part of the public record, potentially still in discussion and probably in the fall we'll have five to six other organizations. I mean, I am not sure that I would -- Dr. Nancy Le ou all -- they can make the recommendation. Dr. Martha Bon h, sure. Dr. Nancy Le - You can make the recommendation. Eileen Holderma - If we want. Dr. Nancy Le eah, I mean, we just -- we don't want to show favoritism. Eileen Holderma kay. Steven Krafchic ell, certainly [inaudible] we can develop a list of automatic to organizations to [inaudible] -- Dr. Martha Bon eah, we can make that. Dr. Nancy Le ou can certainly make that recommendation, pardon? Steven Krafchic inaudible] Dr. Nancy Le e've been thinking about that for some time now. Dr. Sarah Willis-Fillinge t's a fair way to do that. Dr. Nancy Le think so, we want to be fair and we want to be inclusive and I get questions periodically about who can help me in this part of the country and it would be nice to have that. Again we have issues around who we can link to and who we cannot and would have to explore that but there are ways to that we can talk about that. Steven Krafchic an we get some feedback whenever our next meeting is on that issue? Should be -- Dr. Nancy Le h, absolutely. I mean we may be able -- hopefully you get your feedback before then. Steven Krafchic reat. Dr. Nancy Le o -- Steven Krafchic s that a friendly amendment to that one? [laughs] Dr. Nancy Le orry, say again. Steven Krafchic hat we recommend that the secretary develop or authorize people to develop a list of Advocacy Organizations that can be posted on their website. Dr. Nancy Le es. We have two potential recommendations, so let's do one at a time in a formal way. Can you give us the formal wording, Eileen? Eileen Holderma kay. Dr. Nancy Le nd then we'll have the second. Eileen Holderma t's Sue's verbiage, but we can craft it as we go along. That CFSAC recommends that a link be put on the CFSAC website of the Department of Education's help line, what is it called? Steven Krafchic ww.taalliance.org Eileen Holderma an you be more specific? [laughs] Steven Krafchic hat's the one I recommended yesterday. Eileen Holderma ll right, that one, okay. Dr. Nancy Le t's the Parent Organization for Help. Eileen Holderma o, let's see, did anyone write that down? Did anyone write it down? Dr. Nancy Le kay. It's the Parent, it's a state -- Steven Krafchic s it TA alliance or PA alliance? Dr. Nancy Le t's T-A. Steven Krafchic , as in tall, or P, as in Paul? Dr. Nancy Le as in tall. Steven Krafchic hat's what I said. Dr. Nancy Le ach state has one, so is each -- Dr. Sarah Willis-Fillinge - Teacher Alliance, taalliance.org Dr. Nancy Le eah. Steven Krafchic hat's what I said. Dr. Nancy Le eah. So, we have CFSAC recommends that a link be placed on the CFSAC website to the Department of Education's taalliance.org, and we can come up with a specific name when we -- Female Speake arent Training and Information Centers. Dr. Nancy Le kay, that's a better on 56Parent Training and Information Centers. Eileen Holderma ight. How about that better to be descriptive so people know they're clicking on the link, what it is. Dr. Nancy Le eah. And then we can, yeah, we can certainly if we put the link up there, which we would very much like to, we can put more information about what it is. Eileen Holderma es. Dr. Nancy Le o, do I have a second to that motion? Steven Krafchic econd. Dr. Nancy Le hank you. Any discussion? Steven Krafchic al question, let's just vote. Dr. Nancy Le eah, so let us vote, so everybody in favor please raise your hand. Steven Krafchic ye. Dr. Nancy Le kay, anybody opposed? Okay, I think that one passes. And then there is the other one of Susan's. Eileen Holderma he other one of Susan's was the recommendation that CFSAC make, also adding a link to this CFSAC website with the names of patient organizations -- or she wrote CFSAC listserve names of patient organization; a list serve is something that can be distributed out, she didn't put link but I think she meant link. Dr. Nancy Le ecause we have a listserve but that won't -- Eileen Holderma - Yes, you have a new listserve. Dr. Nancy Le ut that won't serve as -- Eileen Holderma ight. Dr. Nancy Le he wrote list serve but I hate to speak for her, she's gone now, but I believe she meant putting a link. Steven Krafchic nd we were talking about developing a list of patient organizations that could be put up with links on the website rather than -- as a way to do it. Eileen Holderma eah. Steven Krafchic s that okay? Eileen Holderma ea putting up a list -- Steven Krafchic evelop a list to put up. Eileen Holderma evelop a list, when do you -- Steven Krafchic y the next meeting. Eileen Holderma nd being inclusive, it would take -- there's so many organizations out there that are so great. Steven Krafchic wouldn't know how to do it. I would trust the staff could. Eileen Holderma mean, I would love to put a lot of organizations on the CFSAC website, it is a great resource. The question is how many are we going to put and which ones? There are so many great ones and they all offer different specialties. Steven Krafchic o, maybe that's the challenge of to come up with a list. Eileen Holderma kay. Steven Krafchic nd we could look at it next time. Eileen Holderma o, then we're not tabling that recommendation? Steven Krafchic o, we're making the recommendation. Dr. Nancy Le hat's another subcommittee project. Steven Krafchic e need to develop a list, so we know who we are going to put up on the website and approve and the procedure for approving or disapproving, you got to start with a list, so let's do the list. Dr. Deborah Willis-Fillinge o, how are we going to endorse some groups or not? How are going to decide who gets on the list and who doesn't? Dr. Nancy Le xactly. Dr. Deborah Willis-Fillinge nd how are going to be responsible for the actions of one group, you know, versus another group or whatever? Dr. Nancy Le ight. I agree. Dr. Deborah Willis-Fillinge eople can Google, you know, CFIDS. I mean, no -- sorry -- chronic fatigue syndrome support groups, I mean, they can search the web. Dr. Nancy Le o, we have to be careful with this so -- Steven Krafchic irst step would be to get a list and then we can talk about all these other things in the context. Because if -- I don't know, the list is 20 or 100, I mean, whatever it is, it is. Dr. Nancy Le mean, I hear -- I also share the concern is how do we make sure we're recommending a good organization as supposed to somebody that takes your money and doesn't do -- Steven Krafchic ou put the disclaimer up. Dr. Nancy Le ell no, I don't think we want to put a disclaimer, that's a legal thing; we want to do better than that. Dr. Lisa Corbi an we at least make the recommendation that we develop a list and then the development process will determine all the steps that would be necessary to say aye or nay to an individual. And I think while someone can Google the term it would be nice to have an official organization that people can trust that says yeah, we vetted these groups and this committee feels like they're reliable. Dr. Nancy Le get enough questions through the CFSAC mail box about things that I would like to be able to give individuals help on, and I always get a little nervous because I'm not -- except for a few organizations that I have met during these meetings, I don't really know that I can recommend with my entire soul. So it would be a very helpful -- I think is a process is not1 something we can do today.1 Steven Krafchic o.1 it's just a recommendation that we develop the list.1 Eileen Holderma ut then, but in essence we are1 recommending to the secretary that we're going to do it,1 do a task at some point and put on a link, is that the right?1 We wouldn't do that.1 Dr. Nancy Le t could be recommended that HHS staff work1 with CFSAC members.1 Steven Krafchic o develop a list1 of Advocacy Organizations.1 Eileen Holderma eah, that would work.1 Dr. Nancy Le nd we would, we could do that.1 Steven Krafchic t could be useful.1 Dr. Nancy Le nd which would include a way -- a list1 of CFS organizations that which will include a process to vet,1 or a process to assure these are -- help me -- these are, I don't1 want to say legitimate because they can be legitimate but1 worthy of recommendation to me.1 Steven Krafchic ow about to develop a list and criteria1 for posting them on the website?1 Dr. Nancy Le oes that?1 Does that?1 How does that sound?1 Eileen Holderma hat was that, Steve?1 Steven Krafchic evelop a list of Advocacy organizations1 and then criteria for posting them on the website, so that1 gives you the chance to find out what the rules are and1 ask to consider that.1 Dr. Nancy Le think I can go with that.1 What do you think Marty?1 Marty is my other set of ears over here, a criteria for1 posting on the website.1 And we're going to work with CFSAC members, so they would1 help us with that criteria, it wouldn't be just our criteria.1 Dr. Martha Bon inaudible]1 Dr. Nancy Le ll right.1 I can't, you know, do the chair and write notes, that's why1 I have Marty here because I can't do two things at once.1 We recommend that HHS staff work with CFSAC members to develop1 a list of ME/CFS organizations, plus -- and criteria for posting1 on the CFSAC website.1 Dr. Jordan Dimitrakof aybe a set of criteria.1 A set of criteria.1 Dr. Nancy Le riteria is already plural.1 And criteria, I think that works.1 Eileen Holderma nd are we limiting this to advocacy1 organizations or advocacy websites, you know like, because1 they are independent advocates that have --1 Dr. Nancy Le just think that we don't need to say1 advocacy; I think we can just say develop a list1 of ME/CFS organizations.1 Dr. Martha Bon inaudible]1 Dr. Nancy Le ight, right, right.1 Eileen Holderma rganizations or organizations1 and websites because there's like --1 Dr. Nancy Le - Well, we, that's one of the criteria that1 we might only be able to provide a list, we may not be able1 to provide links, we have to find that out.1 Dr. Sarah Willis-Fillinge nd the criteria maybe1 in individual [unintelligible] organization.1 Dr. Nancy Le eah, I think if we're as broad as we can be,1 we'll have more flexibility.1 Eileen Holderma o do you have to explore what you're1 allowed to do before we can actually1 make this recommendation?1 Dr. Nancy Le o.1 Eileen Holderma o?1 Dr. Nancy Le ou can make the recommendation.1 Steven Krafchic e can make the recommendation or find out1 what the parameters are.1 Dr. Nancy Le ight.1 Eileen Holderma kay.1 Steven Krafchic ne step at a time.1 Nancy C. Holderma eah exactly.1 You all can recommend whatever you want.1 Eileen Holderma eah.1 Dr. Nancy Le hat's the beauty.1 Eileen Holderma eah, but if -- what was that expression?1 You said before about the tool kit, it's pointless to make1 a recommendation if it is a no start?1 Is that what you call it?1 Female Speake non-starter.1 Eileen Holderma non-starter, we just want1 to make sure that what we are recommending is potential.1 Dr. Nancy Le e're telling you, well -- we will tell you1 if we didn't think this was a non-starter.1 Eileen Holderma kay, so, okay.1 Dr. Nancy Le don't want us to set up to fail here.1 Eileen Holderma laughs] Okay.1 Steven Krafchic ere, here on that one.1 Dr. Nancy Le o we have a second?1 Okay, let me read it again.1 We recommend to the secretary of HHS staff work with CFSAC1 members to develop a list of ME/CFS organizations and1 criteria for posting this list on the CFSAC website.1 And be assured if we can put links, we will.1 Because it just doesn't make sense in the 21st century not1 to do that if you can.1 Okay, so second?1 Eileen Holderma econd.1 Dr. Nancy Le ho?1 I thought you were the one to do the first.1 Eileen Holderma think Steve.1 Dr. Nancy Le kay.1 Steve?1 Okay.1 Eileen Holderma ell, actually I -- Sue technically.1 I'm the proxy, I'm Sue's proxy, I was taking her recommendation.1 Dr. Nancy Le es, Dane is here.1 Steven Krafchic inaudible]1 Dr. Nancy Le kay.1 I think we can just say, I think we have [inaudible].1 Eileen Holderma 'll make it -- I'll make it because1 I made it originally.1 Steven Krafchic nd I'll second it, call the question.1 Dr. Nancy Le ll right.1 Any other comments before we call the question?1 Okay, let's have people -- everybody in favor1 please raise your hand.1 Okay, I think I see unanimity here, good.1 Any other things that people want to put forward?1 Yes, Jordan.1 Dr. Jordan Dimitrakof had the recommendation from1 the Research Subcommittee.1 So we actually discussed this during our subcommittee meeting1 today during the lunch break.1 And we had the recommendation based on the discussion that1 we had in the morning on the biomarker.1 So the Resource Subcommittee would recommend that we would1 put together a white paper on by a marker definition for ME/CFS1 that can be use for future, clinical trials and treatment --1 clinical trials with treatment outcomes.1 Dr. Nancy Le o, is that a recommendation to the secretary?1 Dr. Jordan Dimitrakof think -- I don't know1 what we decided?1 Male Speake inaudible]1 Dr. Ermias Bela think you want to present it to the1 group for discussion.1 Dr. Jordan Dimitrakof ight, okay, maybe that's --1 Dr. Ermias Bela ecause this is a task for the1 committee, not for the secretary.1 Dr. Jordan Dimitrakof kay.1 So, then is not -- sorry.1 Dr. Nancy Le hat's okay.1 I mean, I think that the -- let's come back to that in just1 a minute -- before let's see if we got1 other recommendations. Yes.1 Eileen Holderma have a couple but before I do, I forgot1 -- remember what we talked about at the start of the session?1 We were going to ask the committee if there is a person1 here who registered and was approved to give testimony, and1 due to regulations or whatever, she didn't get testify.1 She's here and would like to give it, it's five minutes,1 it's up to the committee if we, you know, you said --1 Dr. Nancy Le said it was up to the committee.1 Eileen Holderma t was up to the committee if we would1 like to yield five minutes to an advocate here who would like1 to give testimony.1 Male Speake s that a motion?1 Eileen Holderma laughs]1 Male Speake would second something like that, if that1 were in the rules that we allow that.1 Eileen Holderma eah, I propose --1 Dr. Nancy Le don't think it needs to be formal -- I think1 this is just what you all can come up with.1 Dr. Jordan D. Dimitrakof kay, sure.1 Eileen Holderma kay, I would like -- she's, okay.1 Loretta Va inaudible]1 Eileen Holderma es please.1 Dr. Martha Dunca inaudible]1 Dr. Nancy Le eah, I'll let her announce her name.1 Please use your mic and --1 Loretta Va inaudible]1 Female Speake ould you push the button?1 Dr. Nancy Le here you go.1 Loretta Va hat you all are talking about today, I have this1 for 27 years, it's been part of my life.1 Dr. Nancy Le an you give us your name?1 Loretta Va eah, I am1 Loretta Van [phonetic], okay.1 I'm addressing today to share my experience, some of the symptoms1 of ME/CFS that some might be inclined to call1 a somatization disorder.1 A doctor called my illness chronic fatigue syndrome nearly1 eight years after I was diagnosed with myalgic1 encephalomyelitis in Hong Kong.1 Fatigue, even chronic fatigue immune dysfunction are words1 that do little to convey the enormity of the experience1 of living with ME/CFS.1 My own sudden onset first arrived disguised as a flu while1 standing in a breakfast buffet line 27 years ago, or stated1 in other way, half of my life.1 With help and time the acute period passed as I learn about1 my triggers, body signals and started to bargain with myself.1 Now when I'm able to venture out of my home, which is quite1 often, the cognitive problems are equally or even more1 personally debilitating than the isolation.1 The light shows and the disorientation occurring within1 my brain, or eyes, or ears remain background static1 to even flow stress movement stimulation.1 People around me can understand the bad flu, however is much1 more difficult for them to understand, or comprehend,1 or be patient with the consequences1 of looking healthy but cognitively1 challenged or stamina deprived and worst yet, inconsistent.1 Staying focused is another challenge with fatigue.2 Vast amount of time pass like a flash as everything takes2 so lon ill out a form, find a note, put on a shoe, remember2 what I was doing did I remember to eat, did I see the extra desk2 downstairs to sign in as a speaker?2 But since the onset of this illness my attempts at2 conversation are a source of embarrassment as I forget what2 I'm thinking while simultaneously attempting2 to decode words spoken to me.2 A few years ago there was a sense of old rolodex cards2 flipping deep in my head as I waited did for the meaning of2 words to emerge one at time.2 Functional communication was much worse several years ago,2 even now when I engage I am sometimes off-topic,2 incomplete or intense.2 Living a sheltered life, language becomes less2 of a problem, and less pushed beyond my energy envelope.2 When visual distortions of past years became less difficult,2 auditory problems began as memories of buzzers and beepers2 and other mechanical noises repeated mercilessly through2 my days and nights.2 Perhaps these are not common symptoms mentioned within the2 CFS community, but as you know many of us develop additional2 problems that are also not present in our family histories.2 An acute neurological form of lying challenged me temporality2 with bilateral Bell palsy loss of feeling in my feet,2 narrowing of vision along with changes of my heartbeat.2 The pain running through my spine with heavy footsteps2 lasted longer than the other symptoms; perhaps what2 I experienced was the failure of immune system and endocrine2 system to behave appropriately.2 Even before the line I had astronomically tighter counts,2 sore throat, years of swollen glands but not always,2 often I looked normal, I feel normal.2 It's when I go beyond the energy envelope I run into problems.2 For a while I experienced what felt like a swelling in my head,2 body pain ever changing nature as well as location and the2 inability to process medications or environmental exposures.2 And yes, sometimes stress related lapses in composure.2 Later, came the sleep disturbances and many seizures.2 We have all heard the story of the blind men describing the2 elephant by feeling one part.2 How to assess and assemble a comprehensible drawing using2 sketches by blindfolded artists who have only one random part2 they have access to explore.2 For if you have four people with ME/CFS isolated from all the2 other patients that may have been given the trashcan2 diagnosis, we may present differently in a single moment2 of time from each other as we do from ourselves on another day,2 a week, a month, or year.2 I do have experience my life or my illness as I did 27 years2 ago, and neither does anybody else I know with CFS who I've2 watched over the course of these years.2 I see the illness is a complex whole body experience that is2 loosely predictable over its evolution.2 Perhaps someday we'll look back and recognize the relapsing2 remitting progressive pathology of an illness with a particular2 course of some variation that is so common to so many of us.2 There is neither do or equitable with aging.2 Meanwhile, we're migrating to our position of statistical2 outliers within our communities, are employment opportunities,2 and our medical care.2 Thank you for your time and this opportunity to share.2 I fell ill on July 5, 1985 about in the morning.2 I was diagnosed with myalgic encephalomyelitis that same2 morning, in the hospital, with many2 of my study abroad classmates.2 We were unintended partakers of a known epidemic in mainland2 China that I am unable to find documented anywhere.2 Thank you.2 Dr. Nancy Le hank you very much.2 [applause]2 Eileen you said you had two?2 Eileen Holderma hank you Dr. Lee for, you know, allowing2 the committee to allow her to, yeah.2 You know, yesterday we had a great session on pediatric2 ME/CFS and I came away with a lot of things and I did look2 back at the past recommendations and I forget how many there were2 maybe about six relating to pediatric ME/CFS and/or2 education, but I didn't see at least I don't remember seeing2 one that involved a concerted effort to educate our educators.2 And that seemed to be a big problem with, you know, the2 parents and the kids that we talked about, talked with2 yesterday, that so many of their ongoing problems would be nipped2 in the bud if the teachers, nurses and guidance counselors2 would be, you know, would be educated on this disease,2 it would make them not have to go to court and experience2 financial loss and patient getting sicker.2 So, I'm thinking we could make a recommendation that involves2 getting the information out to the schools and I don't know who2 we would ask, if we return to the2 Department of Education or the DHHS.2 I don't know which agency we would ask for that kind2 of -- or do we even have to be that specific2 in our recommendation?2 Do we just make a recommendation to the secretary that says, "We2 would like for, you know, grades from kindergarten to high2 school, teachers, and nurses, and guidance counselors2 to receive either written information or DVD,2 something like that.2 What does everyone think about that?2 That's the just one thing I'm throwing out there.2 Dr. Nancy Le ileen, I can tell you that while the2 Department of Education and school systems are not the most2 common of the partners that HHS deals with, they do do this.2 MY particular experience has been at CDC, where they had2 cooperative agreements I think with every state Department2 of Education around HIV education and for doing surveys2 among high school students for health behaviors.2 And so HHS does have experience in partnering with the2 Department of Education and state Department of Education.2 Eileen Holderma nd you mentioned for HIV?2 Dr. Nancy Le ell that's just my example there may2 be others, that's my experience and my knowledge.2 Eileen Holderma o it's possible that you could DHHS and2 DOE could partner for this type of thing.2 I think that would be a worthy recommendation2 what did everybody think?2 Were there more pressing things that came out of that session?2 Dr. Lisa Corbi ou know I, again, I apologize for not being2 here yesterday but I recall one of the patient advocacy groups2 was preparing to prepare such a document it sounds like.2 Something that was going to go out to school nurses and2 so it may be -- the recommendation is2 that we endorse the group's work and help2 with distribution via connections with the2 Department of Education perhaps or something2 of along those lines?2 Eileen Holderma oes the DHHS partner with advocacy2 organizations or you would --[inaudible] Yeah, I mean2 because they have done a great deal of work, the New Jersey2 group in this and you wouldn't have to reinvent the wheel.2 Dr. Nancy Le e can't endorse, you all can endorse2 what you want to endorse.2 We can't endorse something without, you know, we've already2 been through that topic.2 Dr. Sarah Willis-Fillinge eah, I recommend just, I think2 your recommendation is a good one, if you just ask, make a2 recommendation that HHS partner with or work with the DOE to2 provide information or education for teachers,2 and nurses, and others.2 I think that would be broad enough, so that you're not being2 prescriptive about the how but just the what.2 And I think that would allow us to be successful.2 Eileen Holderma think you're right.2 I think to keep the general like that because, yeah.2 Mary Ann Fletche ne area that we might seek guidance in,2 would be with those people who deal with autism.2 They probably have a lot of experience and have to try2 to change the educational environment for children with2 autism and it would be sort of related to this.3 Dr. Nancy Le think that was in many ways3 very much advocacy-driven.3 But, yeah so -- she needs to come up with what she3 wants to say.3 Eileen Holderman; Someone from,3 like Mary Demick [phonetic] wants3 to be recognized.3 Could she be recognized?3 Mary Demic he one thing that I think might help in this3 is to think about, we talked about the primer before3 and using that to educate primary physicians.3 It might also be good to think about that kind of material3 because just using what we've used before is what's gotten3 us into this state that we're in.3 I think what you referred to was specific advocacy information3 that was provided there were a couple of different3 organizations, I don't know if it goes into the medical3 specificity that the primer would and it's that kind3 of information, from what I understand, that could help the3 educators understand the nature of the illness3 and better support patients.3 Dr. Nancy Le think, was it New Jersey that said they3 were coming up with --3 Mary Demic hey were working on it,3 and also Faith Newton [phonetic] mentioned a document that she3 pulled together but I think it was more in what rights you3 have, et cetera a patient in the school systems.3 Thank you.3 Eileen Holderma hank you Mary.3 Yeah I also thought about the primer too, that I don't know3 if that's the right fit if educators would sit down and,3 school nurses would?3 Like New Jersey's doing like a fact sheet I think which and3 they've written very successful fact sheets, I guess what do3 we think educators would read and respond to?3 A lengthier document or a fact sheet?3 What would be most helpful?3 Dr. Lisa Corbi think a fact sheet with the link to the3 lengthier document if they have, you know a student that3 is seriously affected, that they need that level of information.3 But otherwise they won't read it.3 Dr. Jordan Dimitrakof ut it might be helpful on the other3 hand if there is nothing out there, it might be helpful3 to have a primer like Mary was saying.3 I mean the fact sheet is good, just that as a fact sheet, but3 just in case you need to go back to document, it might be helpful3 to have something like that.3 Eileen Holderma nd I don't want to -- we don't obviously3 want to replicate something we've already recommended, again3 I did look back at the recommendations from the3 last 10 years.3 I don't recall seeing that specific recommendation,3 does anyone recall?3 Dr. Nancy Le think keeping it broad --3 Eileen Holderma eah.3 Dr. Nancy Le - is a good way to go.3 We are working with the agency or administration for children3 and families within our ad hoc HHS work group and they're3 already talking about some of this.3 And I recall yesterday that Dr. Huel [phonetic]3 was like right there.3 Said, "I am here to work with you".3 So I think there are many opportunities and I think3 it would be unnecessary to get too specific, at this point.3 Male Speake think the flipside of this3 is that at the same time --3 Dr. Nancy Le an you speak a little closer?3 Thank you.3 Male Speake think the flipside of this is that at the3 same time you try to disseminate the primer, you also need3 to remove the toolkit.3 I read a story just the other day where a parent of a CFS3 student had the school system actually pull out CBT and get,3 and all this other stuff from the toolkit, and go overhead and3 say you know "You're not doing this and you need to be doing3 this" even though she was trying to educate them with her own3 materials -- So if you leave that up at the same time that3 you kind of disseminate the primer,3 then you know what really happens?3 Dr. Nancy Le kay.3 Thank you.3 Eileen Holderma eah I mean that's a good point and that's3 what I was talking about with Ermias and Beth was the timing3 of the toolkit when I was, when we had our teleconference3 recently and the fact that so many of those toolkits recently3 went out you know that is a problem and that the revisions3 won't start on the toolkit according to Beth until 2013 and3 I don't even have an exact date.3 So doing one really good thing like disseminating good3 information while at the same time information