Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, June 13, 2012. 4:30pm to 5:00pm

>> Dr. Gailen Marshall: Thank you Dr. Lee.
The last little bit of this is time for a bit of discussion
among the committee members and a little bit about what
we're going to do tomorrow.
Let me take chair's prerogative and start the discussion with
what has been mentioned several times this afternoon, and that's
the new primer, I guess depending on what part of the
country you're from, for clinical practitioners the --
how many in the committee have been able to see this?
This is just for the few people that might not know this has
just recently been released.
It's not something that's been around for very long.
How many people have had a chance to actually read it?
Okay.
So for -- I know you guys have.
Somehow I'm not surprised to see all those hands out there.
First of all to thank Nancy Lee for making the decision
to actually put this in so that we could take a look at those
that have not seen it yet.
For those of you that have read it, how about some brief
comments of what you see as the strengths.
Do you see any particular shortcomings in it?
any challenges with it, et cetera, recognizing that --
and I talked to Lenny when they were close to seeing this I saw
an early copy of it and the authors just so that you know,
when we all know, the authors do not hold this
out as the final discourse.
They hold this out as the latest chapter in the dialogue and the
progress in understanding, helping clinicians to understand
how to better care for this.
Let me start for just a second, just again for the clinicians
that are taking care of ME/CFS patients, doesn't that have
to be just physicians.
If you're also doing it, you know, taking care of them in any
aspect; and then Steve I want to get your perspective as the one
that represents and advocates for them in court, and just try
to be methodical about this.
Susan, I see that -- I know that you read it.
Give us some of your thoughts.
Use your mike.
>> Dr. Susan Levine: Yeah, I think obviously it's very
well put together.
It's both you know, covers that complexity of the illness,
but I think its succinct enough so people won't be put
off by, you know, enormously didactic type of document.
And I think it offers some good solutions in terms of you know,
what some medications are that offer symptomatic relief
in many patients.
And I think actually, one of the most useful things is in the
back where you have like a worksheet, and I'm not involved
in several clinical studies where I find these sort
of worksheets helpful in terms of checking off what, you know,
what clinical symptoms are relevant and whether the patient
meets the facade criteria of the Canadian criteria.
I think the pediatric worksheet is very helpful and you know,
overall I think it's quite good as kind of a starting document.
I think it could use some refinements, but I think
that it's very good.
>> Dr. Gailen Marshall: Okay, we'll come back
to that in a minute.
Jordan?
>> Dr. Jordan Dimitrakoff: I haven't had a chance to look
at it, I'm sorry.
>> Dr. Gailen Marshall: I'm sorry; I thought
I saw your hand up.
I apologize.
Dane?
>> Dr. Dane Cook: I think the openness to the evolvingness
of the document is a strength of it and they're very up front,
and I think for the most part it's quite balanced.
I think it is with a few exceptions, very careful
in its approach to the path physiology, the treatment,
and I think that's strength of the document, again
with a few exceptions.
>> Dr. Gailen Marshall: -- a little bit disappointed because
there's people around the world that have been working for
several years on biomarkers for chronic fatigue and there's just
not a single one here --
>> Male Speaker: They do reference your 2000 --
>> Dr. Mary Ann Fletcher: The -- in their tests to be considered
depending on symptoms, there's only immunoglobulin's which
really won't help you at all.
There's -- morning cholesterol might.
The rheumatory factor would be just something that should
be done to eliminate another disease.
On the table one, we find a marker for inflammation,
c reactive protein which is probably the most non-specific
analyze that could be looked at.
It's elevated and almost everything.
So I just hope at some time or other, our working group will
begin to include some of the things that we have shown to be
objectively different in chronic fatigue and compared to control.
>> Dr. Gailen Marshall: To respond to you on behalf
of Dr. Jason, I asked that very question of him when I saw
an early draft of this, and his basic response was the consensus
among the group in this was that those biomarkers are research
tools and this is a tool that they're trying to use for
clinicians to bring them up to speed.
They did not intentionally, at least, eliminate
the work that's been done.
They're not easily available, I can tell you.
Ask the clinicians around the table how easy it is for you
to get a serum aisle five level.
Can you get a serum neuropeptide wide level?
You can't get those clinically.
So the problem -- their intent -- oh of course.
Post paid or postage due?
I was just checking.
We got you on camera now so be careful.
I think the intent was to separate what I think most
people do agree and I agree with you, CRP is not my favorite
biomarker either, but it is one that has extensive, as you well
know, has extensive use and application
in clinical inflammatory diseases.
So that was their intent and I think part of the refinement
will be to give them that feedback; and I use the old
argument that a lot of tests in that -- there was a time I think
you and are senior enough to remember when C reactive protein
was really still a research test, and what they had with the
old wind robe [phonetic sp] sedimentation rates, and that's
what they use for inflammation.
And now -- well yeah, it's still there, but CRP, which is now can
be done, you know, high profile, high sensitivity CRPs for
various diseases and correlated; it was their intent to use
clinically available, shall we say, stuff for clinicians and
not to -- and I guess this sounds like I'm being disdainful
towards clinicians, and I'm certainly not, and I didn't take
it that way when it was told to me.
Not to confuse the issue with research information that
could not be ordered.
There are a lot of, just for the non-clinicians there are a lot
of illnesses now where gene mutations are actually defined
biomarkers, but there're only certain institutions that you
can get them done because many of the commercial labs don't
do them, so if you don't know Mary Ann, the chance of getting
a neuropeptide wide level done on these people is less, because
you have to find somebody who can run it, and then you have
to know that they know how to run it.
no one would question Dr. Fletcher's lab does know how
to run it, but it's one lab out of, and all kidding aside,
I think she can only accept so many pro-bono samples to be run,
unless of course --
>> Dr. Mary Ann Fletcher: Yeah, the University wouldn't
like it if it did.
The -- you mentioned gene expression, and I really have
my hopes bound up in that.
I think that's a real possibility.
>> Dr. Gailen Marshall: I think many of us do.
We just have to bring the clinical pathologist along.
We have a -- they have a pediatric geneticist who screens
all the gene expression and gene mutation study requests for our
entire campus because I mean, we work on a state campus where
less than half of the patients have any money for
reimbursements where the hospital pays for these things,
and there're $1,000.00 to $3,000.00 a pop.
So part of this is just the logistics, and again, the way
I interpreted listening to what Lenny told me, was that the
intent here was to show what clinicians right now would
be able to do if they wanted to evaluate
and not exclude anybody.
Jordan.
>> Dr. Jordan Dimitrakoff: Just to jump in the discussion about
the gene expression.
I think we don't want to probably turn it into
a discussion entirely about that, but I think what you meant
is that there are really tests which we should look at the
genetic variations most probably SNP variations like single
nucleotide metamorphisms and I think there is one which
is clinically reimbursable for monitoring Warfarin levels and
the response Warfarin, but I think it really is the future
of probable looking at diseases like chronic fatigue syndrome,
and I mean, I think part of the problem realize in the fact that
the prices are going down, but we still don't have information
enough about what's normal and what's abnormal.
So here is a suggestion.
I actually knew a geneticist once who had this idea about how
you define the normal and the abnormal, and he had this
interesting idea about anyone walking into a hospital spitting
into a cup, and then you get their DNA, and you actually,
you can get the DNA from saliva, and you can save it somewhere
and you can create this huge databank because I think we're
probably getting to a point where we'll have, as we heard,
a lot of samples from people with chronic fatigue syndrome,
ME who are very well characterized, but then
we'll end up in a situation where we probably need to know
what is the normal, what is the abnormal, and I think we still
need to think ahead and be prepared for that time.
>> Dr. Gailen Marshall: Absolutely.
And by the way, I should say while we're saying this, one of
the audience pointed out to me that when I talk to fast
I say C S F and not C F S.
So CSF is cerebral spinal fluid, CFS is chronic fatigue syndrome.
So that's another reason why I'll be glad when they get rid
of that name because I can't talk straight.
So I'm good with that too.
Steve what do you think?
>> Steven Krafchick: I think you should put an ME in front
of it and you'll be fine.
>> Dr. Gailen Marshall: But I'd say -- it doesn't matter.
No I wish it would.
I still butcher it.
It doesn't really matter.
>> Steven Krafchick: The premier is really I think helpful
to somebody who really knows nothing about it, and it gives
the worksheets, it talks about lab tests, and most importantly,
it gives a differential diagnosis.
So the other things you should think about that could cause
the fatigue, which makes it something, I mean
as an attorney's done medical malpractice cases, if somebody
doesn't follow this, they've screwed up and they're
potentially exposed, and I just think it's a good start and
it's a document that's going to be evolutionary.
And we talked to Ermias after I kind of pilloried him up there
and I'm sorry about that, but in reality why invent a toolkit
when you've got a primer, and why not connect to the primer
if the IACFS would let you do that and put information that's
very current and very useful.
Those are my thoughts.
Oh, and they also talk about precipitating factors of which
they include physical trauma, and that's a first
I didn't notice that.
>> Dr. Gailen Marshall: Well this comes close to what many
different disciplines identifies practice parameters for existing
illnesses, and the issue though is those are usually put out
by a professional clinical organization; and as of yet,
we don't have a clinical organization for ME/CFS.
>> Steven Krafchick: Yeah, well that's because it didn't grow
up in any particular - I mean it started
in the infectious disease community --
>> Dr. Gailen Marshall: And then it went
to the immunology community --
>> Steven Krafchick: And then it got lost.
Whereas you look at the history of something like fibromyalgia
grew up and stayed in the rheumatology community.
The criteria were designed by a group of rheumatologists who got
together and said, "We've got to study this.
To study this, we have to agree on what it is."
So they came up with criteria.
>> Dr. Gailen Marshall: Well if we -- that's an interesting
point of discussion for this committee to discuss:
interesting point of discussions to discuss.
We should talk about it a little bit from the standpoint
of is this a primary care or a specialty disease?
And I think that the fact is, and it was suggested
to me earlier today, and I'd like to throw this out,
and I'll get to you just one second.
I hadn't forgotten you.
But the idea of you know what, I've been on this committee now
for a little over two years, and I went back to look at the old
records and so on, and I can't remember us ever as a committee
inviting anyone from the American Academy of Family
Practice, American College of Physicians, American Academy
of Pediatrics, the Primary Care, and I would put in that the
American College of Obstetrics and Gynecology,
is that right, OCOG?
That's right.
The primary care specialties and they do recognize themselves
as primary specialists for women.
I'd never -- I don't think we've ever invited anyone there.
The president of the organization let us tell
you about this, let us teach you about this.
This thing, in my view after having read it now in the form,
this thing ought to be sent out to the presidents of all those
individuals organization for dissemination of their entire
membership because you simply cannot believe that they're not
people walking in these doc's offices with these complaints
they don't know what to do, so they either call them crazy
or they throw them out.
And they don't do it -- I don't agree with, and maybe
it's because I'm protecting my own profession, but I don't
agree they're doing it because they're bad doctors or because
they don't care; I think they're doing it primarily because they
don't know what to do and they don't know how to deal
with it, and unfortunately in medical education sometimes
we don't do a very good job teaching doctors that
it's okay to say, "I don't know."
>> Steven Krafchick: Yeah, there are two things
that are driving it.
One, somebody comes in with chronic fatigue syndrome;
it's not a five or ten minute doctor visit.
>> Dr. Gailen Marshall: Absolutely.
>> Steven Krafchick: And two, there's a lot of ignorance about
what I can do as a primary doctor to help them; and those
two conditions make these patients, these people really
hard to deal with, and a lot of doctors as a result of that,
will just say, "Oh, I'm not going to touch that."
>> Dr. Gailen Marshall: Right, that's a fair --
and I overlooked you; please go ahead.
>> Dr. Ann Vincent: Thank you.
I haven't read this primer but I think it's a great start.
But I was just thinking about me sitting in the clinic trying
to go through page 12 in one setting.
I wouldn't be able to do that, and it would need the
coordinated efforts of some specialists to help me with
several of those spots; maybe because I'm a little spoiled,
but I think you know, I don't think primary care physicians
are familiar with the newly [unintelligible] hypertension,
what the definition of [unintelligible], and to try
to sort out, you know, that sleep is unrefreshing without
excluding all the exclusionary conditions at the first visit.
I think this is a great start but it really needs
to be simplified so that primary care providers
can make -- can use this.
>> Dr. Gailen Marshall: Okay.
Susan?
>> Susan Levine: Well I mean, I wasn't going to bring
this up until you raised the issue that you raised --
>> Dr. Gailen Marshall: So it's my fault?
>> Female Speaker: Well I think -- and I think this
is an important issue to raise.
Who ultimately takes responsibility for taking care
of chronic fatigue patients; and the problems I've encountered
in my practice over the many years are you know, I still
consider myself a CFS specialist, and I want
the patient to also have a primary care doctor, especially
as the population ages I want to make sure they get their
colonoscopies, their GYN care, and all that, and cholesterol,
and et cetera; and I don't want to have to worry that some
of these symptoms of the fatigue and so on are masking a silent
MRI or the onset of you know, insulin resistance and so forth.
So I think the primer is good for all you know, internists,
whether their primary care physicians are specialists,
but I think it would be good at some perhaps other point to have
a discussion about the sort of arsenal of doctors that somebody
with chronic fatigue syndrome should have.
Should they have -- should the primary care doctor assume
responsibility for the CFS care, and what if there isn't a CFS
specialist in that person's state, or city, or whatever?
You know, that would be something
for discussion I think.
>> Dr. Gailen Marshall: Well as I said earlier today, I have
people calling with some regularity; I have tried to get
patients into clinics even in my colleagues, and I can get them
in the fall after you know, and that primary medicine and family
practice clinics; family medicine clinics, I can get them
in July and August when the kids have just finished their
residencies and not have anybody in clinic yet.
But, anybody -- and there's nothing wrong with that.
These are -- half these kids I train in myself
or had a hand in training.
And the others are all I know to be quality young people
and quality physicians.
The problem is that in many cases, these are -- for exactly
what you just said; it needs some of that experience
so see the nuances.
Let's face it, ME/CFS is still a diagnosis of exclusion, and
you've got to make sure that they don't have any of these
other illnesses that may present similarly, but number one,
if they have a definitive therapy there, you can help
the patient get better a whole lot quicker then what we have
as a general armamentarium, and then of course number two
is that you don't want to leave something that's really serious
like some of the ones you mentioned untreated, because
then there's a morbidity and mortality associated
with that by itself.
Some of these kids are not very experienced in doing that,
so what they really need to be done is in -- it was in one
of these things that we've been reviewing today.
There are very few university based MECFS clinics, and I think
that's probably one of the major areas that we should start
pushing for is a university based clinic there.
As backwards as we are at the University of Mississippi,
that discussion is ongoing right now.
We're trying to -- there's several clinicians who have
expressed interest in the illness and I because
of my -- I won't do things that I can't do well, because
it drives me crazy, and I know how much time it takes to take
care of these patients correctly, and I simply
don't have that time.
I mean, I'm headed from here to Europe tomorrow and I haven't
been home in a week, and that sort
of thing happens periodically.
You can't take care of somebody with ME/CFS over the phone.
You've got to be there for them, and I'm preaching to your choir.
You two know this better than probably anybody
else around the table.
But there are doctors who would find this most fulfilling, most
useful, and we're trying to do it to set the model for other
institutions that might be willing to do it as well,
but you know what the immediate question is; how are
we going to support them?
You know, university doctors for the audience, it's not like
it was in the old days where the state pays all the salary.
The state actually pays a small percentage of the salary.
We have to make our living just like everyone else through
research funds or through clinical dollars, and when you
take an hour with a patient, they have something called
a relative value unit, or an RVU.
You don't get very many RVUs for that, and you don't get much
money for it.
So part of it is funding and I argue that if there's anything
that some of our agencies could help fund, it would
be something like that.
In an education mode, we're teaching young doctors how
to take care of these patients.
Alaine.
>> Dr. Alaine Perry: Hi.
I'll just step in on that.
I wanted to --
>> Dr. Gailen Marshall: Step in on it, not on it.
>> Dr. Alaine Perry: To raise the issue that the committee has
discussed in the past and the new members won't be familiar
with this, but hopefully some of the rest of you might remember
some of our discussions where we had talked about some of the
models that have been out there around
virtual learning networks.
We had talked about the project echo model, and when you were
discussing, you know, to the extent to which this
is a specialty care disease versus a primary care and
whether you can expect sort of the average primary care doctor
to be able to you know, handle what's in this primer
and to know this information.
One of the models that we had talked about; the project echo
model that we had looked at was a model where you have
an academic -- experts in an academic medical center who then
have connect out to -- they did their initial model with
hepatitis C and we're training you know, a single doctor
in a rural community, a PCP who would become sort
of the community resource, the community expert on hep C and
they would work with the academic medical center via
video conferencing to present cases and get trained in that;
and then they would be a resource to their community.
So you might not have every PCP in that community knowing a lot
about hep C, but then they would have someone they could refer
to who would be kind of the local expert, and I think we had
talked a little bit about having that kind of layering where you
don't need to have every PCP in the country having this level
of knowledge, but maybe you could train some, you know,
so you could have access; geographical access.
>> Dr. Nancy Lee: I think -- is that what you're going to talk
about tomorrow Beth?
We don't need to go into great -- but opportunities
for something like that.
>> Dr. Beth Collins Sharp: Yes, yes.
I'll use that as an example.
>> Dr. Nancy Lee: Yeah, but we're going to discuss how
in the funding discussion tomorrow how that --
something like that might be possible.
It's not something that the federal government originates,
it's something that is an application is made and then
applied to the federal government.
>> Dr. Beth Collins Sharp: Right, and I'm going
to discuss that tomorrow, so --
>> Dr. Gailen Marshall: Maryann?
>> Dr. Mary Ann Fletcher: I just wanted to say; at least people
think I didn't like this document when I criticized
the lab test.
I'm really impressed that I know at least three of these people
are really excellent primary care physicians, and that's
Roslat Yello [phonetic sp], I've been twice,
visited her in New Zealand.
She's just idolized there for her work in ME.
And Cindy Bateman out there in Salt Lake City has a splendid
clinic; and so and she's a general internist.
Chuck Lapp is a primary care doctor, and I think that from
their perspective, they bring a great deal of expertise.
>> Dr. Gailen Marshall: Yeah, you know, again I think some
of us are seeing enough to remember when somebody who went
into internal medicine was considered a high specialist,
and now they're generalist not really a specialist,
they're primary care doctors.
But since, in the old days they go to -- doctors would come
out of medical school, do a rotating internship,
and go into practice.
That was the average physician.
So if they went and did a residency, that very much was
a specialist, and there was no such thing as a sub-specialty
unless they happened to get interested in it.
But it raises an interesting question whether then should
we send -- should we send if we decided we wanted to go to ACP
and AAFM, American Academy of Family Medicine and ACOG, would
we want to go to the American College of Allergy, would
we want to go the American College of Rheumatology,
you know, how would we get the people involved.
And I would say at the very least, those that are involved
in immunology, their clinicians should know about that; whether
it's rheumatologists or allergist immunologists, I would
say that endocrinologists probably ought to know about
this in great deal because as Susan is pointing out,
the primary care physician and Ann pointed out as well,
the primary care physician can't take an hour to go through
things that she or he can't answer in their office anyway,
because they don't have the equipment or the set
up to be able to do that, but in terms of managing the illness,
it still makes sense that it would be a primary care illness
managed by trained and understanding primary care
providers, not just compassionate, but understanding
that understood the underlying.
You had something Eileen?
>> Eileen Holderman: I did a quick read on the primer
and like what I see so far; and I know that the authors of the
primer have a concern that I do, and I'll mention it.
this won't be the forum to fully explore it, but it's a great
document, but it just exists in a vacuum unless we figure out,
like you said, how to disseminate it and distribute
it; and so maybe we on CFSAC can have that discussion at some
point, you know, what do we do, what can we do as a committee?
Can we endorse it?
Can we ask for funding to distribute it to PCPs and
specialists, and would that come in the form of a recommendation,
or does it get on the agenda, or what?
>> Dr. Nancy Lee: I think that you all can make
recommendations like that.
The one thing that we probably need to look into before
are issues around copyright and who owns this.
>> Dr. Gailen Marshall: I raised that issue with Lenny --
>> Dr. Nancy Lee: And the government has to be real
careful with that.
>> Dr. Gailen Marshall: Yeah, well I raised that issue with
Lenny when we first started talking about this.
Yeah, yeah; Marty, why don't you just tell them what --
>> Dr. Martha Bond: We did receive permission to duplicate
the copies that you have now, but not to widely distribute
it and start making copies of the copies.
I'd even talked to Dr. Friedberg and let him know, and Lenny,
so I would also say we should be cautious about making copies for
anyone else from these copies.
There were -- the committee has these copies.
>> Dr. Gailen Marshall: This is intellectual property of the
individuals who have done the work and all of us who do that
sort of stuff respect it.
I have no sense that they want to be restrictive or that they
want to make a million dollars apiece off of this.
I've never gotten that sense, but they're working through
how they want to do this.
So I would argue that endorsing it, and I will tell
you why I'm telling you this now in just a second.
Endorsing it is something very realistic that this committee
can do, and commending it to the secretary for her office
to determine if there is a way for it to be utilized
in the context is a very real thing that we could do, and then
conversations with Dr. -- with that group, I guess
he represents -- he's a senior -- so you know with
Dr. Friedberg and the rest of the individuals as to what
are their copyright issues?
Do they want to license this?
What do they want to do before we say we want to require funds,
or get funds to distribute it to all these, because candidly, the
right way to do this it seems to me in today's world, is to do
an online version and hit the send button, and you can send
it to a million people like that.
And for older people who want to print it, they can print it.
for most of the people that would either download
it to their desktop or their iPad, or even they really got
good eyes, they can download it to their iPhone, and then they
can use it in the context in the office setting.
I'm not sure it's made it to that point of being useful where
they'll flip over and use it, but it's certainly will set
their thinking as they begin to see the individuals which
is what this document would move forward tremendously.
>> Dr. Gailen Marshall: You already figured that out?
>> Dr. Adrian Casillas: I put it on my phone.
>> Dr. Gailen Marshall: Well there you go.
>> Dr. Mary Ann Fletcher: The copyright it says
is by the organization, and --
>> Dr. Gailen Marshall: Well yeah, and it may be the --
>> Dr. Mary Ann Fletcher: I remember
that [unintelligible] --
>> Dr. Gailen Marshall: So are you -- can you speak
for the organization?
>> Dr. Mary Ann Fletcher: No.
[laughter]
>> Dr. Gailen Marshall: I'm just asking.
You could be president, Mary Ann, I don't know.
That's why I asked.
>> Female Speaker: [inaudible]
>> Dr. Gailen Marshall: You think what?
>> Female Speaker: [inaudible]
>> Dr. Gailen Marshall: You could say something?
>> Female Speaker: [inaudible]
>> Dr. Gailen Marshall: You can speak for the organization?
>> Female Speaker: [inaudible]
>> Dr. Gailen Marshall: Well that doesn't -- as much
as I respect you and what you say, that doesn't really help
us because it would have to be someone who could speak
on behalf of the organization in official capacity.
We'll figure out who that is.
>> Steven Krafchick: What I'd like to do is back up Eileen,
and I would make a motion -- I would make a motion that
we endorse this document and urge the secretary to look
at ways that we can make it available to the chronic fatigue
syndrome providers or primary care providers in the country --
>> Dr. Gailen Marshall: I'd like with a friendly, well do we hear
a second to that motion?
>> Female Speaker: [inaudible]
>> Dr. Gailen Marshall: Okay.
I'd like to offer friendly amendment to be more specific
to her about what providers -- the means to do that.
Again, the argument is send it to the primary care providers,
and we don't provide any targets for them, it'll languish like
some of the other recommendations do because
they're not specific enough.
>> Steven Krafchick: So how would you like
to make it specific?
>> Dr. Gailen Marshall: I would say to the presidents, or to the
presidents of the major primary care organizations in this
country, and then we can smith what we mean by which ones,
but they're only by about half a dozen of them.
>> Steven Krafchick: Yeah, but I guess I'm thinking
bigger than that.
I would think that we look at ways to make it available to the
primary care community; that they're going to see these
patients at least at the gates because it gives them things
to think about even if they don't do it all, you've got
a differential diagnosis of all these different conditions.
They can go "Oh my God, I got to refer this to somebody else,
and they'll find somebody."
>> Dr. Gailen Marshall: You know, you and I are saying the
same thing, and the mechanism I'm having is we would ask
the president of the American College of Physicians for her
mailing list for their membership, and ask them to send
it by electronically, because electronically it's --
it doesn't cost anything to every member that's on the ACP;
93 percent of board certified internists in the United States
are members of the American College of Physicians.
>> Steven Krafchick: Right.
So I would accept that as a friendly amendment in that
as a vehicle for doing it we look at that, but we still have
to get permission from the IACFS.
>> Dr. Gailen Marshall: Without question, and that would be part
of the -- in the motion that you make, to me that is implicit
in the motion because you can't go -- you're asking
the secretary to explore ways to get it done.
So that's implicit in the motion as you stated.
So does everybody understand that with the secondary accept
to friendly amendment?
>> Dr. Dane Cook: So I've reviewed it and I'm in favor
of that, but can I ask that everybody please review
it before everybody starts nodding their head and said,
"This is something that we endorse?"
Can we just take a couple steps backwards before we all say,
"Yeah we should --
>> Dr. Gailen Marshall: I'm fine with that.
I've read it and reviewed it, so I'm good with that.
>> Steven Krafchick: If there's a concern about that, we could
table it and take it up first thing tomorrow --
>> Dr. Gailen Marshall: Which would be fine.
>> Steven Krafchick: -- how many --
>> Dr. Dane Cook: There should be a concern about that.
Everybody should read it before they all start nodding their
heads and agreeing with us.
>> Steven Krafchick: I don't have any problem with that.
>> Dr. Nancy Lee: We have a couple of hour's
tomorrow afternoon, so.
>> Dr. Gailen Marshall: Yeah, we do have a couple of hours,
so I think that's good counsel.
So with your permission, we'll just table that motion
or we could withdraw it and you can remake it tomorrow.
>> Steven Krafchick: Table it until tomorrow morning.
>> Dr. Gailen Marshall: Fine, we'll table it until tomorrow.
We've got just a couple of minutes left.
Let me tell you just a little bit of taste what's going
to go on tomorrow.
First of all, unfortunately I won't be leading
the discussion tomorrow.
I have a long standing commitment for
a meeting in Switzerland.
The plain leaves at 8:30 tomorrow morning, so I have
to be on that plane.
>> Female Speaker: From Mississippi --
>> Dr. Gailen Marshall: From Mississippi, yeah.
So I'm flying back tonight so I can leave again tomorrow; and
originally it wasn't going to be a problem, but the dates got
shifted around a little bit, so it was a problem, but Nancy will
run the meeting tomorrow and things will work out just fine.
What tomorrow is going to be about is a -- two things.
Number one is, we're going to get more agency updates,
discussions about funding opportunities and other support
opportunities, and then in the afternoon they put together
a very interesting presentation by several
of the ME/CFS organizations.
Their presentations are in your packet; you can take
a look at that.
And then the discussion tomorrow afternoon is going to be on two
things that I hope you get accomplished.
One is an even better idea of recommendation back
to the secretary about the definition, and with all due
respect to my colleague, Dr. Belay, I don't think we have
to be beholding to the CDC, but I think we have
to be mindful of it.
They are -- they are the organization charged with
clinical epidemiology, and I think a discussion of how we can
construct a win-win where we can do this so that the patients are
properly served so the new clinicians who get interested
before they can see this primer, and they see the toolkit that's
out there, some of the specific changes we might suggest;
I think that's very good, and then I sort of a rehashing
and a review of anything we want to talk about in terms of moving
a recommendation forward to the secretary
regarding pediatric ME/CFS.
And what's move me the most about all this, I think one
could argue clinical care is clinical care whether they're
kids or adults.
But there's this unique idea about the issue as it related
to educational opportunities to the barriers that these children
face, to the protections that are already built in for them
that I argue that most parents and probably most smaller school
districts don't know much about; and if the school district knows
about it, they may not be likely to share that information openly
because it's expensive in their mindset.
And then making recommendation -- a recommendation
or recommendations, depending on what we finally come up with
to the secretary as to how we can improve that process,
the roles that other agencies that she can interact with role
that HHS itself can play in moving that idea forward
so these kids that have this illness can exercise
their rights as citizens to access the services that are
available to them as children with current disabilities just
like many of the others that are much better recognized.
If we get those two things done and they come out of this
meeting, and then if what is brought back up, the consensus
of the group is still that it's a good idea to endorse this
primer and send it forth to Secretary Sebelius looking for
ways to disseminate it out to the broadest market for primary
care doctors; that will be a extraordinarily productive two
day meeting that we had.
So with that, Mickey's big hands on the 12.
We're done.
Thanks everybody for being here, and we'll see you tomorrow.
[applause]