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>> Dr. Gailen Marshall: This was a brainchild of our Subcommittee
Chair, Eileen Holderman, with the idea of -- yes, we all
applaud Eileen's efforts, with the idea of allowing
the committee to interact with individuals that are affected
by pediatric ME/CFS.
So we have a parent, Faith Richard-Newton [phonetic sp],
and two patients, Matthew Lopez-Majano; and remember
I'm from Texas, so give me a break about pronouncing your
name, I think I got that right;
and, Christina Gustavvson -- Gustason?
Gustavvson, well I knew, two out of three, okay?
And these are two young people who are currently sufferers
of ME/CFS, and they're going to share in a brief, about five
minutes apiece, they're going to share their story with the
committee; and then, we're going to spend the next 45 minutes
in an orderly fashion, I beg from my colleagues,
for us to be able to interact with these three individuals,
and for us to hear from them.
Let them ask questions of us, and then let us ask questions
of them, and this dialogue will go on now for the next hour,
and then we'll make up the time later on in the afternoon.
So, I assume the order's going to be left to right?
Matthew, you want to start?
>> Female Speaker: Christina.
>> Dr. Gailen Marshall: Christina's going to start.
Press the little button and turn it so that, so that
we can hear you.
>> Christina Gustavvson: Is this good here?
>> Dr. Gailen Marshall: Perfect.
>> Christina Gustavvson: Okay.
My name is Christina Gustavvson and I've had CFS
for seven years now.
I started feeling an extreme decline in my health when
I was around 9 years old.
And I just remember not being able to get out of bed,
and it was confusing, and it was debilitating; and I went from
going to a gymnastics like on Tuesday nights every week,
and having a complete social life and doing normal things for
a 9-year-old girl, to not being able to go to the movies with
my family on a Saturday.
And it was really taxing on both my mental health and my physical
health to have just a complete misunderstanding of what
it was that was wrong with me.
And while I was diagnosed, it was easier in a way to at least
know that there is a name for this; but, at the same time,
even now whenever I say I have CFS to people who ask, they have
blank looks on their faces.
They have no idea what I'm talking about, and once I say
I have chronic fatigue syndrome, the immediate
response is, well, everyone gets tired.
And I think that the name itself is really -- it's just not
a good description of the illness because while fatigue
is a major part of it, it's one of many things that are wrong
with our bodies, and I think that the name is definitely
something we need to work on.
Another thing is also education.
I have been battling my schools since I was in fifth grade
and luckily now I am starting to get better, so I'm hopefully
going to be able to go to school fulltime my junior year.
But before now, when I was almost completely bedridden last
year, I had the worst time with the schools.
We had to hire a lawyer and I had to get homebound
instruction; and, even online schooling, which is normal
response for this illness, doesn't work because I don't
have -- I need a teacher to teach me, because I'm not going
to be able to just memorize things by myself,
online, like healthy kids.
So, it's just not a very good response toward the illness.
Another thing is also teachers not understanding
this illness at all.
They have no idea what it is.
If you say you have autism, then the teachers understand,
or bipolar disorder; but CFS, no one understands how
it is to teach us.
And we are difficult to teach but it's just not getting
addressed, I don't feel.
And also there's the fact of school nurses,
I've had troubles with them.
In middle school my school nurse was not very understanding
of my illness and thought after five minutes of resting I should
be able to go back to class, which is, again, just not
realistic for a CFS patient.
So, those are the major things with school that were really
taxing when I was my most ill.
Now, however, I have become slightly better, actually,
marginally better than I was.
Before last year I was bedridden and just this morning I was able
to walk for 20 minutes at 8:40 in the morning.
But it took a lot of effort to get there and a lot of CFS
patients will never get there; and, thankfully, because
of Dr. Rowe's study, which I am in, in physical therapy
it helped me a lot.
But I feel like there's -- I mean it helped me because
I have hypermobility.
I believe that's why it helped me.
But there are so many CFS patients that have other things
other than hypermobility and physical therapy might help
them, and it might not, and I think we need to discover more
treatments to help the kids who won't get better
by just physical therapy.
Also medicine, I'm currently taking Ritalin, and that really
helps my brain, but I know other people who it hasn't
worked for them.
I believe Matt may have tried it and it didn't work for him.
So, I think that we really need to find something that works for
every CFS patient, and it's going to take a while,
but I think it's something we need to focus on.
So, although this illness isn't known for being fatal,
it does take lives.
>> Dr. Gailen Marshall: Okay, thank you Christina.
>> Matthew Lopez-Majano: You'll have to forgive me if my voice
doesn't come through very well.
I'm not used to speaking up; and, also, please don't expect
me to be very dynamic.
I can just relate facts.
Well, I can't even relate facts really, I can only tell you what
I think because facts require memory and memory's something
I most definitely don't have.
The only reason I remember the day I fell ill is because
it was two days after my birthday.
I got really awful pneumonia.
So, happy birthday to me, and I never got better.
It was -- it taught me a new meaning of fatigue.
I had -- I was a fairly active swimmer at that point,
and I knew what it was to be tired.
I had -- I knew what it was to be exhausted.
I knew what it meant to be working so hard that every part
of me hurt, but to feel that way every day without knowing why
I feel that way, without the exercise
behind it, it was frightening, frankly.
And at first, it was a bit of a laugh, I got to miss school;
and, frankly, the school wasn't very stimulating intellectually
or in any other way.
But when I had to start missing things that I enjoyed,
even the aspects of school that I enjoyed, friends and math,
then it kind of hit home that this wasn't on my terms.
It's playing by someone else's rules, that every moment
of every day and everything I do is restricted.
But as bad as I have it, I always know that there are
people who have it worse.
I've never been bedridden, as bad as I've gotten.
There have been times that I've been out of commission long
enough to be considered temporarily bedridden,
but there're people who have to live that way
for months or years.
And after seven years of missing life, it's very disheartening
to know that I may never get better and that maybe there will
be a cure eventually, but not soon enough to help me or anyone
who came before me.
Seven years out of 19 years.
It's about the proportions.
You consider that a person isn't exactly a person until they're
like five, then I've been sick half my life; and, if I can't
remember the first half then I -- as far as I know,
I've been sick all my life.
And it's just day after day of struggle.
It gets really hard to figure out why I keep going when
everything I want, everything that makes me happy,
feels always out of reach.
When I can't even read a book, something that I enjoyed doing
by age five, then it really hits me that I'm not
really alive, technically.
I mean, humans are defined by their actions, so I suppose that
makes me something else.
If I can't act, if I can't think, if I can't -- well put
it this way, if I died, all that would be left of me is memories
and old ones at that.
And that's all for me.
>> Dr. Gailen Marshall: Thank you, Matthew.
>> Faith Richard-Newton: Good afternoon, my name
is Faith Newton and I am a mom.
I'm also an educator.
So, I've got two different hats that I wear routinely.
I've got a large family, six people in our family.
My eldest is 30, and we adopted her when she was 16.
I have twins that are currently rising juniors.
My son is 16, has chronic fatigue, one of my twins.
My -- his twin sister does not have chronic fatigue, and then
our nine 9-year- old grandson's at home.
Besides being a mom, I'm also an educator.
I was a middle school principal for many years, was assistant
superintendent of a large district.
I'm currently an associate professor at our local
university, and my specialty is education and instructional
strategies to deal with -- I've been doing a lot of research
on chronic fatigue syndrome and how can we help our students
in our schools to learn a little bit easier with the cognitive
difficulties that they have.
What do we do with them?
My son, Michael [phonetic sp], got chronic fatigue syndrome
when he was in fifth grade.
He had a gradual onset.
He was sick.
He had a mono-like virus in fourth grade.
It took several months to recover from it.
Then he got it again in fifth grade and he never
recovered from it.
It has been -- I was lucky in many ways because I was working
in the district at the time and knew all
of the teachers and everybody.
We were in a small community.
So that my family physician had known all of us for, you know,
she had raised us.
And so, it was never a question of what was wrong with him,
or was he really sick?
It was only a question of what was wrong with him.
So, from fifth grade to, and he's now a sophomore, he's had
chronic fatigue syndrome.
Some years he has been -- he can go to school a couple of days
a week, part days.
Some years in the winter months, he never went to school.
Most recently he takes a weekly IV, which takes about three
hours to get and it enables him to go to school
two part days a week.
He has fulltime tutoring seven days a week in order for him
to maintain his grades and to keep caught up he has school
Sunday through Sunday.
Pretty much 365 days a year.
The only time that he is not doing -- we don't do tutoring
or homebound is maybe Christmas vacation or when
we're on vacation.
That has probably been the most difficult.
Social life is basically nonexistent.
We try very hard to see what we can do, but when you have
a child that is that sick, it is very difficult to see
what you can do.
As a mother, it's kind of heartbreaking.
When you go to work and you come home and you say some days, hey,
Michael, what'd you have to eat today?
Mom, I was just too tired to make pancakes.
Do you know it takes 26 steps to make pancakes?
All right, and he's just too ill to do that.
Other days, you know, when he's feeling well like
Tina [phonetic sp], it works out really well.
But as a mother, I think it's been, it's been very difficult
in the family to figure out what can you do and what you need
to help yourself, your child, your son.
That's it for now.
>> Dr. Gailen Marshall: Thank you all, all three of you for
your presentations, very thought provoking for all of us.
What we're going to do now is to have a discussion among
the committee members with the three of you; and, if you have
questions for us, you're welcome to ask those questions.
The only issue is that I would request that everyone try
to make your questions as brief as possible and try to make your
responses as directed as possible, simply so that we can
get as much of this done in the next 45 minutes as we can.
I'm not trying to short circuit discussion.
I'm not trying to short circuit, you know, reaction,
quite the contrary.
I'm trying to promote it so that we have plenty of time
for everyone to talk.
So, who'd like to start?
Steve [phonetic sp]?
>> Steven Krafchik: Thanks.
It's a brave thing that you do.
Tina, I had a question for you because you said you had
problems and it made you difficult to teach.
I'm wondering if you could just tell us a little
bit more about that?
>> Christina Gustavvson: Sure.
I would have days where I could do an hour of schooling and
I would be pretty well to absorb the material; and then, I'd have
days where I was well the entire day and then an hour before
my tutor was scheduled to come, I would get too sick
to be able to have her.
So, it was difficult in the way that scheduling.
I mean, I was completely unpredictable.
I could be feeling well that morning, and I could be feeling
horrible that afternoon, or I could be feeling amazing that
morning and, again, whatever, mismatch, you know.
But the point is that it's just difficult in the way that I have
no idea how I'm going to feel an hour from now, or two hours.
So it's very difficult to schedule school.
Dr. >> Susan Levine: Hi, Tina also.
You mentioned that you did some physical therapy now.
Do you think you're back on in having been athletic before you
got ill has kind of helped you both be compliant with it and
it, you think it's just helped you that you were and could've
been in better shape before you got ill
than perhaps other people?
>> Christina Gustavvson: I'm -- I honestly, I don't know.
All I know is that the physical therapy really helped me because
it was painful to exercise before, because it's not only
the fatigue which would crash me, which made it just no point
at all because I would just crash the next day.
I wouldn't be able to exercise again.
But it was really the fact that my joints were hurting
me so much, and because of the physical therapy tightening
my joints, it really allowed me to exercise more
and get me better.
>> Dr. Gailen Marshall: Mary Ann, go ahead.
>> Dr. Mary Ann Fletcher: I'd like to ask
both Tina and Matthew.
Would you feel like you could participate in a clinical trial
if you were asked?
If this site, for example, had a placebo group, which means those
who -- individuals who would not know that they were not taking
the drug under study?
And do you think that's a worthwhile thing
to do in the area of chronic fatigue research?
>> Matthew Lopez-Majano: I'm not sure exactly what you mean
by how would I feel with it?
>> Dr. Mary Ann Fletcher: Well, my primary question was, would
you feel like you would participate in that?
Is that something that you would find appealing?
>> Christina Gustavvson: I would definitely
participate in a study.
>> Dr. Mary Ann Fletcher: Have you already been in one?
>> Christina Gustavvson: Yeah, I mean, I'm already in Dr. Rowe's
study, I believe Matt is too.
So, I think that studies -- I mean, Dr. Rowe's has had
complete success with me, so I'm always in -- I mean, I was
really only last year I was bedridden for most of the year.
I had a hard time getting out of bed and my body was completely
depleted, and just a year and a half later I am not completely
cured, by any means, but I am so much better.
So, I think that studies really do help us understand also how
this illness works, at least try to understand it.
>> Matthew Lopez-Majano: I've been on a study before.
It was -- I can't remember exactly what it was for some
reason, but it required that I go off my meds, and during that
week I realized exactly how far the limited success I'd had
up to that point with the meds had
brought me, because it hurt a lot.
It was really exhausting because any time I'm not
at home I'm exerting myself.
So, if you're asking about a drug trial, then that would
probably require going off medication again, and frankly
this year's been a bad year for me, so I don't think I could.
>> Eileen Holderman: Okay.
Thank you for your presentations.
My question has to do about education because I'm on the
Subcommittee for Education and Patient Quality of Life.
So, I'd like to ask the same question to all three of you.
When you told your teachers you had chronic fatigue syndrome,
did any of them, you know, did they generally know what the
disease was; and when you told your friends, your peers,
did they know what it was?
>> Christina Gustavvson: My teacher had -- my teachers
as far as I know, I mean my mom mostly deals with my teachers;
but, as far as I know, they had no idea what the illness was.
I mean, when I tell people maybe two percent of the people I tell
have any idea what chronic fatigue syndrome is;
and it's really, I think, a problem because it's hard --
and also with friends to tell them and try
to make them understand.
But if you haven't gone through this level of fatigue and pain
and just complete debilitation, it's hard to understand;
and I think that with -- especially because when you say
things like cancer or AIDS, people immediately know,
you know, you have bad health and there's
something seriously wrong.
But chronic fatigue syndrome, most people don't know.
>> Eileen Holderman: What about you, Matt?
>> Matthew Lopez-Majano: When I was sick I was doing school
part-time, so I only had a couple of teachers and,
for me also, my mom helped a lot with dealing with them.
I remember one of them didn't like me, thought I was a cheater
so, of course, he's the one who gets
the invisible, unknowable illness.
One of them just kind of shrugged and sent the schoolwork
home when I needed it; one of them seemed passively
supportive, you know, I told her I required accommodations,
she said fine.
As for friends, shortly after I got sick we moved, so, friends
were gone for that reason.
So there wasn't anyone to tell.
I got in the habit of not telling anyone.
So, I just kind of smiled my way through it.
I don't even tell people anymore because the chances of finding
someone who knows what it is are slim enough that I'm not going
to bother with it because, frankly,
people don't believe me.
>> Eileen Holderman: Okay.
And you Faith, what was your experience with knowledge
of the illness with teachers and your peers?
>> Faith Richard-Newton: They don't have -- no one has ever
heard of CFS, and even in my district where I've another
family that has children that have CFS that are two years
ahead of us, they still don't know what it is.
At every IEP meeting or every 504 Plan meeting, we have
to explain and reintroduce what CFS is, what kind of educational
interventions can be done.
It is very difficult.
They also have Tina's viewpoint of, well, that's just something
you can get over.
Because it's such an invisible illness, it's very, very
difficult for them to understand.
There's a lot of issues in the schools.
Do you -- we -- even as knowledgeable as I am, we still
needed to have a parental advocate in the building with
us because if, and Tina can talk a little bit more about this,
if you wanted to take honors classes, well, your child's too
sick to take honors classes.
Or if you wanted to take an AP class, no, your child's
too sick to do that.
If your child is -- needs an accommodation like double time
on a test, teachers and a lot of EDs, educational diagnostician
or nurses, whoever's in the school, don't understand that
because our students need that extra time to think, my child
needs twice the amount of time to get those words out,
that they're stupid.
And they're not stupid.
It's just a matter of what's going on with the illness inside
them, and we've had to do a lot of educating that way.
Just because maybe this afternoon he can't remember
4 x 5 is 95, but he then can do a complicated formula and graph
it in a math equation, it's been -- it's very hard for teachers
and guidance counselors and psychologists to understand
exactly what's going on, you know, with my son in the school.
It's very difficult.
So, we have had to educate continually on what is CFS,
and what does that mean, and that does not mean
our kids are stupid.
It does not mean that they can't take honors classes or AP
classes, they can't do the work.
The illness is what's causing these issues and we have
to figure out a way to teach our kids with CFS
a little bit better.
>> Eileen Holderman: Thank you.
>> Dr. Gailen Marshall: Dr. Newton, first of all,
forgive me for not acknowledging you as a colleague.
For those that know, she, that don't know, she's an Associate
Professor of Education at Delaware State University.
I apologize for not acknowledging that.
As a clinician scientist, in talking to my colleagues who
don't understand ME/CFS, whether they're clinicians, they
practice medicine, whether they're researchers working
in the laboratory, I find it easiest to get
to the young people.
It seems like the younger they are, the more open minded they
are as opposed to the old gray hairs like me who made up their
mind 30 years ago about whatever, and introducing new
concepts is difficult.
I'm curious because I'm sitting here listening to you talk about
the challenges with educators, and I come from
a family of educators.
My mother was a schoolteacher; my sister was a schoolteacher;
I have uncles and aunts and so on; I have
several college professors.
So, I come from an education background and the hallmark
of education is the gaining of new knowledge and an open minded
idea of acquiring new knowledge; and, yet, it sounds like that
the mean old doctors who don't understand or appreciate ME/CFS,
are accompanied by rather uninspiring educators
at the teacher and administrator level who behave likewise.
My candidacy or my effort has been focused on the younger
people, the trainees who have a much more open mind about
things, whether it's related to integrative medicine or whether
it's related to ME/CFS.
I'm curious to know if you might see a similar pattern in your
role because your bio is so unique to be able
to give that perspective.
Do you see a light in the tunnel with us being able to educate;
and is there some way, aside from Delaware State where you
are, with other institutions around the country, is there
some way in which we might be able to advocate for educators
understanding about children with this illness at that tender
age where they're more likely to be open minded?
>> Faith Richard-Newton: Yes, I think there is,
a couple of things.
I have published on the Association of Special Education
Teachers' Website a CFS page.
So that is now available to all educators across the country.
I think that it's helped tremendously because now, what
happens is our schools can go and look at that page, that fact
sheet, all right, and say, this is what CFS is; and, I think
more of that work needs to be done.
I think with our younger teachers and administrators
if we can train them in what strategies work well with our
kids that have CFS like, for example, Gudrun Lange's work
on doing task, not multitasking, with chronic fatigue students,
chronic fatigue syndrome students,
but doing tasks serially.
So, in the high school or the middle school level, if we have
our students complete the task, the assignment beginning to end
rather than in the classroom reading one story, then doing
a poem, then doing the vocabulary, we have found
the research is pretty clear that it works better for our CFS
students, for my son, to do the tasks in order, rather than have
15 tasks to do at the same time.
It's that kind of research that I think needs to become more out
there with our educators and with our teachers.
I really like the presentation this morning about
the parent information center.
So, if that is the route of the office of special education
is leaning towards, how do we get CFS information out to all
50 states, our parent information centers?
Where do we -- can we give them fact sheets?
What do we do so that they are now
an advocate for our children?
All right, because right now the schools look
at us as adversaries.
So, how can we turn that role around?
And it's not that they're intentionally trying
to be adversaries, like Tina said and like Matt say, they
don't have an understanding of the illness.
They just simply don't know what it is and they don't know how
to teach our kids in the classroom.
So, what do we do about that?
So, I think that yes, there is a light at the end of the tunnel.
I see a lot of changes six years now into this illness than I did
the very first year, all right?
We have - there are strategies that we can use with our kids
so that they can learn things a little bit differently, because
they are hard to teach because of the processing issues and
the short-term memory problems.
So, what do we do?
Because that does not mean they are stupid, okay?
That does not mean they are stupid; they are smart.
All right, and we have to figure out how to teach them best.
So, yes I see that.
Some recommendations would be making sure that our parents
know where they can get help, whether it's the parent
information center at each state, where do they get that
information so that they understand what a 504 Plan is.
That they understand what an IEP is, and what their students,
what their children are entitled to in the schools, so that they
don't just give up.
I mean, a child said to me that earlier this afternoon,
you know, if I didn't -- if I hadn't had the help of a parent
advocate I quite simply would have dropped out of school
and gotten my GED.
That is sad.
That is just really sad to say that.
We need to figure out ways to be more proactive, to be more
involved in what's going on so that all of our kids understand
that yes, they have CFS, but yes, they can get the education
that they deserve in our middle schools and our high schools
and our elementary schools.
>> Dr. Gailen Marshall: Well, let me ask you a follow
up question that goes with that.
Are you aware of any evidence or study that's been done,
or do you think it might be a good idea, and that's a hint for
the last part, to be able to assess if these young people --
I think the illness has been around long enough now,
and there is now beginning to be a movement, albeit terribly
imperfect listening to the testimonies that we've heard,
that at least some school districts seem to be enlightened
enough to see the value of putting these children
in a learning situation; and some of us that are old enough
to remember when dyslexic children were thought
to be stupid and they were thought to be illiterate
and so on, and now these are people that are honor graduates
and people leaders of industry, politicians, all over the map.
These are people now because they learned how to accommodate
the learning that was necessary for those children.
Do you see that there's either has been or might
be the possibility of doing a study to show the brightness
of these children?
That in the right setting they can achieve at a level that
would be comparable to a child with a different setting with
the same level of intelligence in his or her accomplishment?
>> Faith Richard-Newton: I think that that's the direction
we need to go.
We need funding and studies in the education field
for our CFS students.
It currently does not exist.
There's nothing that's being done on how, what instructional
strategies, what works best with our CFS students?
What curriculum modifications need to be changed --
need to be done?
What adaptations should we have for our kids?
That just simply doesn't exist.
It's the right time to see if we can put into place some funding
to do some studies with our students.
I think it would yield some very promising results as to just
the simple thing of assigning homework serially,
having a student read all of "Frankenstein" before they start
"Tale of Two Cities" before they start the vocabulary review.
Just very simple instructional strategies that we know already
work, and seeing what effect that has on our students with
chronic fatigue syndrome, and would that enable them
to do a little bit better in their classes and their courses.
I think the other thing is, we also need to do some research
on -- there's been some done but not with, particularly with
students on processing speed and working memory.
I think those types of studies would also be very useful
because it would show that our students, the processing speed
is probably twice in some cases with some of our kids.
So what that it takes Michael, it takes my son maybe twice
as long in his computer programming class to write what
he needs to do for the programs as a student who does not
have CFS; but that doesn't mean he's stupid.
So what can we do to help with that processing speed?
What strategies are out there that would make it a little bit
easier for him to get that information
and to learn it quicker?
>> Susan Levine: [inaudible] a question for you about Michael.
If you notice that he's any different in terms of his math
ability, kind of alluded to that, versus verbal skills?
And, secondly, this is sort of unrelated but, is there
a support group either online or with his peers that if he can't
get to the classroom and, you know, hang out with his friends,
are there other ways of being with social, basically?
>> Faith Richard-Newton: I apologize,
I forget the first question.
>> Dr. Susan Levine: Whether you notice any difference in terms
of how his verbal abilities are affected, word finding,
et cetera, versus mathematical skills?
>> Faith Richard-Newton: The first question, his mathematical
skills are very much superior, for him it's a lot easier.
He's a very difficult time and a lot of CFS
students do, retrieving words.
So, when he gets tired he may not remember the word for truck
or the word for start or to stop.
So, if he's in the middle of an exam and he has a tutor that's
not -- or a teacher that's not familiar with him and that
he's now passed that zone of I can't remember how to finish
this test, even though two days ago he knew the material or even
that morning he knew the material,
so the math is a lot easier.
But you have to be careful because simple things, he may
not remember the multiplication tables.
Like I said earlier, he can do more complicated things.
The writing is very difficult.
It's very, very difficult, because our students have
to retrieve that information.
It's very hard for him to get what he wants to say
out and on paper.
It takes so long and he has to -- it's very hard.
With math, it's easy.
They can sit there, figure out the formula, you know, figure
out what to do.
But with writing, they have to be able to retrieve that
information from themselves and then make the connections.
So definitely, in his case, right,
math is far easier than reading.
In terms of a support group, I was really lucky in that a group
of us moms informally started talking to each other through
our physicians and, actually, through a guidance
counselor in our school.
We started figuring out that there were other people like
us who had children that had CFS.
The last two years we've put together a support group
of parents in New York, Maryland, Pennsylvania,
and Delaware, where we get together.
It was the first time that my son, when we got together two
years ago, had ever met another child who had
chronic fatigue syndrome.
That was unbelievable.
You know that song "These Are My People," he came home singing
"These Are My People."
You know, I finally met somebody who is like me.
For the moms, for us, we just met two weeks ago.
We all get together, if one of us is having a particularly
difficult time or something's happened with our kids,
and we meet and have lunch and get together and our kids,
you know, can hang out; and if our kids are just lying on the
floor, they don't have to say to anybody, hey, why aren't you
getting up and walking outside?
Okay, they don't have to explain to each other what's
wrong with them.
For us it's a really good support group.
Some of us see different physicians in the tri-state
area, and it's been good to hear this is what one physician
is doing; this is what another physician's doing; and then
we can see, well, what should we be doing?
But we are very pro-advocate.
Other parents don't have that and somehow I think we need
to create a system where there are advocacy groups for our
parents, so that they have that kind of support.
It's been a godsend for us and for my family.
>> Steven Krafchik: You mentioned Gudrun Lange.
Has she been testing a lot of children with chronic fatigue
syndrome, or just yours?
>> Faith Richard-Newton: She hasn't done either, not mine
or -- I mentioned her because she did an adult study.
>> Steven Krafchik: Right.
>> Faith Richard-Newton: And that was the one I was referring
to, to see if that information was applicable to teenagers.
So, no, she has not -- not that I know of, she has
not done any [unintelligible].
>> Steven Krafchik: Yeah, she's one of very few
neuropsychologists who knows how to test people
for chronic fatigue syndrome.
I've worked with her and she'd be a great person to get
involved in this study, if one could be funded.
>> Faith Richard-Newton: I would agree, it would be excellent.
>> Eileen Holderman: You mentioned having to be your own
advocate and, you know, raising awareness.
What written materials do you bring with you?
In other words, do you get them from certain government
agencies, or from advocacy organizations?
What do you, which materials do you find that
are helpful to you?
>> Faith Richard-Newton: The CFIDS organization has perhaps
the best array of materials that are helpful to us.
That would be first.
Secondly would be any of Dr. David Bell's work on chronic
fatigue and his guidelines.
For example, one of the things that our schools have a very
difficult time with is if you have a very -- if your child
is like Tina when she bedridden, or some of our other friends
that have CFS; if your child can only go to school for an hour
a day, schools often don't understand why that
socialization point -- why that's extremely important.
So, CFIDS organizations.
I've also used some of the material that is, I think
it's on the CDC website or health providers, and taken
some of that material.
But there very simply is nothing out there.
There's very little information.
CFIDS provides the most that you can use, the rest
of it I've either had to come up with
on my own or produce my own.
It's one of the reasons why I did the special education page,
because there was simply nothing out there for our schools
and our educators.
We -- that's a huge need, we have to figure out how to get
the information to our schools, to the -- as the --
and I'm sorry, I forgot her name from this morning.
The special education person spoke; we need to get that
information to the parent information centers.
We need to educate everyone on what CFS is and what to do.
>> Dr. Adrian Casillas: All right, thanks
for sharing all that.
I -- as a program director I have the responsibility
of teaching young physicians that want to sub-specialize
and I find that they get overwhelmed very easily.
So, Matthew and Christina, I'd like to ask you both if you
could help me out in terms of the types of features that you
feel would be most important to make sure you express to the
physicians that you've encountered so that you can
really effectively relate the signs and symptoms of ME/CFS and
CFS; and, you know, without being overwhelming because
I think that that's one of the key features of -- young doctor
will come in and say, my God, there're so many things, I can't
believe that this really comprises a disease.
So, if you had to help me out in what I should teach them, could
you give me a few pointers?
>> Christina Gustavvson: Well, there are like 64, I think was
the last time I checked, symptoms of CFS.
So, it definitely is a wide range
of things that are problematic.
Fatigue is, of course, a big thing for me personally.
But I do know of one girl who fatigue is a problem for her but
it's mostly pain that hurts, or it's most --
causing her problems.
So I think, of course, fatigue should be our main -- when
people are not getting out of bed,
there's obviously a problem.
I think that's something you should look out for.
But, also, like joint pain or neck pain, muscle pain, and
aches and like -- well, I described before as vein pain,
where it felt like my veins are like something
that's pinching them.
So just like little things, I think, mostly with CFS III, the
[unintelligible] feel so weird is that it's a bunch
of random symptoms.
So when you really have someone with supposedly symptoms
everywhere on their body, I think that, in itself,
is an indicator of CFS.
>> Matthew Lopez-Majano: I think there's one really key thing
that if you don't have it it's going to make everything else
useless and that's an open mind.
There's no diagnostic test for this, so you only have our word.
And without an open mind, we're just a bunch of slackers.
>> Dr. Gailen Marshall: I think you also have to have curiosity.
That would help too.
It's interesting in listening to the two of you, one of the
things that I teach, my young -- from first year medical students
all the way to senior fellows, a patient walks in your office
and sits down and says, doctor, I'm ill.
You either believe them or you don't.
They're either lying to you or they're deluded or they're ill.
A hundred years ago our knowledge base in medicine was
so limited that many times a physician would not know what
was going on with a patient, would then set about to try
to figure out, what can I do to help the patient feel better?
Unfortunately, with the advent of the technology of medicine,
far too many physicians have fallen -- and other health care
providers by the way, we share the blame, have fallen into
the trap that if there's not a diagnostic test then
it must not be real.
If there's not an abnormality on a lab, or not an abnormality
on a physical finding that we put together, then
it must not be real.
But, yet, still the patient says that he or she is ill.
Now, you heard from Dr. Rowe this morning, I think what
is a mounting idea that -- the classic when I came up there was
no ME/CFS, there was, if you happen to be a buff of medical
history, there was a condition that was referred
to as neurasthenia, and neurasthenia's been around the
time since Hippocrates; and, in many cases, some people and
there is a spectrum even of advocates.
I suspect if we went around the room there would be people with
their teeth gritted, and there would be other people with their
teeth not, with nodding and agreement in that the
description that was there in the old, ancient medical
textbooks is similar in some ways, but not in every way.
So, the fact is, is that the normal exam,
which is the harbinger of ME/CFS, no longer holds.
These individuals are not "normal," although I will admit
to you the older I get, the less I know what the word normal
means, because normal is what's normal for me.
If I am ill, what I want is someone who will, number one,
believe me; number two, make me the focus of trying to help
me feel better or, at least; number three, helping
me to understand what's going to be in there, what can I adapt
to, and where can I go?
The very idea of these children sitting here being given the
basic idea that there's nothing that can be done and they now
have a life sentence of this, is absolutely unconscionable to me.
And it's unconscionable from the standpoint that even
in illnesses where I suspect everyone over about the age
of 12 has been at a doctor's office, if they have a chronic
illness that we know more about and say, you'll have to take
this "for the rest of your life."
Everybody heard those things?
Well, the problem is, number one that presupposes the doctor
knows how long you're going to live.
They stole my crystal ball that I got when I got out of medical
school and we don't issue them anymore.
So I don't know where they get the idea that they know how long
we're going to live; and number two, is that it denies
the advances in medical sciences that are being made
on a regular basis.
So, for the two of you, because of your braveness of just doing
this, let me tell you there is a light at the end of the tunnel.
We don't see it yet, but I promise you it's there;
and I promise you that you're not going to die old people
suffering from this illness like you are right now.
And I base that statement not on some fluffy, I hope that's going
to be the case someday, but on other illnesses that 20, 30, 40
years ago there were people who felt not dissimilar to how you
feel because they were told there was nothing that
could be done for them.
The fact that somebody doesn't have a diagnostic test for you
yet, and I emphasize the word yet, we have experts around this
table who are biomarker experts.
The day is coming.
It's not coming fast enough for you.
It's not coming fast enough for any of us that
care about patients like you.
But, the day is coming and it's my firm belief that as you sit
here and are willing to be brave like this, and others
are willing to advocate in a rational, forward thinking way,
the ultimate end result is that people are going to wake
up one of these days.
Educators are going to learn; clinicians are going to learn;
payers are going to learn; the public is going to learn; and
this is where advocates can make a difference right now,
is to make sure that your educators know, whether you have
a child with ME/CFS or not.
I promise you I -- my children are grown and out of the home,
doesn't mean they can't get sick tomorrow.
We now have been blessed with a grandson who
is eight months old.
Doesn't mean he couldn't get it by the time he's 10.
Whether that happens or not, it does not release me from
my personal responsibility of trying to get the message out
to others; and, I think, that's what we're hearing today is the
message to educators to help these children, to help them
understand, the educators understand you kids
are not stupid.
You seem pretty bright to me, and that is a matter of finding
and unlocking that box for you so you can be what
you want to be.
I think that's what we want to try to help you all do.
>> Steven Krafchik: I was wondering whether in the
travails with the schools, any of the websites that there
are concerns about were raised with you.
Like whether it's an old CDC website or any of the other
information that's available were held
up to kind of counter you?
>> Faith Richard-Newton: Let me say something about that.
The old studies that this is a psychiatric illness, that's
a real problem, because when I first -- when Michael first
got sick, that's all we heard.
This is, you know, some type of psychological illness.
They put him on an antidepressant, you know, that's
-- it was -- luckily our -- I didn't hear that from our
pediatrician because she had been with us the whole time.
But people who did not know us or outside, that was
their first assumption.
That is a real problem and that's why I think Tina said
the problem with the names, chronic fatigue syndrome.
That is still out there.
You have many physicians, many doctors that still think
that this is not what I call "a real illness."
Somehow we have to dispel that.
And, I guess, one of my questions to this group is, how
do we go about dispelling that, that idea that this is not a
real illness, that this is not a psychiatric disease?
I mean, it's just laughable when we hear people say
things like that.
Tell them to get out of bed and go to school.
As one family member said to me quite routinely, well, just give
him a Coke, you know, the caffeine will be able to get
them up and send them to school.
It's -- yeah, that -- what do you do about that?
I mean, it's constant education and we have to figure out how
to educate our physicians and the general public, and our
educators that this is an illness.
This is something that our kids have.
This is real and we need to do these things about it.
>> Dr. Jordan Dimitrakoff: [inaudible]
>> Dr. Gailen Marshall: You, so we can comment.
>> Dr. Jordan Dimitrakoff: Thank you.
I -- the reason I applauded Matthew earlier is because
I really applaud the idea of having an open mind; and,
unfortunately, there is no -- having an open mind is not
an entry exam for medical school, yet.
There was, however, a very interesting article in the
New York Times I think a while ago, a couple of months ago,
where the new medical -- the so-called MCATs, or the medical
school admission test, are actually gravitating towards
testing the ADF positions having an open mind, or people that are
actually willing to become physicians having more
of an open mind.
I want to echo something that Dr. Marshall said earlier.
I think that if you really have young and bright people that
go into medicine, you can get them excited
about chronic fatigue syndrome.
They can really be a huge asset, and I think one of the major
issues that we're facing is, Ms. Newton was just saying
or Dr. Newton was saying excuse me, is that I think part of the
reason is that the physicians that you see are not educated
about ME/CFS themselves.
And, as Dr. Marshall was saying, in medicine we kind of tend
to avoid things we don't understand, and shy away from
and even become defensive as we are faced with uncertainty
or a disease that doesn't have a biomarker
or anything definitive.
So, I think part of the solution is probably just, again,
something we're already talking about, just having those studies
which will start with patient participation; then finding
biomarkers that would define the disease; and, then, having
specific, personalized treatment for those patients that fall
into the different subgroups.
But I was just listening to and I just have this question for
you, if you had one wish for your physician or the person
that you've been seeing, what would be your recommendation
and your wish for medical professionals?
>> Matthew Lopez-Majano: What kind of wish?
Do you mean a practical one or a genie wish?
>> Dr. Jordan Dimitrakoff: Both.
Can I hear both?
>> Matthew Lopez-Majano: The genie wish would be that he wins
five successive lotteries so that he can fund these studies
because that's what he would do with the money.
The actual wish is, I'm kind of drawing a blank because:
a) I'm not good with coming up with a lot of new ideas; and,
b) it just seems that it's going to take a much more systemic
change than one person, however good they are, can make.
>> Christina Gustavvson: I completely agree with Matt.
I think that it's just going to take a lot of people to change
how the medical world views CFS.
>> Dr. Gailen Marshall: Let's make that 10 lotteries, Matt,
instead of five.
>> Matthew Lopez-Majano: Okay.
>> Dr. Beth Collins Sharp: Well, I really liked Faith's question
earlier and I was going to turn the tables on you to ask you
what you thought some next steps might be?
I'm thinking about specifically that there have been several
examples given, dyslexia, autism, and others where there
has been success in marshaling understanding and advocacy,
and in the school system in particular, since that's our
sort of focus for the moment.
So I'm wondering based on your experience, both as a parent and
an educator, if there are models you think that are ready for
us to take a look at and see what's been successful in the
past that could maybe help jumpstart what
the next steps might be?
>> Faith Richard-Newton: That's a good question, and I haven't
really thought of it in those terms.
So, I guess, we would have to look at what is working?
Like the autism people, those models seem to have worked
really well, as well as the AIDS.
So, maybe, we need to piggyback on some of what they're --
looking at those models and seeing how we can duplicate
things, because it isn't -- it is definitely a question of, how
do we get the information out to our schools
and to our educators?
And how can we do that in a systemic way so that everyone
understands what's going on?
I think a lot of it is going to have to be done through written
material; whether it's now information printed in our
special education textbooks at the college level; whether
it's printed in our physician handbooks as we train doctors;
whether it's printed in our textbooks
for psychologists and psychiatrists.
I think that will have some effect on change.
In the meantime, I also think we have to have advocacy groups,
the CFIDS organization speak up about ME/CFS, those types
of organizational groups I think, also, will help
get that in there.
Probably third, I think we have to work with the office
of special education.
How do we get that information into the parent information
centers, if that's the vehicle that they want to use?
How do we have parents understand that CFS
is legitimate, is -- it belongs in other health impaired, that
you can qualify for a 504 Plan?
What do you need to get your child on a 504 Plan?
What's the difference between that and an IEP?
You know, we need to get that information out there, and right
now many of our parents who have children that have CFS,
they don't even know what a 504 Plan is.
They don't even know that their child
can qualify for accommodations.
They just simple don't have the background or the knowledge.
So, how do we get that information to them so that they
don't -- so that they're not constantly fighting with the
school system, that they don't see it as an adversarial world.
How can we turn that world around and become partners with
the educational system and work together to get our kids what
they need, so that they learn fast and they can achieve, and
get their high school diplomas and graduate, and go to college?
>> Dr. Gailen Marshall: Deborah [phonetic sp].
Deborah, did you have something?
>> Female Speaker: [inaudible]
>> Dr. Gailen Marshall: Oh, okay.
Well, I think this is coming to an end, right
at the perfect timing.
How nice that it would happen that way.
Once again, I want to thank Dr. Newton and Matt and Tina for
stepping up to the plate, helping us.
I know I've learned a lot and I speak for my colleagues, I know
they have as well, and I hope this information will be useful
to us as we go forth in our deliberations about making
recommendations to the Secretary, particularly related
to children with ME/CFS.
>> Faith Richard-Newton: We would like to thank you for your
time and your commitment in doing this.
It has made a big difference for all of us that are parents that
have kids with CFS.
>> Dr. Gailen Marshall: Great, thank you very much.