Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2 June 14, 2012 11:30am to 12:15pm

Uploaded by WomensHealthgov on 01.08.2012

>> Karen Lambert: Hi, my name is Karen Lambert [phonetic sp].
I'd like to dedicate this to the doctor who told me nine years
ago that I had an irrational fear of diseases.
He told me that nobody cared about me and that I should stop
writing letters and stop fighting because the world
does not care.
I have chronic fatigue immune dysfunction syndrome
and non-HIV/AIDS, idiopathic cd lymphocytopenia.
With these two diagnoses, I believe I am living proof that
the AIDS-like CFIDS is transmissible, something that
the medical establishment seems unable to admit
or to acknowledge.
I also believe I am living proof that CFIDS and non-HIV/AIDS
are basically the same immune disorder.
Nine years ago, after a heterosexual sexual encounter,
I became seriously ill with what looks the natural disease
progression of AIDS.
After an acute infection and a period of asymptomatic health,
albeit very short, I fell extremely ill to an unrelenting,
progressively worsening AIDS-like demise.
I can pinpoint exactly when I was infected with my chronic
viral syndrome of unknown etiology.
And because my acute infection stage was so distinguishable,
I can also pinpoint when my undiagnosed pathogen left
my body and infected yet another host.
I am a link in a chain of sick people.
Whatever I am currently dealing with, it strongly resembles
classic textbook AIDS.
But to add to my inquiry, I also clinically satisfy the CDC's
criteria for diagnosis of chronic fatigue syndrome.
Increasingly, I've become concerned that my systemic
diagnosis is caught up in the treacherous politics of CFIDS,
ME and AIDS.
Most people with CFIDS and ME do not like to talk about the many
symptoms and immune abnormalities that they share
with AIDS patients.
I also suspect most ailing patients would rather be told
that they have the very mysterious CFS than to be told
that they have AIDS.
I have a master's degree.
I was director at my firm.
I used to be a triathlete.
I have never used IV drugs.
I had never traveled abroad.
I can count my sexual partners on two hands.
I fall into no risk groups.
Statistically speaking, I know my undiagnosed infectious,
incommunicable disease is not rare.
So you tell me, if they're not in the miscellaneous CFS bucket,
where are all these other immunosuppressed people?
Anyone with CFS who does not consider the possibility that
CFIDS or ME will eventually progress to a non-HIV/AIDS
diagnosis is very well trumping their own ability to diagnose
the root cause of their illness.
Why isn't CFIDS and ME a reportable disease overseen
by our public health department?
Why are ME and CFS the same exact disorder categorized
as two separate illnesses on a worldwide level by ICD codes?
Doesn't anyone else but me very clearly see the catastrophic
cover-up going on?
Why are we not reading about non-HIV/AIDS cases and or the
AIDS-like nature of CFS on the front pages of every newspaper
in the world?
And if CFS is non-HIV/AIDS then depending upon who you believe,
there's anywhere between 500,000 and 28 million Americans
out there with a transmissible illness.
If that is what it is, our new form of AIDS dwarfs the original
AIDS pandemic tenfold.
Regardless of how politics may try to persuade or delude you,
all you need to know is that my idiopathic immune
dysfunction is infectious.
It is contagious and it is spreading.
I'm not afraid to say I have AIDS without HIV.
I'm equally as unafraid of saying the most obvious
thing about CFS.
It sure does look like AIDS to me.
If it takes courage to think and to say the things that I do,
I hope there will be a miraculous outbreak of bravery
from coast to coast and across the pond.
If people believe that HIV causes AIDS and that CFIDS could
be caused by a retrovirus, why couldn't CFIDS be caused
by an undiagnosed strain of HIV?
That's where I started my plight nine years ago when
I started writing letters.
And I haven't stopped.
It's nine years later and I still write letters.
And I would like to know why CFIDS and AIDS are not looked
at together as one illness, if in fact it's believed that they
are both caused by a retrovirus.
>> Dr. Nancy Lee: You have one minute.
>> Karen Lambert: Over the past nine years after opening
my private foundation, I've gotten the White House
to open an investigation.
I got my senator, John Kerry, to forward my case to the head
of the CDC.
I got the U.S. Global AIDS Coordinator to forward my
Amongst over things, my blood has been to the CDC in Atlanta
twice and to the Washington, D.C. pathology lab.
I've sat on conference call with the American Red Cross and
facilitated by the U.N, I have been out of the U.S.A twice now
to meet with a Nobel scientist and his colleagues
to provide blood samples.
I've come to appreciate that what the doctor once told
me nine years ago that nobody cares is probably true.
But my response to him is this, because his words
still infuriate me.
Just because the world does not care about me does not mean that
I don't care about them.
And I will continue to fight for humanity.
Thank you.
>> Dr. Nancy Lee: Thank you very much.
>> Karen Lambert: Thanks, Nancy.
>> Dr. Nancy Lee: Our next person for public testimony
is Reverend Bernard Hillenbrand [phonetic sp].
>> Bernard Hillenbrand: And unfortunately,
I'm facing the choir.
>> Bernard Hillenbrand: I was here at my birthday and I was
very old then and I'm even older now.
But I come to speak for several hundreds of thousands of people.
They don't have AIDS, they don't chronic fatigue syndrome and
they're not health care givers, but they have people they love
and they are as much tormented by this disease
and as, do as much suffering in their own way as if they
actually had it.
And I have been in that category now for 25 years.
When my daughter, Laura Hillenbrand, and then her
boyfriend and now her husband, Borden Flanagan, they're doing
beautifully at school, 3.8 average and they're athletes
and all of a sudden, my daughter is very ill.
She tries fighting it and nothing is happening and so she
finally had to quit and come home.
And then started this whole question, we took her to all
the best hospitals, the best doctors, someone would say,
"Well, all she needs is more exercise," or what's really the
matter, "Bernie, have you thought of taking your daughter
to see a shrink."
And those were the days, those we the days when somebody cute
thought it would be nice to call this "yuppie flu."
And then there were other people who suggested it was AIDS and
that, I can remember the agony of my daughter trying
to get a dentist because they were afraid of infection.
Now we've come a long, long way since those days.
But we seem to have lost some sort of enthusiasm.
There's a great feeling now that everybody's doing things
a little better but we seem to have lost hope.
My experience of dealing with people who have AIDS, who have
chronic fatigue syndrome, they have a feeling that it's never
going to change, that it won't get -- it won't get solved.
Let me say a couple of things in that regard.
When I was very young, we had polio and we started
of "March of Dimes."
And 10 cents in those days would buy a loaf of bread
or the movies on Saturday.
And I can remember as a kid, collecting those dimes and that
we had a president of the United States who was a living symbol
and we cared enough for him, in all his presidency, we never one
time photographed him in a wheelchair.
But we conquered, we conquered that disease.
That was a triumph.
A second experience.
When I became a minister, I went to -- I was assigned
to Walter Reed as a chaplain.
And Walter Reed is a triumph, isn't it?
Victory over yellow fever.
And I was, and all of the people in the United States military
at that time were sent to Walter Reed and I had my first three
patients were -- had AIDS.
And one of them in particular, I remember.
He was an energetic young kid and wanted to be a soldier,
joined the Army, and of course, AIDS is an immune disease and
so they gave him all his shots.
And I -- we moved a cot -- his mother -- a cot next to him
to help him through his final stages.
And now we know we can take a mouth swab and [unintelligible],
it isn't the death sentence today that it once was.
And during this 25 years, I've had a companion for 21 of them
right here, right here in Kimberly McCleary.
And she's started something now that I want to call the new
"March of Dimes."
She's executive director of the CFIDS Association.
And she has a program where, her emphasis is on research, and she
has program to say, "Well, we're, we have invented this
"procedure, this cure in this disease.
Let's run it against this one."
And, I say the "March of Dimes" because these are
small amounts of money.
We're not talking about -- but these are people who are really
dedicated and they're really determined that we're going,
we're not going to sit around and wait.
We're going to try something.
Something is going to happen and we're going to -- we're going
to make a difference.
I'm sorry that the chairman is not here today because
yesterday, we all sat here so emotional when those little kids
were describing having chronic fatigue syndrome
and their struggle.
And I can remember what the chairman said.
He said, "Just because you have chronic fatigue syndrome now
doesn't mean you're going to have it tomorrow."
And I want personally to accept that to my own pledge for
my daughter, my son-in-law and other people that I love who
have this miserable disease.
And I'm going to spend whatever time I have to be sure that
I do every single thing that I can to bring hope
and to bring enthusiasm.
We are a considerable people and when we make up our mind
to do something, we get it done somehow.
But somehow we've gotten up into a dangle of this, that and the
other things and confusion and the enormous battle between all
the diseases for public support.
But I wanted to take this opportunity again to point out
the miserableness of this disease in terms of the total
number of Americans that get involved in it with hundreds
of thousands of people like me.
Thank you very much.
>> Dr. Nancy Lee: Thank you, Reverend Hillenbrand.
The next speaker will be Ed Jelinski [phonetic sp] and
Tina Tidmore [phonetic sp] is going to read his
testimony for him.
>> Tina Tidmore: Thank you.
I'm Tina Tidmore.
I'm with the communications advisor and Ed Jelinski,
the director and senior policy advisor for Pandora
is -- had other commitments so I'll be reading his testimony.
It's five pages so I will be directing you to the page
where I am speaking.
It will not be the whole thing.
It will be a condensed version.
First, Pandora wants to welcome the new voting members
of the CFSAC.
We're glad to see more people willing to dedicate time to make
improvements for the patients.
We look forward to seeing what experience, knowledge
and resources you bring to this distinguished committee.
We also hope you will humbly learn about the disease from the
veterans on this committee, its history and the government's
action and inaction on this disease.
Especially, take note of the public testimony.
You will find it enlightening and compelling.
We take this opportunity to also welcome Susan Maier as the new
NIH ex-officio and as the new person who oversees the
NIH research on ME/CFS.
You have big shoes to fill.
Dr. Dennis Mangan was driven, open and inclusive.
He demonstrated to us that the DHHS can get things done.
Our organization is optimistic on what you will bring
to this committee.
We acknowledge and we are pleased to see the special
emphasis panel for CFS on the Center for Scientific Review
at the NIH is now named correctly and is only for ME/CFS
as directed by Congress.
A lot of time has been wasted as the improper name affected
its purpose, leading to grants that should've been for ME/CFS
instead being used in research for other diseases.
As Pat Fero with the Wisconsin ME/CFS Association reported
to the committee last year, as much as 18.5 million of ME/CFS
research grants went to studies that did not
primarily study ME/CFS.
How soon will you refund this money to true ME/CFS research?
Page 2.
Dr. Meyer, we would appreciate your finding an opportunity
during the CFSAC meeting to answer these questions
so all can hear.
Pandora welcomes a meeting with you at any time and would like
to continue our communication on these important issues.
To the CDC, our next request is for Dr. Ermias Belay
as the ex-officio for the whole CDC as it relates to CFS.
As you know, the Coalition for ME/CFS submitted a proposal
to the National Center for Health Statistics Department
of the CDC.
Please note that this proposal was solely based
on recommendations made by this committee as far back at 2004.
The Coalition's proposal was to reclassify CFS
in ICD-10 CM and ICD-9 CM.
We were pleased that the NCHS accepted the proposal
for reviewing because the reclassification of CFS
in ICD-10 CM to the neurological chapter where myalgic
encephalomyelitis is also located is a positive move.
However the NCHS presented their own option that contradicts what
this committee of experts recommends.
The NCHS procedure as stated on their website was for the
decision on this proposal to be made before January 1, 2012.
Yet to date, no decision has been announced.
We know the implementation of the ICD-10 CM has been delayed.
But that has no bearing on the continued revisions of the
ICD-10 CM as they are still holding committee meetings
and accepting proposals.
Since last November, we have emailed them and left phone
messages with no response.
Just 10 days ago, Pandora sent a formal letter to the NCHS
director, "Do you know why the NCHS has not followed its own
"rules and announced a decision?
"If you do not, will you help us find out?
We cannot let this issue be placed in limbo."
And Dr. Unger, who isn't here, in 2011, we sent you a letter
welcoming you to your new position and listed some actions
we would like to see from the CDC.
We're pleased to see that you have taken action on five
of those points.
However there are six points that are still remaining and
we ask that you look at them.
They're in the written testimony.
Page 3.
We are very concerned that the CDC website still treats CFS
differently than other illnesses.
On the page titled "Improving Health and Quality of Life,"
the first topic is CBT.
It says, "CBT has been successful in helping patients
with cardiovascular disease, diabetes and cancer."
But CBT is not mentioned or recommended on the CDC website
in information for those diseases.
The recommendation to someone for diabetes, if needed, is for
counseling to help the person cope with
receiving that diagnosis.
So we --
>> Dr. Nancy Lee: You have on minute.
>> Tina Tidmore: Okay.
As is true with any diagnosis, if an ME/CFS patient has
comorbid depression and or anxiety than CBT or other
appropriate treatments should be recommended.
However the information listed under CBT in the CFS section
of the CDC website is actually the type of guidance a person
should receive from their physician.
That, or nurse, that is how to pace their activity and avoid
exacerbating the illness.
This is just like the lifestyle changes physicians give
to someone with diabetes about exercise and diet.
A diabetic does not get this information from CBT.
It comes from a nurse or a physician.
We have a mislabeling problem and a double standard.
This should be corrected.
We also note that the new CME video is now on Medscape
sponsored by the CDC.
We feel the CME is an important improvement from what we've seen
from the CDC in the past.
However we have great concerns over some of the content,
especially at the end when the discussion turns to illness
behavior or behaving like she should be ill or start trying
to live up to the diagnosis.
This fault's impression could be given in some of the statements
that these patients display illness behavior because they
want to remain on disability.
What an awful and misleading message to give to physicians.
How will they then treat the patient who does not --
>> Dr. Nancy Lee: You're, I think you're out of time now.
>> Tina Tidmore: Oh, okay.
Thank you --
>> Dr. Nancy Lee: Thank you.
>> Tina Tidmore: -- and we did sign the letter, Mary Dimmock's
letter in [inaudible] --
>> Dr. Nancy Lee: And we have your public testimony.
Mr. Jelinski's will be --
>> Tina Tidmore: Yes.
>> Dr. Nancy Lee: -- on the public record.
>> Tina Tidmore: Great.
Thank you.
>> Dr. Nancy Lee: Our next speaker will be via phone and
it is Samantha Hodge Williams.
>> Samantha Hodge Williams: Hello.
>> Dr. Nancy Lee: [inaudible]
>> Samantha Hodge Williams: This is.
Can you hear me okay?
>> Dr. Nancy Lee: [inaudible] you're going
to have five minutes.
>> Samantha Hodge Williams: Thank you so much.
>> Dr. Nancy Lee: Sure.
>> Samantha Hodge Williams: Hello, my name
is Samantha Hodge Williams.
Thank you, first of all, for video-casting your meeting.
Although I can't -- although you can't see me, I've been able
to quietly watch the two days of presentations and discussions,
I think probably along with hundreds of other homebound
patients and caregivers and practitioners.
And I wish you had a monitor on your end because it would
be a lot easier to use a webcam to communicate face to face.
But I'll do my best over the phone.
So first and foremost, I want to thank you.
I want to thank this committee and the advocates for all
of your hard work, supporting scientific research and provider
education on ME/CFS.
This is my first time testifying.
Back in 1997 when I was 21, I graduated Summa Cum Laude from
the Wharton School of Business and I received the Dean's Award
for "Service to the Community."
And then in the same year, I became suddenly ill and was
diagnosed with ME/CFS.
Prior to ME/CFS, I was a motivated student
and hardworking volunteer.
In middle school, I testified before the United States Senate
in support of service learning programs and in high school,
I was invited for a live interview
on "Good Morning, America" about my volunteer work
in nursing homes.
And then at 21, I became so dramatically ill that my family
flew me to the Mayo Clinic where I was diagnosed with CFS after
a week of diagnostic tests.
The physicians explained that I was unlikely to ever be able
to work or live alone.
Since I was determined to prove them wrong, I refused to apply
for disability and I worked part time against medical advice.
Of course, within a few years,
my E.R. visits became more frequent and
my health deteriorated.
It's now 15 years later and I can't be at your meeting
in person because I've been bedbound on a continuous
IV saline drip in order to stay conscious for six weeks.
Sometimes lying flat on the continuous saline isn't enough
and I still start to pass out and we have to rapidly infuse
one or two liters of the saline with the bag fully open before
I'm able to regain consciousness.
As you probably know, saline has been part of the standard
protocol thanks to Dr. Rowe who I think spoke yesterday
[unintelligible] since the mid 1990s.
And yet, I have not met a single physician or a single nurse
in any hospital who is familiar with ME/CFS and MNH treatment
except for two who, themselves, each had sons with this illness.
Despite having all these personal records and
instructions, I have been refused adequate rehydration and
forcibly held upright whilst losing consciousness
more than once in an E.R.
This is a common ME/CFS experience as a nurse yesterday
testified about a pregnant ME/CFS patient in Michigan.
These life-threatening situations can be averted.
Which brings me to your discussion about
the IACFS physician's primer.
I encourage the CDC to provide a link to the primer in lieu
of their current toolkit.
The CDC toolkit really should be removed until
it has been updated.
I appreciate the CDC's recent website improvements.
But the current toolkit could mislead physicians to treat very
ill ME/CFS patients like myself with outdated, inappropriate
and harmful treatments.
Yesterday, there was also some discussion about shortening
and simplifying the primer.
But I do think this is a bad idea.
Although I don't have any medical training, I was able
to understand the primer.
Providers need at least this minimal information in order
to diagnose and treat ME/CFS patients, especially the
information about orthostatic intolerance and its treatment.
I'd support this committee becoming the designated DHH
experts on ME/CFS so that all the agencies first had to get
this committee's approval before they posted the information
to ensure that it was accurate.
In closing, I've always naturally been very
persevering and enthusiastic.
But in truth, I am not sure how I will endure another 40 years
of this degenerative illness.
I have already been hospitalized for a week in the
I have watched my mother, a formally athletic physical
therapist and author, also become bedbound on IVs with
the same condition.
Last week, her core body temperature deregulated from
98 to 93 degrees in minutes.
Her GI symptoms exacerbated and her heart rate jumped from
80 to 150 upon standing.
ME/CFS is clearly disabling and life-threatening.
Without a breakthrough in research and treatment, I try
to think of the burden that I will become on my siblings and
on the state if my illness continues to worsen.
Since I couldn't be there with you in person, I've mailed your
group a blanket of some of the saline bags that were used
to keep me conscious while lying flat for the past six weeks.
Since homecare infusion isn't covered by Medicare,
I paid around $1,900 out of pocket for this infusion,
roughly four times my monthly disability payments.
Hopefully, I won't need a lifetime of basic care thanks
to this committee's continued work on behalf
of patients like myself.
So thank you very, very much.
That's all.
>> Dr. Nancy Lee: Thank you, ma'am.
>> Samantha Hodge Williams: Thank you.
>> Dr. Nancy Lee: [inaudible].
>> Samantha Hodge Williams: Thank you very much, all of you.
>> Dr. Nancy Lee: Sure.
>> Samantha Hodge Williams: Okay.
>> Dr. Nancy Lee: Our next speaker
is Matthew Fairman [phonetic sp].
>> Matthew Fairman: My name is Matthew Lazell-Fairman.
I never imagined before becoming sick.
>> Dr. Nancy Lee: [inaudible].
>> Matthew Fairman: I'm sorry?
I never imagined before becoming sick that an illness could so
completely redefine my life.
Instilled with the inspirational ideal of the disabled who rise
above their limitations to achieve great heights,
I imagined that disabilities were obstacles that could
be overcome, at least to some degree.
One only had to pull oneself together and rise
above the obstacle.
It was to my horror then to become sick with ME/CFS,
an illness that I could not rise above, an illness that wrecks
both body and mind, rendering victims living shells of their
former physical and intellectual selves and leaving them forever
to languish on the margins of an unaware and uncaring society.
No description can do justice to the experience of this illness.
To those with only healthy points of reference, ME/CFS can
only be described as feeling at all times like you have just
finished running a marathon while extremely hung-over and
severely sick with the flu after not having slept
in at least three days.
And even the slightest exertion, brushing, showering, reading the
newspaper, washing dishes, amplifies that feeling to even
more unbearable levels to the point where you can only lie
on your back, face up in a dark room, to not feel worse.
And the longer you are sick, the more ragged and worn
out you feel.
To state that ME/CFS is comparable to late stage AIDS,
congestive heart failure and MS does not begin to convey
the severity of this illness.
The harsh, soul crushing reality of an incurable illness that
straightjackets the bodies and minds of its victims
is lost in translation.
For me, the change from vibrant life to pallid sickness
was frighteningly abrupt.
I graduated from Connecticut College, Phi Beta Kappa and
Summa Cum Laude, after winning awards in my final years for
"Outstanding Achievement" in writing a 275 page honors theses
on the evolution of wartime repression in America.
After college, I backpacked across Asia for five months,
traveling alone for two and a half months through an unstable
part of Western China, India and Southeast Asia.
During that trip, I went scuba diving in Bali, climbed
mountains in Tibet, road a motorcycle through Northern
Thailand, found myself targeted by gem-smuggling scam artists
in India and once road a train so packed that I was forced
to stand for 17 hours of a 25 hour journey.
I also met the wonderful woman who has become my wife.
A life of joy and promise lay in front of me.
Today, the sense of boundless opportunity is gone, replaced
by never-ending sickness that totally dictates the boundaries
of my life.
Only two years later, I am unable to work, am largely
housebound and cannot read or write for more than a few
minutes without developing headaches and becoming confused.
I cannot sustain any significant physical or mental exertion
without suffering a severe crash.
On days when I crash, I am often so sick that I cannot even leave
on the TV as the light and noise aggravate my symptoms.
On those days, being too sick to do anything at all, I just lie
in bed, lightheaded and zoned out, my head aching, my eyes
burning like fire, my muscles sore and weak and exhausted
to a degree the healthy have never known yet unable to sleep.
My every experience of reality is mediated by pain and
incomprehensible fatigue from the moment of waking to the
moment of sleep.
My reality is a daily struggle, not just to overlook the harsh
reality of physical suffering that never departs or to come
to grips with watching all my peers surpass me while I grow
physically weaker and my mind dulls but to attempt to find
meaning in a life that has been so severely circumscribed
at such a young age.
You must know that ME/CFS is one of the most severe illnesses
in America today.
This illness is not the "yuppie flu" as popularly imagined
nor is it all in our head as our uneducated medical community
too often believes.
Rather, it is a serious, life-robbing illness that
is so torturous, so difficult to bare that some choose suicide
to escape it.
It is beyond travesty then that ME/CFS receives such
an outrageously small sum of taxpayer funds for research
while other illnesses of similar severity and often smaller
patient populations receive hundreds of millions and even
billions of dollars for research.
When this illness is one day solved, it will no doubt
be obvious to all as it is to the doctors, patients and
advocates here today that those we trusted as stewards of the
public health were too busy, too inattentive, too locked into
erroneous, outmoded preconceptions to realize how
vastly they were failing to meet the trust we put in them.
More than any moment in the past, this moment
is the time for change.
The Norwegian government has already issued a formal apology
for decades of neglect and utter disregard.
It is time for the U.S. government to follow suit,
to embrace this illness with the seriousness and vigor
that characterized the fight against HIV/AIDS.
For that to happen, public officials responsible for ME/CFS
must take seriously the trust implicit in their position.
For it is their moral responsibility to break down the
doors that we sick patients cannot reach, to give form
to the outrage we patients, doctors and advocates feel
by savagely working the message to Secretary Sebelius that this
illness cannot be ignored any longer.
>> Dr. Nancy Lee: You have one minute.
>> Matthew Fairman: I realize I'm over my time but let me just
say one last thing.
The most frustrating thing about living with this illness
is knowing that all this horrible suffering, the one
thing that stands in our way is the people here at the NIH,
the FDA and the CDC who in 30 years have never taken
this illness seriously.
How many more of these meetings do we have to listen to civil
servants pass the book year after year after year?
That's all I have to say.
>> Dr. Nancy Lee: Our next speaker
is Joseph Landson [phonetic sp].
>> Joseph Landson: Hello, I'm Joe Landson and thank you for
allowing me to address the CFSAC today.
I'm testifying on behalf of my primate friend here,
Sim Ian [phonetic sp].
Sim was lately employed in research laboratory.
He asked my help in relating his experience there because of the
overlap with the ME/CFS patient experience.
Having been placed in a three-foot square cage, Sim
was repeatedly chastised for not participating
in graded exercise.
That criticism did not sit well with him, no pun intended.
Further more, Sim received a negative personnel review
for failing to cooperate in talk therapy sessions.
This is a real head-scratcher.
Obviously, Sim doesn't talk as evidenced
by my testifying on his behalf today.
Finally, Sim developed health issues as a result
of his laboratory service.
When he applied for disability benefits, the lab denied he had
even worked their until he produced the only pay stubs
he had available.
After that, they mocked and minimized his condition and gave
him a paltry settlement that barely acknowledged the degree
of his disability.
ME/CFS patients will recognize some of these experiences.
While Sim is disappointed, he nonetheless feels his brief
career was worthwhile, if only for his extensive study of human
researchers, fascinating creatures that they are.
On the one hand, they engage in highly complex language
processing, talented manipulation of chemicals
and tools and intricate social interactions in pursuit
of continued grant funding.
On the other hand, what Sim thinks researchers have trouble
doing is something that seems very simple.
They can have trouble changing their minds.
In other words, working daily with so much exacting detail,
they can have problems developing a new concept
or a new approach to the problem they're trying to solve.
Throughout history, even when researchers do try to advance
a new concept of a problem or an illness, they get treated much
the way Sim was, with disdain.
The history of ME/CFS and its previous incarnations seems
to be a story of the same concepts and models getting
recycled over and over.
It's hysteria, it's stress, it's infectious.
Now we have some evidence that it's an autoimmune disease.
But the evidence doesn't quite fit existing ideas
about, of autoimmunity.
Sim realizes how important it is to have statistically
significant results from large aggregate data sets but at the
end of the day, isn't it more important to ask the right
questions to frame the problem in the right way?
Sim and I agree that many researchers are not yet asking
the right questions about ME/CFS.
While it's classified neurologically, it is mostly
treated psychiatrically while not really seeming at home
in either space.
What space does it belong in?
Will finding or making that space make life easier for all
us primates, be they bipedal like us or arboreal
like Sim here?
Maybe --
>> Dr. Nancy Lee: You have one minute.
>> Joseph Landson: Thank you.
Maybe if we get a unifying hypothesis of ME/CFS that makes
sense, we can all be swimming in the same jungle, to borrow
a phrase from Sim here, rather than so many different
disciplines, each describing the illness
in its own, untranslatable way.
Sim thinks the fractured research vision may
be contributing to the underestimation, underfunding
and continued disdain for ME/CFS and its patients.
Just a thought from a former lab primate.
Thank you for your kind attention.
>> Dr. Nancy Lee: Thank you.
>> Joseph Landson: Thank you.
>> Dr. Nancy Lee: Our last speaker for this session
is Jennifer Spotila [phonetic sp] and she's calling
in from the phone.
>> Jennifer Spotila: Hello.
>> Dr. Nancy Lee: Yes.
Mrs. Spotila?
>> Jennifer Spotila: Yes.
>> Dr. Nancy Lee: Yes, this is Nancy [inaudible].
>> Jennifer Spotila: Thank you.
>> Dr. Nancy Lee: [affirmative].
>> Jennifer Spotila: I can't see the speakers' table from the
video-cast but I believe Cort Johnson [phonetic sp]
is representing me at the speakers' table since I'm too
ill to be with you in person today.
I am not an invisible sufferer.
Actions speak louder than words.
Unfortunately, most of what we hear from the
Department of Health and Human Services is words.
Words and empty promises.
Despite all the effort you have invested in making
recommendations to the secretary, there's very little
action to report.
HHS updates the recommendations progress chart for this
committee twice a year and I assume that you examine
each version closely.
This chart is the only public metric for progress at HHS
and it is disappointing to say the least.
In the last 20 months, only three of your recommendations
have been marked with updated responses and many of the
recommendations marked complete have not actually been
accomplished as you intended.
I compared the progress charts dated October 2010, March 2011
and December 2011, which is the most recent version I have.
Each chart was updated to add the new recommendations from
your meetings, bringing the total number to 65.
Apart from that, the progress reports were as follows.
Regarding your recommendation that ARC's expected review
of CFS for the "State of the Knowledge" meeting should
be widely communicated, the March 2011 progress chart stated
that NIH is in discussions with AHRQ regarding the review.
But as you are aware, no AHRQ review was completed in time for
the "State of the Knowledge" meeting or since.
No progress there.
Regarding your recommendation that several agencies
collaborate on developing a demonstration project focused
on more effective care for people with CFS, the March 2011
progress chart stated that additional knowledge of causes,
care coordination and treatment for CFS is needed before this
can be undertaken.
No progress there.
Regarding your recommendation that HHS engage the expertise
of the CFSAC to advance policy and agency responses to ME/CFS,
the December 2011 progress chart stated that several members
helped plan the SOK meeting and review the CDC website.
It's better than nothing, I will admit, but I don't believe that
meeting planning and website content review is where you can
add the most value to the policy and agency responses to ME/CFS.
That's it.
Three progress updates over a period of 20 months and those
updates were no, no and ongoing.
Furthermore, I direct your attention to items like your
2006 recommendation that NIH issue an RFA with
specific funding attached.
That recommendation is marked yes, complete.
And the note states that two program announcements were
issued in 2008.
But we know the program announcements do not have
dedicated funding attached and no RFA has been issued by NIH
in six years.
Despite that significant discrepancy between your
recommendation and what has been done, this is reported
to you as accomplished.
What are we to conclude from this?
We always hear nice promises at these meetings.
There's always the illusion that real progress is being made,
that things are beginning to change.
But to me, the lack of progress on your recommendations and lack
of accountability at HHS for ignoring your recommendations
is the true barometer of where we are.
Committee members, don't mistake these updates for real progress.
To borrow from Dr. Grobstein's [phonetic sp] comments
yesterday, keep track.
Keep asking.
Actions speak louder than words.
In our case, inaction speaks louder still.
14 months ago, Dr. Francis Collins announced that the
Secretary had directed that CFS be given quote,
"special attention," close quote.
Is this what special attention looks like?
Maybe it's just me but I am not seeing much difference between
the special attention we are allegedly receiving now and the
lack of special attention we had before.
I'm thrilled CDC is revising some of its materials
but that is not enough.
Meeting with patient groups is not enough.
I signed the joint letter from advocates and groups because HHS
must undertake a strategic, coordinated and fully funded
effort to address the critical priorities for adequate ME/CFS
research, treatment and provider education.
I call on HHS to put an end to this perpetuation of the status
quo cloaked in words and promises.
Do something real.
Act on this committee's recommendations.
We need answers.
We deserve action.
Thank you.
That concludes our public comment for this meeting and
I just want to thank all of the people who came forward and
provided their comments, both in person and on the phone and for
the people who helped those who could not speak
by reading their testimony.
It's always very important that we keep ourselves real here
in this committee and I appreciate your efforts.
We're going to now have an hour, almost an hour, for lunch and
the committee will meet in subcommittees and we will take
you down to your rooms where those are.
And we're going to meet back here promptly at 1:15 where
we're going to have, I think, a new, a new sort of presentation
here with CFSAC where we're going to hear from some of the
many organizations that are out there working to improve the lot
of people with CFSAC, with CFS and with ME/CFS and
with their families.