Dr. Reeves at the CFSAC: Too Little Too Late?

May 29, 2009

Posted by Cort Johnson

Dr. Reeves produced the five year plan for the CDC’s CFS research team.  He was in his element.  He seemed sincere and open; patients think of him as something of an ogre but you’d never get sight of that in his presentations.  Kim McCleary later noted that he’s a master at the art of presentation.  But one suspects that he’s masterful in the way that many government officials are. They’re always very nice but it’s often difficult to get a straight answer to a question. 

The standard MO for dealing with an issue seems to be to give a history lesson.  So when someone asked about the efficacy of the empirical definition Dr. Reeves spent 10 minutes going into depth about what is and how it came.  He’s not stating anything anyone doesn’t already know but the answer eats up time and ends up deflecting  the original question.  The only way to stop this is directly interrupt the monologue and re-insert the question – which few people are willing to do. 

Dr. Reeve’s presentation on the draft strategic plan was a classic example of this kind of this deflective technique. Although it was supposed to be on the next five years much of it simply went over the CDC’s accomplishments of the past 10 years another good chunk of it focused on how the plan was developed. Only a small portion was actually devoted to what it consisted of.  Both Kim McCleary of the CFIDS Association of America and Dr. Glaser expressed frustration at the lack of specifics in Dr. Reeve’s presentation.

The CDC: Overhauling ME/CFS

The external review panel wanted the CDC to lead the field with regard to treatment and an international research network and by god they’re going to try to do so.  The next year the CDC is going to insert itself into three huge issues; how to treat this disease, how to define it and how to create an international research network. They are going to do that by conducting three international workshops. 

On the face of it the workshops suggest that the CDC has gotten the message, hammered again and again over the last couple of months, that it needs to collaborate more.  But as the CFSAC members made clear in the past the CDC’s has had a different definition of collaboration than the rest of the field.

The collaboration issue was hit again and again by the CFSAC members and it goes to the heart of what some researchers believe is wrong with the group – that they’re not interested in other peoples work and are out of touch with a good chunk of the field.  The panel was always polite but they made it very clear that the research community has had it with the CDC’s ‘collaborative’ efforts of the past.

The CDC, for instance, ‘collaborated’ during the early stages of the Empirical definition and then turned its back on the rest of the field and developed the actual definition by itself.  Dr. Oleske went so far as to say that the CFS research program was an outlier in its own agency in its unwillingness to play well with others.

For some reason you (talking to Dr. Reeves) would rather have a paternalistic relationship with other investigators… This is so out of character (with how the rest of the CDC operates). It seems like chronic fatigue is treated differently than any other disease at the CDC…We (the research community) want to be involved in an open relationship with you”. 

Dr. Klimas, the past President of the IACFS/ME and a current board member made it very clear that she expects the IACFS/ME to be ‘a full  partner’ with the CDC – not someone who simply signs onto the process and gets patted on the back. She, for example, wants the IACFS/ME, to be involved from the ground up in the development of the workshops. She noted a lot of talent people who feel they’ve been shut out by the CDC would love to work with them (for free) and that the CDC is missing out by not utilizing their talents.   

The Acid Test – the Three Workshops

We’ll quickly see how serious Dr. Reeves, who several times noted the need for better communication from his group, is about collaborating. The workshops are a rather bold move to address fundamental questions about ME/CFS; if a wide range of viewpoints are incorporated then they’ll work out well. If the CDC handpicks the researchers as they have in the past they’ll simply further divide the field.  

 The IACFS/ME is currently in the middle of creating its own treatment guidelines –  leading to the very distinct possibility that we could end up with two very different treatment guidelines.  (We already have two physician education programs!) . If Dr. Reeves incorporated IACFS/ME positions into the treatment management workshop it would be a real boost for ME/CFS sufferers.  But Dr. Reeves didn’t show any interest in collaborating with the CAA on the physician education program. Will he fully collaborate with field on treatment program? If he does he’ll have to accept some positions he hasn’t supported in the past.

Blunt Questioning – It’s hard to know exactly where Dr. Reeves stands on a range of issues and with the CFSAC’s help we got some idea today.

A Psychiatric Disorder? – When bluntly asked by the Rebecca Artmann if he believes ME/CFS is a psychiatric disorder he flatly stated no. He believes it’s a brain disorder but that the problems go both ways – the mind and body interact together  - as they always do in chronic illnesses. He pointed to CDC work demonstrating abnormalities in the lower brain areas.  I believe he’s telling the truth and the CDC research to date bears this out – they do not have a predominantly psychological orientation to this disease.  The problem is that Dr. Reeves approach appears not to have  much more than a mind-body answer to this illness.

CBT - What about CBT? Is CBT the answer for ME/CFS? Again, he said no – CBT only applies to a subset of ME/CFS patients and the CDC hopes to begin pharmacological trials of drugs for ME/CFS. The draft strategic report mentions Hemipherx (Ampligen), Cephalon (Provigil?) but the only treatment trial that is on the books is yet another CBT/GET trial. It’s got it’s own twist (brain scans) but we’re nevertheless  the dealing with a product that has at best moderate results in some patients.  The treatment toolkit at the CDC remains sparse and unimaginative.

We also learned that the relationship between Dr. Reeves and the UK was initiated by Dr. White coming to the CDC for guidance on ME/CFS.  The UK, of course, has taken a strictly behavioral approach to this disease.  As the CDC cut funding for pathophysiological work done by Dr. Klimas and the Dubbo they’ve reportedly continued to supply funding for the NICE trials.  This suggests, of course, that in the mind-body scenario the mind plays the uppermost role in Dr. Reeve’s conception of this disease. 

Herpesviruses - When asked by Dr. Glaser if he believe EBV or HHV-6 plays a role in ME/CFS he said that he believes it does in a subset of patients but he questions how large that subset is. He noted that in his studies 75% of patients have gradual not acute onset. He stated that he’d love to do those pathogens but that he doesn’t have the funds and that there were already talented people doing that.  If he was given the funds, though, ‘he would be ecstatic’. 

 Yet Dr. Reeves had to be cajoled into attending the Symposium on Viruses and from what I could tell he disappeared from most of it. I asked him if he would be willing to collaborate with the Whittemore-Peterson Institute on their viral/immune subset and he said he would be and that they are moving in that direction now.  Thus far the two groups have had absolutely no contact.

The Money – It’s true that Dr. Reeves doesn’t have a lot of money. It’s also true that relative to everyone he has ‘a lot of money’. The CFID’s Association is not making the claim that the CDC’s is doing ‘bad’ research but that it’s simply not doing good enough research.  The fact that there’s little money to go around simply means what there’s needs to be used as efficiently as possible.  The major player in this illness needs to  be doing more than  simply (slowly) filling in around the edges. No one’s getting any younger as we wait for the CDC program to produce. 

A New Leaf? Or Too Little Too Late?  Is this government speak or is Dr. Reeves serious about finally bringing the rest of the field in?  After talking to her Kim McCleary was clearly not going to hold her breath on that one but we should learn soon enough when the Workshops kick off.  Will the WPI’s ideas show up? Will the IACFS/ME be included in a fundamental way? Will new ideas show up in the final product? Or will the CDC attempt to manage the results as it did with the Empirical Definition leaving one portion of the field even more disenfranchised than before?

Or is it possible that the new more communicative, more open Dr. Reeves shown up too soon? The day after he left the CDC was hit with two more calls for his removal and this time it wasn’t patients that were doing the calling.

 

Kim McCleary on the CDC’s Five Year Plan

 Dr. Reeves: Too Little Too Late?

Systemic Change Needed: CAA Hits CDC Again

Patient’s Blast the CDC

8 comments

{ 8 comments… read them below or add one }

Tom Kindlon May 30, 2009 at 11:07 am

Well done on getting this up so soon after the meeting, Cort.
It’s a great resource. I only dipped in and out of watching the meeting.

I think it’s perfectly understandable but I think you missed out on what Bill Reeves actually said on “CBT/GET” (he used that phrase).
~~~~~~~~
“We are in the process of planning a Cognitive Behavioural Therapy and Graded Exercise trial as part of the provider registry population in Macon.

We are going to do that in collaboration with the providers in Macon, with
Mercer medical school, with the UK group and with Mayo clinic.

And obviously CBT/GET is not the cure for everybody – nobody knows how many
it is – it probably applies to a subset.”
~~~~~~~~
Saying CBT/GET isn’t a cure for everybody is not the same as what you wrote:
“What about CBT? Is CBT the answer for ME/CFS? he said no – CBT only applies to a subset of ME/CFS patients”.

If one takes Peter White. He recommends GET for all CFS patients. But he doesn’t say it’s a cure for all. The sort of things he says is that it leads to substantial improvement in 3/4 with recovery in 1/4. Bill Reeves didn’t saying anything different.

Talking about CBT and GET as “cures” for CFS is strange language. Few people apart from Peter White and Gijs Bleijenberg (and colleagues from Nijmegen) use such language. And both have been on various panels with Bill Reeves.
Bill Reeves also said at a recent CFSAC meeting that he talks to Prof White on the phone “fairly regularly”. I haven’t seen evidence in recent times he disagrees with Prof White.*

* Except when Peter White was challenging the empirical definition when he was a reviewer for one of the CDC’s paper (when Bill Reeves wouldn’t back down from its use or also include the data analysed by not using the empirical definition). Although, very strangely, the 4-man panel (incl. Peter White) praised the empirical definition.

Reply

Cort May 30, 2009 at 1:47 pm

Thanks Tom,

My problem with the CDC entering the CBT/GET field is similar to my problem with other aspects of the CDC’s plan – it doesn’t promise to move the field forward significantly. The CDC will try to use brain imaging techniques to determine which patients will benefit from CBT/GET or provigil or other drugs of this type. That’s interesting and its even helpful and if we were AIDS and were awash in research funds then studies like this would be fine. But CBT/GET have been amply explored death and provigil is no-ones answer to this disease. (It’s kind of weird that now that we know that CBT/GET is NOT the answer to this disease the CDC is finally taking them on). Instead of leading this field the CDC is filling in around the edges- and with the aborted study efforts the CFIDS Association has documented – they’re taking a damn long time to do it.

Peter White has wanted to have it both ways from the beginning; as a reviewer he questioned important aspects of the Empirical Definition and then signed off on it – despite the fact that his concerns were not addressed. Now he’s signed off on it again.

Reply

Khaly Castle May 31, 2009 at 10:17 pm

Thanks for your participation and recording of the events, Cort. I’m afraid my take on what Dr. Reeves said and how he presented it was a little different from yours. I have to agree with Tom on all counts.

I’d like to add, too, that I found Reeves neither sincere nor open. I found him to be quite condescending, and thought his reference to the fact that 8 stakeholders appeared at the stakeholders’ meeting, and 30 something phoned in was appalling. His comment that he “wasn’t trying to be funny” about the low attendance, and that the subsequent emails amounted to a rehash by the same attendees, led him to state that it would be difficult for him to believe that 90% of stakeholders agree, given that he is basically hearing from the same people over and over.

This is not the first time that he has made such a comment.

He is quite deflective, and spends inordinate time rehashing old news and dodging legitimate questions while maintaining a rather condescending attitude. I do not find this to be “open” in the least.

Also, regarding his discussion of things “going both ways”, which he brought up several times…this was brought up first in relationship to stressors and allostatic load difficulties. The implication, or so it seemed to me, is that stress is a major factor in causing CFS, and that CFS perpetuates stress. The fact that both he and, mysteriously, virologist Jones, are caught up on allostatic loads and childhood trauma, combined with Reeves’ lengthy and apparently awestruck relationship with Peter White, do not bode well for the CFS community.

Reply

cort June 1, 2009 at 3:12 am

Khaly I think you missed the gist of the first part of my post. Perhaps I should have stated that he ‘appears’ to be sincere and open. I was trying to get across the point that although he is sincere and open in the way that many government officials are. They’re all very understanding and very open but they are also masters at the art of deflective technique. This is what I stated in the post – “Dr. Reeves presentation…was a classic example of this deflective technique….it simply went over the accomplishments of the past…only a small portion was devoted to (the plan)”. I was trying to get across the point that while he appears to be open he is actually not open at all.

After talking to him briefly I got the sense that Dr. Reeves believes that the CFIDS Association of America is coordinating a campaign against him – an odd idea – given that many in the community probably wish that the CAA would do something like that. The CAA generally focuses on presenting the facts rather than cajoling patients to take a stand one way or another.

Yes Dr. Reeves was trying to minimize the patients contribution at the meeting – something one can understand on a personal level given it was so incredibly negative towards him. I’m sure his facts were correct though. If I remember correctly I think he did state that the CDC received several hundred e-mails on the issue – which would indicate high participation on the part of the ME/CFS community.

I mirror your concerns about the direction of the CDC’s research which I think the post reflects.

Reply

Khaly Castle June 1, 2009 at 8:46 am

Hi Cort. He did mention the several hundred emails, but tried to trivialize by indicating that many were the same person, or repeats of the same people who already testified.

I’m afraid I cannot be as generous as you are toward Reeves!

Khaly

Reply

Erik Johnson June 1, 2009 at 11:46 am

Here’s a little “history lesson” from Incline Village.
Dr Reeves says that the “CDC’s study at that time failed to
identify any evidence that there was an unusual occurrence of a chronically
fatiguing illness.”

One can read in Osler’s Web about all the immunological findings which necessitated Kaplan and Holmes visit out to Lake Tahoe… so how can such a statement even remotely “appear” to be true?

Well, it IS true, but it takes a bit of a stretch.
The CDC’s team didn’t find the evidence.
It was Dr Cheney and Dr Peterson who found it.
-Erik Johnson
Incline Village “Tahoe Flu” survivor

Station: Cable News Network (CNN)
Date: Oktober 24, 1999
Programme: CNN & Time
URL: http://cnn.com/TRANSCRIPTS/impc.html (home page)
http://cnn.com/CNNPromos/cnntime (home page 2)
http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text)

SICK AND TIRED
————–

ANNOUNCER: CNN & TIME. Tonight, “Sick and Tired.” It’s been called the yuppie
flu, but it’s been anything but a passing fad. It is a major public outcry.
We all have days when it feels like we just can’t roll out of bed. We’re
tired, listless, completely drained. But imagine feeling that way and worse
day in and day out for weeks, months, and even years.

JEFF GREENFIELD, HOST: We’re talking about chronic fatigue syndrome, the
mysterious, debilitating illness that first showed up in the mid-1980s. And if
you thought that this yuppie flu was the invention of hypochondriacs or had
gone the way of Duran Duran or somehow had been cured, consider this. In the
United States alone right now, hundreds of thousands of people may be
struggling with CFS.

Here’s Daryn Kagan.

(BEGIN VIDEOTAPE)

DARYN KAGAN, CNN CORRESPONDENT (voice-over): As the 1999 Women’s World Cup
came down to the wire in penalty kicks, another drama was taking place behind
the scenes.

MICHELLE AKERS, U.S. WOMEN’S SOCCER TEAM: I’m graying out, and I can’t hear,
and my body’s just clenched.

SPORTS ANNOUNCER: Look at Akers. She leads by example.

KAGAN: Michelle Akers played 90 minutes in blistering heat, until her body
gave out.

SPORTS ANNOUNCER: All eyes are on Michelle Akers.

AKERS: So they put me on the table and then started trying to get the IVs in.

KAGAN: Akers’ doctors, coaches, and teammates know her symptoms are real, but
some people think the disease she’s recovering from, chronic fatigue syndrome,
is not.

(on camera): When you say worst, what does worst feel like for people who
don’t know what that feels like?

AKERS: It’s like just feeling totally empty on the inside. It’s like –
there’s no reserve, no energy. It’s like a black hole in the very depths of
your soul.

(voice-over): For years, CFS has been dismissed by many in the general public,
the medical profession, even experts at the Federal Centers for Disease
Control and Prevention. Fifteen years ago, a mysterious illness swept through
the Alpine resorts and towns near Lake Tahoe. Incline Village, Nevada, was
ground zero.

DR. DAN PETERSON, PHYSICIAN: The first ones were isolated cases. A marathon
runner in town who couldn’t run any longer.

KAGAN: Dr. Dan Peterson is a local physician. He saw the first cases.

PETERSON: Then we started seeing the clustering with the girls’ high school
basketball team where the entire team became ill — extremely ill.

KAGAN: At Tahoe-Truckee High School, dozens of students came down with
symptoms resembling mononucleosis. So did a third of the teachers.

JERRY KENNEDY: You’re not tired. You’re — it’s like the blood’s drained out
of you.

KAGAN: Like Jerry Kennedy who taught auto mechanics and drafting and his wife
Janice (ph) who taught English.

JANICE KENNEDY, FORMER HIGH SCHOOL TEACHER: It’s like having bricks piled on
you. It’s as though you’re fighting to move at all.

JERRY KENNEDY: It’s the worst feeling I’ve ever had in my life. I can’t
compare it to anything else that’s ever happened to me.

KAGAN: The number of cases multiplied during the summer of 1985.

PETERSON: That’s when I first thought, well, there’s some new contagious
disease, you know, I mean, there’s something in the water, some Typhoid Mary
had come into the school system and affected the kids and the teachers.

KAGAN: Besides fatigue, most patients developed a bizarre mental fogginess.

JERRY KENNEDY: You feel dumb because you can’t remember things. You forget
people’s — you don’t even comprehend the names. You lose it.

JANICE KENNEDY: As an English teacher, I remember one horrible moment when I
asked myself, “What is a subordinate clause?” I could not remember what a
subordinate clause was.

KAGAN: Eventually, more than 250 people living around Lake Tahoe seemed to
have the illness. For months, Dr. Peterson couldn’t persuade anyone to
investigate. Finally, the CDC agreed to send a two-man team.

JANICE KENNEDY: They didn’t seem to feel that there was an epidemic, and we
knew there was. It might have been small, but it definitely existed.

DR. WILLIAM REEVES, CDC EPIDEMIOLOGIST: CDC’s study at that time failed to
identify any evidence that there was an unusual occurrence of a chronically
fatiguing illness.

KAGAN: Dr. William Reeves is the CDC epidemiologist now in charge of
investigating chronic fatigue syndrome. He didn’t go to Incline Village, but
he defends the team that did. He also defends their findings, which are still
controversial today. REEVES: Using epidemiologic public expertise of the time,
there was no evidence, clear-cut, replicable evidence that anything unusual is
happening in that population.

PETERSON: As I just said right now, I’m right about this. I know that these
people were well, and now they’re sick, and they’re staying sick. So I have to
hang in there and be diligent about it, regardless of what the rest of rest of
the world thinks.

KAGAN: Over the years, chronic fatigue syndrome has been thought of as a
trendy illness, the yuppie flu. Sufferers say the official name the CDC gave
it didn’t help.

JANICE KENNEDY: Ever since they started calling it chronic fatigue syndrome, I
think every person who has had it, every family member of someone who has it,
every doctor who is familiar with it hates that name because it seems to
trivialize.

KAGAN: A diagnostic test for CFS has yet to be developed, but the CDC did come
up with a definition: debilitating fatigue lasting at least six months, along
with four of eight other symptoms. They include sore throat, muscle and joint
pain, short-term memory loss, and an inability to recover from exertion. New
cases have continued to crop up all over the country. Michelle Akers first
noticed her symptoms in 1991.

AKERS: I would go into the shower after training and just cry and cry and cry.
It was the only place I could go to where no one would see me and just say, “I
can’t do this. I can’t do it.”

KAGAN: Akers sidelined herself for almost an entire season in order to
recover, but when she came back to soccer, she suffered constant relapses.
Still, she kept the illness secret from her teammates, friends, even her
family. Finally, in 1996, Akers went public. She wrote an emotional letter to
Congress describing a day in the life of a typical sufferer.

AKERS: That was the first time I admitted publicly even to my folks how bad I
was actually feeling, and I read it to my dad over the phone. I remember my
dad was just stunned.

KAGAN: And so were some members of Congress who voted to give millions of
dollars to the CDC to solve the mystery of chronic fatigue. But less than half
actually went directly to CFS research. That led to another mystery. What
happened to the money?

(on camera): This year, federal investigators found out. The CDC diverted
between $9 and $13 million dollars, money that Congress had specifically set
aside to study CFS. Instead, it was spent on other diseases, like polio and
measles.

(voice-over): It was Dr. William Reeves, the head of the government CFS lab
who helped bring the diversion to light. He says he did so after a superior
asked him to lie about how much money was going to CFS research.

REEVES: I felt that the best thing to do was just to report this to Congress,
and that’s when I formally blew the whistle.

KAGAN: But not before CDC officials gave inaccurate and misleading information
to Congress about how the money was spent. But why was the money taken from
CFS in the first place?

REEVES: It was taken from chronic fatigue syndrome because it was not
perceived by the people doing it as important as the other ones, not perceived
as an infectious disease.

KAGAN: The CDC’s current director, Dr. Jeffrey Koplan, says all the missing
money will be restored over the next four years, and while nobody was fired,
the division overseeing CFS has been put on probationary status.

DR. JEFFREY KOPLAN, CDC DIRECTOR: CDC, in regard to chronic fatigue syndrome,
misspent funds allocated to us for chronic fatigue syndrome, and for that, we
sincerely apologize to all parties involved and in particular the people and
their families that suffer from chronic fatigue syndrome.

REEVES: We were set back. There is no question about that. We were set back
substantially. Programs suffered because of this. This has probably set us
back three to five years.

JERRY KENNEDY: I’m not surprised that the money went someplace else. Somebody
had the power to move it some other place, some pet project they had, and they
did it.

KAGAN: Perhaps the government’s premier laboratory didn’t make CFS a priority,
but other researchers have. Dr. Dedra Buchwald, a Harvard-trained physician,
arrived in Incline Village after the CDC left, and she’s been studying CFS
ever since. She believes she’s on the verge of a breakthrough. She’s designed
a unique study using identical twins. She compares sick twins to their healthy
counterparts, trying to detect differences caused by CFS.

DR. DEDRA BUCHWALD, CFS RESEARCHER: So they’ll put the electrodes on your
head, and then what they do is — they’ll monitor your brain waves.

KAGAN: Mary Nelson (ph) and Martha Williams (ph) are the 21st pair of twins to
take part in Buchwald’s study. Martha was an Arkansas state trooper for 20
years, until a series of worsening symptoms forced her into early retirement.

MARTHA WILLIAMS, FORMER ARKANSAS STATE TROOPER: I always had a reason for why
I was hurting. It was either the leather gear or the bulletproof vest. The
boots. Getting in and out of the car. The headaches was from my hat. Or my
eyes hurt because the sun…

KAGAN: Mary is a construction worker in Missouri. She’s still on the job.

MARY NELSON, CONSTRUCTION WORKER: Oh, yes. Yes. Anything they’ve got that
comes in by delivery, if I’m — I happen to be at the warehouse, I’m unloading
it. KAGAN: Researchers aren’t supposed to know which twin is sick, but it’s
pretty obvious. Martha’s symptoms – fatigue, muscle pain, difficulty thinking
and sleeping — are familiar indicators of CFS.

WILLIAMS: Your legs hurt. It feels like you’re walking on needles. In the
night while you’re trying to sleep, you wake up, and it’s hard to describe to
someone, but it’s like your arms and your legs are asleep, or they’re numb but
they hurt.

(BEGIN VIDEO CLIP)

CFS RESEARCHER: Here we go. Just stare at that thing, and if you have to
blink, blink all at once, get it over with.

(END VIDEO CLIP)

KAGAN: For an entire week, the twins were put through a battery of tests,
tests to measure exercise tolerance, memory and thought processing, sleep
disturbances, and blood hormone levels.

BUCHWALD: What we thought was that there would very substantial differences
between the healthy twin and the sick twin.

KAGAN: But there wasn’t. Both twins performed low on many of the tests.
Buchwald believes it’s because both twins have a genetic predisposition to
CFS.

BUCHWALD: Right now, our thinking is just that there is a group of people that
are vulnerable or that are likely to be vulnerable to get CFS.

KAGAN: Buchwald’s study presents a new option, that hereditary plays a major
role in chronic fatigue.

BUCHWALD: Most people who have that predisposition will never get chronic
fatigue syndrome, but for an unfortunate few, they will be exposed to some
series of triggers or trigger, which could be anything from an infectious
illness to an episode of depression or a motor- vehicle accident, that will
trigger this chronic fatigue syndrome.

KAGAN: Meanwhile, the Centers for Disease Control is still trying to catch up.

KOPLAN: We’re looking at what we have now, what resources we have in terms of
people and laboratory techniques, what studies need to be done, who else we
need to involve from outside in giving us more information. So we’re trying to
set a forward course in saying how can we make a difference with this disease.

KAGAN: They’re starting with a new national head count. As recently as two
years ago, the CDC believed only 10,000 Americans had the illness. Now the CDC
says, based on a study in Wichita, Kansas, that number is actually 40 times
higher. Today, the CDC estimates 400,000 Americans over age 18 have active
CFS.

REEVES: This is a major public health problem, and as I said, in Wichita at
least, this is about a quarter the number of people that have — women that
have breast cancer, and it’s about four times more than the number of women
that have cervical cancer.

KAGAN: But 15 years after the outbreak of CFS in Incline Village, Nevada, the
man who first identified the illness expected to be further along.

PETERSON: I mean, the CDC is still counting heads, still saying this disease
exists, and here are the numbers. Well, we — I never expected to be here
still quandering (ph) this problem 15 years later. I really didn’t.

KAGAN: Recently, Peterson did his own follow-up of 180 of his original
patients.

PETERSON: About 30 percent of them are still severely disabled. The remainder
have had substantial or at least partial improvements.

KAGAN: And how many are completely recovered?

PETERSON: None.

(END VIDEOTAPE)

GREENFIELD: In April, the Social Security administration official recognized
chronic fatigue syndrome as a medical impairment. That makes it much easier
for CFS patients to receive disability payments.

——–
(c) 1999 Cable News Network

———————————————
Co-Cure is not a discussion list. Please do not reply to the list.
Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html
Co-Cure Website: http://www.co-cure.org
———————————————

Reply

Vi June 1, 2009 at 5:38 pm

I also find this increasing preocupation with
CBT disturbing…especially when it fails to “cure”
CFIDS…improving coping in some…great..but that is Not
addressing what is causing the illness….or finding a cure
AUGGHHH (just had to get that out : )

Psychiatry is moving forward into the realm of nueropsychiatry
and these guys are retrograding into “stress” and “trauma”?????

If Reeves wants emails I say let’s give them to him!
Maybe we can lauch an email campaign here and in the online communities.
anyone else game?

Reply

HvS June 2, 2009 at 5:52 am

This is typical. At my academic institution we have an administrator who runs an important division. My colleagues and I are very upset with the way she runs things–she is deaf to our concerns and follows her own personal agenda…sound familiar? Every so often we manage to get the attention of university leaders who then do a little scrutinizing of her activities. Then she acts contrite for a little while.
Formula for bureaucrats with a hold on an agency or department: do as you like, but then show just enough contriteness at just the right moment to keep your hold on things…

Reply

Leave a Comment

Previous post:

Next post: