ACT: FW: Dr. Bill Reeves (head of CFS program at the CDC) and CBT
Tom Kindlon
From: ME/CFS and Fibromyalgia Information Exchange Forum
[mailto:CO-...@LISTSERV.NODAK.EDU] On Behalf Of Tom Kindlon
Sent: 01 October 2009 00:08
To: CO-...@LISTSERV.NODAK.EDU
Subject: [CO-CURE] ACT: Dr. Bill Reeves (head of CFS program at the CDC) and
CBT
I thought I would draw attention to the following quote by Dr. Bill Reeves
from the minutes of the CFSAC meeting, May 2009 (pp.60)
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac052709min.pdf
"The other problem is that in studies that we've recently published, a large
proportion of
people who have CFS have serious psychiatric overlays. Those need to be
considered
as well. But that isn't saying that that is the cause of your illness; that
is saying that that
is something that needs to be taken care of because it's there with your
illness. You
cannot ignore it. There is unhappiness with CBT because CBT is "all in your
head."
Many of you knew me when I was walking on a crutch with a ruptured
quadriceps
tendon and a year's worth of surgery. A huge part of the rehabilitation
therapy was CBT
to help me understand what was happening, understand how I could cope, and
understand what was expected."
The first point is that the empirical definition has increased the
percentage of people with psychiatric issues (many of them may not have CFS
as normally defined at all).
But the main issue I want to point is that I do not believe Dr Bill Reeves
had CBT for his ruptured quadriceps tendon.
CBT is not something that is normally offered for a problem like that.
And I'm not sure Dr Reeves would have gone to regular sessions with a
psychologist (on top of time spent with a physical
therapist/physiotherapist).
If it is the case that he has not gone for CBT, he is either being
misleading or, and I think this is more likely, he does not understand what
CBT is.
CBT is designed for maladaptive beliefs and behaviours. It if involves a
lot of homework where you have to keep diaries. Other psychologists can
probably describe it better than me but one can give coping skills training
and education on the condition without giving CBT.
Dr Reeves' understanding of CBT is important given the CBT want to draw up
management and treatment guidelines including guidelines which have an
international consensus (getting a consensus on management guideliens would
seem very hard to do unless you don't pay attention to the people who
propose a pacing model or an envelope theory model for how to manage CFS -
these are very different from the graded exercise model (which is the basis
of the CBT model for the illness).
As I pointed out before, at this meeting, Dr Reeves said:
"CBT GET. We are in the process of planning a cognitive behavioral therapy
(CBT) and graded exercise (GET) trial as part of the provider registry
population
in Macon. We're going to do that in collaboration with the providers in
Macon,
with Mercer Medical School, with the U.K. group, and with Mayo Clinic.
Obviously, CBT GET is not the cure for everybody. Nobody knows for how many
it is. It probably applies to a subset."
What he is saying is that CBT GET is a cure for some people with CFS. Most
people in the field don't talk as if CBT is a cure for some percentage of
people with CFS. Two of the few that do are Peter White and Gijs
Bleijenberg.
I'm appending a selection of other quotes from the meeting by Dr Bill Reeves
on the issue of CBT, GET, Peter White and the situation in the UK.
Tom
-------
CFS Program Five-Year Goals
[..]
"International Workshop - Research, Clinical, and Pediatric Definitions of
CFS - I
would like to try to get together by the winter of 2009. I know the IACFS/ME
is
interested in this. We want to include countries such as UK that have CFS
care
completely integrated into their healthcare system."
(TK: that's CBT/GET and very little else (the NICE guidelines recommend
against other treatments and against most testing (except basic testing to
rule out other conditions))
-----
Dr. Oleske (Chair of the CFSAC): I'm going to open it up to questions from
the group. The only thing I want to say, Bill, is I was interested in your
comments about the international community and how much
effort will be put into that. While I have no problem with international
collaborations, I
have to say that I think there are times when the domestic agenda suffers at
the behest
of an international agenda. I just hope that we don't dilute the
concentration on the US.
I want to ask you to comment about that.
Dr. Reeves: An excellent comment. Our focus is obviously on the United
States.
There are three important reasons for international collaboration. One of
them I alluded
to. There are countries that have put CFS evaluation, diagnosis, and
management into
their national health systems. The UK is one of those. An international
meeting
provides the chance to learn from another government that has embraced this
illness-
perhaps not to the extent that everybody would like-but is trying to work
with it as a
national health service.
-----
Ms. Artman (member of CFSAC committee): I want to stay on the international
theme. Before this meeting, I sent out
a query to those who participated in the CDC stakeholder meeting to find out
what they
had to say, because I was ill and couldn't attend. Just about everyone came
back with
comments about either Simon Wesley or Peter White treating this as a purely
psychiatric disorder and not as a multi-system complex disorder. There's a
perception
that in working with the UK, we are adopting that this is a purely
psychiatric disorder.
This is a big patient perception issue with the CDC. It's not what you're
actually doing;
it's what we perceive that you're doing. You need to really place an
emphasis on how
you want the patient community to view what the CDC is doing.
Japan is doing such remarkable research, I would hope that whatever you do,
you pull
the Japanese in. I love what they call it: burnout syndrome. Their whole
concept is that
you do too much and get sick, not as the US tends to think, that we're
malingerers. I
just want to ask you so it's on the record out there for everyone-what is
the CDC's take
on this? Do you see it as a purely psychiatric illness?
Dr. Reeves: Of course it is not. One of the very first things that I
highlighted out of the
stakeholder meeting is that communication has not been optimal. Peter White,
the
psychiatrist that we work with at Emory, does not look upon CFS as a
psychiatric
illness. What they are extremely interested in at Emory are the neurologic
and brain
pathways that mediate this. That is one of the things that Peter White
really added to
the peer review-he is an expert on autonomic nervous system function. The
fact that
certain investigators have a reputation in a certain component of the
community for
thinking that CFS is all in the patient's head is a result of the CDC's
problems with
communication.
(TK: I believe most people would question why a major body like the CDC, if
it needed a person who was an expert in the autonomic nervous system for a
peer review, would bring in Peter White to do it! And regarding the last
sentence, people like Peter White have a "reputation" for what they say and
do - it's not simply because people picked them up incorrectly)
----
Dr Bill Reeves: "The collaboration with Peter White is largely because Peter
White came to us when the
national health service in the UK was trying to design its program and
formulate
recommendations about what the health service in the UK should do. We've
consulted
with them as far as our ideas and our expertise, and we collaborate with Dr.
White on
the PACE trial. He's an unusually intelligent individual-you've read some of
his
comments on some of our articles-whom we enjoy sparring with. He is an
expert on
autonomic nervous system function and he's highly instrumental in all of the
hurdles,
both with patients with the government and with physicians, in trying to put
together,
given the current state of knowledge, a national program."
--Another quote--
"Dr. Miller (from the CDC): I think that my goal in terms of intervention is
that we get to a point
sometime during the five-year plan where we're ready with the defined study
population,
we implement some intervention that shows promise, and we're to measure the
impact
of that intervention.
Dr. Reeves: We talked about a collaboration with Mayo on a CBT/GEBM
intervention.
That's two years out, maybe more."
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CB
up-in-arms when I heard about graded exercise therapy and CBT for
CFS/ME. I had gone through years of forcing myself to slow down and
recognize my physical limits, which were drastically different than they
had been pre-illness. It had been quite fit and it took a long time for
me to realize that I couldn't just "work back up" to where I was before,
that there was an invisible, "glass ceiling" if you will, above which I
couldn't go. I endured innumerable so-called friends who encouraged me
to exercise, use my mind-over-body to heal myself, etc., all of which
failed miserably.
However, when I had chronic pneumonia, and went into cardio-pulmonary
rehab, part of the program was CBT. I had no ill-will towards this
program at all, in fact I wished I could have gotten more of it. That's
because they focused on ways to protect my limited strength and energy.
Sitting at the sink to do dishes instead of standing. Using a laundry
basket to collect items and then systematically going from room to room
when I put things away instead of wasting my energy running all over the
house. They focused on grieving the loss of what I had before I lost my
ability to breathe, to help me deal with the ensuing depression.
All of this was quite useful to me. If I had received this kind of CBT
when I became ill with CFS/ME, I wouldn't have the seething resentment I
have today and the problems with creating a physical exercise program
that is reasonable for my situation (which right now is nothing more
than mild stretches each day, which I almost never do for some reason,
gee, I wonder why, given the hell I have been put through with comments
like "you're just lazy", "you just need to push yourself", etc?!?).
Mawahahahaha (evil Halloween laugh :) ). Maybe we need to infiltrate
these people and twist their ideas of CBT to what it should be instead
of trying to fight them. Sure, some diehards who think CFS/ME is "all
in the mind" will never get it. But what if guidelines were created
showing that CFS/ME creates such a drastic effect on things that affect
quality of life; things like mobility, pain level, etc.; that grieving,
anger and depression are inevitable and CBT is a necessary ADJUNCT in
addition to the medical care necessary to resolve physical problems or
provide palliative care? Maybe those who are arrogant and irrational
(delusional?) enough to see this ADJUNCTIVE therapy as a CURE, would
then be seen as the ARROGANT, DELUSIONAL, EGOMANIACS they are.
Maybe a lot of sufferers of CFS/ME should try CBT then complain bitterly
to their insurance companies, Medicare, HMO's etc., that they saw this
provider and the provider was a total quack who thought they could
replace medical care with psychotherapy and that they never got help
with the depression ensuing from their medical problems, help with
coping with their illness, help with coping with medical providers that
their HMO, Medicare or insurance company paid for. Refuse to pay the
bill for any co-pays, because appropriate care was not provided. Tell
Medicare, the HMO or the insurance company that they shouldn't pay the
bill, either.
Insurance companies, HMO's and Medicare are quite sensitive to patient
complaints of fraud and ineffective treatment and quite often conduct
inquiries that would scare the living daylights out of many providers.
Providers would stop providing this type of "care" after insurance
company and Medicare threats (I've seen it happen before, in a different
context).
Cathy
Tom Kindlon wrote:
--
Supporting universal health care does not make you socialist or even a
liberal, it makes you a human being.
Rev. Jim Rigby
CB
long): Let's use their own system against them. I'm sure there
are guidelines somewhere regarding the CBT that should be provided to
suffers of chronic illness. CBT is commonly provided to cancer suffers,
those with MS, those with chronic pain, etc. I seriously doubt the
guidelines of what should be provided for those who are chronically ill
or have chronic pain match guidelines for the CBT to be provided to
CFS/ME suffers. Maybe someone should collect these guidelines and point
out the glaring differences?
Cathy