May - June 1999
Clearing up the CBT confusion
who trained in behavior therapy, I'd like to try and clear up some of the confusion surrounding CBT (cognitive
Both Bruce Campbell (Nov./Dec. 1998) and Emily Murphey (March/April 1999)
were correct when they noted that CBT is a helpful treatment where illness is complicated by dysfunctional
beliefs. As Murphey indicated, it's one of many tools used with medically ill individuals whose irrational
cognitions undermine coping and increase distress. What both Campbell and Murphey did not acknowledge,
however, is that most of their medical colleagues do not advocate CBT as an optional extra but
as the basis of treatment. It is not perceived as a therapy for those who require it but rather
as an essential part of rehabilitation (note Simon Franklin's letter, Jan./Feb. 1999, page 4).
view that CBT is appropriate for every person with CFS is based on a theory proposed by British psychiatrists.
To cut a long story short, this theory suggests that fatigue may be triggered by a virus, but that it
is largely perpetuated by dysfunctional beliefs. For instance, it is claimed that all patients attribute
the exhaustion and weakness to a disease for which the treatment is the avoidance of activity. (This theory
simply ignores evidence that most patients with CFS have much more sophisticated beliefs about their illness,
that relatively few avoid all activity and that most of the research findings cannot be explained in terms
of deconditioning.) Since the psychiatrists consider fatigue to be the result of deconditioning, sufferers
are encouraged to increase their activity levels at a predetermined rate. If they become really ill, they
can stay at the same level for a while, but they should not reduce what they do, let alone stop. This
is called "graded exercise."
In my opinion, it is unfair to dismiss the patients' lack of
enthusiasm for CBT as a sign of ignorance and prejudice. Regular readers of the Chronicle know
about the limitations of the CBT theory, for instance, through the articles by Drs. Jason and Friedberg.
They'll also be aware of the controlled trials that did not find CBT to be effective, and about the dangers
of exercising beyond fatigue. Unfortunately, a lot of doctors do not have such balanced information. If
you read the medical journals, you'll notice that most accounts of CFS include highly uncritical assessments
of CBT, often focusing on the few studies that support its use but downplaying or ignoring those that
don't. In other words, there may be some inaccurate beliefs about CBT, but these are not just limited
I would also like to challenge Campbell's description of his treatment as a
type of CBT. In my view, his multi-dimensional approach has more in common with the self-management programs
advocated for cancer than with the CBT-based treatment described by Drs. Sharpe and Deale. Moreover, it
should be noted that CBT is not the same as supportive counseling, nor is it a general term for teaching
patients coping skills. To refer to CBT in connection with the latter pathologizes what are often normal
and understandable reactions to a difficult situation. It also fails to distinguish between inadequate
coping efforts due to a lack of knowledge and those resulting from disordered thinking because of misleading
information or psychological morbidity.
Finally, I noticed a reference to graded exercise
"as tolerated" in the Readers' Survey. What does that refer to? Graded implies that exercise should be
timed according to a predetermined plan, not the presence of fatigue. In other words, the aim is to increase
what you can tolerate, so when the going gets tough, the idea is to keep going. Determining activity levels
according to symptoms is usually described in the literature as gentle activity within limits, paced activity
I've summarized the arguments for and against CBT and graded exercise in more
detail elsewhere. A copy can be found on David Axford's web site: http://freespace.virgin.net/david.axford/me/me.htm
Goudsmit, PhD, London, England
The writer is a clinical psychologist and editor of the
M.E. and CFS Capita Selecta Quarterly. David Axford's web site is highly recommended as an archive
of M.E. and CFS research and opinion.
Caution urged on Neurontin
I am writing in response to the article in the
issue about Neurontin. In this article, Neurontin is described as being "an easy and relatively safe drug
to experiment with." Based on my personal experience, nothing could be further from the truth.
years ago I saw Dr. Jay Goldstein who treated me for symptoms associated with CFIDS. Initially the drug
was very effective in relieving my symptoms. The only side effect I experienced was feeling slightly intoxicated
several hours after taking the drug. After a couple of weeks, the drug began to lose its effectiveness.
I increased the dosage according to Dr. Goldstein's instructions. After a month, I increased the dose
again but it became ineffective altogether. This experience of building "tolerance" to a drug therapy
is common, and a nurse at Dr. Goldstein's clinic told me it was true for many other patients. After six
weeks of taking Neurontin, I stopped taking the drug and the nightmare began. Not even my most difficult
times struggling with CFIDS can compare with what I went through.
When the first symptoms
of withdrawal began, I did not know what to think. I was nauseated and my head felt like it was in a block.
My heart rate slowed down and I felt like I could barely move. I experienced extreme anxiety and depression
with thoughts of suicide. I talked to a counselor and we figured it was withdrawal, that it would get
better in a few days. But the agony continued for weeks. I know of another CFIDS patient who went through
a similar experience with Neurontin. He tapered off gradually, but the experience was still difficult.
therapy carries with it large risks, especially for CFIDS patients who are overly sensitive to medication.
Neurontin is a very powerful drug that affects the chemistry of the brain in ways that are "still largely
a mystery," as the article said. Patients need to understand the risks involved, that tolerance is common
and withdrawal is difficult. I urge all CFIDS patients and their doctors to exert extreme caution before
As a footnote, I have experienced great improvement through the use of biofeedback,
specifically temperature self-regulation through learning to warm my hands and "alpha-theta" training
of my brain waves (a form of neuro-biofeedback). In this way I was able to retrain my brain and body to
function in a more balanced, normal way. I personally believe this type of non-drug therapy can be far
more effective than drugs.
Darden Burns, Bainbridge, Wash.
Awareness is critical issue
I am writing in response to Deborah Bryant's letter
in the Readers'
Forum (March/April 1999). I fully support her feelings that we need national attention to bring awareness
to this horrific illness. One way to do this is to have a national spokesperson.
I had never heard
of CFIDS until my 19-year-old daughter, Allison, was diagnosed 2« years ago. Since then, I have spent
40 hours plus every week educating myself about this illness and trying to find help for her. It is so
frustrating to try to explain to friends and colleagues about this disease. They patronize me and I can
tell they do not really understand how horrible this illness is.
With the new prevalence data from
the Centers for Disease Control in Atlanta, it baffles me why we do not get more attention. And I was
livid last July when I heard about the misuse of federal funds for CFIDS research. But then I thought
this could be a blessing in disguise, because this situation would certainly gain national media attention.
I saw nothing!
I have written many letters to national network news shows in hopes they would
do segments on this disease. In most cases they do not even have the courtesy to send back a form letter.
I have written directly to celebrities about CFIDS and have asked them to think about being a spokesperson
and have never received a reply. I have written to Cher twice and pleaded with her to help us. Again,
no reply. (For more on Cher, see Media Watch in this issue)
paramount that we get the word out and to educate the community about this suffering. Awareness will eventually
bring money for much needed research.
Rick Baldwin, Newark, Del.
Test drug on real 'seriously ill'
I find it disconcerting that the Ampligen
516 trial, supposedly
for the seriously ill CFIDS patient, is denying these very people access to the study because the seriously
ill cannot travel to the physician's office. These individuals cannot take a treadmill test or tolerate
the noise and din of those offices. Hemispherx and the FDA need to develop a program that affords the
truly seriously ill with an expanded Ampligen study in which individuals can participate from their homes.
These are the people who cannot care for themselves and who need the drug the most.
Linda H. Moyer,
San Diego, Calif.
Silence saves energy
The negative effects of conversation and mental work
versus the effects
of walking in silence struck a familiar chord in me in JoWynn Johns' Chronicle article "Living within
my envelope: A how-to story" (March/April 1999). Long after CFIDS/fibromyalgia patients accept living
within their physical limits, I find that they, like me, often deny the need to avoid long conversations
or tiring mental work. It is a thin line to walk, because we need connections with people, too. But I
find that it is better to live a more monastic life than to force the issue and be around people in tiring
conversations when we are just not up to it neurologically. That can only result in relapse.
Moore, Dunmore, Pa.
Re: CFIDS and cognitive testing
A letter in the March/April 1999 issue (page
a couple of reasons why test results don't show cognitive problems as serious as we perceive them. I'd
like to offer a few more: an unusually high level of adrenaline when being tested, limited endurance and
inadequate testing methodology. At least the last of these can be remedied.
I believe many of us
respond with an unusual surge of adrenaline when faced with a test, and this enables us to function briefly
at a higher level. I know that when I was a student taking SATs, my body would automatically pump up my
adrenaline because these tests were important to me. When I underwent cognitive testing in connection
with my CFIDS, I could feel my body shift into a higher gear. If you consider the research that among
the characteristics of CFIDS are decreased blood flow to the brain and a foul-up in the way the body produces
adrenaline, then a PWC (person with CFIDS) in a testing situation is simply not a normal PWC.
PWCs may have the energy to think normally for an isolated hour or two of testing, but not the seven or
10 or 12 hours of a normal workday, day after day-a concept which disability companies don't seem to grasp.
the tests may be inadequate or inappropriate. I learned from the psychologist who administered my cognitive
tests that in acquired brain dysfunction, the academic skills we had previously learned remain intact.
So a test such as a standard IQ test based on things we already knew how to do before we got sick will
generally not show impairment.
However, there are dozens of cognitive tests available. Some of
these were able to document my cognitive problems, although it took considerable effort. I went through
a total of eight hours of testing, three hours one day and five hours two days later. After the first
session, the psychologist was skeptical, since I had scored high on IQ, reading speed and other standard
tests. However, during the second session, after a couple of hours I began to faint from the strain of
functioning at such a high level for so long. This convinced the doctor that there was something wrong
with me. Intrigued, he spent an extra few hours searching for tests that could pinpoint my problems.
the tests that showed significant impairment were the paced auditory serial addition task, the WAIS-R
subtests of Digit Span, Digit Symbol and Arithmetic, Continuous Visual Memory Test, Tactual Performance
Test, Trail Making Test, Purdue Pegboard Test, Rey Complex Figure, Woodcock-Johnson Psycho-Educational
Battery-Revised, Memory for Names and the Visual-Auditory Memory.
If your tester is giving only
a standard IQ and reading test, try asking for these others. The problem for many people will be the expense
of these tests-hundreds of dollars-but it's well worth it if they make the difference between qualifying
for disability payments or not.
My psychologist was Dr. James Lawrence Thomas of New York. I am
not suggesting that he could do the same for anyone else, but at least you won't have to convince the
tester that CFIDS has real effects on cognition.
Judith Singer, Wallkill, N.Y.
A needless tragedy
On March 31, my good friend Dr. Peg Slahor died. She was
only 43, and
had been a PWC since 1992, which is when I was also diagnosed with CFIDS. My relatively quick diagnosis
was due to her providing me with a lot of literature and encouraging me to seek a CFIDS-aware doctor.
What is really ironic is that I found the right doctor and she never did. Despite Peg's medical background
(she was a dentist), her physician was one of those doctors who didn't "believe" CFIDS was a real illness
and therefore wouldn't recommend her to good specialists, particularly one willing to prescribe effective
pain medication for her constant fibromyalgia pain. She couldn't afford to pay out of pocket for specialists.
Peg is gone now, and like many other PWCs who had to limit their friends and social life, some
acquaintances are just learning about her death. In her obituary, they said she died "after a lengthy
illness." What was missing was that she didn't have to die. With the proper care from somebody who took
her and her disease seriously, she would still be here today. And while I know she isn't the only person
to die tragically because of ignorance of the medical community and she probably won't be the last, she
was the only one that was my friend, and I will miss her.
Barbara F. Humphrey, Wagontown, Pa.
I recently went through a series of diagnostic tests to see if I had multiple sclerosis
(MS). My CFIDS took such a drastic, serious neurological turn that the symptoms mimicked MS almost completely.
Alas, the tests did not show MS. "You should be glad you don't have MS," I've been told, but I want to
scream, "My symptoms are the same." Even the neurologist I went to labeled my illness "an MS-like immune
It's not that I want to be labeled with something I don't have. But why am I looked
at differently by doctors and others when my diagnosis goes from MS back to CFIDS with MS-like symptoms.
My disability has not changed; my symptoms, struggle and physical pain have not changed. But what has
changed is my torture. It has increased ten-fold. Why do people doubt me if I am unable to attend a meeting
or can't commit to service? Why do I have to be my own doctor with herbs and alternative treatments? It
drains me emotionally and financially, when all I want is to be cared for.
But for one brief moment,
when I was being considered as having MS, that was all different. Unlike most persons with CFIDS, I briefly
felt the acceptance and understanding of a known and accepted illness. But no more. Having tasted that
freedom for just a moment, my torment seems all that more severe.
I'm tired of being stabbed through
the heart time and again, all because someone decided to label the complex symptoms I have as chronic
fatigue syndrome. I say change the name now. There is another name for our illness. It is M.E. (myalgic
encephalomyelitis). At least it's a step in the right direction.
I've had this disease for more
than five years. I have a friend who is going on 17 years! Haven't we waited long enough?
Lee F. Christman, Bellevue, Pa.