#76 AACFS Medical Conference brief report, hydrocortisone, melatonin

[CFS-NEWS Newsletter]

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Chronic Fatigue Syndrome Electronic Newsletter

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No. 76 October 31, 1998 Washington DC
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AACFS MEDICAL CONFERENCE -- BRIEF REPORT /
STUDIES ON HYDROCORTISONE, MELATONIN

>>>1. AACFS Medical Conference -- brief report
>>>2. Hydrocortisone treatment has dangers that outweigh benefits
>>>3. Melatonin hormone found higher in CFS patients
>>>4. Children in danger -- Mary O'Connor's Story

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>>>1. AACFS Medical Conference -- brief report

The following is a summary of a few of the over 90 presentations
given at the biannual AACFS scientific conference held on October
10-12 in Cambridge, Massachusetts. Many thanks to Prof. Anthony
Komaroff whose comments on these presentations were very helpful.

Dr. Robert Suhadolnik presented much more extensive work on his
possible biological marker for CFS. The damaged protein is showing
up significantly more often within a subset of CFS patients than in
healthy controls. Very similar findings have now been shown by two
other studies. Prof. Komaroff commented that this is not yet proven
as a diagnostic marker for CFS, and there needs to be more studies,
and in particular studies that make comparisons to patients who have
other illnesses.

Regarding epidemiology, Prof. Komaroff commented that recent CFS
prevalence studies seem to be converging on a consistent range of 1
to 4 adults per thousand, a markedly higher range than older studies
had shown. Two major studies are currently being conducted, by the
CDC and by Leonard Jason's Chicago group. In Komaroff's summary he
mentioned that CFS seems to be less prevalent in youths than in
adults, perhaps one quarter as common in children and one half as
common in teenagers.

A study by Dr. Nancy Klimas shows low-level immune activation in CFS,
and in particular that the level of activation of cytotoxic T-cells
seems to correlate well with patients' reports of how severe their
illness feels. Dr. Wilhemina Behan presented a study showing that
CFS may share a common mechanism with an ion channel disorder, and
she suggested that CFS patients may be leaking potassium from their
cells, corresponding to a noted energy loss. Two separate studies
(by Konstance Knox et al. and Dharam Ablashi et al.) found HHV-6
activation present in CFS patients more so than in healthy controls.
Several studies seemed to confirm the results of the Johns Hopkins
research relating CFS and neurally mediated hypotension.

A study by D. Fairhurst of the University of Leeds showed slowed
mental processing by CFS patients when compared to matched controls.
H. Moldofsky presented a study showing altered circadian sleep/wake
neuroendocrine and immune functions in CFS patients when compared to
two kinds of healthy control groups. Lorna Paul discussed a
controlled study of how gait appears altered in CFS patients.

Borna virus was the subject of two reports. B. Evengard of Sweden
described a controlled study of CFS patients which showed no evidence
in blood of Borna virus infection. A similar study by S. Levine of
New York showed mixed results indicating a possible connection to
Borna virus. Prof. Komaroff commented that this area of research is
very speculative, but that a connection between CFS and Borna virus
is not impossible.

Dr. J.A. Bellanti conducted a randomized placebo-controlled study of
NADH treatment. His results seemed to show a correlation with some
improved health. Dr. Greta Moorkens found mixed results in the use
of growth hormone as a treatment, which had previously been studied
in fibromyalgia. Moorkens' CFS study seemed inconclusive with
standard measures showing no significant improvement, yet some
patients were able to return to work and one reported a recovery.
Prof. Komaroff commented that these studies need further research.

Ampligen trials were reported by Dr. David Strayer, the Medical
Director of Hemispherx Biopharma, Inc., the drug's manufacturer.
Strayer reported improvements for a large number of patients,
especially those that tested positive for the RNase L marker being
developed by Robert Suhadolnik (see above). The report on Ampligen
trials was not among those that were commented on in Prof.
Komaroff's summary of the conference.

In a separate session later in the conference there was a
presentation by several patients who are enrolled in current trials
of Ampligen. They reported health improvements with the drug, with
no long-term side effects. The session was enlivened by the presence
of Manuel Asensio, the Wall Street stock trader who is in a pitched
financial and legal battle with the drug's manufacturer over the
merit of its main product, Ampligen. Asensio claims that the drug is
ineffective and unsafe. He did make clear that he is openly
short-selling the manufacturer's stock sand that he will profit from
a downturn of the company. In contrast, Dr. Daniel Peterson stated
at the session that his 12 years of experience with 70 patients in
Ampligen trials shows the drug to be safe and effective, but that
good responses are seen only in selected patients and it is very
important to select the right patients.

The AACFS Governor Perpich Award was given to Dr. Philip R. Lee, who
recently served as the U.S. Assistant Secretary for Health. In Dr.
Lee's acceptance speech he recounted the steady accumulation of
evidence that legitimizes CFS. Lee further said that the time is
overdue to change the name of the illness from the current "chronic
fatigue syndrome".

In future editions of this newsletter there will be further reports
about the medical conference, the meeting of the U.S. CFS
Coordinating Committee, and the change-the-name issue.

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>>>2. Hydrocortisone treatment has dangers that outweigh benefits

Researchers from NIH have found that hydrocortisone treatments for
CFS show a mild improvement in self-reported symptoms in a trial of
70 patients. However the drug also prompted adrenal insufficiency,
thus the researchers decided to recommend against it as a treatment
for CFS.

This work was first reported by co-author Stephen Straus at the
1996 AACFS medical conference in San Francisco. The study was
published in the Sept. 23 edition of the Journal of the
American Medical Association. The paper was published as:

Low-Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome:
A Randomized Controlled Trial. Robin McKenzie, MD; Ann O'Fallon,
RN; Janet Dale, RN, MPH; Mark Demitrack, MD; Geetika Sharma, MD;
Maria Deloria; Diego Garcia-Borreguero, MD; William Blackwelder,
PhD; Stephen E. Straus, MD. JAMA. 1998;280:1061-1066

That same edition of JAMA contains an editorial about CFS by Dr.
David Streeten, who co-authored a paper on low blood volume in CFS
(see CFS-NEWS #71).

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>>>3. Melatonin hormone found higher in CFS patients

Researchers in London have found that CFS patients have excessively
high amounts of melatonin, a hormone involved in regulating the sleep
cycle.

In a study by Drs. Theodore Soutzos and Ram Seth of St. Thomas's
Hospital, melatonin production in 44 CFS patients was found to be
higher than that in 17 healthy controls. The scientists said that
melatonin could be a very important factor in the development of CFS.

The study was reported at the annual meeting of the U.K. Royal
College of Psychiatrists held in Belfast in late June. The following
is the abstract of the work as submitted to the conference by the
researchers:

MELATONIN AS AN IMMUNOPATHOLOGICAL MARKER
IN CHRONIC FATIGUE SYNDROME

Dr Theodore Soutzos, Dr Ram Seth
UMDS Guy's and St Thomas', London

Aims:

Recent literature describing neuroendocrine challenge tests of
the Hypothalamo-pituitary-adrenal (HPA) axis in depression and
Chronic Fatigue Syndrome (CFS) point to HPA overactivity and
underactivity respectively correlating with decreased and
increased central serotonergic transmission.
The pathological effector mechanism of increased central
serotonergic transmission in relation to CFS was investigated by
measuring levels of melatonin a product of serotonin known to
mediate some of its effects.

Methods:

Diurnal melatonin production was measured in 17 healthy controls
and 44 CFS patients matched for age, sex, and stage of menstrual
cycle. The CFS group was divided according to symptom severity
into 'active' and 'improving' groups.

Results:

Total daily melatonin production was higher in the CFS group as a
whole relative to controls (p<0.03). On examination of the
diurnal pattern of melatonin production between the two groups,
trends between the two groups only became significant when
clinical state was taken into account. Diurnal melatonin
production remained raised in the active group relative to
controls from late evening until the following lunchtime.
Overall melatonin production was also greater in the active group
relative to the improving group, significant at p=0.02,
suggesting that melatonin may be directly related to the symptoms
of CFS.

Conclusions:

This is the first study to directly link a neurohumoral marker to
the symptoms of CFS. Given the known functions of melatonin
particularly its role as a potent immunoenhancer we combine both
cognitive and biological approaches in terms of psychoimmunology
and hypothesise that this may lead to reclassification of CFS as
an immunopathological disorder.

[Thanks to Dr. Theodore Soutzos and the BBC for assistance with this
article.]

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>>>4. Children in danger -- Mary O'Connor's Story

A CFS Tragedy -- Prologue by Dr. Charles Lapp

As a pediatrician who specializes in persons with CFS, I have been
alarmed at the increasing number of families that have been disrupted
by well-intentioned but poorly informed state agencies. My first case
was from Australia, where the State did not recognize the diagnosis
of CFS, and removed a child from the home, placed her in foster care,
and forced her to exercise and attend school. Of course she did very
poorly, having been pushed emotionally and physically beyond her
abilities. All of this was instigated by unfeeling physicians who
perceived the girl as "lazy" and her parents as "too lenient."
Ironically, the very parents who loved and sought to protect their
child were perceived by others as neglectful, and they were
persecuted under the aegis of "child protection laws."

In the accompanying article, Mary O'Connor relates firsthand a
similar situation as it occurred to her family in the United States,
this time because a physician made a hasty and unsupported diagnosis
of "Munchausen Syndrome by Proxy" or MSBP. This diagnosis, like
"childhood neglect," is frequently considered when children do poorly
in school and have multiple medical problems, but in very few cases
can the diagnosis be supported by fact. MSBP is unique in that the
child's illness is caused and perpetuated by a parent, usually a
mother, who derives some secondary gain - some attention, some
benefit - from that child's illness, resulting in unnecessary
examinations, treatments, or hospitalizations. Mortality may be as
high as 9%.

Sadly, many physicians and social workers mistake the loving care of
a concerned parent for neurosis and neglect; and many mistake chronic
illness for a perverse illness career. Not only does Mary's story
make us painfully aware of what can happen when professionals
misunderstand, but it urges us strongly to educate the professionals
as to the symptoms of CFS and the physical limits that it places on
its victims.

Charles W. Lapp, MD, Hunter-Hopkins Center, Charlotte, NC

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One Family's Nightmare -- by Mary O'Connor

Our family is an ordinary middle-class family. There is really
nothing unusual about us. We attend church, vote, watch television -
a conventional family. We were unprepared for the nightmare that
happened to us. We tell our story in the hope that other families
will be spared from this experience.

Josie became ill with CFIDS on July 11, 1992. She was 11 years old.
We had been on vacation and were on the way home. She woke that day
with symptoms typical of flu - headache, muscle aches, nausea, sore
throat. After two weeks she began to have other symptoms - difficulty
sleeping, walking, and thinking; sensitivity to light and sound and
other neurological symptoms. Worse, her headaches and nausea
intensified.

Josie had been diagnosed with CFIDS for a year when her pediatrician
sent her to a neurologist for severe headaches. He told us CFIDS was
not a real illness and wrote in her chart unknown to us, "Munchausen
Syndrome by Proxy." That is when our family's nightmare began.

Munchausen Syndrome by Proxy (MSBP) is a rare psychological illness
in which a parent fakes a child's illness. The parent does horrible
things to the child in order to gain attention. Although it is an
uncommon form of child abuse, it is suspected when a child who is
chronically ill but has "normal" exams does not readily respond to
medical treatment.

Having a child with CFIDS, we had experienced suspicion. Specialists
told us nothing was "seriously" wrong with Josie. "Send her back to
school. Treat her like normal. She'll be fine," they advised. One
said, "Don't you just want to shake her? I mean, if she were my
daughter, I think I would just have to shake her [from frustration]."
Doctors questioned whether she felt excessive pressure because of
school. Nurses treated her as if she had done something wrong.

However, we never expected they would accuse us of child abuse and
try to have her taken away!

Josie's pediatrician consulted with Dr. David Bell and followed his
advice. After this pediatrician became ill, our new doctor dismissed
Bell as "too conservative." She referred us to a local internist, Dr.
Cichon, saying he had a "special interest" in CFIDS.

Over the next two months Dr. Cichon gave Josie IV gamma globulin, IV
acyclovir and Zofran, Interferon injections, and more than 20
different oral medications. As she got steadily worse, his attitude
changed. He noted in her chart that her pain was "possibly put on."
He said things to me like, "You focus too much on Josie's symptoms.
Josie gets too much attention. You are making things worse. Why don't
you go back to work, and get a babysitter to take care of Josie?"

I thought the suggestion that I hire a babysitter to nurse my sick
child while I went back to work as a nurse made no sense. Because I
was afraid to antagonize him, I avoided saying so. Inside, I was
upset, worried, and confused.

Josie's pain worsened. Dr. Cichon tried injectable Demerol, then IV
Demerol. When she became so nauseated that she couldn't take fluids,
he admitted her to the hospital.

Over the next days the staff made negative judgments about us. An
example of this: because there was heavy traffic as workmen renovated
the unit, I kept Josie's door closed to keep her room quiet. Later we
found the staff had charted, "Mom appears angry, keeps door shut."

Four days after admission five of the physicians involved, including
Dr. Desai, a psychiatrist, and the medical director of our HMO, had a
meeting. They decided that Josie was toxic from medications and
should be put in ICU for "detoxification." There they would "try to
get rid of the protective family," and then would send her to a
psychiatric hospital "since there is no good objective data [to prove
she is sick]." We were not told of these decisions. Instead, Dr.
Desai told us Josie had an eating disorder and should be transferred
to a psychiatric hospital. We declined this recommendation.

The next day Dr. Cichon told David and me that the staff had read a
recent article in REDBOOK about Munchausen by Proxy, and they now
believed that was Josie's diagnosis. We couldn't believe he was
serious! We thought that Dr. Cichon concurred with Josie's CFIDS
diagnosis, that he understood and supported us.

But he didn't. I was "over-involved," he maintained, and should no
longer stay with Josie in the hospital. He wrote later in her chart,
"Patient still being overly mothered and protected by mom. Can't get
mom to accept her potential worsening of child's underlying
condition."

We had always stayed with Josie when she was in the hospital, and for
good reason. On previous admissions she had been carelessly
mistreated. For example, she had been left alone and helpless in a
wheelchair in a dark hallway late at night because staff was too busy
to take her back to her room after a test. We felt we had to be
present to protect her from these kinds of inappropriate actions.
David and I took turns staying with her at night, and I was there
during the day when he was at work.

Josie had been unable to eat for a month. Her weight loss became
critical. When the doctors decided on tube feeding, her improved
nutrition helped her nausea, she began to eat, and she grew stronger
and more animated. Her headache remained severe but she had more
energy. We began to hope she would soon be able to return home.

Meanwhile, however, physicians met again. Three of them told us that
Dr. Cichon could "no longer support a diagnosis of chronic fatigue
syndrome," and that Josie and I had a "symbiotic relationship" and
must be separated. They planned to permit us only two hours of
visitation daily, enroll Josie in school and have a teacher begin
classes in the hospital, require her to go to physical therapy, and
require her weight to be 80 pounds before she could be discharged
from the hospital. Then they left the room without discussion.

We requested a different psychiatrist to examine Josie and review her
records. He found no indicators of abuse or eating disorder. This,
and weight gain, secured Josie's discharge in spite of the committee
of physicians.

At home her condition deteriorated. Our pediatrician referred us to
other doctors and to All Children's Hospital in Boston. No one had
suggestions other than to stop all medications. Later, when we tried
to renew a medicine for pain, the pharmacist told us that he had been
"ordered" by the HMO not to fill any further prescriptions for us. He
added that "the HMO says they are turning the whole matter over to
HRS." This meant Health and Rehabilitative Services -- the state
agency that investigates suspected child abuse.

We appealed to our pediatrician, who said this HMO was like "the
Gestapo." She suggested she re-admit Josie to the hospital as this
would "take care of HRS." She said this was all she could offer.
Anguished but with no other alternative, we agreed.

Josie was placed in ICU where the medical director, Dr. Orlowski,
ordered aspirin for Josie's pain and told us we could visit her two
hours a day only. If we did not agree, he would not treat her. He
also said he believed there were simple remedies for Josie's
problems. "You have to trust me," he said. We didn't trust him, but
faced with the HRS investigation and no other medical care for Josie,
we felt forced to accept his demands.

The next days were agonizing. Josie phoned us constantly, crying
pitifully, complaining of pain and nausea, asking for us to bring her
home, asking why we couldn't be there with her. We tried to reassure
her with what Dr. Orlowski said, that he would help her, that he was
trying to understand what was going on. Our words, which we did not
believe ourselves, sounded hollow and offered little comfort.

At one point a doctor took the phone away from Josie and refused to
allow her to call. When she cried she was told to be quiet. At one
point a nurse made fun of her by saying, "Josie's having a cow," when
she was sobbing with pain. She was given placebos for her headaches.

After several days, Dr. Orlowski told us that Josie's diagnosis was
drug dependency. He said this was not our fault, as "The doctors gave
her the medications." At one time, he said, she did have CFIDS, but
she has been cured. "Everything they gave her in the fall would have
killed it," he claimed. "She is now suffering only from the drugs."

His treatment was a "contract" with Josie to get her nausea "under
control." If she ate, she would be allowed time with us. He also told
us that home schooling was the "wrong thing" for Josie, and she
should be sent back to school. At the end of our conversation,
extremely upset, I asked him to discharge Josie. He refused which
meant we would have to go against medical advice to take her home.
Still facing investigation by the HRS, we believed we had no choice
but to acquiesce.

The next day an HRS investigator told us that a complaint filed
against us was "child abuse by substance misuse/abuse." While we
struggled to obtain Josie's medical records to refute this charge,
the investigator met with Dr. Orlowski and was told that Josie's
medications were "inconsistent with a diagnosis of CFIDS" and that
her correct diagnosis was Munchausen Syndrome by Proxy and
anorexia/bulimia. Desai, the psychiatrist who had insisted Josie's
diagnosis was eating disorder, offered the opinion that Josie was in
"immediate danger" in our care. As a result HRS petitioned the court
to have Josie placed in foster care.

An emergency hearing was held the next morning. The judge, unable to
see clearly who was right, ruled that Josie be released to us
provided we follow "any and all" recommendations of Dr. Orlowski. Dr.
Orlowski then ordered Josie transferred to a psychiatric hospital.
When we refused, we were returned to court for not following his
orders. This time Dr. Orlowski hedged his testimony about Josie's
diagnosis; and she was again discharged to us; but we were still
required to follow his orders.

Dr. Orlowski required Josie to see him each week, be weighed at the
hospital, keep a log of everything she ate, and have random drug
screens. She could have no medications of any kind. She had to return
to public school full time immediately. We were also to have
psychological evaluations and individual and family counseling at our
expense. An HRS case worker would make regular visits to ensure our
compliance with these rules.

Josie returned home under the grave stress of constant fear that she
would be taken from us. For days she cried. For months she had
terrible nightmares. She had nothing to relieve her pain. She was in
bed except for the time she was in school and for the weekly hospital
trip. Because of headaches, nausea, and fatigue she often had to
leave class to go to the nurse's office.

After two months, Dr. Orlowski decided that Josie had "classic
depression." He ordered her to use an exercise machine for 10 minutes
each night as his treatment. After the first attempt Josie collapsed.
The next day she was too sick to go to school. After Josie was in bed
five days, Dr. Orlowski remanded her to a psychiatric facility --
even though Josie's counselor said she had no psychiatric condition
and advised him against it.

Meanwhile the psychologist who performed the ordered evaluation had
found no pathology in any of us and said MSBP was not a correct
diagnosis. He recommended that Josie's symptoms be relieved by the
use of medications, that home bound schooling be provided, and that
we have counseling to help us deal with the crises we had
experienced. Dr. Bell wrote a letter to the judge refuting the
diagnosis of MSBP, and the therapists arranged by Dr. Orlowski also
told the judge there was no psychopathology in our family. An
additional psychiatric evaluation also concluded that MSBP was an
incorrect diagnosis and that there was no evidence of family
pathology.

Faced with this testimony and no evidence of drug abuse, HRS reversed
itself. The judge closed our case in May, nine months after we saw
the neurologist who wrote "Munchausen's Syndrome By Proxy" in Josie's
chart, three months after the first court hearing, and after we spent
some $30,000 in legal and medical fees.

However, we remain listed in the Central Registry, a national
computer bank which contains files of all people accused of child
abuse. This listing empowers HRS to place Josie in foster care
immediately if we are again accused of abusing her --justifying their
actions on "past case history."

Josie herself says of these events: "I was frightened all the time.
Everything was equally horrible - the ICU, school, the psychiatric
hospital. I don't remember how I coped. I felt betrayed by the
doctors, and I was confused about what was happening to me. I didn't
understand all the different diagnoses they gave me, why they were
withholding medications from me, why they sent me back to school, why
they didn't believe me."

Since these events Josie has been severely ill. It is our belief that
the terror and agony she endured at the hands of Drs. Cichon and
Orlowski worsened her condition. Our lawyers said we could not sue
for malpractice because there is no "proof" that they harmed her.
They also inferred that bringing suit would put us at risk for
another custody fight. Because physicians and insurance companies
have more political power and financial resources than we do, we were
unable to press our case.

We have now moved to another state where we are near our extended
family as a resource. We continue to work toward closure of this
terrible experience in our lives. We will never regain that sense of
naive trust we once had in physicians and the health care system, but
we can at least, we hope, regain our self-confidence and our dignity.

I know of at least 8 other families of children with chronic fatigue
syndrome (CFS) who have been accused of MSBP. Awareness and knowledge
may be our only hope in preventing the recurrence of these tragic
stories.

[Thanks to Ted Shaw for alerting CFS-NEWS to this story.]

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