<<Disclaimer: Verify this information before applying it to your situation.>>
As one who has been following the news in the past day will have heard,
there has been a study released that finds CFS has a link with neurally
mediated hypotension. Following are a couple press releases and a definition
of CFS. The treatment, of course, requires a drug which requires a
prescription. As one who believes gluten (and casein) are the cause of many
autoimmune disorders, I have to wonder if not absorbing sodium properly
isn't just another of the myriad possible celiac symptoms. Now, with 96% of
CFSer treatable with steroids or beta blockers, and eating more salt, nobody
will have any incentive to do a study on diet and CFS. Any comments from
those celiacs who have been diagnosed CFS? Don.
** CFS Newswire **
POSTED BY: Roger Burns
SOURCE: Johns Hopkins Children's Center, Office of Public Affairs
SUBJECT: CFS is Potentially Treatable Say Hopkins Researchers
AUTHOR: Press release text: Michele Fizzano,
Office of Public Affairs
Introductory note: Roger Burns
DATE: 95/09/26
COPYRIGHT: None
[INTRODUCTORY NOTE: The research described below is an extension of
previous work published in the Lancet last March. What is new here
is that (1) the current study focuses solely on CFS patients (the
Lancet research studied seven fatigued adolescents, only four of whom
had CFS), (2) the number of CFS patients in this study is 23, and (3)
this major research from Johns Hopkins is being published in JAMA,
which means that the average American M.D. will be reading positive,
legitimizing news about CFS research for the first time in many
years, since most MDs do not read the specialty journals where CFS
research usually appears. -- Roger Burns, publisher of CFS-NEWS
Electronic Newsletter.]
CFS is Potentially Treatable Say Hopkins Researchers
Patient Request Line: 410-821-7253
Embargoed until 4 p.m. EDT
Tuesday, September 26, 1995
Results of a new Johns Hopkins study show that chronic fatigue
syndrome is strongly linked to a common and potentially treatable
abnormality of blood pressure regulation.
The findings, reported in the Sept. 27 issue of _The_Journal_of_the
_American_Medical_Association_ link CFS with a blood pressure
regulation disorder called neurally mediated hypotension and advance
earlier work that drew similar conclusions among fatigued
adolescents. Both studies found that symptoms such as exhaustion,
exercise intolerance, muddled thinking, and dizziness cleared after
neurally mediated hypotension was diagnosed and treated.
"This study is the first to demonstrate that the symptoms of CFS can
be improved with treatment directed at neurally mediated
hypotension," says Hugh Calkins, M.D., associate professor of
medicine and electrophysiology. "Further research will help us
define the basis of a link and a randomized, placebo-controlled study
is still needed to confirm the favorable response to therapy that we
observed."
In the Hopkins study, 22 of 23 patients (18 women, five men, median
age 34 years) with CFS tested positive for neurally mediated
hypotension. After treatment, nine patients reported full recovery
from fatigue and seven others noted some improvement, say
researchers.
Neurally mediated hypotension cannot be detected during a routine
blood pressure or heart rate screening. Tilt testing, available in
most hospitals and academic centers throughout the United States, is
the only means of positive diagnosis.
Each patient in the Hopkins study underwent all or part of a head-up,
three-stage tilt table test. The tilt table rests at a 7--degree
angle to simulate standing for long periods -- a common trigger of
neurally mediated hypotension (NMH). Heart rate and blood pressure
were monitored throughout the test.
Of the 22 patients diagnosed with NMH, all experienced
lightheadedness, nausea or fainting and a 25 mmHG decrease in
systolic blood pressure without an associated increase in heart rate.
All became tired and lethargic and remained so for several days after
the test, suggesting that fatigue can become chronic if neurally
mediated hypotension occurs frequently, says Calkins.
Sixteen of the 22 CFS patients who tested positive did so at the
first stage of the tilt test, unlike four of 14 controls (10 women, 4
men, median age 36 years) who tested positive, at a much later point
after a drug was administered to simulate high adrenaline levels.
"The difference is that those with CFS generally had a drop in blood
pressure more quickly and without artificial stimulation," explains
Peter Rowe, M.D., the pediatrician who first made the link between
the two disorders.
Patients with neurally mediated hypotension were treated with drugs
commonly used to regulate blood pressure. While some of the drugs
work by allowing the kidneys to retain more sodium, others block the
body's response to adrenaline, a kick-starter of the blood pressure
abnormality.
More than half of the patients experienced some improvement over
time, but the researchers say that compliance with these drug
therapies proved challenging.
"It takes a great deal of persistence from the patient and physician
to find the right combination for each individual," says Rowe.
Careful monitoring by a physician is required because the drugs pose
a risk of serious side effects such as excessive elevation in blood
pressure or depression. In addition, patients often need to change
therapies three or four times over several months before noticing an
improvement, he says.
Part of therapy also includes increased salt intake combined with
increased fluid intake, but diet changes alone may not be effective
for treating patients with CFS or neurally mediated hypotension, warn
researchers. "We believe salt plays an important role in blood
pressure regulation, but it appears to be most effective when used in
conjunction with drug therapies," says pediatric cardiologist Issam
Bou-Holaigah, M.D., lead author of the study.
Neurocardiogenic syncope, neurally mediated syncope, vasodepressor
syncope, vasovagal syncope and neurally mediated hypotension are
different names for the same disorder. The condition commonly occurs
when the autonomic nervous system, which controls heart rate and
blood pressure response, misinterprets what the body needs during
periods of upright posture and sends a message to the heart to slow
down and lower blood pressure. This is the opposite of what the body
needs at such times, says Jean Kan, M.D., Helen B. Taussig Professor
and director of the division of pediatric cardiology. Neurally
mediated hypotension occurs typically after exercise, long periods of
standing or exposure to warm environments. If the heart rate slows
down at these times -- when heart rate and blood pressure should be
increasing -- lightheadedness, fainting and headaches are common
results.
In contrast to all that is known about neurally mediated hypotension,
CFS remains poorly understood. It is estimated that nearly 25
percent of the population will develop prolonged fatigue at some
point in their lives. Chronic fatigue syndrome is a related but less
common and more severe condition with worldwide prevalence of up to
three per 1,000 people. It is defined as a profound fatigue lasting
at least six months, often beginning abruptly after an apparent viral
infection, and not explained by known medical or psychiatric
disorders. The fatigue often worsens after physical exertion and
other symptoms include lightheadedness and blurry concentration (see
attached definition from the CDC). Many medical professionals used
to dismiss CFS as primarily psychiatric, but these results suggest
that NMH may be the physical underpinning for symptoms in a large
portion of patients, says Calkins.
Bou-Holaigah was partially funded by the Saudi Arabian Oil Co. (Saudi
ARAMCO).
###
CFS/NMH REQUEST LINE
The Johns Hopkins Medical Institutions are pleased to assist those
seeking more information about chronic fatigue syndrome and neurally
mediated hypotension. _Please_help_us_help_them_by_publishing_the
_following_telephone_number_-_410-821-7253_. Callers can also
request a copy of this press release, the JAM article or an
information sheet about an upcoming randomized-controlled trial in
the Baltimore/Washington region.
###
Johns Hopkins Medical Institutions' news releases can be accessed
on-line through the following services:
> World Wide Web at http://infonet.welch.jhu.edu/news/news_releases
> CompuServe in the SciNews-MedNews library of the Journalism Forum
under file extension "JHM"; also in NASW Online in the same forum.
> JHM1 toll-free Health Newsfeed BBS at 1-800-JHH-0046.
> Quadnet: send e-mail to: [log in to unmask] In the body of
the body of the message type "info Quadnet".
> To enroll in our direct e-mail news release service, call
410-955-6680.
###
DEFINITION: CHRONIC FATIGUE SYNDROME
As reported from the Centers for Disease Control and Prevention, The
National Institutes of Health, and the International Chronic Fatigue
Syndrome Study Group in the _Annals_of_Internal_Medicine_, Volume
121, Number 12, December 15, 1994, page 956, "The Chronic Fatigue
Syndrome: A Comprehensive Approach to Its Definition and Study.")
"A case of chronic fatigue syndrome is defined by the presence of the
following: 1) clinically evaluated, unexplained, persistent or
relapsing chronic fatigue that is of new or definite onset (has not
been lifelong); is not the result of ongoing exertion; is not
substantially alleviated by rest; and results in substantial
reduction of previous levels of occupational, educational, social or
personal activities; and 2) the concurrent occurrence of four or more
of the following symptoms, all of which must have persisted or
recurred during six or more consecutive months of illness and must
have not predated the fatigue; self-reported impairment in short-term
memory or concentration severe enough to cause substantial reduction
in previous levels of occupational, educational, social or personal
activities; sore throat; tender cervical or axillary lymph nodes;
muscle pain, multijoint pain without joint swelling or redness;
headaches of a new type, pattern, or severity; unrefreshing sleep;
and postexertional malaise lasting more than 24 hours."
======================================================================
** CFS Newswire **
POSTED BY: Vicki Carpman, CFIDS Association of America, Inc.
SOURCE: The CFIDS Association of America, Inc.
SUBJECT: JOHNS HOPKINS BREAKTHROUGH LINKED TO MYSTERY ILLNESS
AUTHOR: The CFIDS Association of America, Inc.
DATE: 95/09/26
COPYRIGHT: None
The CFIDS Association of America, Inc.
Chronic Fatigue and Immune Dysfunction Syndrome
Publishers of The CFIDS Chronicle
Advocacy, Information, Research and Encouragement
for the CFIDS Community
PO Box 220398
Charlotte NC 28222-0398
September 27, 1995 Contact: Beth Huneycutt or Vicki Carpman
FOR IMMEDIATE RELEASE Internet: [log in to unmask]
JOHNS HOPKINS BREAKTHROUGH LINKED TO MYSTERY ILLNESS
Study shows 96% of chronic fatigue syndrome (CFS) patients suffer from
neurally mediated hypotension (NMH), a known cardiovascular condition.
Treatment options and cautions offered. 500,000 Americans with CFS, also
known as chronic fatigue and immune dysfunction syndrome (CFIDS), may
benefit from results.
Dr. Peter Rowe and colleagues at Johns Hopkins University have just released
study results that shed much needed light on the disease known as chronic
fatigue syndrome (CFS). In the study of CFS patients aged 14 - 49, 96%
suffered from the low blood pressure and heart rate condition, NMH, under
test conditions. Only 29% of healthy "controls" were so affected. This led
the Hopkins team to conclude that this abnormal cardiovascular condition "is
a cause of symptoms in chronic fatigue syndrome." "NMH is more common in the
young than in the elderly, more common in slender individuals, and more
common in those with blood pressures in the lower part of the normal range."
- Of the CFS patients in the study who underwent treatment for NMH, 76% saw
improvement within one month; 43% "reported complete or nearly complete
resolution (improvement)."
- Effective treatments include an increase in dietary sodium (salt) and
fluid intake and the taking of fludrocortisone (a steroid) or beta blockers.
- The doctors caution that "patients with CFS should not restrict their
sodium intake and that diuretics, vasodilator medications, and tricyclic
antidepressants should be used with caution" as they can trigger the NMH
condition which would make CFS patients feel worse.
In contrast to all that is known about neurally mediated hypotension, CFS
remains poorly understood. It is estimated that nearly 25% of the population
will develop prolonged fatigue at some point in their lives; however, CFS is
a less common and more severe condition. It is defined as profound fatigue
lasting at least six months combined with numerous other disabling symptoms.
It often begins abruptly after an apparent viral infection and is not
explained by known medical and psychiatric disorders. The symptom complex
often worsens after eriods of physical or mental exertion. Many medical
professionals dismissed CFS as primarily psychiatric, but the Johns Hopkins
results suggest that NMH may be the physical underpinning for symptoms in a
large portion of patients, says Dr. Hugh Calkins, one of the investigators.
# # #
For public inquiries and general information, please call 800/442-3437.
|
