===============================================================
==
==
== ----------- ALS Interest Group
----------- ==
== ALS
Digest #978 (08 January 2002)
==
==
==
== ------ Amyotrophic Lateral Sclerosis (ALS)
==
== ------ Motor Neurone Disease (MND)
==
== ------ Lou
Gehrig's disease
==
==
------ maladie de Charcot
==
==
==
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===============================================================
CONTENTS OF THIS ISSUE:
1 .. re: prayer
2 .. re: prayer
3 .. New assistive technology from Japan
4 .. chronic bulbar palsy
5 .. Don Adkins - ALS and Angels
6 .. Protective activity of aromatic amines and imines against oxidative
nerve cell death
7 .. Ubiquitin immunoreactivity in presumed spinal interneurones in
motor neurone disease
8 .. JAMA Users Guide to Med Lit books and websites
9 .. Too little money too late?
(1)
=====
re: prayer
==========
>From: Wisampson@cs.com
Date : Tue, 8 Jan 2002
>Dr. Elizabeth Targ, director of the Complementary Medicine Research
>Institute in San Francisco, headed the study. Does anyone know her
>or have any connection with the Complementary Medicine Research so
>that those of us interested could participate in a similar study?
>She used seven different religious and healing traditions from
>around the world. I don't know where to go from here...any
>suggestions? Anyone willing to try to set one up with this Doctor?
This study has been analyzed by several clinicians knowledgeable about
clinical trials and parapsychology. The study was one of "distant
healing" or psychokinesis, which has been studied many times with
unconvincing to negative results. Positive claims come from studies
with inadequate controls on breaks in blinding - the most important
issue in studies of this type.
Studies of the power of prayer on disease must involve prayer by the
people with illness - those being studied, not power of prayer by
others, which is impossible to control, unless one believes that the
amount of prayer made a difference.
There is no convincing evidence for effect of personal prayer on
diseases, despite what may be reported in the press, taken from
interviewing proponents. Even the Catholic Church, since tightening
its criteria for such observations, has declared very few miracles in
the past 50 years.
The study in question showed no objective change in the measures of
the disease, AIDS. There was no change in viral load, antibody levels,
organ function, or other measurable indicator. Only the number of
hospitalization days and some perception of symptoms were "better" in
the prayed-for group. These kinds of changes are typical for reports
of studies in which the subjects obtain some knowledge that they are
in the study group, not the control group - breaks in the blinding.
One may choose to believe the results of the AIDS patient study, but
experienced researchers place little to no confidence in it.
W Sampson MD
(2)
=====
re: prayer
==========
>From: "Mary Reed" marycath2002@hotmail.com
Date : Mon, 07 Jan 2002
For those viewers of ALS-Online that are considering working with
Elizabeth Targ, you might want to read the following review of her
work at:
http://www.csicop.org/si/2001-03/fringe-watcher.html
The organization she works for does not have a web page. I can find no
published studies via Ms. Targ that suggest that the remote "power of
prayer" works, either with AIDS patients or ALS patients, other than what
Ms. Targ claims.
My father has ALS and I wouldn't want him victimized by hoaxsters who
make false claims only to bring in funding for their "research".
Brad Reed
(3)
=====
New assistive technology from Japan
==========
>From: "Carl Brahe" <carl@mctos.com>
Date : Mon, 7 Jan 2002
Two new products to serve AT users will arrive from Japan this week:
EMOS - Eye/Muscle Operated Switch:
This may be the easiest to use and most versatile switch made. Slight
eye movement or blinks, or slight muscle activity can operate it. It
may work for people who have no movement.
Muscle throughout the body can be used to operate this switch. It was
developed because of our experience with a friend with ALS.
After he lost all ability to move we had a crude EMG device adapted
that accessed electrical activity in his neck muscles. Although he had
no movement in these muscles there was enough activity that he could
move a needle to spell out words, and answer question, for a year and
a half.
The device was made with technology from the 1930s. EMOS is built with
state of the art technology and made specifically for the purpose.
EMOS will operate all standard AT and ECU devices with a 1/8" plug
output. A USB port is also supplied to allow direct control of computer
programs that are operated by mouse click.
EMOS will prove switch access to many people who have been unable to
use AT devices in the past. No training is required.
ESCA - Easy Scanning Communication Aid:
This product is unique because along with a scanning communication device
it has a built-in Nurse call/Alarm/Switch function.
ESCA has four modes of scanning for user-recorded messages. Message
scanning can include 1 choice, 2 choices, 4 choices or 7 choices.
You can check out these devices at: www.mctos.com
Carl Brahe, President
Technos America LTD LLC
386 Quartz Circle
Bailey, CO 80421 USA
303-816-0495
carl@mctos.com
www.mctos.com
(4)
=====
chronic bulbar palsy
==========
Date : Thu, 27 Dec 2001
>From: Laura Nunnelley lauran@rocketmail.com
I went to the neurologist last week with a friend to get her ALS test
results. She tested negative for ALS, but has been labeled as having
chronic bulbar palsy. All the information I find on bulbar palsy is
about how it relates to ALS. What is the difference, what does the
diagnosis mean, and what is its prognosis? Any information would be
VERY appreciated. Thank you in advance. Laura
(5)
=====
Don Adkins - ALS and Angels
==========
>From: cadkins4@att.net
Date : Mon, 07 Jan 2002
Don Adkins - ALS and Angels
Another angel earned his Wings and departed us at 4:30 a.m. Sunday,
January 6, Feast of the Epiphany, 2002. We mourn his passing but
celebrate his life in the inspiration he has been just virtue of his
'being'. I have learned that all ALS patients are Angels in the
making. Every step of the way by enduring this terrible disease and
its pain and devastation, they earn another feather into their Wings,
until when finally God says 'Come!, their feathers are full proud and
glorious.
His passing was peaceful and quiet, w/o pain inasmuch he had been placed
in a sleep 'coma' before the respirator was disconnected. He walks now,
he talks, he laughs, all the things he was no longer able to accomplish
physically.
With abiding love and compassion to all you patients and caregivers,
I remain
Mrs. Connie Adkins (Mrs. Donald Jean Adkins) cadkins4@att.net
(6)
=====
Protective activity of aromatic amines and imines against oxidative
nerve cell death.
==========
>From: whubben@als-tdf.org
Date : Mon, 07 Jan 2002
Protective activity of aromatic amines and imines against oxidative
nerve cell death.
Source : Biol Chem 2001 Nov;382(11):1601-12 Books
Author(s): Moosmann B, Skutella T, Beyer K, Behl C.
Institute: Max-Planck-Institute of Psychiatry, Munich, Germany.
Published: 11/1/2001
Abstract:
Oxidative stress is a widespread phenomenon in the pathology of
neurodegenerative diseases such as Alzheimer's disease, Parkinson's
disease, and amyotrophic lateral sclerosis. Neuronal cell death due to
oxidative stress may causally contribute to the pathogeneses of these
diseases. Therefore, neuroprotective antioxidants are considered to be
a promising approach to slow down disease progression. We have
investigated different aromatic amine and imine compounds for
neuroprotective antioxidant functions in cell culture, and found that
these compounds possess excellent cytoprotective potential in diverse
paradigms of oxidative neuronal cell death, including clonal cell lines,
primary cerebellar neurons, and organotypic hippocampal slice cultures.
Aromatic amines and imines are effective against oxidative glutamate
toxicity, glutathione depletion, and hydrogen peroxide toxicity. Their
mode of action as direct antioxidants was experimentally confirmed by
electron spin resonance spectroscopy, cell-free brain lipid peroxidation
assays, and intracellular peroxide measurements. With half-maximal
effective concentrations of 20-75 nM in different neuroprotection
experiments, the aromatic imines phenothiazine, phenoxazine, and
iminostilbene proved to be about two orders of magnitude more effective
than common phenolic antioxidants. This remarkable efficacy could be
directly correlated to calculated properties of the compounds by means
of a novel, quantitative structure-activity relationship model. We
conclude that bridged bisarylimines with a single free NH-bond, such
as iminostilbene, are superior neuroprotective antioxidants, and may be
promising lead structures for rational drug development.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=259
PubMedID: 11767950
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve
&db=PubMed&list_uids=11767950&dopt=Abstract
Will Hubben whubben@als-tdf.org
(7)
=====
Ubiquitin immunoreactivity in presumed spinal interneurones in motor
neurone disease
==========
>From: whubben@als-tdf.org
Date : Mon, 07 Jan 2002
Ubiquitin immunoreactivity in presumed spinal interneurones in motor
neurone disease
Source : Neuropathol Appl Neurobiol 2001 Oct;27(5):352-61
Author(s): Stephens B, Navarrete R, Guiloff RJ.
Institute: Neuromuscular Unit, West London Neurosciences Centre, Charing
: Cross Hospital, London, UK.
Published: 10/1/2001
Abstract:
Previous studies have demonstrated the presence of ubiquitin-immuno-
reactivity (Ub-IR) as inclusions and skeins in motor neurones of both
the familial and sporadic forms of motor neurone disease (MND). There is
evidence that interneurones also degenerate in MND, but Ub-IR in ventral
horn spinal interneurones has not been studied previously. Here, Ub-IR
was investigated in 1445 presumed interneurones and 1086 presumed motor
neurones counted in three random 20-microm sections of the ventral horn
of the third lumbar segment of the spinal cord of each of seven controls
and seven patients with MND. The ventral horn was divided into four
quadrants; the dorsomedial quadrant contains almost exclusively
interneurones and the ventrolateral quadrant largely motor neurones. The
neurones were also classified by morphological and size criteria into
presumed interneurones (< 25 microm) and presumed motor neurones (>or=
25 microm). Ub-IR was classified as inclusions, skeins and dispersed
cytoplasmic and nuclear staining. Ub-IR inclusions or skeins were not
observed in the controls but 6.6% of neurones (motor neurones and
interneurones) showed the presence of dispersed cytoplasm staining and
nuclear staining. The incidence of Ub-IR cytoplasmic and nuclear
staining was significantly greater in both motor neurones and
interneurones of MND patients than controls. Ub-IR was less frequent in
MND cases in which a great loss of neurones was observed. Ub-IR was
significantly more frequent in motor neurones than interneurones, both
in patients and controls. Ub-IR inclusions and skeins were only observed
in motor neurones from MND patients. Ub-IR inclusions were not observed
in presumed spinal interneurones, while skeins were only seen in three
out of 565 of these cells (two of them in the dorsomedial quadrant) in
two out of seven patients. Thus, although presumed spinal interneurones
occasionally revealed Ub-IR features similar to motor neurones, the
rare staining of Ub-IR skeins and the lack of Ub-IR inclusions in
interneurones in MND sug ubiquitin-protein conjugates. Neuronal size,
rather than type, may be important in determining whether ubiquitin-
protein conjugates form in the ventral horn neurones in MND.
Abstract Archived at: http://www.als-tdf.org/alstdf/research/hubben/
viewarticle.asp?id_article=256
PubMedID: 11679087
PubMed Link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=11679087&dopt=Abstract
Will Hubben whubben@als-tdf.org
(8)
=====
JAMA Users Guide to Med Lit books and websites
==========
>From: Peter Sam psam@AHSCHC.ORG
Sent : Tuesday, November 20, 2001
Books (published July 2001):
Users' Guides to the Medical Literature: A Manual for Evidence-Based
Clinical Practice,
Users' Guides to the Medical Literature: Essentials of Evidence-Based
Clinical Practice
and interactive web site (coming fourth quarter 2001 or early 2002)
at http://www.usersguides.org/
The complete series is also now available online at Centres for Health
Evidence http://www.cche.net/usersguides/main.asp
quote
Users' Guides to Evidence-Based Practice
The following is the complete set of Users' Guides originally published
as a series in the Journal of the American Medical Association (JAMA).
The CHE continues to maintain the full text pre-publication version of
this series on behalf of the Evidence-Based Medicine Working Group with
permission from the journal. See the Disclaimer and Copyright for more
information.
The articles are listed below and can be viewed in their entirety by
clicking on their titles. Please note that all tools formerly associated
with this site including calculators, worksheets, and additional
educational materials, have been removed. These features have been
enhanced and will be re-introduced in a new online, interactive version
of the Guides. The book entitled Users' Guides to the Medical Literature:
A Manual for Evidence-Based Clinical Practice, published by the AMA
Press and JAMA & Archives Journals (July 2001), will form the basis for
these interactive features.
The online version (http://www.usersguides.org)
will be available by
subscription through JAMA and is expected to be launched in early 2002.
If you are a current user of the worksheets, and would like to know when
the new Interactive Guides are offered by JAMA, contact us at
info@cche.net for a notification of the
official launch date.
end quote
peter sam, web content developer
Primary Care Clinical Practice Guidelines
http://medicine.ucsf.edu/resources/guidelines/
psam@ahschc.org asian health services
818 webster oakland ca
(9)
=====
Too little money too late?
==========
>From: ESCohn@aol.com
Date : Fri, 7 Dec 2001
Too little money too late?
I am looking for ALSers that are interested in:
a) finding out how we can get NIH to spend more money on ALS
b) explore the path that has opened up since Dr. Siddique's discovery
of the ALS2 gene deletion mutation, a slower progressing form of
ALS.
If you want to see more money spent on ALS research, please email me.
Right now, only 3 diseases get less money from NIH than ALS. They are
Chronic Fatique Syndrome, Fibromyalgia, and Muscular Dystrophy. Most
diseases get 10 to 100 times more than ALS. I want to do something
about this but will need help.
If you have a slower progressing form of ALS, also, please email me.
Dr. Siddique's discovery of the ALS2 and JPLS (both early onset, slow
progressing) deletion mutuations on the same gene indicate a common
genetic origin. This deletion mutation appears to be a loss of function
(neuroprotectants) instead of what happens in the SOD1 mutation, a gain
of function (toxic excess). We need ALSers with slow progressing ALS
to participate in further blood marker studies in order to locate adult
onset, slow progressing mutations for ALS and PLS. The problem is that
there are so few of us, we need the participation of each and every one.
If you have a faster progressing form of ALS, but want to participate in
the ongoing blood marker studies by Dr. Siddique, we need you too!
Dr. Siddique was responsible for the identification of the genes for
SOD1, and the mouse models, so that researchers might better understand
the mechanism that is happening in ALS. There are many different variants
of ALS. Dr. Siddique wants to find them, so they can study them and
determine better ways to treat ALS. But he needs the participation of
ALSers to do this.
Let me know what category you are interested in and I'll respond with
more info. Please pass this info on to anyone you have contact with
that might be interested.
ALS research funds
Slow progressing ALS
Classic ALS
Thanks, Jennifer Thomson mdmfoo@yahoo.com
=== end of alsd 978 ===