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Co-Cure Weekly Digest of research and medical posts only - 25 Jun 2007 to 2 Jul 2007
Topics of the week:
-
1. act,med: 25% ME Group -Press Release -Stop Wasting Money
3. RES: The Development Of An Epidemiological Case Definition For Chronic Fatigue Syndrome (CFS)
4. RES: Multiple chemical sensitivity: study of 52 cases
5. NOT,RES: Kings College, London: Current research projects
6. NOT,MED: Health Committee press notice - NICE evidence session [UK]
8. RES,NOT: CFS award for Yoshitsugi Hokama
9. RES: Violence, stress, and somatic syndromes
10. RES: Hypothalamic-Pituitary-Adrenal Axis Function in Chronic Fatigue Syndrome
11. RES: Attentional modulation of visceral and somatic pain
12. RES: Health status and health care utilization of multiple sclerosis in Canada
13. RES: Chronic fatigue syndrome after q Fever
14. RES:The NIH and CFS Part IV: Assessing the Neuroimmune Grants
15. RES: Aquatic Training and Detraining on Fitness and Quality of Life in Fibromyalgia
16. NOT,RES: Full text of "Chronic fatigue syndrome after q Fever"
17. NOT,RES: Illness Intrusiveness in Myalgic Encephalomyelitis - An exploratory study
18. not,med: BBC Radio Scotland Podcasts
19. NOT,RES: Illness Intrusiveness in Myalgic Encephalomyelitis
21. NOT,MED: New Warnings on Suicidality in Young Adults Taking Antidepressants
[Return to digest index] --------------------------------------------- This is a special digest of Co-Cure Research & Medical posts only Problems? Write to mailto:mods@co-cure.org --------------------------------------------- ----------------------------------------------------------------------
Date: Tue, 26 Jun 2007 14:12:07 +0200
From: Jan van Roijen <j.van.roijen@CHELLO.NL>
Subject: act,med: 25% ME Group -Press Release -Stop Wasting Money
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>> Help ME Circle <<<<
>>>> 26 June 2007 <<<<
Editorship : j.van.roijen@chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
http://www.25megroup.org/Campaigning/Awareness%202007/Press%20Release%2026%20June%202007%20.doc
25 percent ME group
FOR IMMEDIATE RELEASE
PRESS RELEASE
ME CHARITY CALLS FOR MRC TO STOP
WASTING MONEY ON INAPPROPRIATE RESEARCH
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A national ME charity representing severely affected ME
patients today called for the Medical Research Council (MRC) to
stop any further funding for psychological and psychiatric
research into ME (Myalgic Encephalomyelitis). The call is being
made by the 25% ME Group supported by The Countess of Mar
and other ME organisations (see below).
Simon Lawrence from the 25% ME Group said today "If the
funding available for cancer research was all directed at how
cancer patients think and feel about their disease instead of the
physiology of the illness there would be an outcry.
For years the severely ill ME patients we represent have seen
the MRC refuse funding for biomedical research whilst giving
grants for psychological research. In the last year alone six
studies designed to investigate the pathophysiology and
epidemiology of ME have all been denied funding by the MRC.
Yet the well funded PACE trial which many of the ME charities
wanted to boycott has been granted an extension of funding. It is
totally unacceptable that a hugely important study which is
investigating gene expression in ME and which could lead to a
diagnostic test, is being funded by patient-based charities whilst
trials of psychological therapy are receiving millions of pounds in
funding from the MRC."
Simon Lawrence pulls no punches when he says "Public money
is being wasted on research that will be of little benefit and may
actually be harmful to ME patients. It is about time serious
money was spent on the pathology of this devastating illness."
The Countess of Mar, endorsed by Dr Ian Gibson MP, made the
following comment, "As a member of the Inquiry led by Dr Ian
Gibson MP, as well as Patron of the 25% ME Group and of a
number of other ME charities, I have long been concerned about
the allocation of taxpayers' money to fund psychosocial
behavioural research whilst proposals for biomedical research
are rejected, ostensibly because they do not reach the high
standards thought necessary by the peer reviewers. Over the
last decade many millions of pounds have been squandered on
research which has totally failed to find cause, relief or cure for
this painful, demoralising and socially unaccepted physical
illness. It is high time that the funding organisations recognise
that they should now support some of the fine research,
conducted with minimal private funding, that is pointing to the
direction in which, I am convinced, solutions will be found."
The undersigned ME organisations call for public money to be
directed towards funding biomedical research which is already
producing significant findings and is the only research capable
of leading to a treatment and cure for ME.
###
LIST OF SUPPORTERS
Countess of Mar
Dr Ian Gibson MP
The ME Association (MEA) www.meassociation.org.uk
BRAME – Blue Ribbon for the Awareness of ME
CHROME – Case History Research on ME
The Young ME Sufferers Trust www.tymestrust.org
Invest in ME www.investinme.org
Dr E Dowsett MB.ChB.Dip.Bact
Dr Nigel Speight – Medical/Paediatric Advisor to ME charities
Professor Malcolm Hooper PhD.B.Pharm.C.Chem.MRIC
Northampton ME Support Group
ME Support Norfolk
ME Free for All.org
WMMEG (Consortium of West Midlands ME Groups) -
Herefordshire ME/CFS/FMS Group, Shropshire & Wrekin ME
Support Group (MESG), Solihull & South Birmingham MESG,
Warwickshire Network for ME, and Worcestershire MESG
Hampshire Friends with M.E.
Eastleigh & Winchester MESG
Reading Area MESG
SWAME (South West Alliance for ME) alliance of local MESGs
across Devon, Cornwall and part of Somerset.
MEEK (ME East Kilbride)
MEET (Peterborough M.E. & CFS Self-Help Group)
Guildford MESG
Suffolk Youth & Parent ME Support Group
East Anglia ME Patients Partnership
Maidstone MESG
Doris Jones MSc– Independent Researcher
Margaret Williams – ME Advocate
25% ME Group
21 Church Street, Troon
Ayrshire, KA10 6HT
Tel 01292 318611
CONTACTS FOR MEDIA
Simon Lawrence 25% ME Group 01292 318611
Hayley Klinger 25% ME Group Media Relations
Countess of Mar Tel: 020 72198627; email:
TYMES Trust – Children's Charity. Jane Colby 01277
840527 and 07941 293357.
Notes for journalists
ME is classified by the World Health Organisation (WHO) as a
neurological illness alongside motor neurone disease and MS,
and the UK government officially acknowledges this.
It is estimated that 25,000 children and between 100,000 and
300,000 adults suffer from ME in Britain. The condition had cost
the taxpayer about 4 billion up to 2004 (2004 Hansard Tony
Wright MP)
http://www.publications.parliament.uk/pa/cm200304/cmhansrd/vo040511/debtext/40511-58.htm
The 25%ME Group is a unique charity representing the interests
of those 25% of ME sufferers who are severely affected rather
than the wider ME community already represented by The ME
Association and other UK based ME charities. This means
many of our members are so ill that they are totally bedridden,
some are wholly dependent on carers for the basic functions of
daily living and others are lucky enough to be able to leave home
in a wheelchair occasionally.
Around the world a vast amount of research demonstrates
immune system dysregulation, neurological problems, vascular
and cardiac abnormalities as well as endocrine and digestive
problems in this multi-organ, multi-system, devastating illness.
For an overview see
http://www.ahummingbirdsguide.com/researchgeneral.htm
Dr Daniel Peterson a leading ME specialist in the US says: "it is
one of the most disabling diseases that I care for, far exceeding
HIV disease except for the terminal stages".
For info on the gene expression study based at the University of
London see here
http://www.meresearch.org.uk/research/projects/genesig.html
The preliminary findings suggest dysregulation of genes involved
in immune pathways, supporting the many reports in the
literature of immune dysregulation in the pathogenesis of
ME/CFS.
~~~~~~~~
------------------------------
Date: Tue, 26 Jun 2007 13:38:07 -0400
From: "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Striatal grey matter increase in patients suffering from fibromyalgia - A voxel-based morphometry study
Striatal grey matter increase in patients suffering from fibromyalgia - A
voxel-based morphometry study.
Pain. 2007 Jun 21; [Epub ahead of print]
Schmidt-Wilcke T, Luerding R, Weigand T, Jürgens T, Schuierer G, Leinisch E,
Bogdahn U.
Department of Neurology, Universitätsklinik Regensburg, Universitätsstraße 84,
D-93053 Regensburg, Germany.
PMID: 17587497
Fibromyalgia (FM), among other chronic pain syndromes, such as chronic tension
type headache and atypical face pain, is classified as a so-called dysfunctional
pain syndrome. Patients with fibromyalgia suffer from widespread, "deep" muscle
pain and often report concomitant depressive episodes, fatigue and cognitive
deficits. Clear evidence for structural abnormalities within the muscles or soft
tissue of fibromyalgia patients is lacking.
There is growing evidence that clinical pain in fibromyalgia has to be
understood in terms of pathological activity of central structures involved in
nociception. We applied MR-imaging and voxel-based morphometry, to determine
whether fibromyalgia is associated with altered local brain morphology. We
investigated 20 patients with the diagnosis of primary fibromyalgia and 22
healthy controls.
VBM revealed a conspicuous pattern of altered brain morphology in the right
superior temporal gyrus (decrease in grey matter), the left posterior thalamus
(decrease in grey matter), in the left orbitofrontal cortex (increase in grey
matter), left cerebellum (increase in grey matter) and in the striatum
bilaterally (increase in grey matter).
Our data suggest that fibromyalgia is associated with structural changes in the
CNS of patients suffering from this chronic pain disorder. They might reflect
either a consequence of chronic nociceptive input or they might be causative to
the pathogenesis of fibromyalgia. The affected areas are known to be both, part
of the somatosensory system and part of the motor system.
------------------------------
Date: Wed, 27 Jun 2007 22:55:50 +0100
From: Tom Kindlon <tomkindlon OCEANFREE.NET>
Subject: RES: The Development Of An Epidemiological Case Definition For Chronic Fatigue Syndrome (CFS)
[From: American Journal of Epidemiology 163 (11): S1. i.e. June 1st 2006]
"The analyses demonstrated that the application
of the combination of the 4 discriminating variables-the defacto
epidemiological
case-definition and pre-defined comorbid conditions had the ability
to differentiate between disease and non-disease cases with CFS with
'postexertional
malaise' being the strongest predictor."
ABSTRACTS OF THE 2ND NORTH AMERICAN CONGRESS OF EPIDEMIOLOGY June 21-24,
2006
http://aje.oxfordjournals.org/cgi/reprint/163/suppl_11/S1.pdf
2006 Congress of Epidemiology Abstracts S1
097-S
THE DEVELOPMENT OF AN EPIDEMIOLOGICAL CASE DEFINITION FOR CHRONIC FATIGUE
SYNDROME (CFS).
*T Osoba, S Gray, J Duffield (University of the West of England)
Current case definitions for CFS are designed for clinical use and not
appropriate for health needs assessment. A robust epidemiological
casedefinition
for CFS is crucial in order to achieve rational allocation of resources
to improve service provision for people with CFS. To identify the
clinical features that distinguishes people with CFS from those with other
forms of chronic fatigue and subgroups. General practice data on symptoms,
comorbidities and demographics of patients with unexplained chronic
fatigue based on 4 CFS clinical case definitions were obtained. Cases were
assigned to disease and non disease groups by an expert panel, and
multivariate
discriminant analysis used to identify those clinical features which
assigned at least 95% of patients studied to the correct group. Sensitivity
analysis assessed the impact of the clinical research definitions on
ascertainment,
classification and regression tree analysis, cluster analysis to
identify subgroups on the basis of the clinical manifestations of their
illness
and a review of basis of diagnosis to assess how far GPs' diagnoses were
consistent with current definitions and specialist opinion. Preliminary
analyses
using classification and regression tree analysis included a 10-fold
cross-validation approach to prevent over fitting. Reliability by Cronbach's
alpha was 0.644. Risk and classification tables showed an overall correct
classification rate of 81.2%. The analyses demonstrated that the application
of the combination of the 4 discriminating variables-the defacto
epidemiological
case-definition and pre-defined comorbid conditions had the ability
to differentiate between disease and non-disease cases with CFS with
'postexertional
malaise' being the strongest predictor.
------------------------------
Date: Thu, 28 Jun 2007 10:44:30 -0700
From: Kimberly Hare <kimberly_ohare@YAHOO.COM>
Subject: RES: Multiple chemical sensitivity: study of 52 cases
[Multiple chemical sensitivity: study of 52 cases.]
[Article in Spanish]
Med Clin (Barc). 2007 Jun 16;129(3):96-9.
Nogué S, Fernández-Solá J, Rovira E, Montori E, Fernández-Huerta JM, Munné P.
Unidades de Toxicología y de Fatiga Crónica. Hospital Clínic. IDIBAPS.
Universidad de Barcelona. Barcelona. España. SNOGUE@clinic.ub.es.
PMID: 17594860
BACKGROUND AND OBJECTIVE: Multiple chemical sensitivity (MCS) is characterized
by a loss of tolerance to various environmental chemicals. The objective of
this study was to describe patients with MCS seen in our hospital.
PATIENTS AND METHOD: Patients consecutively seen by the Toxicology and Chronic
Fatigue Units who presented symptoms of MCS were included. The diagnosis was
clinical. All patients completed the Quick Environmental Exposure and
Sensitivity Inventory (QEESI) questionnaire.
RESULTS: Fifty-two patients were included. The average age (standard deviation)
was 47.2 (7.6) years, and 46 (88%) were females. The origin of the syndrome was
related to occupational exposure to various chemical agents in 31 cases
(59.6%), including occupational accidents in 14 patients (fumigation of the
workplace with insecticides). In 20 patients (38.5%), the syndrome could not be
associated with any toxic exposure and was considered a manifestation of
chronic fatigue syndrome. The QEESI showed mean scores of 72.9 (18.6) on the
chemical inhalant intolerance scale, 45.5 (20.6) on the other intolerances
scale, 69.8 (20.6) on the symptom severity scale, 4.4 (1.8) on the masking
index and 66.6 (21.7) on the life impact scale. All patients were followed up
for a minimum of 12 months, and during this period they remained stable with no
deaths.
CONCLUSIONS: MCS normally affects middle-aged women. It is frequently triggered
by exposure to chemical agents, especially insecticides. An association with
chronic fatigue syndrome is common. The prognosis is good but the patients'
quality of life is seriously affected.
------------------------------
Date: Fri, 29 Jun 2007 06:18:17 -0400
From: "Connie [connie.nelson NTLWORLD.COM] via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: NOT,RES: Kings College, London: Current research projects
>From Connie Nelson <connie.nelson@NTLWORLD.COM>:
http://www.kcl.ac.uk/projects/cfs/research.html?m=print
Current research projects
All staff are involved in research as it is intrinsic to the running of the
Unit. Below we have listed all the research projects we are currently
running.
1) A multi-centred 4 armed randomised controlled trial of specialist medical
care versus specialist medical care plus one of three additional treatments
(either cognitive behaviour therapy, graded exercise therapy or adaptive
pacing therapy).
2) A pilot study evaluating telephone treatment for CFS in 11-18 year olds.
3) A pilot study evaluating the treatment of severely affected house-bound
adolescents with CFS.
4) A pilot study evaluating the treatment of severely affected house-bound
adults with CFS.
5) A psycho-physiological study examining cortisol levels in adults with CFS
before and after a course of CBT.
6) A psycho-physiological study examining cortisol levels in adolescents
with CFS before and after a course of CBT.
7) A questionnaire study on the role of personality and life stress in CFS -
a cross sectional study.
8) Randomised controlled trial of family focussed CBT for adolescents with
CFS: a 2 year follow up.
9) A prospective study examining predictors of outcome after a course of CBT
for patients with CFS.
10) A prospective study examining the relationship between perfectionism and
fatigue in students.
11) A qualitative study of adolescents and their parents perspectives on the
treatment they received as part of a randomised controlled trial.
12) A qualitative study examining the views of adults with CFS in relation
to being part of a large MRC funded RCT.
13) A comparison of outcomes between patients treated in a RCT and in
routine clinical practice.
14) An fMRI study investigating cognitive functioning and emotional
processing in patients with CFS.
2007 King's College London, Strand, London WC2R 2LS, United Kingdom. Tel +44
(0)20 7836 5454
------------------------------
Date: Fri, 29 Jun 2007 06:24:49 -0400
From: "Connie [connie.nelson NTLWORLD.COM] via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: NOT,MED: Health Committee press notice - NICE evidence session [UK]
House of Commons
Health Committee
7 Millbank, London SW1P 3JA
Tel: 020 7219 6182
PRESS NOTICE
National Institute for Health and Clinical Excellence Evidence Sessions
27 June 2007
No. 25 - Session 2006-07
The Health Committee would like to announce the witnesses for the third oral
evidence session of its inquiry into the National Institute for Health and
Clinical Excellence.
Thursday 12 July
Wilson Room, Portcullis House
at 10.00 am
Dr Gill Morgan, Chief Executive, NHS Confederation Dr Tim Crayford,
Association of Directors of Public Health, and
head of public health at Croydon PCT Dr Lisa Llewellyn, Chief
Executive, Berkshire East PCT
At approx 11.15 am
Richard Barker, Director General, Association of the British Pharmaceutical
Industry (ABPI) Dr David Brickwood,
Vice-President, International and Government Affairs -
Europe. Johnson & Johnson
Eddie Gray, General Manager and Senior Vice President, GlaxoSmithKline UK
Further evidence sessions are expected to take place in the autumn. Details
will be announced in due course.
The uncorrected transcript of each evidence session is placed on the Health
Committee website as soon as possible after the meeting -
Dates and times of all public House of Commons Select Committee meetings can
be found at www.parliament.uk/what_s_on/hoc_news3.cfm
Members of the public and representatives of the press will be admitted to
these meetings. Meetings may be held either in the Palace of Westminster or
Portcullis House, and there are often last minute changes. Those wishing to
attend are advised to check the venue by contacting the House of Commons
Public Information office on 020 7219 4272 the day before the meeting.
The Health Committee is a Select Committee of the House of Commons. It is
appointed under Standing Order No.152 to examine the expenditure,
administration and policy of the Department of Health and associated public
bodies. The Committee has the power to send for persons, papers and
records.
Please note that the Health Committee is unable to investigate individual
cases.
For Media Enquiries please contact 020 7219 5693
Current Membership of the Health Committee Rt Hon Kevin Barron MP (Chairman)
[L] Rother Valley Mr David Amess MP [C] Southend West Charlotte Atkins MP[L]
Staffordshire Moorlands Ronnie Campbell MP [L] Blyth Valley Jim Dowd MP [L]
Lewisham West Sandra Gidley MP [LD] Romsey Mr Stewart Jackson MP [C]
Peterborough Dr Doug Naysmith MP [L] Bristol North West Mike Penning MP [C]
Hemel Hempstead Dr Howard Stoate MP [L] Dartford Dr Richard Taylor MP [IND]
Wyre Forest
------------------------------
Date: Fri, 29 Jun 2007 06:34:07 -0400
From: "Connie [connie.nelson NTLWORLD.COM] via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: NOT,MED: Healthline on CFS
http://www.healthline.com/adamcontent/chronic-fatigue-syndrome
=A0
Definition
Chronic fatigue syndrome is a condition of prolonged and severe =
tiredness or
weariness (fatigue) that is not relieved by rest and is not directly =
caused
by other conditions. To be diagnosed with chronic fatigue syndrome, the
tiredness must be severe enough to decrease ability to participate in
ordinary activities by 50%.
=A0
Alternative Names
CFS; Fatigue - chronic=20
=A0
Causes, incidence, and risk factors
The exact cause of chronic fatigue syndrome (CFS) is unknown. Some
researchers suspect it may be caused by a virus, such as Epstein-Barr =
virus
or human herpes virus-6 (HHV-6). However, no distinct viral cause has =
been
identified.
Recent studies have shown that chronic fatigue syndrome may be caused by
inflammation of pathways in the nervous system, and that this =
inflammation
may be some sort of immune response or autoimmune process. CFS may occur
when a viral illness is complicated by an inadequate or dysfunctional =
immune
response. Other factors such as age, prior illness, stress, environment, =
or
genetic disposition may also play a role. CFS most commonly occurs in =
women
ages 30 to 50.
The Centers for Disease Control (CDC) describes CFS as a distinct =
disorder
with specific symptoms and physical signs, based on the exclusion of =
other
possible causes. The number of patients with CFS is unknown.
=A0
Symptoms
Symptoms of CFS are similar to those of most common viral infections =
(muscle
aches, headache, and fatigue), often developing within a few hours or =
days
and lasting for 6 months or more.
Main symptoms:
Fatigue or tiredness, never experienced to this extent before (new =
onset),
lasting at least 6 months and not relieved by bed rest=20
Fatigue that is severe enough to restrict activity (serious fatigue =
develops
with less than one-half of the exertion compared to before the illness)
Other symptoms:
Fatigue lasting more than 24 hours after an amount of exercise that =
would
normally be easily tolerated=20
Mild fever (101 degrees F or less)=20
Sore throat=20
Lymph node tenderness in the neck or armpit=20
Muscle weakness, all over or multiple locations, not explained by any =
known
disorder=20
Muscle aches (myalgias)=20
Feeling unrefreshed after sleeping an adequate amount of time=20
Headaches, different from previous headaches in quality, severity, or
pattern=20
Joint pain, often moving from joint to joint (migratory arthralgias),
without joint swelling or redness=20
Forgetfulness or other similar symptoms including difficulty =
concentrating,
confusion, or irritability
=A0
Signs and tests
Physical examination may confirm the fever, lymph node tenderness, lymph
node swelling, or other symptoms. The throat may appear red without =
drainage
or pus.
The health care provider can presume a diagnosis of chronic fatigue =
syndrome
(CFS) only after ruling out all other known possible causes of fatigue, =
such
as:
Infections=20
Immune or autoimmune disorders=20
Tumors.=20
Muscle or nerve diseases (such as multiple sclerosis)=20
Endocrine diseases (such as hypothyroidism)=20
Psychiatric or psychological illnesses, particularly depression (since =
CFS
itself may be associated with depression, a diagnosis of depression does =
not
rule out CFS but fatigue related to depression alone must be ruled out =
for
CFS to be diagnosed)=20
Drug dependence=20
Other illnesses (such as heart, kidney, liver diseases)
A diagnosis of CFS must include:
Extreme, prolonged fatigue=20
Absence of other causes of chronic fatigue (excluding depression)=20
At least 4 of the other symptoms listed
There are no specific tests to confirm the diagnosis of CFS, though a
variety of tests are usually done to exclude other possible causes of =
the
symptoms.
There are some typical findings on tests that, while not specific enough =
to
diagnose CFS, are seen consistently in people who are eventually =
diagnosed
with the disorder. These include:
Higher levels of specific white blood cells (CD4 T cells) compared to =
other
types of white blood cells (CD8 T cells)=20
Brain MRI showing swelling in the brain or destruction of part of the =
nerve
cells (demyelination)=20
Specific white blood cells (lymphocytes) containing active forms of EBV =
or
HHV-6
=A0
Treatment
There is currently no treatment that has been proven to be effective in
curing CFS Instead, the symptoms are treated. Many people with CFS
experience depression and other psychological problems that may improve =
with
treatment.
Some of the proposed treatments include:
Antiviral drugs (such as acyclovir)=20
Drugs to fight "hidden" yeast infections (such as nystatin)=20
Medications to treat depression (antidepressant drugs)=20
Medications to treat anxiety (antianxiety drugs)=20
Medications to reduce pain, discomfort, and fever
Some medications can cause adverse reactions or side effects that are =
worse
than the original symptoms of chronic fatigue syndrome.
Patients with CFS are encouraged to maintain active social lives, and =
mild
physical exercise may also be helpful.
Expectations (prognosis)
The long-term outlook for patients with CFS is variable and difficult to
predict at the initial onset. Some patients have been reported to =
completely
recover after six months to a year. Others may take longer for a =
complete
recovery.
Some patients report never returning to their pre-illness state. Most
studies report that patients treated in an extensive rehabilitation =
program
have a better prognosis of improving significantly than those patients =
who
don't seek treatment.
=A0
Complications
Social isolation caused by fatigue=20
Lifestyle restrictions (some people are so fatigued that they are
essentially disabled during the course of the illness)=20
Depression (related both to symptoms and lack of diagnosis)=20
Side effects and adverse reactions to medication treatments
=A0
Calling your health care provider
Call for an appointment with your health care provider if you experience
persistent, severe fatigue, with or without other symptoms of this =
disorder.
Other more serious disorders can cause similar symptoms and should be
excluded. More information on CFS is available from the Centers for =
Disease
Control and Prevention and the CFIDS Association of America.
------------------------------
Date: Fri, 29 Jun 2007 12:51:05 +0200
From: "Dr. Marc-Alexander Fluks" <fluks COMBIDOM.COM>
Subject: RES,NOT: CFS award for Yoshitsugi Hokama
Source: Honolulu Advertiser
Date: June 28, 2007
URL: http://the.honoluluadvertiser.com/article/2007/Jun/28/br/br9683021754.html
University of Hawai professor recognized for chronic-fatigue study
------------------------------------------------------------------
Pathology professor, at the University of Hawai'i's John
A. Burns School of Medicine, has received a national award for his
research connecting ciguatera poisoning - food poisoning tied to eating
contaminated fish - to Chronic Fatigue and Immune Dysfunction Syndrome
(CFIDS), according to a press release.
The National CFIDS Foundation awarded him with the 2007 Outstanding
Researcher Award. His research was the first to find ciguatoxin, a potent
neurotoxin, in the blood of Chronic Fatigue Syndrome patients.
Since announcing his discovery at a 2002 medical conference in Japan,
Hokama secured an international blood permit so that millions of patients
with the disease could get tested by the medical school.
Ciguatoxins are recognized as some of the most potent biological toxins.
The National CFIDS Foundation, Inc. was founded about 10 years ago with
the primary goal of funding medical research to find a cause, expedite
treatments and eventually a cure for the disease.
--------
(c) 2007 Honolulu Advertiser
------------------------------
Date: Fri, 29 Jun 2007 14:39:39 -0400
From: "Fred Springfield <fredspringfield verizon.net> via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: RES: Violence, stress, and somatic syndromes
Violence, stress, and somatic syndromes.
Journal: Trauma Violence Abuse. 2007 Jul;8(3):299-313.
Author: Crofford LJ.
Affiliation: Center for the Advancement of Women's Health, University of
Kentucky. lcrofford@uky.edu.
NLM Citation: PMID: 17596347
Syndromes characterized by pain, fatigue, mood disorder, cognitive
dysfunction, and sleep disturbance have been referred to as stress-related
somatic disorders by virtue of the observation that onset and exacerbation
of symptoms occur with stress. These syndromes include but are not limited
to fibromyalgia, chronic fatigue syndrome, temporomandibular disorder, and
irritable bowel syndrome.
As with most chronic illnesses, genetic susceptibility and lifetime
environmental exposures play a role in creating vulnerability to disease.
Cumulative lifetime stress has been associated with a number of physiologic
changes in the brain and body that reflect dysregulated hormonal and
autonomic activity. Exposure to the stressor of violence is likely to create
a state of vulnerability for the stress-related somatic syndromes and also
to contribute to symptom expression and severity.
Understanding the relationship between violence, stress, and somatic
syndromes will help in clarifying the consequences of violence exposure to
long-term health and health-related quality of life.
------------------------------
Date: Fri, 29 Jun 2007 15:12:55 -0400
From: "Fred Springfield <fredspringfield verizon.net> via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: RES: Hypothalamic-Pituitary-Adrenal Axis Function in Chronic Fatigue Syndrome
Hypothalamic-Pituitary-Adrenal Axis Function in Chronic Fatigue Syndrome.
Journal: Neuropsychobiology. 2007 Jun 27;55(2):112-120 [Epub ahead of print]
Authors: Van Den Eede F, Moorkens G, Van Houdenhove B, Cosyns P, Claes SJ.
Affiliation: Department of Psychiatry, University Hospital Antwerp, Edegem,
Belgium.
NLM Citation: PMID: 17596739
There is evidence for a hypofunction of the hypothalamic-pituitary-adrenal
(HPA) axis in a proportion of the patients with chronic fatigue syndrome
(CFS), despite the negative studies and methodological difficulties. In this
review, we focus on challenge studies and on the role of the HPA axis in the
pathogenesis of CFS.
Mild hypocortisolism, blunted adrenocorticotropin response to stressors and
enhanced negative feedback sensitivity to glucocorticoids are the main
findings. Several underlying mechanisms have been proposed. Currently, it is
a matter of debate whether these disturbances have a primary role in the
pathogenesis of CFS.
However, even if the HPA axis dysfunctions are secondary to other factors,
they are probably a relevant factor in symptom propagation in CFS.
Copyright (c) 2007 S. Karger AG, Basel.
------------------------------
Date: Sat, 30 Jun 2007 00:01:17 -0400
From: "Bernice A. Melsky" <bernice.melsky1 VERIZON.NET>
Subject: RES: Attentional modulation of visceral and somatic pain
Attentional modulation of visceral and somatic pain.
Neurogastroenterol Motil. 2007 Jul;19(7):569-77.
Dunckley P, Aziz Q, Wise RG, Brooks J, Tracey I, Chang L.
Department of Physiology, Anatomy and Genetics, Oxford, UK, and Centre for
Functional Magnetic Resonance Imaging of the Brain, University of Oxford,
Oxford, UK.
PMID: 17593138
A better understanding of the cortical processes underlying attentional
modulation of visceral and somatic pain in health are essential for
interpretation of future imaging studies of hypervigilance towards bodily
sensations which is considered to be an aetiologically important factor in
the heightened pain reported by patients with irritable bowel syndrome and
fibromyalgia.
Twelve healthy subjects were recruited for this study. Simultaneous trains
of electrical pulses (delivered to either the rectum or lower abdomen) and
auditory tones lasting 6 s were delivered to the subjects during a
whole-brain functional scan acquisition. Subjects were instructed to attend
to the auditory tones (distracter task) or electrical pulses (pain task).
Pain intensity ratings were significantly lower during the distraction task
compared with the pain task (P < 0.01) in both sensory modalities. The left
primary somatosensory cortex increased in activity with increasing pain
report, during attention to visceral pain. Bilateral anterior insula (aIns)
cortex activity increased with increasing somatic pain report independent
of the direction of attention. Conversely, the primary and secondary
auditory cortices significantly increased in activation with decreased pain
report.
These results suggest that pain intensity perception during attentional
modulation is reflected in the primary somatosensory cortex (visceral pain)
and aIns cortex activity (somatic pain).
cc
------------------------------
Date: Sat, 30 Jun 2007 14:24:03 -0400
From: Fred Springfield <fred.springfield1 VERIZON.NET>
Subject: RES: Health status and health care utilization of multiple sclerosis in Canada
Health status and health care utilization of multiple sclerosis in Canada.
Journal: Can J Neurol Sci. 2007 May;34(2):167-74.
Authors: Pohar SL, Jones CA, Warren S, Turpin KV, Warren K.
Affiliation: Institute of Health Economics, Faculty of Rehabilitation
Medicine, Edmonton, Alberta, Canada.
NLM Citation: PMID: 17598593
BACKGROUND: Persons with multiple sclerosis (MS) represent a small segment
of the population, but given the progression of the disease, they
experience substantial physical, psychosocial and economic burdens.
OBJECTIVE: The primary aim was to compare demographic characteristics,
health status, health behaviours, health care resource utilization and
access to health care of the community dwelling populations with and
without MS.
METHODS: Cross-sectional survey using data from the Canadian Community
Health Survey (CCHS 1.1). Adjusted analyses were performed to assess
differences between persons with MS and the general population, after
controlling for age and sex. Normalized sampling weights and bootstrap
variance estimates were used. RESULTS: Respondents with MS were 7.6 times
(95% CI: 5.4, 10.7) more likely to have health-related quality of life
scores that reflected severe impairment than respondents without MS.
Respondents with MS were 12.2 times (95% CI: 8.6, 17.2) to rate their
health as 'poor' or 'fair' than the general population. Urinary
incontinence and chronic fatigue syndrome were 18.7 times (95% CI: 12.5,
28.2) and 21.9 times (95% CI: 11.9, 40.3), more likely to be reported by
respondents with MS than those without. Differences between the two
populations also existed in terms of health care resource utilization and
access and health behaviours.
CONCLUSION: Large discrepancies in health status and health care
utilization existed between persons with MS who reside in the community and
the general population according to all indicators used. Health care needs
of persons with MS were also not met.
------------------------------
Date: Sat, 30 Jun 2007 15:23:41 -0400
From: Fred Springfield <fred.springfield1 VERIZON.NET>
Subject: RES: Chronic fatigue syndrome after q Fever
Chronic fatigue syndrome after q Fever.
Journal: Med Sci Monit. 2007 Jul;13(7):CS88-92.
Authors: Ledina D, Bradaric N, Milas I, Ivic I, Brncic N, Kuzmicic N.
Affiliation: Department of infectious diseases, Split University Hospital,
Split; Croatia.
NLM Citation: PMID: 17599032
Background: Q fever is a common and acute but rare chronic zoonosis caused
by Coxiella burnetii. Its acute form manifests as atypical pneumonia,
flu-like syndrome, or hepatitis. Some authors observed symptoms of chronic
fatigue in a small number of patients after the acute phase of Q fever; in
many cases serological assay confirmed the activity of Coxiella burnetii
infection. The effect of antibiotic therapy on post-Q-fever fatigue
syndrome has not been studied in south-east Europe thus far.
Case Reports: Three patients are presented with post-Q-fever fatigue
syndrome. All fulfilled the CDC criteria for chronic fatigue syndrome. IgA
antibodies to phase I of the growth cycle of Coxiella burnetii were
positive in two patients and negative in one. Two patients were treated
with doxycycline for two weeks in the acute phase of illness and one with a
combination of erythromycin and gentamycin. After 4-12 months they
developed post-Q-fever fatigue syndrome and were treated with intracellular
active antibiotics (fluoroquinolones and tetracycline) for 3-12 months.
Efficacy of the treatment was observed in two patients, but in one patient
the results were not encouraging.
Conclusions: These results suggest the possibility of the involvement of
Coxiella burnetii infection in the evolution of chronic fatigue syndrome.
This is the first report on post-Q-fever fatigue syndrome in Mediterranean
countries. Evidence of IgA antibodies to phase I of the growth cycle of
Coxiella burnetii is not a prerequisite for establishing a diagnosis of
CFS. The recommendation of antibiotic treatment in post-Q-fever fatigue
syndrome requires further investigation.
------------------------------
Date: Sat, 30 Jun 2007 18:40:29 -0400
From: "Cort Johnson <phoenixcfs yahoo.com> [via Co-Cure Moderators
<co-cure-mod listserv.nodak.edu>]" <auntiem6 PTD.NET>
Subject: RES:The NIH and CFS Part IV: Assessing the Neuroimmune Grants
Making a Difference or More of the Same?
This is the conclusion of a four part series of papers to assess the NIH 's Neuroimmune RFA - it's major effort on CFS over the past five year. In this paper the grants are analysed and conclusions are drawn regarding the ability of the NIH - the largest and most important medical research institution in the world - to study CFS.
http://phoenix-cfs.org/RFA%20IV%20Endgame%20Assessing%20the%20Grants.htm
Cort Johnson
------------------------------
Date: Sat, 30 Jun 2007 21:28:23 -0400
From: "Bernice A. Melsky" <bernice.melsky1@VERIZON.NET>
Subject: RES: Aquatic Training and Detraining on Fitness and Quality of Life in Fibromyalgia
Aquatic Training and Detraining on Fitness and Quality of Life in Fibromyalgia.
Med Sci Sports Exerc. 2007 Jul;39(7):1044-1050.
Tomas-Carus P, Häkkinen A, Gusi N, Leal A, Häkkinen K, Ortega-Alonso A.
1 Fitness and Lifequality Laboratory, Faculty of Sports Sciences,
University of Extremadura, Cáceres, SPAIN;
2 Department of Sports Sciences, Physical Activity and Health, University
of Evora, Evora, PORTUGAL;
3 Department of Physical Medicine and Rehabilitation, Jyväskylä Central
Hospital, Jyväskylä, FINLAND;
4 Hospital of Cáceres, Cáceres, SPAIN;
5 Department of Biology of Physical Activity, University of Jyväskylä,
Jyväskylä, FINLAND; and
6 Department of Health Sciences, University of Jyväskylä, Jyväskylä, FINLAND.
PMID: 17596770
PURPOSE: To evaluate the effects of a 12-wk period of aquatic training and
subsequent detraining on health-related quality of life (HRQOL) and
physical fitness in females with fibromyalgia.
METHODS: Thirty-four females with fibromyalgia were randomly assigned into
two groups: an exercise group, who exercised for 60 min in warm water,
three times a week (N = 17); and a control group, who continued their
habitual leisure-time activities (N = 17). HRQOL was assessed using the
Short Form 36 questionnaire and the Fibromyalgia Impact Questionnaire.
Physical fitness was measured using the following tests: Canadian Aerobic
Fitness, hand grip dynamometry, 10-m walking, 10-step stair climbing, and
blind one-leg stance. Outcomes were measured at baseline, after treatment,
and after 3 months of detraining.
RESULTS: After 12 wk of aquatic exercise, significant positive effects of
aquatic training were found in physical function, body pain, general health
perception, vitality, social function, role emotional problems and mental
health, balance, and stair climbing. After the detraining period, only the
improvements in body pain and role emotional problems were maintained.
CONCLUSION: The present water exercise protocol improved some components of
HRQOL, balance, and stair climbing in females with fibromyalgia, but
regular exercise and higher intensities may be required to preserve most of
these gains.
------------------------------
Date: Sun, 1 Jul 2007 14:22:01 -0400
From: Co-Cure Moderator <ray CO-CURE.ORG>
Subject: NOT,RES: Full text of "Chronic fatigue syndrome after q Fever"
The full text of
Med Sci Monit. 2007 Jul;13(7):CS88-92.
Chronic fatigue syndrome after q Fever.
Ledina D, Bradaric N, Milas I, Ivic I, Brncic N, Kuzmicic N.
Is available for free in PDF at
http://www.medscimonit.com/pub/vol_13/no_7/9651.pdf
------------------------------
Date: Sun, 1 Jul 2007 14:38:18 -0400
From: "David Axford <axford worldonline.co.uk> via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: NOT,RES: Illness Intrusiveness in Myalgic Encephalomyelitis - An exploratory study
Illness Intrusiveness in Myalgic Encephalomyelitis - An exploratory study.
("this paper includes a short introduction to the cardinal features of ME
as defined by Ramsay"):
< http://freespace.virgin.net/david.axford/melist.htm>
[AOL subscribers: <A
HREF=" http://freespace.virgin.net/david.axford/melist.htm">Click here</A> ]
Click on the:
"ME Research Online" button which is in the left-hand column.
You'll then see the "Illness Intrusiveness in Myalgic Encephalomyelitis -
An exploratory study" clearly marked 1st July 2007 in the right hand frame.
This has a "NEW" graphic alongside. Click on the button (microscope on top
of the globe).
You may also find the article using the SEARCH tool which is on the home page.
It is possible that your browser won't log on first time due to the large
number of people who are accessing the web-site. Please be patient and try
again at different times when it's less busy.
E-mail: david.axford virgin.net.uk
Web: ME/CFS: http://freespace.virgin.net/david.axford/me/me.htm
------------------------------
Date: Sun, 1 Jul 2007 18:52:20 +0200
From: Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: not,med: BBC Radio Scotland Podcasts
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>> Help ME Circle <<<<
>>>> 1 July 2007 <<<<
Editorship : j.van.roijen chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
From: Stephen Ralph <stephen.e.ralph meactionuk.org.uk>
June 28, 2007 2:05 PM
BBC Radio Scotland Podcasts
~~~~~~~~~~~~~~~~~~~~~~~
Hello there,
I have created a set of 4 .mp3 files fo yesterdays BBC Radio
Scotland broadcast.
Two are in near FM quality and around 6Mb in size and the
other two are AM quality and are around 3mb in size.
Which ever versions you download they are well worth a listen.
Many thanks must go to Ciara for getting the word out there and
to ME Research UK for raising awareness along with Radio
Scotland for taking ME seriously.
Programme One...
1105-1130 - 27th June 2007
Give Me A Voice
Continuing the series where BBC Radio Scotland gives a voice
to another issue from a very personal point of view. Ciara
MacLaverty talks frankly about how she has lived with ME for the
past 20 years. She reveals how she's fighting a devastating
illness as well as battling with the public's misunderstanding of
her condition.
http://www.meactionuk.org.uk/BBC_Radio_Scotland_-_Give_ME_a_Voice_-_AM_-_270607.mp3
(3.2Mb)
http://www.meactionuk.org.uk/BBC_Radio_Scotland_-_Give_ME_a_Voice_-_FM_-_270607.mp3
(6.4Mb)
Programme 2...
1130-1200 - 27th June 2007
Medical Matters
Following on from Ciara MacLaverty's experiences, Cathy
MacDonald reveals the cutting edge research aimed at finding a
cure for ME. Tackling the difficult nature of the disease head on,
she explores the widespread conceptions about it and some of
the alternative therapies which have proved helpful for some
sufferers.
http://www.meactionuk.org.uk/BBC_Radio_Scotland_-_Medical_Matters_-_ME_-_AM_-_270607.mp3
(3.2Mb)
http://www.meactionuk.org.uk/BBC_Radio_Scotland_-_Medical_Matters_-_ME_-_FM_-_270607.mp3
(6.4Mb)
See also the BBC Radio Scotland Website...
http://www.bbc.co.uk/scotland/radioscotland/programmes/features&
Wednesday
Special double feature as Radio Scotland explores one of the
most misunderstood and controversial of diseases - ME.
1105-1130
Give Me A Voice
Continuing the series where BBC Radio Scotland gives a voice
to another issue from a very personal point of view. Ciara
MacLaverty talks frankly about how she has lived with ME for the
past 20 years. She reveals how she's fighting a devastating
illness as well as battling with the public's misunderstanding of
her condition.
http://www.bbc.co.uk/radio/aod/radioscotland_aod.shtml?scotland/feature1_wed
1130-1200
Medical Matters
Following on from Ciara MacLaverty's experiences, Cathy
MacDonald reveals the cutting edge research aimed at finding a
cure for ME. Tackling the difficult nature of the disease head on,
she explores the widespread conceptions about it and some of
the alternative therapies which have proved helpful for some
sufferers.
http://www.bbc.co.uk/radio/aod/radioscotland_aod.shtml?scotland/feature2_wed
Yours sincerely,
Stephen Ralph.
~~~~~~~~
------------------------------
Date: Mon, 2 Jul 2007 13:57:23 -0400
From: "Ellen Goudsmit <ellengoudsmit hotmail.com> via Co-Cure Moderator"
<ray CO-CURE.ORG>
Subject: NOT,RES: Illness Intrusiveness in Myalgic Encephalomyelitis
From: Ellen Goudsmit <ellengoudsmit@hotmail.com>:
Illness intrusiveness is a term which describes the impact of an illness on
various aspects of daily life. There is, to my knowledge, no other study
comparing the effect of ME and other disorders using the same scale. The
results support the view that ME, like CFS, is an extremely disabling
condition. Indeed, the score on the rating scale we used exceeded those
documented in people with varioous forms of cancer, MS and end-stage renal
disease.
The paper was rejected because of lack of knowledge about the criteria
(e.g. failure to recognise the expertise of Ramsay and Dowsett, referees
wanted international consensus criteria e.g. Fukuda et al 1994 though
these are not specific for ME) and the lack of a control group (wasn't
needed, since we wanted to measure illness intrusiveness in ME, and we have
normative data for other patient groups) etc. As before, I submitted it to
high impact journals, hoping they might be as interested in the subgroups
of CFS, as the BMJ are! In my experience, health psychology journals, most
of which have changed editors in the last year, are not.
I have placed the research in the public domain to help patients who need
to show the disabling nature of this illness e.g. for benefits purposes.
The scores obtained are consistent with the results on CFS described by
Komaroff et al., using the MOS.
Ellen
------------------------------
Date: Mon, 2 Jul 2007 14:26:23 -0400
From: "Bernice A. Melsky" <bernice.melsky1 VERIZON.NET>
Subject: RES: Pain acceptance moderates the relation between pain and negative affect in female osteoarthritis and fibromyalgia patients
Pain acceptance moderates the relation between pain and negative affect in
female osteoarthritis and fibromyalgia patients.
Ann Behav Med. 2007 Jun;33(3):291-301.
Kratz AL, Davis MC, Zautra AJ.
Arizona State University.
PMID: 17600456
Background: Chronic pain is often intractable despite advanced medical and
psychotherapeutic treatments. Pain acceptance is emerging as a promising
complement to control-based pain management strategies and a likely
approach to maintaining quality of life for chronic pain patients.
Purpose: This theoretically based analysis of an existing database examined
the extent to which pain acceptance predicted weekly reports of positive
affect (PA) and negative affect (NA), and the relations of pain severity to
both PA and NA.
Methods: Participants were women, 36 with osteoarthritis and 86 with
fibromyalgia, who completed an initial assessment for demographics, pain
catastrophizing, and pain acceptance, and 2 to 12 weekly assessments of
pain severity, PA, and NA.
Results: Multilevel modeling analyses indicated that pain acceptance was
related to higher levels of PA but was unrelated to NA. Furthermore, pain
acceptance moderated the relation of NA and pain severity, such that
expected increases in NA during pain exacerbations were buffered by higher
levels of pain acceptance.
Conclusions: These findings suggest that pain patients with greater
capacity to accept pain may be emotionally resilient in managing their
condition.
------------------------------
Date: Mon, 2 Jul 2007 15:30:48 -0400
From: Co-Cure Moderator <ray CO-CURE.ORG>
Subject: NOT,MED: New Warnings on Suicidality in Young Adults Taking Antidepressants
Source: http://www.accessdata.fda.gov/psn/transcript.cfm?show=65#3
New Warnings on Suicidality in Young Adults Taking Antidepressants
FDA Patient Safety News: Show #65, July 2007
FDA has proposed that the makers of all antidepressant drugs warn in the
product labeling that patients 18 to 24 years old who are on these drugs
may be at increased risk for suicidal thinking and suicide attempts. The
new warning would be added to the black box section of the label, which
already warns about this risk in children and adolescents.
The proposed labeling change would also state that the increased risk has
not been observed in patients older than 24, and that patients over 65
taking antidepressants actually have a decreased risk of suicidality. The
warning also emphasizes that psychiatric disorders themselves are the most
important causes of suicide.
Affected Products:
• Anafranil (clomipramine)
• Asendin (amoxapine)
• Aventyl (nortriptyline)
• Celexa (citalopram hydrobromide)
• Cymbalta (duloxetine)
• Desyrel (trazodone HCl)
• Elavil (amitriptyline)
• Effexor (venlafaxine HCl)
• Emsam (selegiline)
• Etrafon (perphenazine/amitriptyline)
• Fluvoxamine maleate
• Lexapro (escitalopram oxalate)
• Limbitrol (chlordiazepoxide/amitriptyline)
• Ludiomil (maprotiline)
• Marplan (isocarboxazid)
• Nardil (phenelzine sulfate)
• Nefazodone HCl
• Norpramin (desipramine HCl)
• Pamelor (nortriptyline)
• Parnate (tranylcypromine sulfate)
• Paxil (paroxetine HCl)
• Pexeva (paroxetine mesylate)
• Prozac (fluoxetine HCl)
• Remeron (mirtazapine)
• Sarafem (fluoxetine HCl)
• Seroquel (quetiapine)
• Sinequan (doxepin)
• Surmontil (trimipramine)
• Symbyax (olanzapine/fluoxetine)
• Tofranil (imipramine)
• Tofranil-PM (imipramine pamoate)
• Triavil (perphenazine/amitriptyline)
• Vivactil (protriptyline)
• Wellbutrin (bupropion HCl)
• Zoloft (sertraline HCl)
• Zyban (bupropion HCl)
Additional Information:
FDA MedWatch Safety Alert. Antidepressant Medication Products. May 2, 2007.
http://www.fda.gov/medwatch/safety/2007/safety07.htm#Antidepressant
________________________________________
FDA Patient Safety News is available at www.fda.gov/psn
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