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Co-Cure Weekly Digest of research and medical posts only - 25 Jun 2007 to 2 Jul 2007

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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

 

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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

www.25megroup.org

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

hayley@pero.demon.co.uk

Countess of Mar Tel: 020 72198627; email:

marm@parliament.uk

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.

 

 

~~~~~~~~

 

              [Return to top]

 

------------------------------

 

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.

 

              [Return to top]

------------------------------

 

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.

 

              [Return to top]

------------------------------

 

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.

 

 

 

 

 

[Return to top]

------------------------------

 

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

 

              [Return to top]

------------------------------

 

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 -

www.parliament.uk/healthcom

 

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

 

              [Return to top]

------------------------------

 

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.

 

              [Return to top]

------------------------------

 

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

 

              [Return to top]

------------------------------

 

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.

 

              [Return to top]

------------------------------

 

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.

 

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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

 

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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.

 

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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.

 

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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

 

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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.

 

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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

 

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------------------------------

 

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

 

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------------------------------

 

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.

 

 

~~~~~~~~

 

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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

 

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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.

 

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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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End of Co-Cure Weekly Digest of research and medical posts only - 25 Jun 2007 to 2 Jul 2007

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