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Co-Cure Weekly Digest of research and medical posts only - 23 Apr 2007 to 30 Apr 2007

Topics of the week:
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                       This is a special digest of
                  Co-Cure Research & Medical posts only
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Date:    Tue, 1 May 2007 12:19:49 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: A randomized, controlled, trial of controlled release paroxetine in fibromyalgia

A randomized, controlled, trial of controlled release paroxetine in
fibromyalgia.

Am J Med. 2007 May;120(5):448-54.

Patkar AA, Masand PS, Krulewicz S, Mannelli P, Peindl K, Beebe KL, Jiang W.

Department of Psychiatry and Behavioral Sciences, Duke University Medical
Center, Durham, NC 27704, USA. ashwin.patkar duke.edu

PMID: 17466657


PURPOSE: We investigated the efficacy and tolerability of paroxetine
controlled release, a selective serotonin reuptake inhibitor in fibromyalgia.

METHODS: After excluding patients with current major depression and anxiety
disorders, 116 subjects with fibromyalgia were enrolled in a 12-week,
randomized, double-blind, placebo-controlled, trial of paroxetine
controlled release (12.5-62.5 mg/day). The primary outcome measure was
proportion of responders as defined as a> or =25% reduction in scores on
the Fibromyalgia Impact Questionnaire (FIQ) from randomization to end of
treatment. Secondary outcome measures included changes in FIQ scores,
Clinical Global Impression -Improvement (CGI-I) and Severity (CGI-S)
scores, Visual Analogue Scale for pain scores, number of tender points, and
scores on the Sheehan Disability Scale (SDS).

RESULTS: Significantly more patients in paroxetine controlled release group
(57%) showed a> or =25% reduction in FIQ compared to placebo (33%)
(P=.016). Paroxetine controlled release was significantly superior to
placebo in reducing the FIQ total score (P =.015). The CGI-I ratings
significantly favored the drug over placebo (P<.005). The improvements on
other secondary outcome measures between the 2 groups were not
statistically significant. Drowsiness, dry mouth, blurred vision, genital
disorders, and anxiety were reported more frequently with paroxetine
controlled release. The mean dose of paroxetine controlled release was 39.1
mg/day.

CONCLUSIONS: Paroxetine controlled release appears to be well-tolerated and
improve the overall symptomatology in patients with fibromyalgia without
current mood or anxiety disorders. However, its effect on pain measures
seems to be less robust.

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Date:    Tue, 1 May 2007 19:45:44 +0200
From:    Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: not,med: ME/CFS & FM - State conferences

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


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http://www.thespectrum.com/apps/pbcs.dll/article?AID=/20070430/NEWS01/70430009


The Spectrum


State conferences focus on Chronic Fatigue, Fibromyalgia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


The Organization for Fatigue and Fibromyalgia Education and
Research (OFFER) will host two Utah Health conferences this
Friday and Saturday in Salt Lake City.

The two conferences are designed to offer Utah medical
professionals and patients a chance to hear from some of the
country's top experts on chronic fatigue syndrome and
fibromyalgia. Experts will discuss the latest research advances
and treatment strategies for these two chronic illnesses.

Present will be Lucinda Bateman, MD, of the Fatigue
Consultation Clinic; Suzanne Vernon, PhD, of the Centers for
Disease Control and Prevention; Kimberly McCleary, president
and CEO of the CFIDS Association of America; David Bell, MD,
a pioneering CFS physician; Kathleen Light, PhD, of the
University of Utah; and other experts.

Sen. Orrin Hatch also will be present. He will make closing
remarks at the conference for health care professionals and then
make opening remarks for the conference for patients and
caregivers. He will also receive an award acknowledging his
efforts to further CFS research and advocacy.

Both conferences will be at the Professional Development
Center at Salt Lake Community College Miller Campus, 9750 S.
300 West, Sandy. For more information, call Linda Milne at
801-328-8080 or visit www.offerutah.org on the Internet.

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

Date:    Wed, 2 May 2007 00:41:42 +0200
From:    Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: res: ME/CFS Alters Sleep

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


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http://psychcentral.com/news/2007/05/01/chronic-fatigue-syndrome-alters-sleep/



Psych Central

Sleep Disorders



Chronic Fatigue Syndrome Alters Sleep
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


By: Psych Central News Editor
on Tuesday, May, 1, 2007

Reviewed by: John M. Grohol, Psy.D.
on Tuesday, May, 1, 2007


We all know what it feels like when a good rest is not obtained
for several consecutive days. Now imagine what it is like to feel
this way everyday, a condition called chronic fatigue syndrome
(CFS). In a new study, researchers find that brain wave activity is
blunted in CFS, potentially clearing the distinction between CFS
and depression.

Chronic fatigue syndrome (CFS) has been associated with
altered amounts of slow wave sleep, which could reflect reduced
electroencephalograph (EEG) activity and impaired sleep
regulation.

The study published in the May 1st issue of the journal SLEEP
finds that CFS is also associated with a blunted slow wave
activity (SWA) response to sleep challenge, suggesting an
impairment of the basic sleep drive and homeostatic response.

The study, authored by Roseanna Armitage, PhD, and
colleagues at the University of Michigan, focused on 13 pairs of
identical twins discordant for CFS.

Analyses, which were restricted to the first four non-REM
periods each night in order to show comparability, revealed that
SWA, or other sleep EEG measures, did not differ between the
CFS and healthy twins during a regular night's sleep.

According to Armitage, it was only after a "challenge" to sleep
regulation was introduced (keeping them awake an extra four
hours) that the CFS twins exhibited significantly less SWA
power in the first non-REM period of recovery sleep and
accumulated a smaller percentage of SWA in the first non-REM
period than their twin counterparts.

"CFS shares symptoms with depression, and some experts
have suggested that it is not a distinctly different disorder," said
Armitage.

"We have also conducted studies of SWA response to sleep
challenge in depression, and the results are very different.

Depressed women did not show a blunted SWA response to
sleep challenge. The present CFS study included only women,
and none had current depression. Therefore, our results cannot
be explained on the basis of depression."

Experts recommend that adults get between seven and eight
hours of sleep each night to maintain good health and optimum
performance.

Persons who think they might have a sleep disorder are urged to
consult with their primary care physician, who will refer them to a
sleep specialist.


Source: American Academy of Sleep Medicine
http://www.aasmnet.org/

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Date:    Tue, 1 May 2007 17:54:52 -0700
From:    Steven Du Pre <isaiah40 SONIC.NET>
Subject: NOT, MED, RES: Dr. Malcolm Hooper's articles

Hello,
The 2006 Dr. Hooper article cited in a previous Co-Cure post
 as well as other articles by Dr. Hooper
can be found at this URL:
http://www.name-us.org/DefintionsPages/DefHooper.htm


Steven Du Pre
Poetry website:
http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org

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Date:    Wed, 2 May 2007 12:04:08 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Benefits of physical training in fibromyalgia and related syndromes

Benefits of physical training in fibromyalgia and related syndromes.

Ann Readapt Med Phys. 2007 Apr 13; [Epub ahead of print]

Maquet D, Demoulin C, Croisier JL, Crielaard JM.

Department of Motricity Sciences, University of Liege, ISEPK, B21, allee
des sports 4, 4000 Liege, Belgium; CHU Sart Tilman, Liege, Belgium.

PMID: 17467103


OBJECTIVE: To review the published information on physical training for
fibromyalgia (FM) and related syndromes.

METHODS: A search of Medline literature (via Ovid and PubMed) with the
following keywords: FM, chronic fatigue syndrome, therapy, rehabilitation,
aerobic, exercise, and cognitive behavioral therapy. The reference lists of
articles were examined for additional related articles.

RESULTS: Several studies investigated the benefits of graded exercise
therapy for patients with FM or related syndromes. Although some systematic
reviews have not established an unequivocal benefit of physical training,
most authors report a benefit for patients with chronic pain or fatigue.
Ideally, such a therapy should be a part of multidisciplinary program.
Muscular rehabilitation is reserved for preventing the deconditioning
syndrome often reported in patients and the vicious cycle of pain,
avoidance and inactivity behaviors, or even kinesiophobia, deconditioning,
incapacity and psychological distress.

CONCLUSION: This review emphasizes the relevance of graded physical
training for treating FM and related syndromes. The development of
rehabilitation centers, with experts able to propose a relevant therapy to
patients with chronic pain or fatigue, should help alleviate this public
health problem.

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Date:    Wed, 2 May 2007 12:11:56 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Fatigue in multiple sclerosis: association with  disease-related, behavioural and psychosocial factors.

Fatigue in multiple sclerosis: association with disease-related,
behavioural and psychosocial factors.

Mult Scler. 2007 Apr 27; [Epub ahead of print]

Trojan DA, Arnold DL, Collet JP, Shapiro S, Bar-Or A, Robinson A, Le
Cruguel JP, Ducruet T, Narayanan S, Arcelin K, Wong AN, Tartaglia MC,
Lapierre Y, Caramanos Z, Da Costa D.

Department of Neurology and Neurosurgery, Montreal Neurological Insitute
and Hospital, McGill University Health Centre, McGill University, Montreal,
Quebec, Canada.

PMID: 17468448


We determined biopsychosocial correlates of general, physical, and mental
fatigue in MS patients, by evaluating the additional contribution of
potentially modifiable factors after accounting for non-modifiable
disease-related factors.

Fifty-three ambulatory MS patients, along with 28 normal controls were
recruited for a cross-sectional study. Subjects completed the
Multidimensional Fatigue Inventory (MFI) and Fatigue Severity Scale.
Potential correlates evaluated were: disease-related factors (disease
duration and type, immunomodulating treatment, muscle strength, pain,
forced vital capacity (FVC), respiratory muscle strength, body mass index,
disability, fibromyalgia), behavioural factors (physical activity, sleep
quality) and psychosocial factors (depression, stress, self-efficacy).

Multivariate models were calculated for MFI General, Physical, and Mental
Fatigue. Age-adjusted multivariate models with non-modifiable factors
included the following predictors (P</=0.10) of 1) MFI General and Mental
Fatigue: none; and 2) MFI Physical Fatigue: FVC and disability.

The following potentially modifiable predictors (P</=0.10) made an
additional contribution to the models 1) MFI General Fatigue: sleep
quality, self-efficacy, pain; 2) MFI Physical Fatigue: self-efficacy,
physical activity; and 3) MFI Mental Fatigue: stress, self-efficacy.

Fatigue in MS is multidimensional. Correlates of general and physical
fatigue are disease-related, behavioural and psychosocial factors.
Correlates of mental fatigue are psychosocial factors. Potentially
modifiable factors account for a considerable portion of fatigue.

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

Date:    Wed, 2 May 2007 12:30:15 -0400
From:    Co-Cure Moderator <ray CO-CURE.ORG>
Subject: NOT,MED: Prescribed Medications for Fibromyalgia: By Mark Pellegrino, M.D. - 2007 Update

Mark J. Pellegrino, M.D., is Board Certified in Physical Medicine and
Rehabilitation and Electrodiagnostic Medicine, and is one of the nation's
leading experts on Fibromyalgia. Dr. Pellegrino is the author of numerous
books and articles on Fibromyalgia, and despite having Fibromyalgia, he
maintains an active medical practice with more than 20,000 patients cared
for. He was recently named in "Best Doctors in America." The following
article is an updated excerpt from a chapter of Fibromyalgia, Up Close and
Personal by Mark J. Pellegrino, M.D.

Prescribed medicines are an important part of fibromyalgia treatment.
Presently there are no FDA approved medicines for the treatment of
fibromyalgia. Many studies have been published, however, that show how
numerous prescribed medicines can benefit those with fibromyalgia.
Physicians are able to prescribe these medicines off-label for fibromyalgia
because of these evidence-based studies.

Pain relief, improved sleep, more energy, and better mood are examples of
goals that prescription medicines can help you reach. People with
fibromyalgia tend to be more sensitive to medications and often experience
side effects such as nausea, drowsiness, or lightheadedness. Lower doses of
medicines need to be considered for fibromyalgia. Prescribed medicines can
provide great benefits to many, so it is worthwhile to work together with
the physician to try to find a successful medicine regimen.

Categories of drugs used in the treatment of fibromyalgia can include:
1. Analgesics
2. Anti-inflammatory medicines
3. Antidepressant medicines
4. Muscle relaxants
5. Sleep modifiers
6. Anti-anxiety medicines
7. Other medicines used to treat chronic pain.


Read the complete article at
http://www.immunesupport.com/library/showarticle.cfm?id=3308

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

Date:    Wed, 2 May 2007 16:32:08 -0400
From:    Co-Cure Moderator <ray CO-CURE.ORG>
Subject: NOT,MED: FDA - MedWatch - Antidepressant Medications - FDA Proposes That Manufacturers
Update Product Labeling To Include New Warnings About Suicidal Thinking and Behavior In Young Adults [US]

MedWatch - The FDA Safety Information and Adverse Event Reporting Program

FDA notified healthcare professionals that the Agency proposed that
makers of all antidepressant medications update the existing black box
warning on the prescribing information for their products to include
warnings about the increased risks of suicidal thinking and behavior in
young adults ages 18 to 24 years old during the first one to two months
of treatment. The proposed labeling changes also state that scientific
data did not show this increased risk in adults older than 24 years of
age and that adults 65 years of age and older taking antidepressants
have a decreased risk of suicidality. The proposed updates apply to the
entire category of antidepressants. Individuals currently taking
prescribed antidepressant medications should not stop taking them and
should notify their healthcare professional if they have concerns.
Manufacturers of antidepressant medications will have 30 days to submit
their revised product labeling and revised Medication Guides to FDA for
review. See the FDA press release for the list of products affected by
the proposed antidepressant product labeling changes.

Read the complete MedWatch 2007 Safety summary, including a link to the
FDA Press Release and Antidepressant Information Page regarding this
issue at:
http://www.fda.gov/medwatch/safety/2007/safety07.htm#Antidepressant

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

Date:    Thu, 3 May 2007 09:03:23 -0400
From:    "Jean Harrison <jeanharrison@verizon.net> [via Co-Cure Moderators]
Subject: RES:New Results show brain abnormalities in GWS patients

http://www.eurekalert.org/pub_releases/2007-05/aaon-bso041007.php

BOSTON -- Veterans of the first Gulf War who returned with multiple
health symptom complaints show significant differences in brain
structures from their fellow returnees without high numbers of health
symptoms, according to research that will be presented at the American
Academy of Neurology's 59th Annual Meeting in Boston, April 28 - May
5, 2007.

The study involved 36 veterans of the first Gulf War (1990-1991). Half
of the veterans had a high number (more than five) of symptoms, such
as joint pain, fatigue, forgetfulness, headaches, skin rash, nausea,
and difficulty concentrating. The other half of the veterans had a
lower number (five or fewer) of symptoms.

Researchers found that two areas of the brain involved in thinking and
memory were significantly smaller in the veterans with a high number
of symptoms than in the veterans with fewer symptoms. The overall
cortex was five percent smaller in those with more symptoms, and the
rostral anterior cingulated gyrus was six percent smaller.

Those with more symptoms also did not perform as well on tests of
learning and memory. On one test, those with more symptoms scored 15
percent lower than those with fewer symptoms; the score was 12 percent
lower on another test. The researchers found that the smaller the
brain volume was in those areas, the worse the veterans performed on
the memory tests.

"We don't know the cause of these differences in the veterans' brain
volumes, but the hypothesis is that they are related to exposure to
hazardous substances during the first Gulf War," said study author
Roberta White, PhD, of Boston University School of Public Health.
"Many troops were exposed to hazardous substances such as pesticides,
and other studies have shown that exposures to these substances affect
the central nervous system."

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Date:    Thu, 3 May 2007 13:38:31 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Fibromyalgia -- a challenge for interdisciplinary  management

[Fibromyalgia -- a challenge for interdisciplinary management]
[Article in German]

Wien Med Wochenschr. 2007 Jan;157(1-2):27-33.

Furst G.

Fachbereich Physikalische Medizin, Allgemeines und Orthopadisches
Landeskrankenhaus Stolzalpe, Stolzalpe, Osterreich.
gerhard.fuerst@lkh-stolzalpe.at

PMID: 17471829


Fibromyalgia is a common chronic pain syndrome affecting particularly
middle aged women. The symptomatology is characterized by diffuse
widespread myofascial pain and tenderness on palpation at multiple "tender
points". Additional symptoms are various vegetative and functional
disorders, nonrestorative sleep, depression and anxiety.

Etiology and pathogenesis of fibromyalgia still remain unclear. Current
pathogenetic theories conceptualize a combination of biological and
psychic, social and mental factors. Diagnosis is based on the
characteristic clinical presentation, the presence of multiple tender
points and the exclusion of certain disorders with similar symptoms.
Laboratory examinations and imaging only provide nonconclusive results.
Medication and physical therapies only accomplish some temporary
symptomatic relief (30-50%).

Psychosomatic rehabilitation should not focus on reduction of pain, but
rather on physical reconditioning and development of an active coping
style. In this context psychological interventions, education and
psychotherapy are essential.

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

Date:    Thu, 3 May 2007 13:41:35 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Difficulties with diagnosis of fibromyalgia: case report

[Difficulties with diagnosis of fibromyalgia: case report]
[Article in Polish]

Ann Acad Med Stetin. 2006;52 Suppl 2:105-10.

Atarowska M, Samborski W.

Klinika Fizjoterapii Reumatologii i Rehabilitacji Akademii Medycznej im. K.
Marcinkowskiego ul. 28 Czerwca 1956 roku 135/147, 61-545 Poznan.

PMID: 17471845


PURPOSE: We present a case of a 33-year-old woman with nonspecific systemic
symptoms (fatigue, weakness), widespread pains, sleep disorders, morning
stiffness, accompanied by symptoms from the autonomic nervous system (chest
pain, digestive tract disorders, hyperesthesia of the skin, dizziness,
paresthesia with a feeling of coldness in hands and feet, excessive
sweating, breath problems, palpitations).

The diagnostic process was difficult and it took a long time to establish
the diagnosis partly because of problems in cooperating with this patient.
During several years, the woman was hospitalized at several specialist
departments, underwent many consultations, laboratory tests, and imaging
studies. Finally, fibromyalgia was diagnosed.

CONCLUSIONS: Treatment was implemented with good results improving the
quality of life of this patient.

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

Date:    Fri, 4 May 2007 12:26:09 -0400
From:    "Bernice A. Melsky" <bernicemelsky@VERIZON.NET>
Subject: RES: Projected state-specific increases in self-reported doctor-diagnosed arthritis and arthritis-attributable activity  limitations -- United States, 2005-2030 [US]

Projected state-specific increases in self-reported doctor-diagnosed
arthritis and arthritis-attributable activity limitations -- United States,
2005-2030.

MMWR Morb Mortal Wkly Rep. 2007 May 4;56(17):423-5.

Centers for Disease Control and Prevention (CDC).

PMID: 17476205


Arthritis and other rheumatic conditions (e.g., gout, lupus, and
fibromyalgia) affect approximately 46 million adults in the United States,
resulting in substantial disability and costs of $128 billion annually.
Because U.S. adults are living longer and the number of persons in older
age groups is growing, the number of U.S. adults living with chronic
conditions such as arthritis likely will increase.

The number of U.S. adults with doctor-diagnosed arthritis has been
projected to reach nearly 67 million adults by the year 2030, including 25
million adults who are expected to have arthritis-attributable activity
limitations. This report supplements those estimates by projecting the
number of adults aged >/=18 years in each state who will have
doctor-diagnosed arthritis and arthritis-attributable activity limitations
in 2030.

The results indicate that, among 48 states, the median projected increase
in doctor-diagnosed arthritis from 2005 to 2030 will be 16%; a total of 14
states are projected to have increases of 30% to 87%.

Greater use of existing evidence-based interventions and development of new
interventions aimed at decreasing pain, improving function, and delaying
disability associated with arthritis are needed to reduce the impact of
these projected increases, particularly in those states that will be most
heavily affected.

[Return to top]

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

Date:    Fri, 4 May 2007 12:31:34 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: Fibromyalgia in women with ankylosing spondylitis

Fibromyalgia in women with ankylosing spondylitis.

Rheumatol Int. 2007 May 3; [Epub ahead of print]

Aloush V, Ablin JN, Reitblat T, Caspi D, Elkayam O.

Departments of Rheumatology, Tel Aviv Sourasky Medical Center and the
Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.

PMID: 17476510


Fibromyalgia (FM), pre-dominantly found in women, may accompany other
pre-existing rheumatic diseases. The association between FM and ankylosing
spondylitis (AS) is uncertain. We evaluated FM in women with AS.

Eighteen women with AS were compared with 18 men with AS (controls) for
age, duration of symptoms, time to diagnosis, degree of sacroiliac
involvement, history of peripheral arthritis, patient global assessment,
Health Assessment Questionnaire, Fibromyalgia Impact Questionnaire, level
of diffuse pain, Bath Ankylosing Spondylitis Disease Activity Index
(BASDAI), and Bath Ankylosing Spondylitis Functional Index (BASFI).
Physical examination included the number of tender points and enthesitis
sites, Schober test, distance between occiput and wall, chest expansion,
lateral spinal flexion, and intermalleolar distance. Inflammatory activity
was measured by the erythrocyte sedimentation rate (ESR).

Of all tested parameters, the ones with significant differences between the
groups were time between symptom onset and AS diagnosis (longer for women),
FM incidence and the number of tender points and enthesitis sites (higher
for women), BASDAI (higher in women and correlated with FM and the number
of tender points but not with ESR), and BASFI and BASDAI scores (increased
in FM patients). FM was present in 50% of women with AS and associated with
higher disease activity indices (BASDAI and BASFI) and not related to
severity of physical findings or ESR.

The reliability of well-accepted assessment tools of AS, such as BASDAI and
BASFI, in evaluating AS activity in women may be called into question due
to a confounding effect of FM.

[Return to top]

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

Date:    Fri, 4 May 2007 19:22:15 +0200
From:    Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: not,med: All Party Parliamentary Group on ME (UK)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


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http://www.afme.org.uk/res/img/resources/APPG%20minutes%2022-02-07.pdf



All Party Parliamentary Group on M.E.

Chair: Dr Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Dr Ian Gibson MP
Treasurer: David Amess MP

Minute of the Meeting of the APPG on M.E.
held 1.30pm, Thursday 22 February 2007,
Committee Room 17, House of Commons


PRESENT

Dr Des Turner MP (Chair)
Andrew Stunell MP (Vice Chairman)
Peter Luff MP
Tony Wright MP
Sarah Vero, office of Dr Ian Gibson MP
Andrew Falconer, office of Sir Robert Smith MP
Professor Peter Littlejohns, NICE
Dr Esther Crawley, NICE Guideline Development Group
Fiona Cairns, Action for M.E
Angela Murphy, Action for M.E
Heather Walker, Action for M.E.
Dr Charles Shepherd, ME Association
Tony Britton, ME Association
Adrian Ward, NICE
Colette Marshall, NICE
Sarita Tomber, NICE
Paul Davis, RiME
Richard Crossick, North London ME Group
Hazel Griffiths North London ME Group
Ciaran Farrell, Person with ME
Christine Harrison, BRAME
Criona Wilson, mother of the late Sophia Mirza
Doris Jones, 25% Group
Di Newman, Peterborough ME and CFS Group and Cambs Neuro
Alliance
Clive Page, Father of person with ME
Augustine Ryan, Person with ME
Hubert Berger
Rebecca Anderson
Jo Dubiel, Person with ME
Jill Pigott, Worcestershire ME Group


APOLOGIES

John Baron MP, Betty Williams, MP, Kelvin Hopkins MP, Dr Julian
Lewis MP, Jenny Willott MP, Bill Olner MP, Clive Efford MP, Nadine
Dorries MP, Dr Roger Berry MP, Steve McCabe MP, Jim Hood MP,
Ann Widdecombe MP, John McDonnell MP, Joan Humble MP, David
Lepper MP, Mark Todd MP, James Plaskitt MP, Chris Mullin MP, Tim
Boswell MP, Lembit Opik MP, Ben Wallace MP, Jeremy Wright MP,
Lady Sylvia Hermon MP, John Thurso MP, Peter Bottomley MP,
Cheryl Gillan MP, Hywel Williams MP, Tom Brake MP, Mike Hancock
MP, Fraser Kemp MP, Lord Clement-Jones, Tim Farron MP, Celia
Barlow MP, Tony Wright MP, Ann McKechin MP, Eddie O'Hara MP,
Sandra Gidley MP, Sir Robert Smith MP


1. WELCOME

Dr Turner welcomed people to the meeting. He explained that as
Professor Michael Rawlins, chairman of the National Institute for
Health and Clinical Excellence (NICE), was unable to attend the
meeting to discuss the draft clinical guideline for CFS/ME, NICE was
being represented by Professor Peter Littlejohns, Clinical and Public
Health Director of NICE and Dr Esther Crawley, Consultant
Paediatrian and Guideline Development Group member.

Professor Peter Littlejohns thanked the Group for inviting NICE to
attend. He explained that he had been responsible for clinical
guidelines at NICE since their inception. All NICE guidelines were
produced on the basis of best available evidence and on a process
based on transparency, active consultation and review. He added
that guidance however robust is not set in stone; medical advances
can happen very quickly and NICE aims to make guidance as up to
date as possible. A total of 118 guidelines, including 51 of clinical
guidance, have been produced over the past 18 months. NICE was
the biggest guideline production unit in the world. Any organization
affected by a guideline should be part of the development of that
guideline.

Dr Crawley explained that as well as being on the Guideline
Development Group, she is a paediatrician who sees 150-200
children with CFS/M.E. every year. She said she had been very
struck by the consultation, both the initial questionnaire and the
feedback on the draft guideline.

Dr Turner said that the guideline on CFS/M.E. was unique compared
to guidelines on other illnesses, in that M.E. is a spectrum of
illnesses.

Dr Crawley said that although this had been a cause of controversy
and had made the guidelines difficult to draft, the aim of the
Development Group had been to encourage clinicians to consider a
diagnosis of M.E. at an earlier stage.

Professor Littlejohns said each new guideline has its own
challenges. The initial scoping exercise helped people to focus and
identify limitations on what was possible in the timescale available.

Hugh Berger, father of a person with M.E., asked the NICE
representatives if they agree with the WHO definition of M.E. as a
neurological condition.

Professor Littlejohns and Dr Crawley were unable to answer directly.
Dr Crawley said the issue had come up in the consultation but that it
wasn't part of the scope of the guideline to discuss definitions. Hugh
Berger asked if they considered M.E. a psychiatric condition.
Professor Littlejohns said that although NICE considered definitions,
NICE was not in a position to define conditions. Dr Crawley said she
believed in the biopsychosocial model of the illness, that it can be
genetically inherited but that body and mind are linked. Hugh Berger
said this model is offensive to people with M.E., a physical illness.

Di Newman added the draft guideline is already turning back time for
those GPs who have accepted that M.E. is a physical illness and
that terms like biopsychosocial" are used by insurance companies
which do not want to make payouts to people with M.E.

Dr Charles Shepherd highlighted that people with M.E. suffered
financially, by losing benefits, when the psychosocial model was
used. NICE had to accept the WHO classification of M.E. as a
neurological illness.

Professor Littlejohns said the guidance would be listed on the
neurological section of the NICE website. He said that he was not
qualified and did not feel the APPG was the place for him to discuss
definitions.
Paul Davis said the terminology of the draft guideline was skewed
and based in misinformation. In his opinion the document was
irrelevant and potentially dangerous in that it recommended graded
exercise therapy (GET) and said lack of exercise prolongs the
illness. This is offensive to people with M.E.

Ciaran Farrell later echoed this, saying a guideline which
recommends cognitive behaviour therapy (CBT) and GET as
treatments of first choice was at odds with definitions of and criteria
for M.E., which indicate that exercise makes people with M.E. feel
worse. He also felt that by regarding relapses as set-backs, the draft
guideline implied that the illness was psychological and that people
were choosing not to recover.

Professor Littlejohns said that the guide was a draft and that while
he could not predict the results of the consultation process, he
believed a number of concerns raised had been heard by the
Guideline Development Group.

Dr Crawley said the guideline emphasised that there should be a
choice of treatments and that programmes should be individually
tailored. No-one would be forced into CBT or GET.

Dr Shepherd challenged this: the guideline described CBT and GET
as therapies of first choice. A number of charities had signed a joint
statement which drew on feedback from patients: GET can be
harmful and CBT does not benefit everyone.

Dr Crawley said that the guideline could have been worded better,
adding that the Group had listened to consultees and been informed
by the consultation. Professor Littlejohns confirmed that NICE was
keen to listen to patients as well as clinicians and others involved.

Christine Harrison BRAME read out a statement, raising the specific
problems of the severely affected and their carers and pointing out
that specialist NHS services are under threat due to funding. She
asked who would take responsibility if health professionals follow the
NICE guidelines promoting CBT and GET and patients are
mismanaged, misdiagnosed or experience a serious deterioration in
their health, or even die?

Under the current system, the severely affected are sometimes
taken into care against their will, and forcibly removed from their
home, despite their families protests.

Criona Wilson described the tragic circumstances of her late
daughter, Sophia Mirza, who was treated as mentally ill by doctors
and sectioned before her death. It took an autopsy to prove that her
spinal chord was inflamed. Christine Harrison and Di Newman
confirmed that Sophia was not a solitary case. Christine had been in
contact with a number of parents whose children with M.E. have
been sectioned or lost their children completely in their 20s or 30s.

Dr Turner said that if the NICE guidelines are going to be any use,
they should give some protection to families and individuals affected
by M.E.

Tony Wright MP said that the importance of the NICE guideline was
clear when children and young people were being sectioned and
adults were not getting benefits to which they were entitled. He said
it was wrong that people may be seen either by doctors who do or
do not accept the WHO classification of M.E. as a neurological
illness. He believed that NICE has a duty to protect people from
doctors who do not accept the evidence of families who say their
loved one has a physical condition.

Professor Littlejohns said that changes to the guideline would be
documented. The guideline would form part of national clinical
standards and doctors would be assessed on whether they meet
these standards.

Angela Murphy was disappointed that the guideline had made no
recommendation for further biomedical research.

Dr Crawley said that she was passionate about biomedical research
and that the guideline group had been struck by the lack of
epidemiological and other evidence.

Angela pointed out the difficulties people had experienced with the
consultation process, in terms of accessibility and transparency. For
example, the guideline was too long, there had been problems with
electronic distribution, the information needed to be tailored for
specific audiences and the timeframe for responses was limited for
people with severe fatigue.

Professor Littlejohns said he took these points on board.

Doris Jones echoed earlier points made about the potential dangers
of CBT and GET, quoted evidence for the physicality of the illness
and pointed out that suicide is the third most common cause of
death among people with CFS/M.E. after cancer and heart attack.
CBT/GET cannot resolve serious physical illness, she added.

Dr Shepherd asked whether the guideline would still be implemented
after publication in August if it still did not have the confidence of
patients. Professor Littlejohns said that guidelines were not always
carried forward if they were not seen to be useful to the NHS.

Fiona Cairns asked if the phrase about CBT/GET being the first
treatment of choice would be removed.
While Professor Littlejohns and Dr Crawley could not predict what
the guideline would say, Dr Crawley admitted that the phrase did not
reflect the meaning intended by the guideline group and said she felt
that the comments made by consultees would be taken on board.

Professor Littlejohns was asked whether NICE would consider a
second phase of consultation. He replied, "We have a process
which we try to keep to. Occasionally we do move away from that
process."

The Chair suggested that NICE might wish to take some more time
to consider how best to address some of the issues that had been
raised.

Professor Littlejohns said he would report the point back to the NICE
Executive Committee, as he was not empowered to make that
decision.



2. MINUTES OF THE LAST MEETING / MATTERS ARISING/OTHER
BUSINESS

i. As time was short, Dr Turner suggested that the following items be
carried over to the next meeting:

a. Mental Health Bill
b. APPG Code of Practice

This was agreed.

ii. Cairan Farell asked if Mr Hutton had written to Dr Turner with
details of any contractual penalties to which Atos Origin were
subject. Dr Turner said he would follow up on this and report back to
the next meeting.

iii. Dr Shepherd asked if Dr Ian Gibson had made progress on the
wording of an Early Day Motion (EDM). Dr Gibson's assistant, Sarah
Vero, circulated a draft (attached). Dr Turner said the EDM would
probably be tabled after Easter.

v. Christine Harrison reported that on 15 February, the DWP had
responded to the charities' joint statement on version 9 of DWP
guidance, saying: "we are considering the final version of the
ME/CFS guidance and will look at the level of detail contained
therein. We expect to provide you with a fuller response by the end
of April 2007."

vi. Sarah Vero said that the Gibson Inquiry Group were interested in
seeing if they could get the Standards Agency to look at conflict of
interest eg. on occasions where advisers are representatives from
insurance companies, psychiatrists etc. She asked people to
contact her if they had already looked into this.

vii. Paul Davis asked if Dr Turner could comment on a letter sent by
the leader of the Kent Group. Dr Turner said he would follow up on
this and respond in due course.

viii. Doris Jones asked how best to ensure that representatives from
the MRC, NICE etc would respond positively to invitations to
meetings. Sara Vero suggested that invitations could be made
through the APPG.


3. DATE OF NEXT MEETING
To be confirmed.

The meeting closed shortly after 2.45pm.



Appendix

Dr Ian Gibson's draft EDM

This House recognises Myalgic Encephalomyelitis (ME) as a
serious, long term, debilitating illness, that affects more people in the
UK than HIV/AIDS; welcomes the Group on Scientific Research into
ME's Report 'Inquiry into the status of CFS/M.E. and research into
causes and treatment'; notes the Department of Health classification
of ME as a neurological condition; calls on all government
departments to accept this definition; calls for the implementation of
nationally recognised clinical and research criteria which reflect the
Dept of Health classification, similar to the guidelines used in
Canada; calls for the collation of national epidemiological data of ME
Patients based on this criteria; calls for an independent panel of
medical experts to review the existing international and UK
biomedical evidence relating to ME to identify areas for further
research; calls for massive further research into potential aetiology
and treatments of ME.

[Return to top]

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

Date:    Sat, 5 May 2007 13:04:38 -0400
From:    "Bernice A. Melsky" <bernicemelsky VERIZON.NET>
Subject: RES: The Fibromyalgia Bladder Index

The Fibromyalgia Bladder Index.

Clin Rheumatol. 2007 May 3; [Epub ahead of print]

Brand K, Littlejohn G, Kristjanson L, Wisniewski S, Hassard T.

Faculty of Communications, Health and Science, Edith Cowan University,
Perth, Australia.

PMID: 17476564


The aim of this study was to determine whether an existing outcome measure,
the Interstitial Cystitis Symptom and Problem Index (ICSI/ICPI), is a
valid, reliable, and clinically relevant instrument to assess the sensory
urinary symptoms in women with fibromyalgia syndrome (FM).

Ninety women with American College of Rheumatology 90 FM and who had at
least two sensory bladder symptoms participated in the study. All underwent
urological screening to exclude lower urinary tract pathology. All
participants completed the following: ICSI/ICPI, Fibromyalgia Impact
Questionnaire (FIQ), Medical Outcome Study Short Form 36, King's Health
Questionnaire (KHQ), and Vulval Symptom Assessment Scale. Assessment was
made for internal consistency reliability, test-retest reliability, and
concurrent validity. Factor analysis was used to assess the internal
structure of the scale.

Factor analysis displayed two separate components of symptom and problem
combinations as distinct from the original ICSI/ICPI developed for the
interstitial cystitis population. The eight items of the index configured
differently and formed two subscales of a newly developed Fibromyalgia
Bladder Index. The two subscales of this index include the Bladder Urgency
and Pain Subscale and the Bladder Frequency and Nocturia Subscale. This
index has high internal consistency reliability (Cronbach's alpha
coefficient of 0.81), test-retest reliability showing intraclass
correlation of 0.85, and high concurrent validity through correlations
between the Fibromyalgia Bladder Index and the KHQ (0.735, p = 0.000) and
the FIQ (0.433, p = 0.000).

This more specific configuration of the ICSI/ICPI better reflects FM
bladder symptomatology. The Fibromyalgia Bladder Index is a validated
FM-specific instrument that captures information about the sensory bladder
symptoms and their impact in this fibromyalgia population. This instrument
should allow for better understanding and management of this important
fibromyalgia-associated problem.

[Return to top]

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

Date:    Sat, 5 May 2007 20:08:02 -0700
From:    Steven Du Pre <isaiah40 SONIC.NET>
Subject: NOT, ACT, MED: Media & Public Perception of Chronic Fatigue Syndrome

Hello,
    Countless newspaper & magazines articles continue to appear
using the word "fatigue" or "chronic fatigue" or "chronic fatigue syndrome"
to mean a very transient condition from which one recovers easily.
I say this because a public awareness campaign by CDC with "fatigue"
in the name does not get us back to the serious neuroimmune disease
which we know historically to be Myalgic Encephalomyelitis.
    The construct of "fatiguing illnesses" or "chronic fatigue syndrome"
is a dead-end in regard to a valid perception of a serious neuroimmune
disease, Myalgic Encephalomyelitis/CFS.  And a public awareness campaign
based on a very heterogeneous patient population according to the
CDC criteria cannot rectify this situation.
    Witness this article regarding the "lemonade diet" cleanse
which "helps chronic fatigue."  in today's Sacramento newspaper:
"Ted Damiecki, 55, of Bridgehampton, said he has gone on the
cleanse twice and it has helped his chronic fatigue syndrome."
"I've been all over the East Coast trying to find cures for chronic fatigue
syndrome," he said. "I went on the cleanse and I felt better within four
or five days."
http://dwb.sacbee.com/24hour/healthscience/story/3611991p-12904392c.html


Steven Du Pre
Poetry website: http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org

[Return to top]

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

Date:    Sun, 6 May 2007 17:43:15 +0200
From:    Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: res: ME/CFS -not in the mind but in cell nucleus

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>>       6 May 2007       <<<<
Editorship : j.van.roijen chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

nuclear factor kappa beta is in this electronic version written
as:  NFkB

~jvr

````````````

http://www.michaelmaes.com/


Prof. Dr. M. Maes
Belgium - USA



LATEST NEWS AND UPDATES



April 2007: New publication in press:


CHRONIC FATIGUE SYNDROME: NOT IN THE MIND BUT IN
THE CELL NUCLEUS.


For decades, CFS patients were - and still are - dismissed as
lazybones or hypochondriacs. Since 1994, the baffling illness has
received recognition by the introduction of diagnostic criteria [the
CDC criteria].

Many medical doctors and insurance companies still assert that
CFS is a mental condition. The mainstream treatment for CFS is
cognitive behavioural therapy, which means that patients with CFS
are being treated as having a mental illness with "treatments" that do
not treat any underlying cause.

Doctors who treat CFS patients as suffering from an organic
disorder and scientists who examine the biological causes of CFS
are often considered quacks by their colleagues, insurance
companies and anti-quack societies, which sometimes are even
officially supported by governments (eg the Dutch government) in
their attempts to eliminate the scientific view that CFS is an organic
disorder. The official acceptance of the latter obviously would mean
that the national health care systems are obliged to financially
support those patients who now are considered hypochondriacs
and, therefore, may easily be suspended from the national health
care systems.

There is, however, evidence that CFS is a severe immune disorder
with inflammatory reactions and increased oxidative stress, which
has caused a significant damage to functional lipids and proteins in
the cells.


Maes et al (2007), in a new published study, show that patients with
CFS show very high levels of nuclear factor kappa beta (NFkB) in
their immune cells. NFkB is the major mechanism which - in the cell
- regulates inflammation and oxidative stress. Thus, the increased
production of NFkB in the white blood cells of patients with CFS is
the cause of the inflammation and oxidative stress which reportedly
occurs in CFS.

Maes et al. also report that the high levels of NFkB predict more
severe symptoms, such as aches and pain, muscular tension,
fatigue, irritability, sadness, and the subjective feeling of infection.

Maes and coworkers show that inflammation and oxidative stress
may cause aches and pain, muscular tension, fatigue, and sadness.
Phrased differently, the increased production of NFkB may cause
chronic fatigue and the key symptoms of this illness.

Maes et al. assert that the factors which increase the production of
NFkB are also causes of CFS. Thus, viral infections, bacterial
infections, leaky gut, psychological stress and physical exhaustion
are all able to increase the production of NFkB and are known trigger
factors for CFS. In other words, NFkB functions as a "smoke
sensor" which detects threats to the body such as viral and bacterial
infections, leaky gut, psychological stress and physical exhaustion,
and it acts as a switch to turn inflammation and oxidative stress on
and off in the cell and, consequently, may cause CFS when the
above threats are severe enough or have become chronic.

Finally, the findings of Maes et al. open new vistas in the treatment of
CFS: new drug development in CFS should target NFkB.
Maes et al. Neuroendocrinology Letters, 2007.


````````````````````````````````

April 2007:

We report new results on severe immune dysfunctions in CFS.
There is some evidence that patients with chronic fatigue syndrome
(CFS) suffer from immune abnormalities, such as immune
activation and decreased immune cell responsivity upon polyclonal
stimili.
`
This study was designed to evaluate lymphocyte activation in CFS
by using a CD69 expression assay. CD69 acts as a costimulatory
molecule for T- and natural killer (NK) cell activation.

We collected whole blood from CFS patients, who met CDC criteria,
and healthy volunteers. The blood samples were stimulated with
mitogens during 18 h and the levels of activated T and NK cells
expressing CD69 were measured on a Coulter Epics flow cytometer
using a three color immunofluorescence staining protocol.

The main finding of this study is that the expression of the CD69
activation marker on the T cell and natural killer cell surface of
patients with CFS is significantly lower than in normal volunteers.

The test can be used as an external validating criterion for the
clinical diagnosis of CFS. In particular, the stimulated expression of
the CD69 molecule on the CD45+CD56+ and also on the
CD3+CD8+ T cells yielded a good diagnostic performance (better
than the CD69 expression on the CD3+ and CD3+CD4+ T cells).

Our results are also in agreement with previous reports that the ex
vivo proliferative response of lymphocytes to mitogens is
significantly decreased in CFS.

Another finding of this study is that - in CFS - the stimulated
expression of the CD69 molecule is significantly and negatively
related to signs of inflammation, suggesting that the above defects in
early T cell activation are caused by the inflammation in CFS.

Since induction of CD69 surface expression is dependent on the
activation of the protein kinase C (PKC) activation pathway, it is
suggested that in CFS there is a disorder in the early activation of
the immune system involving PKC.

[Return to top]

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

Date:    Mon, 7 May 2007 14:18:19 -0400
From:    "Bernice A. Melsky" <bernicemelsky@VERIZON.NET>
Subject: RES: The prevalence of fibromyalgia in Japanese workers

The prevalence of fibromyalgia in Japanese workers.

Scand J Rheumatol. 2007 Mar-Apr;36(2):140-4.

Toda K.

Department of Rehabilitation, Hiroshima Prefectural Rehabilitation Centre.
Hiroshima, Japan.

PMID: 17476621


Objective: To estimate the point prevalence of fibromyalgia (FM) among
hospital workers and to make a list of the reported FM prevalence using the
classification criteria of the American College of Rheumatology (ACR) for FM.

Methods: Three hundred and forty-three females and 196 males were surveyed
using the 1990 ACR classification criteria of FM. The subjects were staff
workers and non-staff workers (such as floor sweepers and personnel of
pharmaceutical companies) who worked in medical institutions.

Results: One hundred and six of the 343 females (30.9%) and 34 of the 196
males (17.3%) had complained of widespread pain for at least 3 months. All
subjects who had complained of widespread pain for at least 3 months were
examined by one experienced physician. Seven of the 343 females (2.04%) and
one of the 196 males (0.51%) met the ACR criteria for FM. All of these
eight subjects had seen a physician after the occurrence of widespread
pain. Four of the eight subjects with FM had seen a physician in the past
year. Only one subject had been diagnosed with FM before this study.

Conclusion: The advantage of this study was the extremely low dropout rate.
FM is a common musculoskeletal disorder among Japanese adult workers,
especially among female workers.

[Return to top]

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

Date:    Mon, 7 May 2007 21:29:32 +0200
From:    Jan van Roijen <j.van.roijen CHELLO.NL>
Subject: act,med: Make September Polio Awareness Month

~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>>       7 May 2007       <<<<
Editorship : j.van.roijen chello.nl
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~


Margaret Williams writes:


OVERLAP OF ME/CFS WITH POST POLIO SYNDROME

Prestigious papers, for example, Annals of the New York
Academy of Sciences 1995 (containing 50 papers on clinical
neurology, neuroscience, electrophysiology, brain imaging,
histology, virology, immunology, epidemiology, with contributors
from the US, Australia, Canada, France, Sweden and the UK)
point out the similarities between post-polio syndrome and
ME/CFS, notably that the mechanism of the extreme fatigue
(called "visceral exhaustion") --is exactly the same in ME/CFS as
in PPS.


In the Journal of IiME-Volume1-Issue1
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf


~jvr


``````````````````````

From: Bruno, Dr. Richard L. <Richard.Bruno@ehmc.com>


Make September Polio Awareness Month...


International Post-Polio Task Force

at Englewood Hospital and Medical Center
Englewood, New Jersey USA  07631
201-894-3724   877-POSTPOLIO
postpolioinfo@aol.com
PostPolioInfo.com/PostPolio



As you know, Congress has proclaimed 2007 the
"YEAR OF POLIO AWARENESS."


I am writing to ask you to help polio survivors and all children by
having September 2007 proclaimed POLIO AWARENESS
MONTH.

There are two areas about which everyone needs to be aware:

Polio Vaccination Awareness:

In the past two years, polio has been reported in five
unvaccinated Minnesota children and in one unvaccinated
Arizona adult.  Unfortunately, the polio vaccine has been a victim
of its own success, allowing parents to think that polio is "cured"
and vaccination unnecessary.  It is feared that the recent US
polio cases are canaries in the mineshaft.  The CDC reports that
10% of US toddlers under 3 years old  -- one million children --
are not vaccinated against polio, with vaccination lowest in poor
cities.

The appearance of polio in the U.S. again is especially
frightening since polio has broken free of international
vaccination efforts, with cases increasing in 2007 in India, Africa
and appearing in previously polio-free countries, such as
Namibia.  Even more frightening, not everyone infected with the
poliovirus exhibits symptoms. For every case of paralytic polio,
there are between 70 and 200 "silent carriers" of the poliovirus.
What will happen when a polio-infected individual from a foreign
country lands in a densely populated city like New York, where
an estimated 23,000 toddlers are unvaccinated?  Every child
must be vaccinated since America's next polio epidemic could
be just a plane ride away.

Even more disturbing, 19 states now offer not just religious
exemptions, but "philosophical exemptions," to vaccination.
Arkansas' recent passage of legislation allowing "philosophical
exemptions" was followed by a 26% drop in vaccinations.
States should not allow "philosophical exemptions" to polio
vaccination at the same time polio has broken free of
international vaccination efforts.


Post-Polio Sequelae Awareness:
In taking about polio vaccination, it should not be forgotten, as it
was 50 years ago, that there are still nearly two million North
Americans alive today who had polio during the epidemics of
the 1940's, 50's and early 60's.   At least 70 percent of paralytic
polio survivors and 40 percent of nonparalytic polio survivors are
developing Post-Polio Sequelae, unexpected and often
disabling symptoms that occur about 35 years after the
poliovirus attack, including overwhelming fatigue, muscle
weakness, muscle and joint pain, sleep disorders, heightened
sensitivity to anesthesia, cold and pain, and difficulty swallowing
and breathing.

Unfortunately, polio survivors and health professionals are not
aware that PPS exist and are readily treated by reducing
physical overexertion, "conserving to preserve" polio survivors'
remaining poliovirus-damaged neurons, and not by exercising
and the "use it or lose it" treatment polio survivors received 50
years ago.  Polio survivors and health professionals need to be
aware of the cause and treatment of PPS.

Please go to: PostPolioInfo.com/PostPolio, click on
GOVERNORS LIST and call your governor's office.  Ask for the
person in charge of proclamations and please FAX that person
a copy of the letter below (also posted our web site) with your
signature, asking your governor to proclaim September 2007
Polio Awareness Month, as polio survivors in Montana have
already done.

Please let me know if your governor signs a proclamation.

As always, I appreciate your help and our working together to
make Polio Awareness Month a reality.

Yours truly,



Dr. Richard L. Bruno
Chairperson, International Post-Polio Task Force
and
Director, The Post-Polio Institute
and
International Centre for Post-Polio Education and Research
Englewood Hospital and Medical Center


``````````````````````````



Dear Governor:



Congress has proclaimed 2007 the "YEAR OF POLIO
AWARENESS."  I ask that you proclaimed September 2007
POLIO AWARENESS MONTH.


Polio Vaccination Awareness: In the past two years, polio has
been reported in five unvaccinated Minnesota children and in
one unvaccinated Arizona adult.  Unfortunately, the polio vaccine
has been a victim of its own success in the US, allowing
Americans to think that polio is "cured" and that vaccination
unnecessary.  These US polio cases may be canaries in the
mineshaft.  The Centers for Disease Control reports that
<I>10%<I> of US toddlers under 3 years old  -- <I>one million
children<I> -- are not vaccinated against polio, with vaccination
lowest in poor areas.

The appearance of polio in the U.S. is especially frightening
since polio has broken free of international vaccination efforts,
with cases increasing in 2007 in India and Africa.  Equally
frightening, not everyone infected with poliovirus shows
symptoms. For every case of paralytic polio, there are between
70 and 200 "silent poliovirus carriers."  What will happen when a
polio-infected individual from a foreign country lands in a densely
populated city like New York, where an estimated 23,000
toddlers are unvaccinated?  Every child must be vaccinated
since America's next polio epidemic could be just a plane ride
away.

Post-Polio Sequelae Awareness:  In promoting about polio
vaccination, it should not be forgotten, as it was 50 years ago,
that there are still nearly two million North Americans alive today
who had polio during the epidemics of the 1940's, 50's and early
60's.   At least 70 percent of paralytic polio survivors and 40
percent of nonparalytic polio survivors are developing Post-Polio
Sequelae, unexpected and often disabling symptoms that occur
about 35 years after the poliovirus attack, including
overwhelming fatigue, muscle weakness, muscle and joint pain,
sleep disorders, heightened sensitivity to anesthesia, cold and
pain, and difficulty swallowing and breathing

Unfortunately, polio survivors and health professionals are not
aware that PPS exist and are readily treated by reducing
physical overexertion and "conserving to preserve" polio
survivors' remaining poliovirus-damaged neurons, and not by
exercising and the "use it or lose it" treatment polio survivors
received 50 years ago.  Polio survivors and health professionals
need to be aware of the cause and treatment of PPS.

On behalf of our state's thousands of polio survivors and all of
our children, I ask that you proclaimed September 2007 POLIO
AWARENESS MONTH.


Yours truly,



NAME
CITY, STATE


[Return to top]

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

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