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Co-Cure Weekly Digest of research and medical posts only - 1 Jan 2007 to 8 Jan 2007

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Date:    Tue, 2 Jan 2007 05:39:25 -0500
From:    "Bernice A. Melsky" <bernicemelsky@XXXXX.XXX>
Subject: RES: Problems and Solutions in Health Care for Chronic  Diseases. A Qualitative Study With Patients and Doctors

[Problems and Solutions in Health Care for Chronic Diseases. A Qualitative
Study With Patients and Doctors.]
[Article in Spanish]

Aten Primaria. 2006 Nov 30;38(9):483-489.

Ruiz Moral R, Rodriguez Salvador J, Perula L, Fernandez I, Martinez J,
Fernandez MJ, Yun A, Arbonies JC, Cabanas MA, Luque L, Mont MA.

Comite Cientifico y Responsable del <<Maraton de debates con pacientes>>
del XXIV Congreso semFYC.

PMID: 17194351


BACKGROUND. Chronic diseases represent a challenge for health systems and
the professionals most involved in chronic care. Despite biomedical
advances, the results of care for chronic problems are not as good as they
should be.

OBJECTIVE. To find out what doctors and patients think of care for some of
the main chronic illnesses; to detect concrete areas of deficit and lack of
satisfaction felt by both sides and possible lines of improvement; to raise
mutual understanding between patients and doctors.

PARTICIPANTS. Forty-one patients with fibromyalgia or diabetes mellitus,
carers for people with Alzheimer's and breast cancer patients. Forty-three
family doctors involved in health care delivery to this kind of patient.
METHODS. Four discussion groups. Transcription and syntactical, semantic
and pragmatic contents analysis, with both pre-established and emerging
categories of consensus.

RESULTS. Patients thought, with different nuances as a function of the
problem put forward, that questions of respectful, human and integrated
care, clear and suitable information, and consistent follow-up were
important and insufficiently covered by doctors and health services.
Doctors thought that many of their efforts in caring for these patients
were useless, and thought it important to reconsider their clinical
responsibilities and the patient-doctor relationship. Doctors highlighted
the limitations in the health care resources available for working with
these patients.

CONCLUSIONS. To tackle prevalent chronic problems requires, in the view of
doctors and patients, important modifications that are related mainly to
the kind of relationship between the two, with new clinical
responsibilities and certain organisational care delivery features.

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Date:    Tue, 2 Jan 2007 22:33:54 +0100
From:    "Dr. Marc-Alexander Fluks" <fluks@XXX.XX>
Subject: RES,NOT,URL: ICD9, version 2007 online

ICD9, version 2007,
  
  
  
  
  
  
  
   http://www.icd9data.com
CFS,
  
  
  
  
  
  
  
   http://www.icd9data.com/2007/Volume1/780-799/780-789/780/780.71.htm
FM,
  
  
  
  
  
  
  
   http://www.icd9data.com/2007/Volume1/710-739/725-729/729/729.1.htm

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Date:    Fri, 5 Jan 2007 12:01:34 -0500
From:    "Stephanie Barr <sbarr@XXXXX.XXX> via Co-Cure Moderators"
Subject: RES: Fibromyalgia: Show Me Where it hurts  - New Study Links Fibromyalgia to Reduced Brain Dopamine

FOR IMMEDIATE RELEASE
4 January 2007
"Fibromyalgia:  Show Me Where It Hurts"
New Study Links Fibromyalgia to Reduced Brain Dopamine

ORANGE, Calif---- 4 January 2007----  The National Fibromyalgia Association
today announced that a new study published in the January issue of The
Journal of Pain provides new scientific evidence demonstrating for the
first time that there is a fundamental difference between the brains of
fibromyalgia patients and healthy individuals not afflicted with the disorder.

The study's lead author, Dr. Patrick Wood, is a nationally recognized
researcher and authority on the cause and treatment of fibromyalgia.  This
groundbreaking study supports Dr Wood's "Dopamine Theory of Fibromyalgia,"
which proposes  that people with fibromyalgia produce less dopaminea
natural chemical in the body that functions as a neurotransmitter in the
very areas of the brain where dopamine is needed to process painful bodily
sensations.

The reduction in the activity of dopamine neurons, believed to result from
a combination of environmental factors, including chronic stress, as well
as genetic factors, serves as the strongest evidence yet that
dopamine-related issues may be the root cause of fibromyalgia.

"This study provides a whole new perspective on the pathology of
fibromyalgia symptoms," says Wood.

STUDY
The research study used positron emission tomography (PET) to compare the
capacity of fibromyalgia patients to synthesize brain dopamine in
comparison with healthy controls.   A total of seven female fibromyalgia
patients and eight healthy controls were recruited for the study at
Louisiana State University Health Sciences Center, where Dr. Wood serves as
assistant professor and directs both the Fibromyalgia Research Program and
the Fibromyalgia Care Clinic.  The results of the study demonstrate that
patients with fibromyalgia have significantly reduced dopamine synthesis in
multiple brain regions.

"It's all in your head!"
For years, people with fibromyalgia have been told that their illness and
symptoms were imaginary, or "all in their heads!" Indeed, fibromyalgia has
divided the medical community on the subject of its legitimacy due in large
part to the lack of a known cause or genetic markers,.

According to the National Fibromyalgia Association, an estimated 10 million
Americans are affected by the disorder.  Genetic factors and exposure to
chronic stress have been increasingly suspected as key factors associated
with fibromyalgia. Treatment typically focuses on addressing fibromyalgia
symptoms, which include widespread pain, fatigue and sleep disturbance.


"One of the reasons fibromyalgia is considered so controversial is because
we simply don't know the cause," explained Dr. Wood. "Our treatment of the
symptoms has been sort of a 'shot in the dark' because we don't really
understand what it is we are treating." However, based in the results of
this study, there is reason to bring more emphasis on those treatments that
may affect brain dopamine activity.   "In effect," Wood said, "we may begin
to treat the source of the disorder, and not just its symptoms."

"Fibromyalgia:  Show Me Where It Hurts"
Dr. Wood's research involving the Dopamine Theory of Fibromyalgia is
featured in a recently released film entitled "Fibromyalgia:  Show Me Where
It Hurts," which premiered at the National Fibromyalgia Association's 2006
National Patient Conference in March.

A trailer of the film can be viewed on the National Fibromyalgia
Association's website: www.FMaware.org.

In light of the latest results and the small initial sample size, Dr. Wood
and the National Fibromyalgia Association (NFA) are urging further studies
to determine the extent to which the lack of dopamine might be associated
with the pain and other symptoms that characterize fibromyalgia.
"Further research on Dr. Wood's Dopamine Theory could help answer questions
that could directly benefit people with fibromyalgia,"  said Lynne
Matallana, founder and president of the National Fibromyalgia Association,
the largest nonprofit association serving people with fibromyalgia and
other chronic pain illnesses. Matallana, who was diagnosed with
fibromyalgia in 1995, appears in "Fibromyalgia: Show Me Where It Hurts."
For the complete text of the study, visit:
http://journals.elsevierhealth.com/periodicals/yjpai/current
ABOUT THE NFA:
The National Fibromyalgia Association is a non-profit 501(c)(3)
organization whose mission is to develop and execute programs dedicated to
improving the quality of life for people with fibromyalgia by increasing
the awareness of the public, media, government and medical communities. The
NFA publishes a quarterly magazine, Fibromyalgia AWARE and hosts an
award-winning website at www.FMaware.org.
---#----
Media Contact:
Corin Walson (714) 921-8850
Email: 
cwalson@xxxxx.xxx

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Date:    Sun, 7 Jan 2007 15:44:28 -0800
From:    "Suzy Chapman..................via Co-Cure moderators"
Subject: RES, ACT: ME, MSPB and the under 5s: The "Gibson Report" [UK]

>From Suzy Chapman

me.agenda@xxxxx.xxx

May be reposted

The Gibson Report: ME, MSPB and the under 5s

On 27 November, I wrote to Dr Nigel Speight, consultant paediatrician and
expert in childhood ME, with my concerns for the meaning and implications of
the following section of the "Gibson Report".  Dr Speight also acts as medical
adviser to a number of national ME organisations and gave oral
evidence as a Witness at the Gibson Inquiry Oral Hearing 4.

http://www.erythos.com/gibsonenquiry/Report.html

Extract from the Gibson Inquiry Report

2.4 ME in Teenagers and Children

We included this section because it was previously thought that children could
not have CFS/ME. The Group received numerous submissions from parents whose
children had or were suspected to have CFS/ME. It has been thought that
children could not suffer from CFS/ME but the Group accepts that CFS/ME is
prevalent amongst teenagers and possibly in children. However it is very
unlikely to occur in infants and young children and so should not be confused
with Munchausen by proxy for example.


On 29 November, I received a response from Dr Speight:

Dr Speight agreed that I had cause for concern.  In his email, he told me that
the Gibson Group could have said that they had received medical evidence that
ME occurs in children and young people.  He went on to say that if the Group
had referred back to him he could have confirmed that he has seen it in the
under 5 age group and that disbelief about this had itself left children at
risk of being diagnosed as MSBP.  His youngest case, he told me, probably had
its onset at 6 months of age.

The October 2006 edition of ME Association's magazine, ME Essential, carried
an article on Page 5 called "Caitlin's Story", written by the little girl's
mum, Laura Ballard.  Caitlin is three and has been ill since she was eighteen
months old.

The two children's charities AYME and The Young ME Sufferers Trust both have
young members.  Dr Betty Dowsett and Jane Colby also hold statistics on
childhood ME.

The remit of the Gibson Group did not include evaluating whether and at what
age ME occurred in children.

The statements made in this section are highly ambiguous and highly
contentious and require reconsideration, as AfME and others have rightly
recognised.*  Dr Gibson and his committee should be prepared to acknowledge
this.

The "clarification" proffered by Dr Gibson concerning age related prevalence
of ME in childhood or perceived age related incidence of MSPB (FII) in
families has served only to confirm Dr Gibson's inability to recognise that in
making these pronouncements in the first place, his committee has
dangerously exceeded its brief.

Furthermore, it is disturbing that his committee should seek to legitimise the
construct of MSPB (FII) which has never been proven as a discrete syndrome nor
considered to be a "safe" scientific theory and offer, in defence of their
assertions, unsupported statements such as "[MSPB] only exists in children
less than 5 or infants".  Ironically, Dr Richard Taylor, a member of the
Gibson Group, is also a member of the MSPB Group championing the cause of
families suffering accusations of alleged MSPB.


This is Dr Gibson's clarification of statements made in Section 2.4:  ME in
Teenagers and Children:

"The Group believes Munchausen Syndrome or FII does exist and is a serious
problem for paediatricians.  However, it only exists in children less than 5
or infants, whilst according to the evidence we received ME only occurs in
children over 5.  Therefore they should not be confused. We intended to
express our concern and sympathy to parents of older children who had been
mislabelled as Munchausen. We do believe that older children and teenagers get
ME and it should not be mislabelled Munchausen."


[The correct terminology for the construct now known as "FII" is "Munchausen's
Syndrome by Proxy" or "MSPB" not "Munchausen Syndrome" as Dr Gibson has
stated, which is a different construct.]

No references were supplied in the "Gibson Report" in relation to any of the
statements made in Section 2.4 ME in Teenagers and Children or in relation to
the statistic quoted by Dr Gibson in his clarification above.

Since Dr Gibson gives no source of reference for his statement that "[MSPB]
only exists in children less than 5 or infants" we have no means of knowing on
what basis he makes this claim.  Is this a personal belief held by Dr Gibson
or by the Gibson committee or has this statistic been taken from a
research study or review of studies?  Will Dr Gibson be willing to confirm the
source of this statistic?

To summarise what Dr Gibson has stated:

That the Gibson Group:

Believes MSpB (FII) exists.
Believes MSpB (FII) is a serious problem for paediatricians.
Accepts that ME exists in teenagers.
Considers that ME only "possibly" exists in children.
Believes that according to the evidence they reviewed ME only occurs in
children over 5 (no citations supplied).
Believes that MSpB (FII) only exists in children under 5 or infants (no
citations supplied).

So according to the Gibson Group:

1] A child under 5 should not be diagnosed with ME.

[Thus leaving the family at risk of false accusation of MSPB (FII).]

According to the Gibson Group:

2] A child over 5 cannot be diagnosed with MSPB (FII) since Dr Gibson claims
that MSPB only exists in children under 5 or infants.

Ipso facto, according to the Gibson Group, it should not be possible to
confuse the two.

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

*In their public response to the Gibson Report, AfME commented:

"The Group accepts that CFS/M.E. is prevalent amongst teenagers and possibly
in children but says, "it is very unlikely to occur in infants and young
children" and that it "should not be confused with Munchausen by proxy for
example."  Action for M.E. feels that this statement is unhelpful and contrary
to the Group's apparent acceptance of the biological basis of the illness,
lack of epidemiological data, understanding of the need for accurate
diagnostic tests and commitment to the need for further research. We ask the
Group to reconsider this statement."

Dr Gibson is on record as having said that the Gibson Inquiry is not out for
consultation/amendment.

Suzy Chapman

me.agenda@xxxxx.xxx

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Date:    Mon, 8 Jan 2007 09:52:14 +0100
From:    "Dr. Marc-Alexander Fluks" <fluks@xxx.xx>
Subject: RES,NOT,URL: CFS Quackery web page updated

Today, the ME-NET 'CFS quackery' page has been updated.
Surf to,
   
   
   
   
   
   
   
    http://www.me-net.dds.nl/meweb/web4.10.html

--> This is *the* Google #1 page on quack journals !
   
   
   
   
   
   
   
    http://www.google.com/search?btnI&q=%22quack+journals%22

Some info on Hindi/Sanskrit terminology relating to Ayurveda and CFS has
been added (did you know that CFS is called 'bala kshaya' in Hindi ?),
   
   
   
   
   
   
   
    http://www.me-net.dds.nl/meweb/web4.10.html#ayurveda
and the link between Ayurveda and Orthomolecular Psychiatry has been
stressed,
   
   
   
   
   
   
   
    http://www.me-net.dds.nl/meweb/web4.10.html#orthomolecular_psychiatry
You will now understand *why* CFS quacks are also working in 'the field'
of anti-aging.

The ICD-9 link between CFS-skepticism and 'FD' is also present,
   
   
   
   
   
   
   
    http://www.me-net.dds.nl/meweb/web4.10.html#fd
this explains the views of people like Elaine Showalter and Edward Shorter.

These things are *very important* because they caused so many problems
to the CFS community...

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Date:    Mon, 8 Jan 2007 15:03:37 +0100
From:    "Dr. Marc-Alexander Fluks" <fluks@xxx.xx>
Subject: RES,NOT: Drugs nearing approval for FM

Source: Reuters
Date:   January 8, 2007
Author: Lewis Krauskopf
URL:    http://www.boston.com/news/nation/articles/2007/01/07/drugs_nearing_approval_for_mysterious_pain_condition/?p1=MEWell_Pos5


Drugs nearing approval for mysterious pain condition
----------------------------------------------------

NEW YORK (Reuters) - Not all doctors are sure about the pain and fatigue
condition known as fibromyalgia, but drug companies are racing to win U.S.
regulatory approval to serve this potentially lucrative market.

The sometimes-debilitating disorder afflicts an estimated 2 percent to 4 percent
of Americans, mainly women. But diagnosing fibromyalgia is not easy because its
cause remains unknown and its symptoms, which also include depression, can
overlap with other conditions.

With no test to confirm fibromyalgia, doctors rely on patient complaints of
symptoms and subjective responses to physical exams. As a result, some
physicians are wary of viewing it as a distinct ailment.

Still, a who's who of pharmaceutical companies - including Pfizer Inc., Eli
Lilly & Co., Forest Laboratories Inc. and Wyeth - are looking to seize on a
market now dominated by older anti-depressants as well as painkillers and other
drugs.

"What they're thinking is: This has a huge, untapped, unmet need," said Maria
Marzilli, an associate analyst with market research firm Decision Resources.
Decision Resources expects sales for drugs used for fibromyalgia to roughly
triple to at least $1 billion by 2014.

The companies are vying for the first clearance by the U.S. Food and Drug
Administration for a fibromyalgia treatment, which could occur as soon as 2008.

Doctors can prescribe medicines for fibromyalgia even though the drugs are not
cleared specifically for it. However, without FDA approval, companies cannot
promote the drugs as treatments for that condition.

Therefore, even though doctors already may be prescribing Pfizer's Lyrica and
Lilly's Cymbalta for fibromyalgia, positive clinical data and U.S. regulatory
approval for that use could jump-start sales. "This is a nice way to tack on
$200 to $300 million more in sales," Marzilli said.


Validation

An FDA approval could also quell doubts about the disorder's legitimacy, while
paving the way for companies to promote medicines specifically for fibromyalgia.
To be sure, doctors and consumers will hear more about the condition as the drug
makers rev up their powerful marketing engines, possibly sparking more
widespread diagnosis.

"If the FDA approved a drug for fibromyalgia, that would really give the field
validity," said Richard Harris, a molecular biologist and research investigator
at the University of Michigan who recently published a data review of
fibromyalgia.

In most cases, the companies are conducting clinical trials in fibromyalgia for
drugs already approved for other conditions. Lilly, Forest and Wyeth have said
they are testing anti-depressants that regulate two brain transmitters,
serotonin and norepinephrine. Pfizer is testing a drug cleared for epileptic
seizures and neuropathic pain.

As classified by the American College of Rheumatology in 1990, a fibromyalgia
diagnosis involves a patient feeling muscle tenderness in at least 11 of 18
predetermined sites on the body, with the pain spread throughout the body.

Fibromyalgia patients also tend to tire easily, struggle to sleep and have
trouble remembering things, a problem referred to as "fibro fog." But patients
often receive other diagnoses before their doctors decide they have fibromyalgia.

Lynne Matallana, founder and president of the Orange, California-based National
Fibromyalgia Association, was an advertising executive and avid skier and
bicyclist in the early 1990s until she began experiencing widespread pain and
fatigue that left her bedridden.

She said she had seen 37 doctors and received diagnoses of lupus, rheumatoid
arthritis and depression before a physician finally identified her condition as
fibromyalgia. "It's devastating because it is totally life-altering, and many,
many, many people find themselves in this situation," Matallana said. She added
that she gradually improved through exercise, meditation and medication.


Review Results
--------------

In their review, Harris and a colleague at the University of Michigan reported
evidence of increased neurological responses to pain, indicating that the
central nervous system of a fibromyalgia patient processes pain differently.

Traumatic events - such as a car accident - may trigger the condition. Matallana
said her fibromyalgia flared up after she underwent surgery for another ailment.
"I think that some physicians do believe that fibromyalgia isn't a real
condition, and our job to spread the word that there are objective findings that
these people are in pain," Harris said.

But Dr. Scott Zashin, a rheumatologist in private practice in Dallas, says
fibromyalgia is one of the more common conditions he sees. Zashin says he
usually tries to get fibromyalgia patients to exercise more or get more rest
before turning to medication. "These patients seem to have an increased
sensitivity to pain," Zashin said. "Something in their makeup makes them
experience pain differently."

--------
(c) 2007 Reuters

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End of CO-CURE Medical & Research Posts Only Digest - 1 Jan 2007 to 8 Jan 2007

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