CO-CURE Medical & Research Posts Only Digest - 2 Dec 2006 to 4 Dec 2006 (#2006-55)

There are 3 messages totalling 379 lines in this issue.

Topics of the week:

1. RES: Hepatitis C virus-associated extra-hepatic manifestations, what remains?

2. RES: Fibromyalgia Syndrome, Idiopathic Widespread Persistent Pain or Syndrome of Myalgic Encephalomyelopathy (SME): What Is Its Nature?

3. act,med: The invisible sufferers of ME

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Date:    Sat, 2 Dec 2006 13:31:41 -0500
From:    Fred Springfield <fredspringfield@xxxxx.xxx>
Subject: RES: Hepatitis C virus-associated extra-hepatic  manifestations, what remains?

[Hepatitis C virus-associated extra-hepatic manifestations, what remains?]
[Article in French]

Journal: Rev Med Interne. 2006 Nov 7; [Epub ahead of print]

Authors: Sene D, Saadoun D, Limal N, Piette JC, Cacoub P.

Affiliation: Service de medecine interne, hopital de la Pitie-Salpetriere,
91, boulevard de l'Hopital, 75651 Paris cedex 13, France.

NLM Citation: PMID: 17137683


INTRODUCTION: Since the discovery of the hepatitis C virus, many
manifestations, so called extra-hepatic manifestations (EHM), are largely
reported with more or less relationship proofs.

ACTUALITIES AND MAIN POINTS: This article proposes a review of the main
extra-hepatic manifestations associated with the Hepatis C Virus infection
and which remain a topical subject, more than fifteen years after the
discovery of this virus. Mixed cryoglobulin and its vasculitic
manifestations are still one of the more frequent Hepatis C Virus
associated-extra-hepatic manifestations. Its management may be critically
changed due to the increasing use of anti-CD20 therapy. Among other
HCV-EHM, the following extra-hepatic manifestations are still of interest:
the chronic fatigue syndrome, the sicca syndrome, the non-insulin-dependent
diabetes mellitus, malignant B cell proliferations, mainly the Hepatis C
Virus-related splenic lymphoma with villous lymphocytes and the production
of auto-antibodies.

PERSPECTIVES AND PROJECTS: The mechanisms underlying these HCV-associated
EHM are ill-elucidated and still remain of great interest as proved by
current studies. The use of anti-CD20 antibodies in the treatment of
cryoglobulinemic vasculitis is also under investigation.

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Date:    Sat, 2 Dec 2006 13:34:10 -0500
From:    "Bernice A. Melsky" <bernicemelsky@xxxxx.xxx>
Subject: RES: Fibromyalgia Syndrome, Idiopathic Widespread Persistent  Pain or Syndrome of Myalgic Encephalomyelopathy (SME): What Is Its  Nature?

[Note: Despite the obvious age of this article, it has just now
made it into Medline's database.]


Fibromyalgia Syndrome, Idiopathic Widespread Persistent Pain or Syndrome of
Myalgic Encephalomyelopathy (SME): What Is Its Nature?

Pain Pract. 2002 Mar;2(1):35-46.

Mehendale AW, Goldman MP.

Neurobiology Research Unit, Phoenix Medical Associates, Kerrville, Texas.

PMID: 17134468


Context: Fibromyalgia is a disorder that is appearing more and more in the
clinical practice but is poorly understood.

Objective: This paper attempts to look at all available and reliable data
on these conditions and will outline current, scientifically sound
understanding of these disorders, treatment modalities and future
directions for research. It also attempts to analyze the social and
cultural implications.

Data Sources/Study Selection: Various terms used to describe these
syndromes are fibromyalgia (FMS), and myalgic encephalomyelitis (ME).
PubMed search was performed. Pertinent articles published in past 25 years
and The National Academy of Sciences colloquium on Neurobiology of Pain was
also reviewed. In addition, news-articles in the lay press as well as the
Internet were monitored for material posted by sufferers of these disorders.

Data Extraction: Studies were reviewed for clinical presentations, history
of these disorders, comorbid conditions, etiology, biochemical and
microbiologic abnormalities, abnormalities found on neuroimaging and
functional neurophysiologic techniques. In addition patient postings on the
Internet and articles appearing in lay press were reviewed and social
implications are discussed.

Data Synthesis: Upon analysis of these materials the review was organized
based on the quality of data and it's contextual scientific, cultural and
political meaning for this disorder. This review appears to be pointing
towards an entirely new paradigm in pain disorders; therefore, a hypothesis
and future direction of research is repeatedly suggested.

Conclusion: This study proposes an entirely new paradigm in these disorders
based on scientific and cultural data.

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Date:    Mon, 4 Dec 2006 15:27:16 +0100
From:    Jan van Roijen <j.van.roijen@xxxxx.xx>
Subject: act,med: The invisible sufferers of ME

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


Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
       >>>> Help ME Circle  <<<<
 >>>> 4 December 2006    <<<<
Editorship : j.van.roijen@xxxxx.xx
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

Thanks to "Merge" <MERUK@xxxxx.xx.xx>


http://www.theherald.co.uk/news/75851-print.shtml


The Herald



The invisible sufferers of ME
~~~~~~~~~~~~~~~~~~~~~~~


ALISON CHIESA December 04 2006


Focus


Awakening to the sharp winter sunshine of December 6, 1986, a
young university student believed she had a future filled with
potential. Apart from a touch of flu, Ciara MacLaverty, at just 18,
was confident in her ability to realise her dreams. Perhaps she
would become a writer, taking after her father, Bernard, the Irish
author who moved to Scotland in 1975 and has since held
university posts in Aberdeen and Glasgow.

If not a writer, maybe a teacher, a psychologist, or a dancer. She
would then marry, she thought, and have three children.

Time passed and the intervening years brought changing
governments, scientific discoveries, and medical breakthroughs.
But Ciara never recovered from "the flu". Today, at 38, she has
yet to make any of her dreams a reality. Although unaware of its
grim significance at the time, that date in December marked the
start of a war with Myalgic Encephalomyelitis - a continuing
struggle that has left Ciara largely bed-bound for two decades.

"I'd never even heard of ME before then," she said, as she lay on
the sofa of her home in the west end of Glasgow, "But it has
robbed me of what I could have been." As the inauspicious
anniversary approaches, the decision to speak out by Ciara and
her mother, Madeleine, her primary carer, is political. It is fuelled
by fury at the "gross injustice" being done to the ME community.


"I am very ambivalent about having my life exposed," said Ciara,
"but I feel I must speak out to highlight a situation that hasn't
changed in the last 20 years. Biomedical research into our
condition is still being ignored by the medical establishment. We
are being made to feel invisible."

Her comments coincide, and have been galvanised by, the
recent publication of a new independent report, the Gibson
inquiry, which calls on the government to "invest massively" into
researching a physical cause for ME.

Released by a committee of MPs, and led by Dr Ian Gibson, a
Scot, the inquiry took nearly a year to complete and found that
many of the estimated 250,000 people in the UK with ME are
written off as neurotic because a minority have been
misdiagnosed.

It also concluded that the medical establishment's belief that ME
is "all in the mind" has biased research against investigating a
physical cause for the condition. Most funded research studies
have been directed at psychosocial management strategies,
such as pacing energy levels and coping with limitations.

"This is a bit like using carrot juice or exercise to treat cancer, or
talking therapy to treat Parkinson's disease," believes Ciara,
who spent the earlier years of her illness with a constant
migraine-type headache, so severe that she would bang her
head against the wall above her bed in a futile bid to relieve the
pain.

Although currently slipping into a relapse phase of her fluctuating
condition, her determination not to be portrayed as a victim is
firm.

She dressed, washed her hair, and put on make-up before
being interviewed, even though this exhausted her to the extent
that she had to retreat to bed for the rest of the day.

Like many sufferers, who feel their whole system is "poisoned",
she finds demeaning the popular term used to describe her
condition - Chronic Fatigue Syndrome.

Welcoming the inquiry's findings that scientific research into ME
may lead to a proper diagnostic test for the condition, she said:
"It is as much about extreme tiredness as Alzheimer's is about
extreme forgetfulness. ME should be recognised as on a par
with end-stage MS or cancer."

Having renamed her condition the "Living Death Syndrome" it
leaves her, at its worst, in constant severe pain, unable to sit
upright because her brain feels like it is "slopping about in a
solution" in her skull. She has also gone through periods of
being unable to see properly, chat, or hold a knife and fork.

Her mother, Madeleine, whom Ciara admits "bears the brunt" of
her battle, has had to cut up her food for her, and even wash her
hair, while she has lain pained and exhausted.

On better days, however, she can venture out of bed for around
three hours. If she feels well enough to step outside, she must
travel even short distances by car. She also wears earplugs in
public places. Her sensitivity to noise is so extreme, that even
the sound of a hand dryer causes "wincing pain" through her
skull.

No conventional coping treatment has helped. Neither has the
£15,000 worth of complementary therapies she has paid for in
her desperation to lead some semblance of a "normal" life.

"You clutch at anything," she said. "What you're really clutching at
is hope. But there must now be definitive scientific research
done. I want someone to be paid to look through a microscope."

Her mother could barely contain her frustration when asked to
sum up how she felt about seeing her daughter's potential drain
away.

"I have had to watch Ciara suffer over the years and she's as ill
now as she was 20 years ago," said Madeleine. "She has
missed out on so much. I've gone beyond being sad about it.
Now I'm just so angry because nothing is being done. This does
a gross injustice to ME sufferers. I've been so frustrated I've even
considered lying outside the doors of the medical research
councils in protest."

She added: "While not wishing to take away from other causes, I
get angry when thinking about how much money is put into
researching something like bird flu…Yet, here are all these
people with ME being ignored. Some are being drip-fed, others
are reaching the age of 20 without ever having gone to
secondary school."

Around 25,000 children are thought to have the illness in the UK.
According to the ME Association, it is the biggest cause of
long-term sickness absence in schools.

On the MPs' report, which also finds the UK is falling "way
behind" other countries on ME research, Dr Charles Shepherd,
medical adviser to the ME Association, said: "Those who have
been named and shamed in this report can no longer ignore its
very powerful messages."

One of the few charities worldwide that is privately funding
biomedical research into its root causes is Perth-based ME
Research UK (MERGE) which last year uncovered biochemical
abnormalities in the circulation of adult ME patients, suggesting
a persistent infection that keeps the immune system working
overtime.

Dr Neil Abbot, its director of operations, welcomed the report's
assertion that "the origins and causes of the whole ME problem
will only be found through further scientific research".

He added: "This is a vital step. It is marvellous that the inquiry
has recognised psychology cannot be the answer to the illness,
and that the 'UK precedence [that] has been given to
psychological research' should cease."

Ciara believes a cure can be found in her lifetime only if
policy-makers pay heed to the report. While she waits, she is at
pains to achieve "bite-sized" pieces of past dreams.
Spending time with her younger sister's children is a great
source of joy. She has also published her first collection of
poetry.

It was written largely while bed-bound, from where she could look
into a townhouse used by the medical research department of
Glasgow University. Her collection, Seats for Landing, contains
a poem called Overlooked, which she hopes best describes her
"incarceration".

"I try not to think too much about the future," she said. "I live one
day at a time, appreciate the smallest things, and take nothing
for granted."



Links
www.ciaramaclaverty.co.uk
www.erythos.com/gibsonenquiry/Report.html
www.meassociation.org.uk
www.meresearch.org.uk


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End of CO-CURE Medical & Research Posts Only Digest - 2 Dec 2006 to 4 Dec 2006 (#2006-55)

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