Friday, September 7, 2007

I'll take Potpourri for $400, Alex....

1.

If you think your doctor is a real pain, you may be right. Fibromyalgia patients who believe their doctors are serious about treating their symptoms may improve both physically and psychologically, research shows. Read more about this study on our Latest News page.  www.fmnetnews.com

2.

Karen Lee Richards' career as a writer and patient advocate grew out of
her determination to learn more about her own illnesses. Karen first
became ill in 1989, but it would be seven more years before she finally
received an accurate diagnosis. As she began to talk with other
fibromyalgia and chronic fatigue syndrome (aka myalgic encephalopathy)
patients, Karen discovered that her experience was not unusual. At that
time it was taking an average of approximately five to seven years for
someone to be diagnosed with one of these illnesses
. Understanding the
frustration, fear and anguish patients go through during those years of
not knowing what is wrong with them, Karen decided to do whatever she
could to raise awareness about FM and ME/CFS.  Read more:  http://www.healthcentral.com/chronic-pain/c/5949/profiles/?ic=4020

 
3.
 
Fortunately there is much good biomedical research being done by leading
research doctors and scientists, such as Jonathan Kerr and John Gow in the
UK and Sue Vernon in the USA, which shows that ME is caused by an
up-regulation of the immune system, often following an infection
. A
definitive test for the illness cannot be far away and a treatment that
helps to modulate the immune system will then follow, but this may take
time.  For more information contact reMEmber on 01273 831733, email
me_cfs@hotmail.com  or see www.remembercfs.org.uk  

Bill Kent secretary
The Chronic Fatigue Society
 
4.
 
Hyde is adament that a SPECT scan be done before a diagnosis of ME
is given. This is because MEis a brain disorder, not a fatiguing syndrome.
LKW
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Medical Procedures Often Required to Diagnose, Treat Brain Injuries

SPECT Scans

A SPECT scan (single photon emission computed tomography) is a nuclear
medicine study that measures blood flow and activity levels in the brain.

Because the SPECT scan provides information about how the brain works, it
is an excellent diagnostic tool for persons with brain injuries.

In the 1970’s and 80’s, the use of SPECT studies was nearly eliminated due
to the development of the Standard MRI and CAT scan with their superior
resolution for delineating tumors, cysts and blood clots. Yet despite their
clarity, MRI and CAT scans could offer only images of a static brain and
its anatomy; they gave little or no information on the activity in a working brain.

In the last decade, it has become increasingly recognized that many
neurological and psychiatric disorders are not disorders of the brain’s
anatomy, but problems in how it functions. And now, thanks to new
multiheaded cameras and the advancement of computer technology, SPECT
images of today can see into the deeper areas of the brain with far greater
clarity and show what CAT scans and MRIs cannot - how the brain actually
functions.

There are other sophisticated brain studies besides the SPECT that measure
brain function: the functional MRI (fMRI), the PET scan and the
quantitative  EEG. However, the SPECT scan has several advantages:

First, the largest amount of data available to date on how the brain works
has been documented using SPECT scans.

Second, the process is simple and the results immediate.

Radioactive isotopes are bound to a substance that is readily taken up by
the cells in the brain. A small amount, injected by IV, locks into the
brain in just one minute. The whole procedure including the scan takes
only about fifteen minutes. Also the person being scanned does not have to
lay immobile “in camera” throughout a SPECT procedure. This allows the
scan to take photographs of the person’s brain in a variety of states (e.g.
at rest or after performing tasks that will stimulate certain parts of the brain, etc).

SPECT scans, which cost around $1000 per scan are also less expensive than
fMRI or PET scans and are usually covered by insurance when brain injury is
present. Due to cost, ease of use and availability, the SPECT scan is often
the diagnostic tool of choice for securing images of brain function.

When evaluating the scan, physicians are usually alerted that something is
wrong in one of three ways:

1) they see too much activity in a certain area;
2) they see too little activity in a certain area; or
3) they see asymmetrical areas of activity that ought to be symmetrical.

Using this information along with a detailed clinical history, it is
possible to pin-point trouble spots affecting a person’s biological,
psychological and social makeup so that appropriate intervention can be
recommended.

In brain injury where cognitive issues may be complex, the scan can
help differentiate between two problems with similar symptoms. Multiple
problems, once identified, can be addressed in the context of an over-all
plan.

One benefit of using a SPECT scan in brain injury is that it helps persons
with brain injury and their families know what they are dealing with. Seeing
areas of deficit in black and white encourages compassion and a valuable
reality check about problems that are unlikely to be “fixed.”


Yet when the scan reveals abnormalities that have the potential to improve,
that information offers hope. A game plan based on the results of the scan
can help in discerning what “next step” is possible. The findings may also
provide the support needed to secure additional services through insurance
that such a step would require.

When looking for a person, clinic or facility to provide a SPECT scan, some
things to consider are:

- How much experience do they have with SPECT scans? Someone who does
ten or twenty scans a year is not going to be as astute in picking up
abnormalities as someone who does hundreds.

- Do they administer a clinical history using professional (preferably
masters-level) personnel? Because the clinical history information is used
in conjunction with the scan to determine diagnosis, competent evaluators
are critical .

- Is there an end product? The value of the SPECT cannot be fully realized
by just documenting the underlying physiology of the person’s brain function.

A plan that looks at biological, psychological and social solutions to
address the problems is the other half of the equation. Using an integrated
approach, a qualified doctor should be able to identify problem areas (such
as in executive function and impulse control) and recommend appropriate
medications and therapies known to be effective in changing abnormalities
or deficits in brain activity.

-  Who interprets the results, determines the diagnosis and develops the
plan?  The physician or assistants? The benefit of the plan to the person
and the family will directly relate to the experience and qualification of the
person/s directly involved in the process. Can the doctor or clinic refer
the person to neurologists, neuropsychologists and therapists who understand
this integrated approach and are willing to work with the plan?

The good news for persons with brain injury is that technology is available
to help with better diagnosis, and that may make possible more
appropriate and effective treatment(s).

~

Daniel Amen is a board certified child and adult psychiatrist, brain
imaging specialist, and the CEO of Amen Clinics, Inc. in Newport Beach and
Fairfield, California and the new clinic in Tacoma, Washington. Dr. Amen
has pioneered the use of brain imaging in clinical psychiatric practice and
is a nationally recognized expert on the relationship between the brain and
behavior. His clinics have the world’s largest database of functional brain
scans for neuropsychiatry. He has won writing and research awards from the
American Psychiatric Association, the US Army and the Baltimore-DC
Institute for Psychoanalysis.

http://www.birf.info/home/library/med-procede/med-pro-spect.html


The Brain Place is a website giving in-depth information on SPECT scan
technology including abstracts, brain maps detailing location/function,
case studies, and history.

Dr. Amen's book, 'Change Your Brain, Change Your Life', is a layman’s
guide to understanding the brain, how it works, and how to change it.
The text includes medication helpful in addressing specific symptoms.


5.
http://www.westpress.co.uk/displayNode.jsp?nodeId=145786&command=displayContent&sourceNode=231644&home=yes&more_nodeId1=145795&contentPK=18233872


ME GUIDELINES A STEP FORWARD BUT NOT ENOUGH
Date : 29.08.07


Sufferers of ME are angry that the Government's health watchdog has failed to
recognise the debilitating condition as neurological.


The National Institute of Clinical Excellence (Nice) has issued new guidelines
to doctors on how they should treat Myalgic Encephalomyelitis.

The guidance, which has taken three years to compile, says healthcare
professionals should take the illness seriously.

But it does not support the World Health Organisation's view that it is a
neurological condition.

Instead, Nice advocates psychotherapy treatment or exercise programmes that ME
sufferers say do not help the illness, which affects 240,000 people in the UK.

The affliction, also known as chronic fatigue syndrome, causes a range of
symptoms including tiredness, malaise, headaches, sleep disturbances,
difficulties with concentration and muscle pain.

Dr Esther Crawley, an ME specialist who is based at Royal United Hospital,
Bath, and helped to draw up the Nice guidelines, said: "ME causes symptoms of
varying severity and can be debilitating in children and young people.

"We frequently see children who are very severely affected and unable to get
out of bed.

"These guidelines should ensure that people who are severely affected have
their diagnosis and care supported by a specialist, and have access to
treatment."

It is hoped the guidelines will ensure that doctors take ME seriously.

Nice admits "uncertainties" about diagnosing and managing the condition have
"exacerbated the impact of ME" on patients and their carers in the past.

In the new guidelines, doctors are told to develop an individualised
management plan for each of their patients.

But Dr John Greensmith, 54, from Bristol, is concerned about Nice recommending cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments.

He says patients get little benefit from CBT - and GET can be dangerous.

Dr Greensmith was diagnosed with ME 19 years ago and runs the support
organisation ME Free For All.

"The GET programmes can push ME patients too far and they can end up in a
wheelchair or bed- bound," he said.

"CBT is a psychological approach for people with depression so it makes the
assumption that ME is psychological.

"There is no evidence that either treatment works.

"But I think the report is positive in that it recognises the patient.

"More money needs to be put into research - that is fundamental. They need to
go back and look at it again." For 16-year-old Amy Baldwin, pictured, every
day is a battle to get out of bed.

But since she was diagnosed with ME eight years ago, Amy has faced accusations
that the aches and pains in her arms are psychological.

Her parents have been accused of being over-protective and imagining things,
and doctors even said Amy was suffering from 'school phobia'.

Amy missed so much schooling because of her illness that her parents decided
to educate her at home from the age of 10.

"When I have a bad day I feel very sick and have aches all the time in my arms
and legs," she said. "It's very restricting.

Amy's mum Sally, 46, said: "She was always very poorly and would sleep a lot
and complain of aching arms and legs.

"But it wasn't until I did some research myself and got in touch with the ME
Action Line that I got the information and a diagnosis when she was eight
years old.

"We were fobbed off by the doctor and teachers, who said it was school
phobia."

Amy has now earned a place at the City of Bath College to study for a media
diploma.

For more information on ME, log on to www.mefreeforall.org

6.
 
Identity and coping experiences in Chronic Fatigue Syndrome: A
synthesis of qualitative studies.

Journal: Patient Educ Couns. 2007 Aug 13; [Epub ahead of print]

Author: Larun L, Malterud K.

Affiliation: Norwegian Knowledge Centre for the Health Services,
Norway; Department of Public Health and Primary Health Care,
University of Bergen, Norway.

NLM Citation: PMID: 17698311


OBJECTIVE: To provide insight into patients' and doctors' experiences
with CFS.

METHODS: We compiled available qualitative studies and applied
meta-ethnography to identify and translate across the studies.
Analysis provided second-order interpretation of the original
findings and developed third-order constructs from a line of arguments.

RESULTS: Twenty qualitative studies on CFS experiences were
identified. Symptom experiences and the responses from significant
others could jeopardise the patients' senses of identity. They felt
severely ill, yet blamed and dismissed.
Patients' beliefs and causal
attributions oppose the doctor's understanding of the condition. For
the patient, getting a diagnosis and knowing more was necessary for
recovery. Doctors were reluctant towards the diagnosis, and struggle
to maintain professional authority. For patients, experience of
discreditation could lead to withdrawal and behavioural disengagement.

CONCLUSION: The identities of CFS patients are challenged when the
legitimacy of their illness is questioned. This significant burden
adds to a loss of previously established identity and makes the
patient more vulnerable than just suffering from the symptoms.
CFS
patients work hard to cope with their condition by knowing more,
keeping a distance to protect themselves and learning more about their limits.

PRACTICE IMPLICATIONS: Doctors can support patients' coping by
supporting the strong sides of the patients instead of casting doubt upon them.

7.
 
 

 


 

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