Saturday, April 25, 2009

“What we see depends mainly on what we look for.” ~ Sir John Lubbock

 

"What we see depends mainly on what we look for." ~ Sir John Lubbock

 
 
Too many doctors, when looking at CFS patients, see only what they want to see, and hear only what they want to hear.
 
A doctor who wants to see depression is not going to do the cortisol test which will be off in one direction for depression and in the opposite direction for CFS.  He'll tell you it's unnecessary, because he doesn't want to have to deal with the fact that it's going to prove him wrong.








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LDN for CFS/fibro

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
      >>> Help ME Circle <<<<
>>>>    25 April 2009     <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:



http://bit.ly/YWWb9


The Herald


HEADLINE NEWS


CAROLYN CHURCHILL

April 25 2009



'Life-changing benefits' for
patients using addiction drug




A drug which is normally used to treat heroin
addiction can deliver "life-changing" results for a
range of medical conditions, sparking calls for it to
be offered more widely to patients.

Medical experts claim that low-dose naltrexone (LDN)
has been used successfully for people with a variety
of conditions which affect the immune system,
including multiple sclerosis, Crohn's disease and
chronic fatigue syndrome.

At the first European conference into the drug which
was initially prescribed in larger doses to block the
effects of heroin use, speakers from around the
world, including America and Israel, will hear results
of trials into the drug and will call on GPs and other
health professionals to prescribe it more widely.
advertisement

Dr Tom Gilhooly, who is organising the conference in
Glasgow, has around 200 patients at his clinic in
Rutherglen, who are currently receiving LDN and he
said he had recorded "a lot of success" in those who
had taken the drug.

"It is a very interesting drug," he said. "It has very
few drawbacks and it is very effective. If you find a
drug that is successful, isn't toxic and can treat
conditions that are normally difficult to treat it is a
real find.


"We have used LDN to treat many different
autoimmune diseases over the past five years and
have seen life-changing results for patients. LDN
treatment can aid a better quality of life for both
long-term sufferers and for those newly diagnosed."

LDN, which appears to boost the production of
endorphins in the body and stimulate the immune
system, was first prescribed in doses of between
50mg and 150mg for heroin addicts.

It has since been used in doses of between 1mg and
around 4.5mg to treat patients with multiple
sclerosis and other conditions affecting the immune
system.

It is given in a liquid form and patients currently
tend to pay privately for the drug, which costs
around £15 a month.

Dr Gilhooly said that around half of his patients who
receive LDN had been prescribed it for chronic fatigue
syndrome and fibromyalgia, a similar condition in
with patients suffer from fatigue and chronic pain in
their muscles.

Dr Gilhooly said: "We have used it for both with
great success. I have been treating chronic fatigue
syndrome for years but we have been incredibly
limited in treatments. To find something like this
that is working is great for the patients.

"Now that we know the drug we are looking at what
other immune-related conditions we can try it on."

At the conference, which will be held at the Western
Lecture Theatre at Glasgow University today, Dr
Gilhooly will discuss the findings of a pilot trial from
Stanford University on patients with fibromyalgia.

In six out of 10 patients LDN was "significantly
better" than a placebo at reducing daily pain, fatigue
and stress related to the condition.

Other symptoms, such as sleep problems,
gastrointestinal complaints and headaches were also
alleviated. No serious side-effects were reported.


Senior author Sean Mackey, associate professor of
anesthesia and chief of the pain management
division at Stanford University Medical Centre, said:
"Patients' reactions were really quite profound. Some
people decided to come off other medications. Some
people went back to work really improving their
quality of life."

Dr Mackey added that although he was "excited" by
the preliminary results, more in-depth research would
be carried out to establish the true impact of the
drug on patients with fibromyalgia.

Dr Gilhooly said that he also hoped that research
could be carried out in Scotland.

"Scotland is one of the places which is a hot area for
LDN prescribing and research and we are hoping to
carry out a lot of research in the future," he said.



Case Study:

I'm feeling positive and no longer drained


AS a PE teacher, Christine Fowler had always
enjoyed being active. But when she developed
chronic fatigue syndrome nine years ago, it became
an effort simply to get up in the morning.

"It was an all over weakness," she said. "I had a lot
of pain in my legs and arms. I would be sitting on
the sofa looking out of my front room, not able to do
anything."

Mrs Fowler, 49, from Hogganfield, Glasgow, was
forced to take long periods off work. After starting on
a gradual exercise programme she was able to return
to work but said she was still "only operating at
50%" and had to go to bed as soon as she returned
from school.

In October she was forced to take another six weeks
off work and Dr Tom Gilhooly suggested she try
low-dose naltrexone to alleviate her symptoms.

She began taking 1mg every day, returned to work at
the beginning of January and has not been off since.

Mrs Fowler, who has four children, said: "It has
allowed me to operate at a much higher level on a
day to day basis and be much more positive about
everything. I'm not drained of energy.

"In the past even when I did mange to do something
one day, the repercussions the next day would mean
I was drained and sore. That is easing off."

She is now able to play a more active role at work.
"In the past I wouldn't be physically able to do the
things I wished to, even simple things like being
able to demonstrate a headstand."

She has also played the odd game of badminton and
is now hoping to take part in the Women's 10k next
month, walking the course in the south side of
Glasgow.

"Chronic fatigue syndrome drags you down," she
said. "I'm now able to do things again. LDN has had
a positive effect on me."





© All rights reserved.






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Friday, April 24, 2009

Fibromyalgia: brain disorder?

The Neuroscientist, Vol. 14, No. 5, 415-421 (2008)
DOI: 10.1177/1073858407312521

Fibromyalgia: A Disorder of the Brain? * Petra Schweinhardt *

Alan Edwards Centre for Research on Pain, Faculty of Dentistry, McGill
University

* Khara M. Sauro *

Alan Edwards Centre for Research on Pain, Faculty of Dentistry, McGill
University

* M. Catherine Bushnell *

Alan Edwards Centre for Research on Pain, Faculty of Dentistry, and
Department of Anesthesia, McGill University, Montreal, Quebec, Canada
catherine.bushnell@mcgill.ca

This article presents evidence that fibromyalgia patients have alterations
in CNS anatomy, physiology, and chemistry that potentially contribute to the
symptoms experienced by these patients. There is substantial psychophysical
evidence that fibromyalgia patients perceive pain and other noxious stimuli
differently than healthy individuals and that normal pain modulatory
systems, such as diffuse noxious inhibitory control mechanisms, are
compromised in fibromyalgia. Furthermore, functional brain imaging
studies revealing
enhanced pain-related activations corroborate the patients' reports of
increased pain.
Neurotransmitter studies show that fibromyalgia patients
have abnormalities in dopaminergic, opioidergic, and serotoninergic systems.
Finally, studies of brain anatomy show structural differences between the
brains of fibromyalgia patients and healthy individuals. The cerebral
alterations
offer a compelling explanation for the multiple symptoms of fibromyalgia,
including widespread pain and affective disturbances. The frequent
comorbidity of fibromyalgia with stress-related disorders, such as chronic
fatigue, posttraumatic stress disorder, irritable bowel syndrome, and
depression, as well as the similarity of many CNS abnormalities,
suggests at least
a partial common substrate for these disorders. Despite the numerous
cerebral alterations, fibromyalgia might not be a primary disorder of the
brain but may be a consequence of early life stress or prolonged or severe
stress, affecting brain modulatory circuitry of pain and emotions in
genetically susceptible individuals. NEUROSCIENTIST 14(5):415-421, 2008.
DOI: 10.1177/1073858407312521

*Key Words:* Chronic widespread pain . Functional disorders . Dopamine .
Opioids . Brain morphometry

http://nro.sagepub.com/cgi/content/abstract/14/5/415
 




 

CFS/Fibro Awareness Items for Sale

Thanks to Nelcha for this great list!



A few May 12 Awareness Day and Other CFS/FM Items for Sale
Lapel Pins, Posters, Bookmarks, Mugs, Totes, Notes, Bumper Stickers, Shirts, etc.

* Slamdunks Apparel, Cards, and Gifts at Zazzle,
Proceeds to CFS & FM Research
o CFS & FM Clothes, Cards & more by Ashley
o CFS Awareness Christmas Gifts, Holiday Cards, Matching Postage

Cafe Press - http://www.cafepress.com/cfs_fms_mcs
$1.50 "Heartfelt" May 12th CFIDS Awareness Day Button with message that says:
"Unless you have CFIDS, you can't begin to know
what "being tired" is all about"
http://www.cafepress.com/cfs_fms_mcs.17941415

One of the T-shirts has this on the back:
"My disabling chronic illness is more real
than your imaginary medical expertise." LOL!
http://www.cafepress.com/cfs_fms_mcs.17375243

More clothes, bumper sticker, "Hope for the Cure"
Postcards ($8 for 8),
totes, mug, teddy bear, mousepad apron...

NFRA
Pink/Crimson Bracelets, $1+s&h: http://www.nfra.net/AwareBracelet.htm
Pink/Crimson Lapel Pin, $5: http://www.nfra.net/AwarePin.htm

FM Aware Store
Blouse, deep pink silicone bracelet, videos, pamlphets, posters
http://www.fmaware.org/store.htm






 


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Thursday, April 23, 2009

Answer to Prayer

God answers all prayers – sometimes the answer is No.
 
22 years ago, when I first got sick, someone prayed over me, assuring me that this would heal me.  I had a lengthy remission, but I was not "cured".
 
A lot of things have happened over the past 22 years.  A lot of privately-funded research has found interesting things, and a lot of government-funded research money has been proven to be misused for research into things that have nothing to do with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
 
More importantly, in the past 22 years, I've learned a lot, developed more advocacy skills, and found a helpful tool called The Internet.  The book that probably wouldn't have been published 22 years ago can now be written as a  blog without the interference of a publisher (who would certainly want to censor some of the things I say in order to avoid potential legal problems).  Without a full-time job, I have the time necessary to do concerted advocacy work.
 
Things fell into place too easily once I made the decision to be an outspoken public advocate.  A specialist had told me that because doctors allowed me to deteriorate too far without proper treatment, I would never work full-time again, so I no longer had to worry about a future employer googling me and finding out that I have CFS – my career as a paralegal is over.  I had nothing to lose and everything to gain.
 
At the first public advocacy event I attended, I met someone who became my right arm, co-author  and editor; someone who knows even more about CFS politics than I do, and is always willing to help me with a study citation or a better word.  He introduced me, in person and via e-mail, to other advocates.
 
In the past, whenever things fell into place this easily, it was a signal that I was doing what God wanted me to do.  Looking back, so much of what I did in the past was preparing me for what I do today.
 
The faith healer's prayer that I be cured was answered with a resounding No. 
 
The correct prayer, "Thy will be done" has been answered with all the tools that I needed to be effective in this new role.  On days when I need to feel well enough to do advocacy, I am.  I was even able to attend the Reno conference in March – most years, I haven't felt up to doing much of anything in March.  Clearly, this is what I was meant to do.
 
 




 


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Curing the Incurable

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
      >>> Help ME Circle <<<<
>>>>    24 April 2009   <<<<
Editorship : j.van.roijen@chello.nl
mail scanned by Comodo I. Security
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:




Reading this article, I asked myself: did Alan
Wiseman suffer from 'fatigue' or 'unwellness'?


~jan van roijen



````````



http://www.wellingtonadvertiser.com/index.cfm?page=colDetail&itmno=335 



The Wellington Advertiser

Life-wise




Curing an incurable


by Ray Wiseman



Nearly two years ago, I reported my son, Alan,
became seriously ill. It progressed so fast he had to
quit work, ailing to the extent he could walk only
steps without a walker.

He found a wheelchair, his voice faded to a whisper
and he found it difficult to concentrate. His family
doctor and various speci­alists seemed baffled.
Because he could last only moments on a treadmill,
they assumed he had serious heart problems, but
could not agree on a specific one. Some of the
probable diagnoses suggested imminent death. It
looked like his life would end in his mid-40s.

At times, his condition would improve, but extra
physical exertion or emotional tension would send
him down again. He couldn't even attend church,
where he worked as minister of music; crowds
exhausted him.

For nine months he lived with no sense of what ailed
him. Then an internist diagnosed the illness as
chro­nic fatigue syndrome (CFS), a con­dition
triggered by a viral infection. The internist explained:
"Exercise or tension causes an adrenal rush, which
should energize your muscles. But it does the
opposite, causing muscles to weaken, including the
heart."

Medical science knew no cure. Sometimes people
with CFS have remissions fully or partly; some never
recover. Physically and emotionally he sank to his
lowest, dropping well down on the disability scale.
But he refused to give up and daily checked for new
treatment on a CFS website.


In early 2007, he read about a preliminary study at
the Stanford University School of Medicine involving a
new drug that suggested hope for some sufferers.

Researchers had treat­ed 25 patients, 21 of whom
responded with significant improvement that
continued even after going off the medication at six
months. The first patient experienced no relapses
three years after ending treatment.

The 21 patients who improved all appeared to have a
type of CFS that originated from a viral infection. The
report said researchers would begin a double-blind
test to gain further data.  Neither the internist nor
the family doctor could see any reason for Alan to
continue suffering, waiting years for additional
research. The anti-viral drug used in the Stanford
study did not have Canadian approval, so they
prescribed Valtrex, a similar product.


He began the treatment, and within seven weeks his
health began improving. In a year he returned to
work part time, and began riding a bicycle and
swimming laps. For months he experienced
disorientation when in a crowd or when trying to do
too much at once. We hoped he was on the way to
gaining full health.


Alan had three things going for him: a personal faith
that God would heal him; a determination to take
responsibility for his own health; and doctors with
the courage and imagination to try new things.

Did Alan's faith and the doctors' determination pay
off? His wife said: "Alan has gradually improved over
the last year. Three weeks ago he returned to work
full time. His walking is still limited, so we hope for
more improvement in this area. Now he follows a
strict routine with swimming as his daily physio. We
are grateful for this amount of recovery."


In this age of distrust and skepticism, miracles still
happen.
 
 
 
 




 


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Wednesday, April 22, 2009

Fibro on TV

National Fibromyalgia Association President Featured on National TV
 
ANAHEIM, Calif. (April 16, 2009)-Lynne Matallana, president and founder
of the National Fibromyalgia Association, was a featured guest on the
April 16 episode of "The Doctors," a one-hour, daytime TV talk show
launched in September 2008 on CBS.

A spin-off of the "Dr. Phil" show, "The Doctors" is produced by Phil
McGraw and his son, Jay McGraw, and focuses on health and medical
issues.

"How to Prevent a Misdiagnosis" was the topic of the April 16 episode
with Matallana, and also featured patients suffering from multiple
sclerosis and interstitial cystitis.

Fibromyalgia was introduced by the show's doctors as a controversial
illness "with no true tests," but the doctors also acknowledged that
fibromyalgia patients suffered from "real pain."

During the show, Matallana was asked to comment on a videotaped
statement by a member of the medical community who disputed the validity
of fibromyalgia.

"I thought doctors took an oath to help patients, and all I can say is
that that hurts patients," Matallana replied during her brief on-camera
appearance. "I've had this illness for over 20 years, and I'm tired of
debating it. My pain is real, and there are millions of doctors out
there that do believe in this, and they know what it's like to feel like
you've been hit by a Mack truck every single day."

After watching the segment at the NFA headquarters in Anaheim,
California with staff members, Matallana said she was pleased with the
show's portrayal of fibromyalgia, overall.

"It's encouraging to our community that a national television show like
'The Doctors' is interested in talking about fibromyalgia," said
Matallana. "However, I hope the producers will consider running a longer
and more comprehensive segment on this chronic pain disorder. There are
so many new scientific discoveries and treatment options available now
for fibromyalgia that would greatly benefit their viewers who suffer or
know a loved one who suffers from it."

Matallana also stressed the importance of finding correct information on
fibromyalgia, through reliable sources, such as the NFA's website,
www.fmaware.org , and some of the newest online sources, including
www.KnowFibro.com , which focuses on helping patients manage their
fibromyalgia symptoms.

A portion of the segment can be viewed online at
www.YouTube.com/fmaware .

For more information about "The Doctors," including the show's viewer
forums and discussion boards, visit www.thedoctorstv.com .

Letters to the show may be sent to:



The Doctors
5555 Melrose Ave.
Mae West Building, Second floor
Los Angeles, CA 90038
 
 
 
 


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Text of the 2009 Informational Brochure

 
CFS FACTS
 
"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"
    – Dr. Marc Loveless

(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
 
I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.
         – Nancy Klimas, M.D.
Miami Herald, March 24, 2009
www.miamiherald.com/living/story/963475.html
 
In fact, 77% of CFS patients report negative experiences with health care providers, and 66% believe the treatment they received made them worse.  As a result, many patients have lost faith in the medical profession and have simply stopped seeking any treatment, considering it a waste of time, money and their limited energy to attend an appointment where they will likely again be verbally abused as being lazy or crazy rather than physically ill.
 
This can result in other health problems going undiagnosed or untreated, bringing with it the risk of premature death from something that could have been treated if not for (a) the patient's well-founded distrust of doctors, or (b) the proclivity of doctors to attribute any new symptom to either the CFS or the patient's over-active imagination.

Research has demonstrated physical abnormalities including changes in micro RNA, different types of immune dysfunctions, and multiple viral assaults.  Without treatment, long-term sufferers develop significant neurological and cardiac abnormalities, and die an average of 20-25 years before their time.
 
However, in the US, research breakthroughs occur solely in the private sector, because the CDC and NIH combined allocate at most $6M a year to study a disease that they estimate affects 4-7 million Americans (more than AIDS, breast cancer and lung cancer combined; and more than 10 times as many people as have MS).  This works out to about $1 per patient per year – compare that to $35/patient for epilepsy, $70 for autism, $250 for MS, and a whopping $650 per patient for cancer!
 
More in-depth information is available from http://www.co-cure.org/neurological.htm or at your request from info@CFSfacts.org
 
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients are more functionally impaired than those suffering from diabetes, heart failure and kidney disease. This disease, which costs the US as much as $26 billion annually, has been sorely neglected by government health agencies.
 
Approximately a million Americans of all ages, racial, ethnic, and socioeconomic groups suffer for years, decades – and often their entire lives – from this disease. Its impact on the economy has been measured and is significant. Yet after nearly four decades as an internationally recognized and categorized disabling neurological disorder, ME/CFS remains, here in the US, one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.
 
At the behest of the Obama-Biden Transition Team, a group of long-term patients prepared a 36-page report, an edited version of which was selected to be placed on the Obama website, www.healthreform.gov.
 
The conclusion of the patient group was that while lack of health insurance is a problem, even having gold-plated health insurance is no guarantee that you will get the correct diagnosis/treatment, because the research is not getting down to the front-line doctors where it will do the most good for the most people. 
 
One of our members was told unconditionally that she would never work again purely as a result of doctors allowing her to deteriorate too far without proper treatment; the ultimate irony is that she told the doctors at the first appointment what the proper treatment was and they refused to prescribe the medications she requested because they were unaware of the research showing that what they were prescribing was completely useless for ME/CFS.
 
Dr. Richard Bruno observes that rather than admit that they don't know what they're talking about, doctors will throw out red herrings like deconditioning, weight, depression, and prescribe exercise ... which, if you have ME/CFS is guaranteed to make you feel worse.  Then you risk developing real depression, which he notes is triggered when patients "can no longer meet other people's expectations and do what they think they 'should'."  It's a result, not a cause, and the medical profession must take responsibility that sometimes the cause for the patient becoming depressed is their bullying the patient to do more than the patient is physically capable of.
 
"There is ample evidence that ME is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non-neurological complications affecting the liver, cardiac and skeletal, muscle, endocrine and lymphoid tissues are also recognized. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over-exertion."  – Dr. Elizabeth Dowsett
 
Unfortunately, quite often, the physical or mental over-exertion that triggers the relapse is a direct result of an uninformed doctor pushing the patient to do more, either to "prove you're not lazy" or because the doctor has misdiagnosed ME/CFS as depression and thinks that "exercise will make you feel better" by releasing endorphins.  In fact, there is ample evidence that aerobic exercise not only does not make the ME/CFS patient feel better, it can push patients into relapse; some are permanently bedridden as a result of this faulty medical advice.
 
Too many doctors still fail to distinguish between the symptom of "chronic fatigue" resulting from overwork or as a symptom of other medical conditions and the entirely-different neuroimmune disease of ME/CFS.
 
Please help us by sending letters to your elected officials, and enclosing our report, which you can download at:
http://www.cfids-me.org/dhhs/longreport.pdf
 
Thank you for your participation.
<signed by 8 support group leaders/activists>
 
* * *
Any activist/support group who would like to distribute this brochure, please contact into@CFSFacts.org.  We can easily prepare a version including your contact information, meeting date/location, etc.  (Alternately, feel free to simply cut-and-paste this text into your word processing or publishing program.)
 
The more people (especially elected officials) who get this brochure, the better our chances of finally getting the research we need toward an effective treatment/cure.


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Monday, April 20, 2009

Craig Maupin's CDC letter

As indicated in a prior post, CDC wants our input.  If you're not sure what to write, here's a sample letter from Craig Maupin of CFS Report.
 
To Whom it May Concern:

    My name is Craig Maupin.   For several years, I have run a popular
website on chronic fatigue syndrome (CFS), The CFS Report
(http://www.cfidsreport.com ) .  Like many people with CFS, I want to see the
CDC's research program succeed.  

          However, the CDC's CFS Research Program has failed to garner my
support.    And given that I interact with CFS sufferers on a regular basis,
I can say with confidence that the CDC's efforts does not have the support
of the CFS community.    Though the CFS community is diverse, currently I
know of no CFS sufferers who feel that the leadership of the CFS program is
effective or capable.


    Investment decisions at the CDC program have been narrow and
restrictive.   Some of those decisions are as follows:

1.   In 2006, the CDC research program held a news conference that touted
"groundbreaking findings" regarding the pathology of CFS.   Such an
announcement from the Centers for Disease Control will steer the direction
of future research and clinical care.   How is it responsible
decision-making to base such an announcement on a "pathology-specific" study
that discarded any findings outside of the HPA axis?   

2.   Since 2002, the majority of the CDC's funds have gone to two
contractors.   One is ABT Associates, and the other contractor is a small
group of researchers at the Emory University Department of Psychiatry.  The
question is whether the current CFS program is pursuing a personal interest
in stress and anxiety, rather than the broader interest in CFS shown by the
scientific community.  The budgeting of resources with these two contractors
does not correlate well with the following:

a.  A lack of any appreciable progress from the investments in ABT
Associates.

b.  Researchers with a diverse set of interests have been privately funded.
These researchers are seen in the efforts of the Whittemore Institute and
the CFS Research Foundation.  More diversity in CFS research was seen at a
recent HHV-6 Foundation conference and the IACFS/ME Conference in Reno.
These conferences are evidence that there is strong interest in CFS beyond
the HPA axis, stress, and anxiety.

c.    In 1998, Dr. William Reeves (Congressional hearing on the Gulf War)
stated that CFS was attributable to "multiple major lifetime stresses in the
year before one becomes ill."   Dr. Reeve's views toward CFS were
established publicly before he chose to invest heavily in the psychiatry
department at Emory.
   
d.    There are no women represented in the leadership of the CDC's CFS
Research Program.   As stated earlier, decisions have been made to restrict
much of the research investments for CFS research at the CDC to stress,
anxiety, and the HPA axis.  These restrictions are often associated with
societal biases toward women's illnesses.   Has the CDC done enough to
assure the public that the questionable decisions cited above are based on
science, and not traditional societal or gender attitudes toward women's
reactions to stress or anxiety, especially given the lack of female
leadership within the program?

   
3.    Emory University's recently publicized problems with conflict of
interests at the psychiatry department have done nothing to shore up
confidence in the CFS research program.   The congressional probes into
conflicts of interest are causing questions in the CFS community to fester,
questions such as whether or not there was compensation to Dr. Reeves for
teaching classes in stress response and fatigue at Emory.   Though Emory has
decided not to address those questions, I believe that Dr. Reeves would not
take salary from his own contractor.  However, clearing up the speculation
would be helpful.

4.    The largest contributor to the lack of confidence in the CDC's CFS
Research program comes from its highly controversial research definition.
The average research subject of the Wichita dataset was capable of 31 hours
or work and 17 hours of chores and activities a week.   This level of
activity does not represent me or my clinical symptoms.  It also does not
reflect an accurate clinical picture of CFS patients.  In addition, a recent
study found that the current "empirical definition" captures subjects with
emotional disorders. 
       Whether this clinical picture is accurate or not, it will greatly
impact the advice that my caregivers receive from the CDC as to how to treat
and manage my illness.  The truth is that most CFS sufferers and many
doctors no longer believe that the CDC program is researching their illness.



      For fifteen years, Dr. William Reeves has shown a commendable interest
in stress disorders.  He has worked diligently with the military on studies
on these disorders - working with the Air Force in 1998 and with the Army at
Fort Benning in 2006.   However, despite Dr. Reeve's deep passion for
learning more about post-traumatic stress, he does not have the confidence
of the CFS community. 
     
      The CDC's CFS program needs to recapture the CFS community's support.
To do this, the CDC's needs to address the concerns raised above.   And to
address those concerns, they will need to change the leadership at the CDC's
CFS research program.  One through a change in leadership will the program
begin to more accurately reflect the breadth of current CFS research. 
     
     
         
     
              Sincerely,
     

                  Craig Maupin






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Tell CDC exactly what you think of them!

The 10 year review of the CDC's CFS Research program is winding up. They've taken an internal look  and an external look at the program and an un-solicited outside look .  They liked the external look - it glossed over many of the more substantial problems with the program - and were likely horrified at the 'outside look'  they got from a very angry CFID's Association of America.

Now its  our turn. Its time to go on record and give your take about the CDC program where it has a chance to do some good. You can check out my take on the CDC's program at 'Bringing the Heat' a blog from Phoenix Rising at http://aboutmecfs.org/blog/






 


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RedLabs is now VIP

Source: Viral Immune Pathology Diagnostics (VIP Dx)
        RedLabs USA
Date:   March 2009
URL:    http://www.vipdx.com
        http://www.redlabsusa.com/dos/test_requisition/docs/Press_Release_Mar_2009.pdf 


RedLabs USA is happy to announce that we are now VIP Dx, Viral Immune
Pathology Diagnostics. Simply, we are VIP Diagnostics.
---------------------------------------------------------------------

VIP Dx has increased our scientific and administrative staff, strategic
partners and alliances in order to bring you quality testing and excellent
customer service in a timely and efficient manner.

In an effort to bring you quality tests and the latest technology in the
field of chronic immune diseases, we have re-developed many of our assays and
would like to introduce our new test menu to you. These tests are determined
to be the most relevant in aiding the clinician in diagnosing and treating
chronic immune disease. Our test kits have been re-configured. There are no
special preparations of specimens is required. Continue to ship at ambient
room temperature. Specimens must be received within 24 hours for proper
analysis. Collection and shipping instructions are included in each kit
along with all required specimen tubes. The return clinical envelope and
overnight airbill is also included. If you would like our new test kit,
please call Megan Martin at 775-351-1890.

We would like to call your attention to the new Herpes Infection Screen Panel,
the Mycoplasma Screen Panel and the new Infection Screen Panel. We have put
back nitric oxide testing in our complete CFS panel (CMCP) and our mini CFS
(MCP1) panels. We have added nitric oxide as an individual test as well.
Nitric oxide is an important inflammatory marker for inflammatory mediated
conditions and immune dysregulation.

Our most popular test continues to be the Immunobilan test for intestinal
dysregulation, inflammation and/or leaky gut. Leaky gut has been associated
with Autism Spectrum Disease, Thyroid dysregulation, chronic fatigue and
general intestinal distress.

The cytokine profile is a good marker for inflammation. TNF alpha and IL8
have been associated with obesity and pre-diabetes. Our scientific staff
continues their research and development of the most appropriate cytokine
screening for our chronic fatigue and immune dysregulated patients.

Effective immediately, please use the new test requisition and refer to the
updated specimen guidelines in the right column and the new pricing schedule
included with this package.

As a reminder, VIP Dx is a fee-for-service specialty clinical laboratory.
Fees are due at the time of service. VIP Dx will continue to provide patients
with a complete statement with all ICD and CPT codes so that they can seek
reimbursement from their own insurance company. VIP Dx will bill Medicare as
long as the patient provides a valid copy of their Medicare card and any
supplemental insurance and the signs the ABN (Advanced Beneficiary Notice)
located on the reverse side of the test requisition. Medicare patients will
be responsible for any fees not covered by Medicare and supplemental
insurance.

This is a good time to remind you of our Research Partners Program, assisting
in the clinical research of chronic immune disease. VIP Dx is dedicated to
aiding the research scientists and clinicians through our Research Partners
Program. If you have any questions about this program, please call Marguerite
Ross at 775-351-1890.

VIP Dx is committed to providing quality clinically relevant tests, accurate,
timely results and excellent customer service to aide the physician in the
diagnosing and managing chronic viral and immune mediated diseases.

On behalf of the VIP Dx team, we thank you for your continued support. We are
very excited about our latest technology and new test menu and, of course, our
new name and logo.

If you have any questions, please call us at 775-351-1890. Our new website
will be up shortly at http://www.vipdx.com. Our client services desk is open
from 9:00 ­ 5:00 PST, Monday ­ Friday.


Sincerely,

Marguerite Ross, Director
Marketing & Client Relations
VIP Dx




 


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Cheney Seminar April 25 Fairfax VA

New Maps for the Paul Cheney, MD/PhD seminar 

"CFS: Is Oxygen the Problem and Why?
A four-part treatment protocol."

Saturday, April 25, at 6-9 pm
Board Auditorium, Fairfax County Governmental Center
12000 Government Center Parkway, Fairfax VA 22035


Map 1 --- Around the Fairfax County Governmental Center
http://www.geocities.com/cfsnova/PhotoFolder/MapFairfaxGovernmentalCenter.pdf


Map 2 ---Within the FF Co. Gov'tal Center, the Board Auditorium
http://www.geocities.com/cfsnova/PhotoFolder/MapFairfaxGovernmentalCenterBoardAuditorium.pdf

*
*
*More Travel Information to Faifax*
http://www.geocities.com/cfsnova/directionsFairfax.html
*

*More Support Group Event Information*
http://www.geocities.com/cfsnova/events.html

For more information, please contact
Elly Brosius at (703) 968-9818 or write the
Northern VA CFS/ME, FM, and OI Support Group
cfsupport-owner@yahoogroups.com  



 


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A Postcard from the Edge

Everyone with CFS suffers from its devastating effects. But some people find themselves severely ill, financially destitute and without meaningful assistance from friends, family or society at large. Longtime CFS sufferer Gina Kerner shares her first-hand perspective of these lives in dire straits. Read her story, "A Postcard from the Edge," at http://www.cfids.org/cfidslink/2007/postcard.asp.
 


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