Friday, January 10, 2014

Check out Holistic ways to fight chronic pain, and win -


Inflammation is the root cause of many illnesses, according to Dr. Reza Ghorbani, medical director of the Advanced Pain Medicine Institute and author of "Secrets to a Pain Free Life." Cardiovascular disease, Alzheimer's, arthritis and several digestive disorders have all been linked to chronic inflammation.

Inflammation is a natural part of your immune system; it occurs when the body is fighting against harm or infection. However, chronic inflammation hurts the body instead of healing it because the immune system is essentially attacking healthy cells, according to the National Institutes of Health.

Wednesday, January 8, 2014

Klimas says Veterans not getting Effective Treatments

VA doctor says Gulf War vets not getting effective treatments
Kelly Kennedy, USA TODAY
7:33 p.m. EST January 7, 2014

Miami clinic has treated Gulf War illness successfully, but methods
have not been disseminated for use in other clinics in the VA system

WASHINGTON — As Department of Veterans Affairs physician Nancy Klimas
told an agency panel Tuesday about the many successful ways her clinic
has been treating Gulf War illness, veterans have responded with a
combination of hope and anger.

The hope came because her clinic appears to be making headway in using
research-based methods to treat veterans with the disease, which
consists of symptoms ranging from headaches to memory loss to chronic
fatigue, and plagues one in four of the 697,000 veterans of the 1991
Persian Gulf War against Iraq.

The anger came because, although Klimas had been using at least some of her methods for a decade, none of them have been disseminated throughout the VA system for use in other clinics. Her testimony was
part of the ongoing fight between Gulf War veterans, who believe the
government is ignoring physical causes for their ailments, and the VA,
which has been reluctant to support the veterans' claims.

Klimas heads the Institute for Neuro Immune Medicine at Nova
Southeastern University in Miami, and she leads Gulf War Illness
research at the VA Medical Center in Miami. She said she has asked her
patients to be their own advocates because many physicians don't
believe the illness is anything but psychiatric.

Others, Klimas said, don't have time to read the training manual VA
put out to help them care for Gulf War veterans, don't have more than
15 minutes to deal with each patient, or don't know how to refer them
to specialty clinics where they can get care — and some simply don't
care to learn.

"That was a great presentation, but I can't resist adding that this
information has been in the hands of Dr. Klimas for 12 years," said
Jim Binns, chairman of the Research Advisory Committee on Gulf War
Veterans' Illnesses, which met with VA officials Tuesday.

For 23 years, Gulf War veterans have argued they were exposed to
toxins, such as pesticides, insect repellents, anti-nerve agent pills
and nerve agents that caused them to be sick. They've said they do not
believe their ailments are due to stress because of the war's short
duration and because the majority of troops were not exposed to the
fighting. But until 1997, the VA focused on psychological disorders
and not research to determine physical causes for the ailments.

In 1997, Congress mandated Binns' committee after a congressional
report found that the efforts to find causes and treatments for Gulf
War illness by government agencies were "irreparably flawed."

Binns said Klimas' use of research to create a plan to treat veterans
is what should have happened at the top level.

Robert Jesse, the VA's principal deputy undersecretary for health,
said the agency was trying to develop a "medical home" program that
would allow doctors to spend more time with specialty cases, such as
those involving Gulf War illness.

"This is a wholesale change in how we're approaching care in VA," Jesse said.

Relations between the VA and Binns' committee have long been
contentious and worsened last year when VA Secretary Eric Shinseki
signed a directive ending the panel's independence and ruling that
Binns' term would end this year. The board's budget was also reduced,
and new members were appointed.

New members of the board were at Tuesday's meeting.

Jesse said the "new membership is a good balance of veteran
representatives and good science."

Some veterans activists disagreed that progress had been made.

Julie Mock, who served as a dental hygienist in the war and was
exposed to sarin gas released when the United States bombed a chemical
factory, and who now suffers from Gulf War illness, said she feels the
VA is violating Congress' intent.

"There doesn't seem to be any accountability," she said after sitting
in on the meeting. "Congress mandated this research, and now VA has
reworked it to suit their needs."

Binns said a House hearing last March in which a former VA
epidemiologist claimed officials purposely hid or manipulated data to
avoid paying Gulf War illness claims changed relations with the

"We had three years of positive change," Binns said. "Then, abruptly,
the wind shifted."

Follow @kellyskennedy on Twitter.

Tuesday, January 7, 2014

E-BOOK Treating and Beating Fibromyalgia & Chronic Fatigue Syndrome

Fifth Edition now available (e-book now, hard copy later)
Dr. Murphree helped me.  I hope his book helps you.

Behind Closed Doors -- Occupy CFS

Note: Links to items mentioned are embedded in the webpage on the
Occupy CFS site.


Behind Closed Doors
January 6th, 2014
Jennie Spotila

There's an important meeting happening at NIH today and tomorrow, but
you probably know nothing about it. The secrecy of this meeting is
intentional, and the implications of decisions made at the meeting are
as far-reaching as the Institute of Medicine study. In fact, what I've
learned about the meeting may strike you as worse than the IOM study

January 6-7th is the first meeting of the Working Group for the
Pathways to Prevention Workshop on ME/CFS. You may be more familiar
with the old name for the meeting, the NIH Evidence-based Methodology
Workshop. At the May 2013 CFS Advisory Committee meeting, Dr. Susan
Maier clarified the purpose of the Workshop "is to identify
methodological and scientific weaknesses in a scientific area and move
the field forward through the unbiased and evidence-based assessment
of a very complex clinical issue."

Who Is On This Working Group?

Guess what? We don't know. 

<major snippage>

    - Finally, I can answer Question V myself: it's both. There are a
number of key clinician-researchers who maintain a clinical ME/CFS
practice and conduct research. For those individuals, their research
influences their clinical care and vice versa. But for the rest of the
world, we know that clinical care is completely divorced from ME/CFS research. Based on the horror stories we hear from patients, based on the dramatic under-diagnosis of the disease and simultaneous use of CFS as a wastebasket diagnosis, I think it is abundantly clear that research and clinical practice is separated by a great wall for most patients.

The Working Group's planning appears to be closed to the public, and
we have no input onto the final questions. We wouldn't even have this
draft list if I had not managed to file a successful FOIA request. The
anonymous Working Group will finalize the questions, and these will be
posted publicly – although we have no timeline for that.

Non-Experts By Design

Supposedly, the Working Group is made up of ME/CFS experts. That's the
impression Dr. Maier gave at the May 2013 meeting, and by the P2P
website. But the P2P Panel is a completely different story.
Panelists can be nominated by members of the Working Group BUT there
are significant restrictions on their expertise. Specifically, the

    - May be knowledgeable about the general topic under
consideration, but must not have published on or have a
publicly-stated opinion on the topic.
    - Must not have intellectual conflicts, such as participation in
statements by professional societies or participation in advocacy
groups on the topic.
    - Must not hold financial or career (research) interests in the
workshop topic.

Let's be very clear about what this means. If someone has ever published on or made a public statement about the diagnosis and treatment of ME/CFS, he/she is disqualified. If someone has
participated in statements from professional societies or participated
in advocacy groups, he/she is disqualified. If someone has a financial
or research interest in the diagnosis and treatment of ME/CFS, he/she
is disqualified. Furthermore, there is no public comment period on the
panel roster like there was for the IOM panel. In fact, it's not even
clear to me how far in advance we will know who has been appointed to
the panel.

If the IOM process makes you mad, then this process should make you furious. There will be no ME/CFS experts on the panel that writes the Workshop report identifying methodological and scientific weakness in
ME/CFS, suggesting research needs, and providing "an unbiased,
evidence-based assessment of a complex public health issue." The only
involvement of experts will be through the Working Group and through
the presentations made at the Workshop. I only see one upside to this
arrangement: anyone who has been associated with the psychogenic model
of ME/CFS will also be excluded.

If the P2P panel
is comprised of people with little ME/CFS knowledge and possibly
negative preconceptions, and the Workshop does not include significant
participation from ME/CFS patients and advocates, it seems unlikely
that the best results will be achieved. Based on our decades of
experience with misinformed scientists, clinicians, and policy makers,
it is very hard to trust in such a process.

So if you are worried about the lack of ME/CFS experts on the IOM
panel, or if you think that the public will not have a sufficient
opportunity to participate in the IOM process, pay attention! The NIH
P2P process looks even worse. We cannot lose sight of the forest for
the trees, and IOM is not the only moving piece on this chessboard.

What can we do? I believe that advocates must demand more information
about the P2P Workshop, and must demand meaningful opportunities to
participate. The planning and execution of the Workshop should be
transparent if it is to have any legitimacy in the advocacy community.
I urge you to participate in both the IOM and P2P processes at every
opportunity – ask questions, provide input, and present a united front
based on the truths we know about ME/CFS. We cannot wait until the end
of the P2P process to make our voices heard, especially since this
process will provide input into the IOM study.

Sunday, January 5, 2014

Fox News: Americans who receive Social Security disability are faking

Despite the rhetoric from Fox News and others in the right-wing media, five times as many Americans have a disability compared to those who actually receive disability benefits. According the Social Security Administration and the United States Census Bureau, while 1 in 25 Americans currently receive disability benefits, nearly 57 million Americans, 1 in 5, have a disability.
* * *
Fox also makes it sound like you just walk in and say "gimme money".  The facts are that there is a thorough investigation, and most applicants have to go before a judge at least once -- waiting a couple of years before they get that hearing.
I waited 11 years before I was approved.  The judge said "you look healthy to me", the Court of Appeal agreed that my medical records showed I wasn't as healthy as I looked, and repeatedly sent it back to him with the order to have a doctor at the next hearing.  He refused.  When the Court of Appeal finally said "have a doctor there or else!", he had a psychologist who'd never treated CFS, rather than an MD who could explain the wonky blood test results.
Trust me, this is not something you do on a whim.  It's a long haul, and a good many truly disabled people either give up or die before getting approved for benefits.