Saturday, December 28, 2013

One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis

 
It's called the Vagus Nerve Infection Theory for ME/CFS and it's got a lot of people excited. Check it out on Simmaron Rising at

http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/
 
"The vagus nerve isn't just any nerve; it's the nervous system's immune conduit to the brain. VE believes that an infection there doesn't need to be large to cause havoc in the brain; it just needs to be present."
 
"Not surprisingly,  the rodents looked and acted sick – the cytokines were doing their job to keep the animal down and isolated – but  no trace of those cytokines could be found  in their bloodstream.  Only if the animal's spinal cord was sampled near where the 'infection' was  it possible to find any evidence of increased cytokine levels."
 
 * * *
Many of my symptoms are compatible with vagus nerve problems.  But, of course, because I have no background in the sciences, there was no way I was ever going to convince a doctor of something this bizarre, so I didn't even try.

Tuesday, December 17, 2013

Registration open: IACFS/ME Conference March 20-23 San Francisco

From Lily Chu:

The International Association for Chronic Fatigue Syndrome/ Myalgic
Encephaloymyelitis would like to invite clinicians, scientists,
patients, their families, and supporters to our 11th Biennial
International Clinical and Research Conference. This meeting is being
supported by Stanford University's ME/CFS Initiative and will be held
in San Francisco March 20-23, 2014.  Register for the Conference
before January 31, 2014 to assure you have a seat for the lowest
price!

[Please share with and forward your friends, acquaintances, healthcare
providers, etc. Note that healthcare providers includes not only
physicians but other healthcare workers also (nurses, psychologists,
physical/ occupational therapists, pharmacists, etc.). Don't forget
alternative/ complementary medicine providers. We also offer discounts
for trainees (students at all levels or early career professionals).]

WHERE: Parc 55 Hotel, San Francisco, CA, USA
              http://www.parc55hotel.com/

WHEN: March 20-23, 2014

WHY: Highlights of this meeting include:

          - Special guest speakers Dr. Ian Lipkin, Dr. Abraham
Verghese, and Dr. Noel Rose

          - March 20 Patient Conference with talks by an all-star cast
of physicians and researchers specializing in ME/CFS
            Patient Agenda: http://tinyurl.com/lw8wdtt

          - March 21-23 - 3 days of cutting-edge ME/CFS research
presented by scientists/ physicians from all across the US and world
            Professional Agenda: http://tinyurl.com/md49fps
            Continuing medical education credits are offered for
physicians, nurses, and pharmacists.

          - March 22 Evening banquet with gluten-free/ dairy-free/
vegetarian/ vegan choices

          - "Quiet Room" with recliners/ chairs to rest - open all 4
days of Conference to all

          - Conference attendees will be asked to be "fragrance free"
as possible

          -- Parc 55 Hotel public areas and rooms have features to
accommodate those with disabilities:
             http://tinyurl.com/k42mdnw


          -- Visit the lovely city of San Francisco in Spring - famous
for for its spectacular natural setting, food, cultural diversity,
             entertainment!  http://www.sanfrancisco.travel/


HOW: Professionals may choose to attend all 4 days (March 20 Workshops
included) or for only 3 days (March 21-23 research presentations).
Discounts are available for students, trainees, and early career
professionals. For professional registration, click here:
http://tinyurl.com/m4jwsml

Patients and their supporters may choose to attend the Patient
Conference (1 day) only OR all 4 days of the Conference.
Evening banquet tickets are sold separately. For patient/ supporter
registration, click on this link: http://tinyurl.com/k8htj6h
Patients are responsible for their own hotel and transportation
expenses. For some individuals, medical conference registration fees
and
transportation to the meeting may be tax-deductible. Please check with
your tax advisor.

LATE-BREAKING ABSTRACT DEADLINE - JANUARY 15, 2014: Professionals,
have a clinical case or research findings you want to present at the
meeting?  We have extended our deadline for poster presentations to
January 15, 2014. To submit:

http://www.iacfsme.org/Conferences/2014LateBreakingAbstracts/tabid/541/Default.aspx

SUPPORT THE CONFERENCE! : Want to support this conference and the
other services IACFS/ME provides? Consider donating to, advertising
at, or sponsoring the conference! Contributions are tax-deductible.
See here for more details: http://tinyurl.com/mq3bbud.





************************************************************************************************************************************************************************************
Join me and IACFS/ME  for the 11th International  Myalgic
Encephalomyelitis/ Chronic Fatigue Syndrome Scientific Conference
March 20-23, 2014 in San Francisco.

Everyone - patients/ caregivers/ healthcare providers/ researchers - is invited!

For more details, visit www.iacfsme.org to sign up for updates.

Monday, December 16, 2013

A Brief Tour Through Some Common Topics in M.E. Science

 
What I was met with was a severely fractured literature, ranging from the psychological through to severe and irreversible neurological damage. As I continued my research it became clear that no one really had any idea so thousands of ideas were being thrown about with little evidence to let one rise above the others.
 
... It soon became clear that while there are many competing hypotheses, there at least exists a large bank of evidence supporting a physiological causation for the disease.
 
... Unfortunately we are not yet at a point where any leading causation for ME has been found, so conventional medicine provides little help.
 
* * *
And there's the key -- unlike cancer, where they can surgically remove the problem, or chemo/radiation it into submission, there's nothing Modern Medical Science can do for ME/CFS.  There are "bandaid approaches", here are some pain pills, some sleeping pills, some cough syrup, but nothing that FIXES the problem.
 
So please don't think that I'm not doing everything possible when I tell you that I'm not in active treatment.  There aren't any pills, shots, surgeries that can cure me.
 
 

The 2-Day CPET, the CDC, and the IOM - Mary Schweitzer Explains It All

 
(excerpts)

A gung-ho young athlete who is improperly trained can screw himself up with too much anaerobic exercise, and then his/her body will just refuse to keep going - for up to 3 weeks. That is called "over-training syndrome."

Professional and collegiate trainers keep close tabs on their athletes because of this.

For some reason our bodies shift into anaerobic metabolism (generally anything that sends our heart rates over 100) too soon. In my case, just walking does it when I'm sick. So you could say that our bodies are responding to "normal" activities as if we were athletes pushing too hard, that is, to a certain degree we are perpetually in the midst of "overtraining syndrome."

They use the VO2 MAX test (or CPET - Cardio-Pulmonary Exercise Testing) to measure this.

... The amazing thing Staci Stevens and Chris Snell found was that high-functioning patients may score the same as deconditioned controls (the afore-mentioned couch potatoes) in one day of exercise - but on the SECOND day, the controls' scores don't change, whereas the patients' scores plummet IN HALF.

Which makes sense if you have a good understanding of this disease. But is really quite an astonishing finding for outsiders.

... CDC's explanation for not doing the two-day test is that it would be an imposition for patients. But both Staci and Chris found that while the deconditioned controls could get whiney about having to do the test, patients with ME/CFS (Canadian) would walk on hot coals if it would move the science of this disease further along.

Christopher R. Snell, Staci R. Stevens, Todd E. Davenport, and J. Mark Van Ness. "Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome." Physical Therapy (2013). Click HERE for the abstract.

* * *

Yet another bit of proof that this is physical, not psychological, which the powers that be don't want to become common knowledge.  If more CFS patients get this testing, then SSDI has to pay more Disability claims, because the patients now have objective medical evidence of impairment.  And private disability insurance, which often contains a limitation of 2 years for mental illness, while physical illness is paid to age 65, would also have to stop categorizing CFS as psychiatric in order to save money.

 

Monday, December 9, 2013

We Will Not Be Accomplices in ‘Harming Patient Care’ (or, Assimilate This!)

(Permission to repost in full)

National Alliance for Myalgic Encephalomyelitis
Dec 5, 2013

We Will Not Be Accomplices in 'Harming Patient Care'
(or, Assimilate This!)

1) In the past few months, over 200 ME & CFS Experts and Advocates
worldwide rightfully, authoritatively asserted to government officials
that failure by the US Dept of Health and Human Services (HHS) to
acknowledge more recent and developing clinical definitions and research
consensus criteria "…will significantly impede research and harm patient
care."

They did this for very good reason, we believe.The consensus criteria
cited (CCC; ICC) are developed and endorsed by ME & CFS experts,
independent of historically and currently manipulative government health
agencies. An appropriate and justified move, given the history and lack
of meaningful change on the part of the government.

But US health agencies are repeating history.They are harming patient
care. Veterans of this disease know the drill.

For at least the fourth time, with a disease they've historically badly
misrepresented (much to the harm of both patients and researchers), US
health agencies are attempting to again wrest control, this time over
consensus criteria by experts who have the rightful, appropriate
authority to write and endorsed these peer-reviewed criteria.

US health agencies are wresting control – coercing submission yet again
– over scores of unsuspecting patients who embody these expert criteria.
As if government knows best. (Is it any wonder the international
community as a whole views the US government as arrogant and
self-important?)

With blatant disregard of fervent protest from a majority of experts and
patients who now know better, at warp speed, HHS hired a no-bid National
Academies contractor (IOM) to cobble the government's chosen versions of
several definitions with its own questionable CDC 'current research'.

Such an annexation would consume unadulterated M.E. into a pool of
vaguely defined, multi-symptom, fatiguing illnesses, primary treatments
being CBT and GET.

One might suggest this is embellishing, speculation.Well, all one has to
do is look at IOM's current understanding of "CFS" in their latest Gulf
War Illness work of impressionistic art. (Boy, is the proof ever in THAT
pudding!...)

(…See pp. 22, 29, 99, 203 in "Treatment for Chronic Multisymptom Illness
(2013)" http://books.nap.edu/catalog.php?record_id=13539 )

Many, many other failures of this transaction from its questionable
start to its shortcomings revealed with selected bits of info stumbling
clumsily out from nameless sources, and resulting conflicts of interest,
have been addressed clearly elsewhere.

Resistance is Futile?

2) So, with little effort, the massive HHS & IOM 'Borg cube'
conveniently raise their shields and bulldoze through a host of some 17
million battle-weary but dedicated experts, advocates, seriously ill
patients (most impoverished and invisible) and overburdened caregivers
from around the planet on a suddenly-urgent, single-minded Mission.

The giants' Mission: to assimilate a patient cohort with an
extraordinarily complex disease into a "collective" of "drones" whose
zombie-like state is easily explained to nurse practitioners and busy
GPs. (Making quality of life better for whom?)

Envision the ME & CFS Community, collateral damage, pebble-sized dark
matter drifting through space in thousands of small pieces in the wake
trailing these massive, self-important entities (HHS & IOM).

Oh, right. That's not science-fiction.That's the past and current state
of ME & CFS patients and researchers from the government's standpoint,
thanks to our community repeatedly bowing in subservience to HHS.
Outcome frighteningly predictable: relevant data rejection; similar
repeated past and recent experimentation using frighteningly similar
strategies.

Too late? We've established that Mission's pre-launch and launch has
already harmed patients. History repeats. (See ICC Primer description of
PENE, p.2 – it applies to all patients who have over-exerted, repeatedly
voicing their concerns – needlessly, we feel, because this HHS-IOM
blunder is wholly unnecessary. Costly in far more than dollars.)

…Ah, but what's this, right in our own solar system, not light years
away? Not even 18 months away? Boldly going where… well… we expected to
go without a $1M contract involving non-experts? "Immune Abnormalities
in Patients Meeting New Diagnostic Criteria for Chronic Fatigue Syndrome
/ Myalgic Encephalomyelitis"

http://tinyurl.com/n6y9ump

Resistance is not futile!

No Surprises Here

3) ME & CFS experts and their supporting advocates also affirm, "Worse,
this effort threatens to move ME/CFS science backward by engaging
non-experts in the development of a case definition for a complex
disease about which they are not knowledgeable."

No surprise: A panel chosen by unknowns, alien to this disease – the
majority of this panel are non- ME/CFS experts – has been announced. And,
sadly, supported by an ill-advised few, disengaging many.

A few of our respected experts have, curiously, agreed to serve on this
panel. Even ones who said they were opposed to this endeavor. Though we
support and are eternally grateful for the exceptional work they have
done for ME & cfs patients, we do not support their participation in
this unapproved 'study'… unless it is their goal to nullify it, if based
on nothing else but the very nature of its inception. Ideally, they will
confirm that no ME/CFS experts will agree to participate, invalidating
the 'study'.

As Sure As There Are Stars In The Sky

4) ME & CFS community members by the thousands all over the planet have
raised historically inaudible voices in resounding support of their
experts' statements. They mince no words.

So if it isn't already clear as the Universe is deep: By virtue of the
resounding affirmations of the worldwide ME & CFS community, National
Alliance for Myalgic Encephalomyelitis stands fast (despite exacerbated
orthostatic intolerance) and refuses to acknowledge the HHS initiated
IOM 'study'. We will not provide input. We reject it as illegitimate. We do
not recognize the committee as a whole as standing for M.E.

By the nature of its backroom creation, objected to almost unanimously
by the very community it is supposed to be serving, using our tax
dollars, we deem any outcome of this 'study' invalid – unless the
outcome is swift termination of the contract, based on many valid
objections already voiced and formally submitted to authorities.

To cooperate with this 'study' in any way is to validate it.Some may
believe "resistance is futile." But we will not be assimilated. We will
not be accomplices in 'harming patient care'.

We will not enable 'moving the science backward'; we will not
time-travel back into the hands of the very same main-stream medical
establishment that has vaporized ME, assimilated it into the "'CFS'
Fatigue Collective", harming severely ill patients for nearly 30 years.

We urge the ME & CFS community, professional and non-professional, to
stand fast and invalidate this 'study' by refusing to cooperate in any way.

(It's easy for anyone with light hypersensitivity to ignore that bright
red brain-searing font, the threatening countdown, and tempting
"Feedback" button at the bottom of the IOM committee page. In reality,
the science-fiction there will not incinerate your computer or your
brain if you just ignore it.)

For more fictional fun, see HHS & IOM – FAQs & Fiction
http://name-us.org/AdvocacyPages/HHS_IOM_FAQs_FICTION.htm

Happy Holidays! Engage… in something fun!

Locutus Ventura
www.name-us.org

"We are the Borg. Your biological and technological distinctiveness will
be added to our own. Resistance is futile."

(Footnote:For non-Trekkies, about Borg:
http://en.wikipedia.org/wiki/Borg_%28Star_Trek%29 :-)

Friday, December 6, 2013

Time For A Patient Revolution!

Time For A Patient Revolution!

Simon McGrath begins a series of advocacy related posts arguing that a
badly broken medical system that reflects institutional desires more
than patients needs is ripe for a 'Patient Revolution'.

A medical community that has virtually ignored ME/CFS is exhibit A of
this, of course, but Simon suggests the internet is spawning a medical
revolution in which patients voices cannot be ignored, and
demonstrates out how this trend is impacting ME/CFS for the better in

Time For A Patient Revolution!
http://bit.ly/1cfGd2r
http://www.cortjohnson.org/blog/2013/12/03/time-patient-revolution/

Thursday, December 5, 2013

California -- Apply as OES Disability Representatives

Please circulate to your contacts in California....
 
N.B., when you click on the application link, the webpage will come up "navigation cancelled", but if you wait a bit, you'll get a pop-up to download the application.
 
From: info@disabilityorganizing.net
Sent: 12/5/2013 11:37:16 A.M. Pacific Standard Time
Subj: APPLY TODAY! Governor Seeks Disability Representatives for Workgroups
APPLY TODAY! Governor Seeks Disability Representatives for Workgroups

Dear Community Partners:

I am pleased to announce the California Governor's Office of Emergency Services (Cal OES) application process to integrate disability representatives on Emergency Function (EF) workgroups. Each EF is led by a State Agency and is designed to bring together discipline specific stakeholders to collaborate and support all phases of emergency management: prevention, preparedness, response, recovery, and mitigation. Therefore, we are expanding the California EF workgroups to include representatives from the disability communities. 



As background, Senate Bill 1451 (Kehoe, Chapter 600, Statutes of 2006) was enacted requiring the Cal OES Director to appoint representatives from the disability communities on the evacuation, sheltering, communication, recovery, volunteer and other pertinent Standardized Emergency Management System (SEMS) committees, as well as the SEMS Technical Working Group. Although most specialist committees have been dissolved over time due to the implementation of EF process, I embrace the purpose and intent of SB 1451 to include the expertise and experience of the disability communities. The bill requires that representatives should be, to the extent practicable, from the following groups:



1. People who are blind and/or have low vision

2. People with other sensory needs, such as deaf and hard of hearing

3. People with cognitive/intellectual disabilities

4. People with physical disabilities



Attached is the application to complete, as well as additional information on the EF?s. Please share this information with anyone who might be interested in applying. We would appreciate receiving applications no later than Friday, December 20, 2013, and plan to assign representation in January 2014. Thank you in advance for your assistance.



If you require more information or assistance in this matter, please contact Richard Devylder, Office for Access and Functional Needs at (916) 845-8981 or email at: richard.devylder@caloes.ca.gov



Sincerely,

MARK S. GHILARDUCCI

Director



Download link for Letter: Community Letter Emergency Functions

Download link for Application: EF Disability Rep Application

Monday, December 2, 2013

Fibromyalgia Breakthrough - Treat The Causes, Not Just The Symptoms

 
The only ones benefiting from lifelong symptom treatments associated with chronic fatigue syndrome, lupus, autoimmune disease, or fibromyalgia are the pharmaceutical companies who sell billions in medication to treat them. A long list of pain medications, sleep-aids, anti-depressants, and anti-inflammatories are not sufficient because the diagnosis is incorrect. Instead, let's look at what the possible causes are to these diseases. 
 
See more at: http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease#sthash.HdgHqujD.dpuf

Sunday, December 1, 2013

Earnings and the disabled who go back to work

 
If you want to go back to work after a period of Disability, be sure you contact SSDI and discuss their Ticket to Work program, to make sure you don't end up losing your benefits.
 
Those earnings limits are no joke; they're strictly enforced.
 
Remember, you're no longer deducting huge amounts for health insurance premiums to reach your allowable income; once you're on SSDI, it's just $100 a month for Medicare, which could in and of itself put you over the limit.
 
 

Saturday, November 30, 2013

How To Work From Home -- Woman's Day Magazine

 
 
 
Need to work lying down?  Need long rest periods for naps?  Try these jobs!

Tuesday, November 26, 2013

Doctors who call patients hypochondriacs are committing malpractice

 
 

"In short: physical complaints are never to be dismissed, no matter what their cause"

* * *

I believe it was Dr. Starlanyl who said "if all tests are normal, it just means the correct test hasn't been done yet."

Dr. Bell notes that fully half of those initially told "it's all in your head" are eventually diagnosed with a very real disease with symptoms compatible with what they originally reported.

Next time someone calls you a hypochondriac, help yourself to those two arguments.  I was told for years that there was no proof, no proof, no proof ... until I tried to enroll in a clinical trial.  As part of the qualification process, they did a C-Reactive Protein test, which was so "off the charts" that they were convinced it had to be lab error, so I went back to have more blood drawn.  That result was even higher.  For some reason, no one had ever done that test on me before, yet when it was finally done, the result was 10x normal ... on a day when I actually felt up to taking multiple buses to get to the testing site.  How high would the numbers have been at the point that I was too sick to even get out of bed?!

I was out of the clinical trial as a result of that test, but I finally had indisputable, un-fakeable proof that there is something very wrong in my body that has nothing to do with my mind.

 

 

 

Wednesday, November 20, 2013

The Most Prevalent Disease Your Doctor Has Never Heard Of

http://www.huffingtonpost.com/jennifer-brea/myalgic-encephalomyelitis_b_4303725.html

The Most Prevalent and Devastating Disease Your Doctor Has Never Heard Of
Jennifer Brea
Director, 'Canary in a Coal Mine'
Posted: 11/20/2013 9:43 am


Every Disease Is a Story

Three years ago February, I was sitting in a restaurant, about to sign
the check, when I realized I had forgotten how to write my own name.

The intention was there. I could visualize the letter J. I could even
imagine what it would be like to write it, but I could not for the
life of me figure out how to move my hand. I was 28 years old. I had
temporarily lost the ability to draw circles or curves. By May, if I
left my house, it was in a wheelchair. Mostly, I was bedridden. Some
days, I did not have the strength to lift my head.

Naturally, I turned to my doctors for answers. I learned that having
access to the health care system is about a lot more than having
health insurance.

Without knowing it, I'd told myself a story: If I ever got sick, it
would be like an episode of House, only with less Percocet. A team of
brilliant doctors from different specialties passionately debating my
case. A deep curiosity and desire to get to the bottom of it. A love
of the puzzle. And I would not be lying idly in my sickbed. I'd be
busy trying to unravel the mystery, too.

My doctors were not particularly interested in getting to the bottom
of anything. Instead, after a few basic tests, they told me that my
symptoms were not real. I was diagnosed with conversion disorder -- a
nicer, modern version of "hysteria." In their story, symptoms they
could not explain needed to be explained away.

Not wanting to be one to reject a hypothesis without testing it, I
decided to live with the possibility for a few days that all of it --
the recurrent infections, the fevers, the dizziness, the bizarre
neurological symptoms -- really was, as my neurologist believed, all
in my head.

I walked home a mile from the clinic that day, ignoring the ostensibly
psychosomatic pain in my legs. The next day, I went for a walk down by
the river with a friend. I'd always been active. I didn't know then
how dangerous physical exertion could be. When I got home, I
collapsed. I could not bend my head or walk. My brain and my spinal
cord were burning. I have never been the same since.

Myalgic Encephalomyelitis: An Old Disease Hiding in a Waste Basket

When we first get sick, many patients who are eventually diagnosed
with myalgic (muscle pain) encephalomyelitis (inflammation of the
brain and spinal cord), encounter doctors who do not believe they are
ill. They tell them their symptoms cannot be medically explained.

These beliefs are about professional training, not science. ME is not
taught in medical schools. It has no home in any specialty. Without
medical education, despite well over 6,000 scientific articles
published on the disease, and the 1 million people who suffer from it
in the US (over 20 million around the world), it may as well not
exist.

ME is an old disease. There have been dozens of documented outbreaks
in the last 100 years. Before widespread vaccination, doctors believed
it was a new type of poliomyelitis, and in fact, clusters often
appeared in areas that were experiencing polio outbreaks.

The outbreak that looms largest in American memory occurred in 1984,
in Incline Village, Nevada. Dubbed by the media "the Lake Tahoe
mystery illness" and "Yuppie Flu," the U.S. government named it
"Chronic Fatigue Syndrome."

The diagnostic criteria were broad, vague and bore only a passing
resemblance to the disease doctors treating patients in Lake Tahoe,
and the accounts by physicians who witnessed other outbreaks,
observed. Chronic Fatigue Syndrome became a waste basket of a category
that lumped myalgic encephalomyelitis together with a number of
undiagnosed or misdiagnosed conditions like post-viral fatigue, lyme
disease, celiac disease, and depression.

ME has all the makings of a very scary movie. It can affect anyone at
any stage of life but seems to prefer to hit young women in their
prime. Like polio or multiple sclerosis, it can occur in seemingly
unconnected individuals and it can also occur in outbreaks. In most
cases, there seems to be a viral trigger, but genetic and
environmental factors likely play an important role.

The disability is more severe than many types of cancer, or AIDS two
months before death. Dr. Nancy Klimas, a leading researcher, describes
the severity as equivalent to congestive heart failure, only it rarely
kills. It shortens your lifespan. It turns your body into a prison and
locks you away for decades. That has been one part of the problem: We
don't have a narrative for a disease that is a life sentence.

It is similar in many respects to multiple sclerosis, but three times
more prevalent. Some estimates suggest as few as 5-10 percent achieve
full remission. Twenty-five percent cannot leave their homes. Many are
bedridden for years.

Yet, Chronic Fatigue Syndrome is an idea that strikes fear in the
heart of no one.

What happens when, for decades, the story among doctors is that a
serious illness is psychosomatic? For starters, there is no
FDA-approved drug nor are their any drugs in the pipeline. In fact, it
is unclear what, if anything, any aspect of our medical system -- the
government, academia, or industry -- has done in the last 30 years to
make this devastating disease a priority. There is $3 million in
federal funding for "CFS" each year, $16 million for male pattern
baldness.

What's maddening is that science tells a different story entirely.
Studies show severe immunological abnormalities -- damage that,
according to Mady Hornig, a professor at Columbia and principal
investigator of a project to uncover the pathogens responsible for
triggering ME, is unlikely to be caused by anything other than an
infectious agent. They show distinct abnormalities in spinal fluid,
EEGs, and SPECT scans; bodies ravaged by opportunistic infection;
pathological alterations in the bacteria living in our guts. And that
physical exertion, that same exercise that is recommended for nearly
everyone, healthy or sick, causes abnormal gene expression.

Who Gets to Define a Disease?

There is a new effort underway to close the gap between medicine and
science. The Institute of Medicine (IOM), under contract by the
Department of Health and Human Services, is assembling a panel of
clinicians and researchers to devise a new definition for the disease.
On the face, this is a good thing and long overdue. It's a chance to
get the story straight.

Yet, nearly every expert who would be qualified to serve on that
committee is publicly opposed to it. Not to mention many patient
leaders. Some consider this the most important crises the patient
community has faced since the 1980s.

Why the uproar? First, it is an expensive process: $1 million in
public funds that could otherwise be used for biomedical research when
there's already a newer definition many doctors around the world who
specialize in treating patients with ME have been using for years.

The real concern is that what will come out of the IOM is a story that
will condemn us to the same fate we've been living for thirty years:
nearly no public funding for research; a medical system that often
abuses patients; and no real treatment, outside of a handful of
clinics that probably can't take health insurance.

Earlier this year, the IOM publicly advocated cognitive behavioral
therapy, antidepressants, and exercise for ME: the same paradigm my
doctor was operating under when he told me my illness was
psychosomatic; the day before I over-exerted myself and was never the
same again.

I was one of the more than 170 patient advocates who signed an open
letter asking HHS to cancel the IOM contract. Many patients would say
that a democratic government taking an action that virtually all of
its constituents oppose is about dirty politics. There's probably some
truth to that. I would like to believe that part of it is a matter of
being profoundly out of touch.

There is something elusive in the nature of the illness such that
unless you live it, or live with and care for someone who does, it's
almost impossible understand or describe. You might come close after
decades of treating patients. At every turn, language fails.

I am making a documentary film about ME not because I have any
illusion that a film is a cure or that a film on its own can change
policy. Rather, so much of the suffering that comes with this disease
is needless and borne of ignorance. For too long, we've let others
tell our story.

It's hard for me not to wonder if the first doctors I saw had been
told a different story about my disease, if they had the experience to
recognize what was unfolding before I did, and advocated complete bed
rest, if I had never gone on those "healthful" walks, how my story
might be different today.

And what might happen to the next generation of patients if we don't
have a say in how our own story is written.

Follow Jennifer Brea on Twitter: www.twitter.com/jenbrea

Friday, November 15, 2013

Results of treatment of 741 Italian patients

http://www.europeanreview.org/article/5782
fulltext- http://www.europeanreview.org/wp/wp-content/uploads/2847-2852.pdf

Eur Rev Med Pharmacol Sci 2013; 17 (21): 2847-2852
Treatment of 741 italian patients with chronic fatigue syndrome
U. Tirelli, A. Lleshi, M. Berretta, M. Spina, R. Talamini, A. Giacalone

Department of Medical Oncology, Division of Medical Oncology A,
National Cancer Institute of Aviano, Pordenone, Italy. oma@cro.it

BACKGROUND: Chronic Fatigue Syndrome (CFS) is a distinctive syndrome
characterized by specific symptoms cluster. CFS mostly affects women
and often results in severe functional limitation. Its prevalence
varies from 0.4 to 2.5% in the general population. In our prior
studies on the clinical features of 205 CFS patients we founded
immunological and brain abnormalities. In this paper we illustrate our
caseload on CFS treatment.

PATIENTS AND METHODS: From January 2000 to December 2005, we evaluated
all the patients admitted at the CFS Unit of the Aviano National
Cancer Institute, for staging procedures and treatments. Patients not
meeting the Fukuda diagnostic criteria were excluded.

RESULTS: 250 male and 491 female (median age 35.5 and 39.3 years,
respectively) were enrolled and treated for CFS. As expected, CFS
resulted from previous infectious disease in all patients.
Female
patients showed to be more affected by symptoms than male patients.
The treatment schedules followed by the patients included nutritional supplements alone, corticosteroids, antidepressant/sedative drugs, and antiviral/immunoglobulin drugs. Antiviral/ immunoglobulin drugs achieved the best response (15.3% positive responses vs. 8.3% negative
responses; OR 0.44, CI 0.26-0.74, p = 0.002). The carrying out of 4 or
more treatments showed a protective effect (OR 0.46, CI 0.28-0.77, p =
0.003). This finding was confirmed in the multivariate analysis,
adjusted by type of drugs (OR 0.49, CI 0.28-0.84, p = 0.009) and
number of treatments carried out (OR 0.51, CI 0.30-0.86, p = 0.01);
these two variables were independent.

CONCLUSIONS: These findings show that the antiviral/immunoglobulin
approach has a longer positive disease free survival in comparison
with other approaches.
However, CSF still remains a difficult disease
to be effectively treated.

Thursday, November 14, 2013

Poverty and iPhones

 
 
When I became disabled, the government did not automatically confiscate my house, my 401k, my nice clothes, my computer...
 
Nor (despite what some people think) did I run right down to apply for food stamps.  At the point that I was criticized by someone I know only online about the good quality food I was buying, I was getting no govt money of any sort.  My Unemployment had run out, I was too sick to spend a day at the welfare office applying for food stamps, had too many assets to qualify for other government programs. 
 
The money I was spending on groceries came from my own savings account, money that I'd saved while working.  So, even leaving aside the question of whether it's anyone else's business what type of food you buy with food stamps, it truly was no one else's business how I was spending my own hard-earned money.
 
It took me 11 years from the day I lost my job until the day I got approved for SSDI.  Since they only need to pay you 10 years of back benefits, I got screwed out of a year of payments.  And my SSDI is higher than the income limit for food stamps, so I can definitively say that if I haven't used them to this point in my life, I will never ever be able to qualify for them.
 
But it says something that my critics assumed (perhaps because it's what they themselves do) that every person who loses their job immediately runs down to apply for food stamps.  I didn't need them; I had money in the bank, I was able to cash in my life insurance (unneeded now that I have no dependents) for several thousand dollars that had built up in that policy, I wasn't destitute yet.
 
 

Wednesday, November 6, 2013

How to Understand Someone With Chronic Pain - wikiHow

 
"Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would."

* * *
I can't tell you how many reasonably intelligent people have told me to exercise my way back to health, and called me a liar for saying that would actually make matters worse.
 
In point of fact, I'm already doing more than the experts think I should be doing.  The advice you SHOULD be giving me is "rest more". 

Tuesday, November 5, 2013

Pain Scale Descriptions

Pain Scale by Jeanne Hess, RN


0 Absence of discomfort

1 Mild pain. Under your conscious radar. Does not interfere with
ability to concentrate or perform activities.

2 Discomforting pain. You are periodically aware of discomfort, which
subsides with rest, distraction (pleasant activity, music, conversation),
change of position, etc.

3 Tolerable, yet annoying pain. NOW is the time to treat with
medication in conjunction with comfort measures. Allows best opportunity for
effective pain control with the least medication.

4 Pain has your full attention now. "Why didn't I initiate comfort
measures and medication sooner?"

5 Moderate pain. Constant, sometimes nauseating pain. Lack of
appetite, difficulty concentrating. Begin to isolate self from noise, activity.

6 Grueling, numbing pain. Body tense. Nausea, intolerance for cold,
noise and activity increase, mood sinks and increased withdrawal. "Leave me
alone."

7 Miserable, agonizing, gnawing pain. "When is SOMETHING going to
help?"

8 Horrible, vicious pain. Jaws clenched, respirations rapid &
shallow. "WHY isn't anything helping?"

9 Consumed by torturing, crushing unbearable pain. "Get me help NOW!"

10 Physiologically intolerable pain. Loss of consciousness.

Thursday, October 31, 2013

'Canary In a Coal Mine' Examines Chronic Fatigue Syndrome -- VIDEO

'Canary In a Coal Mine' Examines Chronic Fatigue Syndrome

http://abcnews.go.com/Health/video/canary-coal-mine-examines-chronic-fatigue-syndrome-20727717
__._,_.___
 

NJ Woman Bedridden by 'Devastating Disease Doctors Have Never Heard

 
 
There's a link in the article to the film's Kickstarter campaign.  Ask your friends and family to donate.
 
 

Tuesday, October 29, 2013

Fibromyalgia Mystery Finally Solved!

 
"When are they ever going to figure out that things are never "all in your head?" said one commenter. "Whenever something doesn't fit in their tiny little understanding, they belittle the patient and tell them they are crazy. People have suffered through this since they were invented. Prescribing SSRIs for everything is not the answer any more than a lobotomy or hysterectomy was."

Friday, October 25, 2013

Do You Take Vicodin?

 
The U.S. Food and Drug Administration Thursday recommended strict new rules governing how doctors prescribe hydrocodone-based pain pills, which have been abused by millions of Americans.

The FDA's new policy, expected to be approved later this year, changes the classification of painkillers containing hydrocodone to Schedule II from Schedule III drugs, making them harder to obtain.

... The reclassification is expected to be approved by the U.S. Department of Health and Human Services and formally adopted by the Drug Enforcement Administration. The change could take effect next year.

The FDA reclassification would require patients to take prescriptions for hydrocodone-based pain pills to a pharmacy, where now they can have doctors call in a prescription. The new rules also allow for fewer refills before a patient must return to a doctor's office for a new prescription.

Thursday, October 24, 2013

F.D.A. Seeks Tighter Control on Prescriptions for Class of Painkillers

F.D.A. Seeks Tighter Control on Prescriptions for Class of Painkillers
The Food and Drug Administration on Thursday recommended tighter controls on how doctors prescribe the most commonly used narcotic painkillers.
The move, which represents a major policy shift, follows a decade-long debate over whether the widely abused drugs, which contain the narcotic hydrocodone, should be controlled as tightly as more powerful painkillers such as OxyContin.
The drugs at issue contain a combination of hydrocodone and an over-the-counter painkiller like acetaminophen or aspirin and are sold either as generics or under brand names like Vicodin or Lortab. Doctors use the medications to treat pain from injuries, arthritis, dental extractions and other problems.

READ MORE »

http://www.nytimes.com/2013/10/25/business/fda-seeks-tighter-control-on-prescriptions-for-class-of-painkillers.html?emc=edit_na_20131024

Christmas! | Carole...

 
 
"It's very hurtful when friends and family move on with their lives and leave me behind…like a once loved and treasured teddy bear who is now stored away in an affectionate cupboard of their lives but no longer cared enough about to want to come and see"
 
* * *
 
The first year I was on my own, I called everyone I could think of and they all had excuses why I couldn't join them on Christmas.
 
Due to delivery glitches, the mailed gifts from my aunt and my good friend didn't arrive on time, so I sat there on Christmas looking at a pile of gifts under the tree, things I'd painstakingly handmade or carefully shopped for ... for people who didn't give a damn that I was alone on Christmas.  But not one single thing under the tree for me to open.  And several of the people I had gifts for, when I mentioned it to them after the holidays, they were "too busy" to come fetch them and wanted me to spend more money mailing the gifts to them.  It wasn't even worth coming to see me if they knew they were getting a gift in return.
 
The same thing the next year -- I again tried to wangle an invitation and no one wanted me, but at least this time I hadn't wasted the effort of getting presents for anyone.  And will never again waste time getting presents for anyone until I actually have an invitation in hand for Christmas.  If I'm not worth their time to spend Christmas with, then they're not worth my time in getting a present for them.
 
 

Wednesday, October 23, 2013

Here's an oldie but goodie

 
Myths, with research cites: http://www.aacfs.org/images/pdfs/myths.pdf

November CFSAC postponed to December

Note: From CFSAC listserv-

Due to the shutdown of the federal government, the next CFSAC meeting
is being postponed until December 10-11, 2013 from 12:00 p.m. to 5:00
p.m. (EDT).  The agenda will be posted on the CFSAC website no later
than November 15, 2013.

We now have the capacity to accept pre-recorded video testimony for
public comment and will continue to schedule public comment via phone
and accept written submissions.  The Federal Register Notice will be
posted no later than November 18 and include detailed instructions for
joining the webinar and requesting public comment.  Information will
also be posted on the CFSAC website at www.hhs.gov/advcomcfs.

Please know that we value your involvement and regret any
inconvenience that this delay may have caused you.  Thank you for your
patience as we work through this challenging time.

Thank you,
CFSAC Support Team


The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

Learn more about the Health Insurance Marketplace at HealthCare.gov!

Should Morgan Freeman Speak Out About Fibromyalgia?

Tuesday, October 22, 2013

Nominations for CFSAC due

Note: From the CFSAC listserv-

Reminder:  nominations for CFSAC members are due by 5pm ET on Oct. 28.

The Office of the Assistant Secretary for Health (OASH), within the
Department of Health and Human Services (HHS), is seeking nominations
of qualified candidates to be considered for appointment as a member
of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).   CFSAC
provides advice and recommendations to the Secretary of HHS, through
the Assistant Secretary for Health (ASH), on a broad range of issues
and topics related to myalgic encephalomyelitis/chronic  fatigue
syndrome (ME/CFS).  The appointments of several Committee members are
scheduled to end during the 2014 calendar year.  Nominations of
qualified candidates are being sought to fill the positions that are
scheduled to be vacated.  The Committee composition consists of seven
scientists with demonstrated expertise in biomedical research
applicable to ME/CFS, four individuals with demonstrated expertise in
health care delivery, private health care services or insurers, or
voluntary organizations concerned with the problems of individuals
living with ME/CFS.   The vacant positions cover all of these
categories.  To qualify for consideration of appointment to the
Committee, an individual must possess demonstrated experience and
knowledge in the designated fields or disciplines, as well as expert
knowledge of the broad issues and topics pertinent to ME/CFS.

Individuals selected for appointment to the Committee will serve as
voting members and can be invited to serve terms of up to four years.
As Special Government Employees, committee members receive a stipend
for attending Committee meetings.  Committee members also are
authorized to receive per diem and reimbursement for travel expenses
incurred for conducting Committee business.

Nomination materials should be typewritten, 12-point type, and
double-spaced.  If mailed, please submit original documents.  The
nomination materials should be submitted (postmarked or received) no
later than 5:00p.m. ET on the date specified under DATES.  The
following information must be part of the nomination package submitted
for each individual being nominated:  (1)  a letter of nomination that
clearly states the name and affiliation of the nominee, the basis for
the nomination (i.e., specific attributes which qualify the nominee
for service in this capacity), and a statement that the nominee is
willing to serve as a member of the Committee; (2) the nominator's
name, address, and daytime telephone number, and the home and/or work
address, telephone number, and e-mail address of the individual being
nominated; and (3) a current copy of the nominee's resume or
curriculum vitae.  Federal employees should not be nominated for
consideration of appointment to this Committee.  An individual may
self-nominate.

The Department makes every effort to ensure that the membership of
Federal advisory committees is fairly balanced in terms of points of
view represented and the committee's  function.  Every effort is made
to ensure that a broad representation of geographic areas, females,
ethnic and minority groups, and people with disabilities are given
consideration for membership on Federal advisory committees.
Appointment to this Committee shall be made without discrimination on
the basis of age, race, ethnicity, gender, sexual orientation,
disability, and cultural, religious, or socioeconomic status.
Nominations must state that the nominee is willing to serve as a
member of CFSAC and appears to have no conflict of interest that would
preclude membership.  Potential candidates are required to provide
detailed information concerning such matters as financial holdings,
consultancies, and research grants or contracts for an ethics analysis
to be conducted to identify potential conflicts of interest.

ELECTRONIC SUBMISSIONS:  Nomination materials, including attachments,
may be submitted electronically to cfsac@hhs.gov.  Telephone and
facsimile submissions cannot be accepted.

DATES:  Applications for individuals to be considered for appointment
to the Committee must be received no later than 5 p.m. ET on October
28, 2013 at the address listed below.

ADDRESSES:  All nominations should be mailed or delivered to Martha
Duncan Bond, Alternate Designated Federal Officer, Chronic Fatigue
Syndrome Advisory Committee, Office  on Women's Health, Office of the
Assistant Secretary for Health, Department of Health and Human
Services, 200 Independence Avenue, SW, Room 719E, Washington, DC
20201. Nomination materials, including attachments, may be submitted
electronically to cfsac@hhs.gov.

FOR FURTHER INFORMATION  CONTACT:  Martha Duncan Bond, Alternate
Designated Federal Officer, Chronic Fatigue Syndrome Advisory
Committee, Office on Women's Health, Office of the Assistant Secretary
for Health, Department of Health and Human Services, 200 Independence
Ave., SW, Room 719E, Washington, DC 20201.  Inquiries may also be made
to cfsac@hhs. gov.

SUPPLEMENTARY INFORMATION:   CFSAC was established on September 5,
2002.  The purpose of the CFSAC is to provide advice and
recommendations to the Secretary ofHHS, through the ASH, on issues
related to ME/CFS.  CFSAC advises and makes recommendations on a broad
range of topics including:  (1)  the current state of knowledge and
research; the relevant gaps in knowledge and research about the
epidemiology, etiologies, biomarkers, and risk factors relating to
ME/CFS; and potential opportunities in these areas;  (2)  impact and
implications of current and proposed diagnostic and treatment methods
for ME/CFS;  (3)  development and implementation of programs to inform
the public, health care professionals, and the biomedical, academic,
and research communities about ME/CFS advances; and  (4)  strategies
to improve the quality of life of ME/CFS patients. Management and
support services for Committee activities are provided by staff from
the Office on Women's Health, which is a program office within the
OASH.  The CFSAC charter is available at
http://www.hhs.gov/advcomcfs/charter/index.html.

--

The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

Learn more about the Health Insurance Marketplace at HealthCare.gov!

Stand with our Experts

[Permission to repost in full]



HHS / IOM Contract – Fooled Us Once, Shame On You for Abusing the Disabled!



The warp speed of this potential train wreck initiative whizzes light-years
faster than the majority of ME and cfs patients can think, much less move.
We're sure HHS & IOM know this.  (And so we continued to be abused.) Given
HHS's corruption of CFSAC's definition recommendation, we are certain the
HHS and its hired hand's giant brushing aside of the ME & cfs community's
outcry in solidarity with our veteran experts against this contract is
deliberately breakneck.  This is at least as haphazard as the original CDC
investigators who, in the guise of authority, bopped to Lake Tahoe and
literally took a hike instead of carefully examining very ill patients and
heeding the professionals who called on them for help.   (Anyone remember
THAT government effort?  You know - the one that obliviously redefined
life-robbing M.E. into the innocuous 30-year "cfs" disaster that has
permanently maimed or killed a lot of good, hardworking people, abuse that
continues to this day, and has been career nightmares for our dedicated
doctors and researchers too?  Let's not forget about "misappropriated"
(stolen) millions, other millions frittered on "CFS" branding campaigns, and
fixation on fatigue rather than on wide-ranging studies on cytokines, spinal
fluid proteins, organs infested with viruses, and…  well, you know - all
that list of grossly abnormal stuff researchers have documented in PWMEs
that's magically supposed to go away with CBT and GET.)



NO WAY - not again!  When a long list of lifelong experts state loud and
clear, "FOLLOW OUR LEAD" - with hoards of beaten-down, undead patients
cheering from their sick beds if they are able, only to be ignored yet
again - it would be really, really naive to think good science is happening,
rather than politics and backroom-ing all over again.  We will not allow
this to happen again!  Fool us once… we've suffered and died for 30 years,
strung along, fooled over and over.



Well, our money's on a more informed, outspoken generation of ME/cfs
advocates – patients and researchers alike!  Given its history with ME &
cfs, HHS has no right to hand a million-dollar hammer to their exclusively
chosen contractor to smash apart the pieces of the ME puzzle that have been
rapidly amalgamating with advances in technology - clues that these experts
have painstakingly pieced together for an entire generation.  We question
IOM's integrity for accepting this contract.  They apparently didn't bother
researching M.E.'s turbulent history before signing on.  (We don't need to
question HHS.  Their track record speaks volumes.)  HHS may have funds on a
scale that our researchers desperately need, but no amount of money gives
HHS the authority to define a disease they've historically misrepresented,
harming countless patients over decades.  Definitions belong to experts in
the field, authorities on the disease who have fought for nickels and dimes
to bring to light the disease processes wracking our bodies.  To reiterate
what we've said elsewhere regarding HHS and its departments regarding ME
(cfs):  History has shown repeatedly that stakeholder input is gratuitously
listened to with seeming sincerity, expert advice is solicited, then
promptly disregarded as preconceived plans move ahead (or not).  Fool us
twice (times ten, but we're cognitively impaired, so shame on you again, HHS
& IOM, for repeatedly exploiting the disabled).



To the HHS and its departments: Redeem yourselves and your predecessors for
the lives lost and still suffering, undead, from this disease!  Help, do not
hinder!  FOLLOW OUR EXPERTS' LEAD!

https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf

In the mean time, think about the public apology you or your successors are
going to send out.  (Restitution is virtually impossible, unless by that
time reanimation is medically possible.)



Request for Legal Action [See Footnote below]



It is far beyond Name-us.org's scope and ability to set in motion legal
action to cancel the contract between HHS & IOM to redefine ME.  (We would
be right on that if we could!)  HHS could do it with the stroke of a pen, if
they chose to heed our experts' sagacious advice.



We hope (if not already in motion) ME & cfs experts can quickly organize
legal action against this political –  most certainly not scientific –
maneuver on the part of HHS/IOM.  Until we hear word of any initiation of
legal action to cancel this contract, http://www.name-us.org  has posted on
its homepage some email addresses of Congressmen and others.  To them you
can cc your support of the Open Letter to Secretary Sebelius, signed by 35
of our most respected ME & cfs experts:

https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf \



Also, we've linked to the excellent petitions our advocates (thank you all!)
have been circulating on this issue.  Please sign the petitions and act in
any other way you can.  Nothing is too small, even if it's just one or two
sentences to your Congressmen in support of the Open Letter.  Once upon a
time I had a friend who told me she called her Congressman on an issue, and
when following up later, he told her if he had only heard from at least one
other constituent on the matter, he would have taken action.  I try to
remember this lesson when writing seems too overwhelming with M.E.



http://name-us.org/#BULLETIN



http://name-us.org/#follow_our_experts_lead



Lois Ventura

Co-Founder

National Alliance for Myalgic Encephalomyelitis

http://www.name-us.org



Footnote [Partial quote http://www.seidmanlaw.com/Contract-Terminations/ ,
emphasis added, and note that this firm represents the contractor!]:
"Terminations for Convenience: The following is from Paul J. Seidman and
David J. Seidman's "Maximizing Termination for Convenience Settlements/
Edition II - Part I," Briefing Papers No. 08-3, at 1-2, 10, February 2008:



"  The "Termination for Convenience of the Government" clause in a
Government contract conveys broad rights on the Government to terminate the
contract when termination is in the Government's interest. The Government
may cancel the contract simply because its needs change regardless of
contractor fault. In return for this privilege, the Government agrees to pay
the terminated contractor its incurred costs and certain continuing costs in
a traditional Government contract. Alternatively, in a contract for
commercial items or services under Federal Acquisition Regulation Part 12,
the Government agrees to pay the terminated contractor the percentage of
contract price reflecting the percentage of completion and charges resulting
from termination."



So let's get this thing cancelled, and not waste any more of our REAL
research money!



(For Tom)

Monday, October 21, 2013

Saturday, October 19, 2013

Dr. Judy reports from San Diego

Here is a report from Dr. Judy from the first two days of ILADS in San Diego:

While there were several provocative presentations today at ILADs including one on IVIG, hyperbaric oxygen therapy and endocrine disorders, today I will focus this summary on talks given yesterday and today by Richard Horowitz.

Richard piqued my interest when he started the discussion talking about the political stigma of the name, Chronic Lyme disease! Who suffers more by political stigma than sufferers of the disease with the name Chronic Fatigue Syndrome, I thought immediately.

Dr. Horowitz and I are speaking the same language, one first expressed in 2011 in Ireland by MP Basil McCrae after I described the inflammatory cytokines, immune abnormalities and co-infections in ME/CFS and autism. Basil saw the overlap in the diseases that I described but immediately thought of the political clout of working together. Millions of voters spoke volumes turning political stigma into a powerful lobby, he suggested. Today Richard Horowitz echoed MP Macrae's wisdom and presented several hours worth of data supporting his suggestion that diseases including CLD, CFS, FM, MS, AD, autism, some cancers and PANS/Pandas be called MSIDS: Multi-System Inflammatory Diseases.

All of the diseases above share a single common denominator of activation of inflammatory cytokines and chemokines,
which we were the first to publish as a signature of a specific subgroup of ME/CFS in 2011. Horowitz spent the next 3 hours discussing the more than 12 points that drive this inflammation including infections (bacterial, viral parasitic, candida), immune dysfunction, inflammation, toxicity, allergic sensitivities, nutritional and enzyme deficiencies, mitochondrial dysfunction, neurological dysfunction, endocrine disorders and autonomic nervous system dysfunction.

We need the medical research community to overlap enough to see the similarities and the example he gave here were the advances made in autism. He suggested as our recent research with Drs. Gordon, Bhakta, Deckoff-Jones and Snyderman that we could in fact identify the predominant co-infections based on distinct cytokine signatures. Moreover, if we can identify the biochemical mechanisms driving the underlying immune dysfunction and inflammation, whether you call it CLD, CFS, FM, MCS or MS; you can treat based on the underlying mechanisms. You treat the inflammation, immune & mitochondrial dysfunction and nutritional deficiencies AT THE SAME TIME. Fix that and perhaps the patient does not need long term antivirals or antibiotic regimens.

This is exactly the model that Dr Sarah Myhill and I discussed in detail a few weeks ago. In fact, Dr Horowitz mentioned Dr Myhills treatment strategy particularly. He mentioned specifically Dr Myhill's use of oral phosphatidyl choline in combination with Low Dose Naltrexone in combination with antioxidant herbal therapies such as alpha lipoic acid, resveratrol, glutathione and micronutrients, which are all found in the comprehensive supplements in the Pharmanex Lifepak family.

There were many specifics and details in this presentation, which I will integrate into my discussion with Dr Myhill's summary of our discussion in the next few days. Thank you for the opportunity to attend this meeting. Everything I learned today I can integrate into personalized treatment strategies, which I will share with readers and their physicians

Judy
 
 

Thursday, October 10, 2013

Clearing the Air, or Breaking Wind?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an EMAIL for FREE membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>>> Help ME Circle <<<<
>>>> 10 October 2013 <<<<
Editorship : j.van.roijen@chello.nl
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~

http://bit.ly/1g0Y44F

Onward Through the Fog

WEDNESDAY, OCTOBER 9, 2013

Clearing the Air, or Breaking Wind?

A Comment on Suzanne Vernon

Note:

You can sign the petition in
support of the doctors' letter
HERE. You can sign the
petition to support adoption
of the CCC HERE:
http://bit.ly/GFkfgJ

````

Yesterday, Suzanne Vernon posted an
article on Research First
(http://bit.ly/1g0Zw7n) in which she
attempted to respond to accusations
(http://bit.ly/1cviq3H) that the CFIDS
Association of America (CAA) had
pressured the signatories of the HHS
doctors' letter (http://bit.ly/1g0ZRGX)
into withdrawing their support for the
immediate adoption of the Canadian
Consensus Criteria and rejection of
the IOM contract.

Although the letter sent by the CAA
did not directly ask the doctors to
rescind their signatures, it was clear
that asking if they "still agreed" was
intended to instill doubt. (Not to
mention, why send an email to all of
the signatories, unless the purpose is
to get them to change their minds?)

The letter worked in at least one case:

Lucinda Bateman
(http://bit.ly/1g107py) withdrew her name from
the letter, stating that:

"This is an opportunity to build a strong federal
base of support from NIH/IOM."

Echoing that sentiment.

Or perhaps inspiring it, Vernon says:

"We must have the cooperation and
involvement of the various federal agencies to
increase research funding and achieve real
progress."

What is lacking from these pronouncements of
faith in the IOM's ability to validate and fund
future research:

"based on clear identification of gaps in our
knowledge, review of our current evidence
base, and creative thinking about how to move
forward" is any *contact with reality*.

Philosopher George Santayana is reputed to
have said, "Those who cannot learn from
history are doomed to repeat it."

History, in the case of ME/CFS, has proven that
our federal agencies (HHS, CDC, NIH) have
absolutely no interest in accurately defining the
illness, funding research, or including patients in
decision-making processes - much less
"creative thinking about how to move forward."

Let's take a brief look at the history of how
federal agencies have dealt with ME/CFS:

*) The CDC has never tried to come up with
an accurate case definition.

The current CDC case definition ("Fukuda") has
been critiqued for decades by all of the
reputable ME/CFS specialists and researchers
as being too vague.

This vagueness was intentional.

The Fukuda definition was designed to stymie
the ability of physicians to correctly diagnose
the illness, ultimately leading to
under- eporting.

This was a boon to insurance companies, which
did not want to pay for yet another expensive
epidemic (i.e. AIDS).

It was not until advocates began pressuring HHS
to adopt the Canadian Consensus Criteria -
which were developed by independent
researchers and ME/CFS doctors - that the
HHS responded.

Their response was to ignore the experts, and
assign the case definition to people who not
only know nothing about the illness, but have a
vested interest making sure the definition stays
vague and broad enough to classify ME/CFS as
a form of "fatigue."


*) The NIH has never funded this illness.

It is well known that the funds awarded to
studying "CFS" in the 1980s were diverted to
measles, alcoholism and other "fatiguing"
conditions.

That trend has continued. In 2009
(http://1.usa.gov/1g11ggL), nothing was
awarded for research into "CFS."

In 2010, again - not one penny. In 2011, $6
million was awarded, which, while better than
nothing, did not even come close to
researching an illness that affects more people
than AIDS ($3 billion), lung cancer ($233
million) and breast cancer ($800 million)
combined.

Does the CAA really believe that because of the
IOM contract the NIH is going to turn around
and award $4 billion to research on ME/CFS?

(I can hear the laughter, but strictly by
prevalence, $4 billion is what we should get
.)


*) The HHS has never included patients in
their decisions regarding ME/CFS.

Patients were not consulted to formulate the
Fukuda definition. We were not consulted when
awarding funds for research.

We certainly weren't consulted about the IOM
contract.

The idea that we are now going to be "at the
table" is simply ludicrous.

I suspect that by making this claim Vernon is
referring to her own dinner invitation.

In spite of the fact that Vernon's expertise with
the illness in no way compares to that of any of
the people who stood by their signatures, she
will be part of the team that determines our
fate.

Why?

For one thing, her previous work with the CDC
not only supported the Fukuda definition
[Chronic Fatigue Syndrome – A clinically
empirical approach to its definition and study
(http://1.usa.gov/1g128C9)], but advocated
the use of questionnaires for diagnosis, rather
than objective measurements.

It is not at all surprising that, given her
predilections, Vernon does not consider PEM
(post-exertional malaise) as a hallmark
symptom of ME/CFS.

(She also believes that if we slept more we
would be "less tired.")

With Vernon on the IOM committee we can
expect no less than a definition that essentially
eliminates ME/CFS as a disease entity.

Why on earth would anybody - given this
30-year history - think that the IOM (an
organization that has already stated it believes
ME/CFS is a subcategory of "fatiguing
illnesses") will open up federal doors?

Why would funding suddenly flow for "fatigue"?

And why would research be more valid with
cohorts composed of people with "chronic
fatigue"?

But, perhaps most important of all, why did the
CAA it use its clout as a national CFIDS
organization to pressure doctors into supporting
the IOM contract, an arrangement that will
benefit nobody in the ME/CFS community?

Does the CAA speak for the ME/CFS
community, or is it simply speaking for
itself?





~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
PEM, NOT Chronic Fatigue, is why patients
are bedridden, homebound, unemployed,
and unable to walk a block.
~:~:~:~:~:~:~:~:~:~:~:~:~

Friday, October 4, 2013

Sensory Overload

A recent study suggested overactive organs deep in the brain contribute to
the pain, fatigue and sleep problems in Fibromyalgia. Now a study suggests
that the 'gates' in the deepest part of the brain that protect it from
being slammed with too much sensory information may be broken in FM,
causing pain, fatigue and even cognitive problems. Is your brain overloaded?

Learn more about a potentially key finding in both FM and ME/FS in

http://www.cortjohnson.org/blog/2013/10/03/sensory-overload-study-suggests-brains-fibromyalgia-pummeled-much-information/

Wednesday, October 2, 2013

MS Diet Tips: 10 Do's and Don'ts - CNN

 
Here are two:
 
Don't try to lose weight with low-carb diets (like Atkins). Fatigue is a common MS symptom, and an imbalanced diet can make it worse. Low-carb diets tend to be high in fat and low in fruits, vegetables, and whole grains that are important for people with MS.
 
Don't eliminate dairy from your diet. One result of being inactive (and a possible side effect of steroid medications) is weak bones, a condition called osteoporosis. You can help prevent this problem by eating low-fat dairy products, like milk and protein-rich Greek yogurt, that are high in calcium and have added vitamin D.
 
* * *
 
Also, although many well-meaning people will tell you to go vegetarian for your health, many CFS patients need more protein than the average person.  I'm allergic to soy and can't get enough protein from beans, so meat is an absolute necessity for me to feel as well as possible.  If you feel sluggish after trying vegetarianism, don't be afraid to tell people, as I do, "I tried it and it made me sicker."

6 Great Exercises That Make Living With MS Easier - CNN

 
These exercises might work for CFS, too.  You shouldn't do anything aerobic that raises your heart rate, but things like resistance exercises and yoga are generally OK.

Monday, September 30, 2013

'My Brother By Choice' - A Good-bye to Tom Hennessy - Fierce Advocate

 
 
Tom Hennessy got on CNN and tried to get the Gulf War Illness patients to coordinate with ME/CFS patients:

"That show got pretty heated when I claimed that "many of our brave veterans are returning with very similar symptoms as all these 'alleged whiney white women' who can NOT handle stress!" I went on to say, that "If these highly educated, mostly male, stunningly victorious soldiers who only fought for four days, could come down with this terrible illness, then maybe the NIH and the CDC will be forced to stop telling lies about it."

I got TONS of mail from all over the world."

 

Unfortunately, because of the amount of publicity that CFS patients are just whiny depressed menopausal women, no one ever wants to join forces with us -- even young athletic military men who certainly aren't menopausal.

 

There have been calls for Act Up-style protests, but how?  Our patients are stuck in bed, and our partners often question whether we're really sick.  Spouse went to the doctor with me and initially started by confirming my objective symptoms, but by the end of the appointment the doctor had brainwashed him that he couldn't be seeing any objective symptoms because there was nothing there to see.  Even after I got a diagnosis from a virologist, Spouse continued to question whether the first doctor was right that I was just faking to avoid certain things I didn't want to do.  That wasn't an issue for AIDS patients, where their partners were told to take precautions to avoid getting infected themselves; no one tells our partners that we're highly contagious, in part because there's no evidence of contagion after the initial flu-like illness and in part because they think we're just lazy or crazy.  No one's going to take to the streets to protest on behalf of lazies or crazies, which means whatever we do is left up to the patients and the few people who do believe that it's a physical illness, not a psychiatric problem.

 

 

Wednesday, September 25, 2013

5 ways a healthy diet is making you tired - CNN.com

 
 
Have you tried a "fad diet" that eliminates entire food groups, like meat or carbs?  That may be why you're tired.
 
In the early days when they knew very little about CFS, I was urged to try elimination diets to check for food allergies.  I didn't find any new allergies (there were some I already knew about), but I discovered that when I went sugar-free, my brain didn't work, and when I went meatless, my body became even more sluggish.  Coke and beef are essential to my well-being.
 
 

12 Myths About Gluten - CNN

 
 
Celiac Disease has symptoms similar to CFS.  Get tested and get treated for the RIGHT thing.
 
Personally, I have no change in symptoms when I eliminate gluten.

Monday, September 23, 2013

An Open Letter to Kathleen Sibelius, HHS

https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf


An Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of
Health and Human Services

September 23, 2013

Dear Secretary Sebelius,

We are writing as biomedical researchers and clinicians with expertise
in the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(ME/CFS) to inform you that we have reached a consensus on adopting
the 2003 Canadian Consensus Criteria (CCC) as the case definition for
this disease.

The 1994 International Case Definition (Fukuda et al, 1994), commonly
known as the Fukuda definition, was the primary case definition for
ME/CFS for almost two decades. However, in recent years expert
researchers and clinicians have increasingly used the CCC, as they
have recognized that the CCC is a more scientifically accurate
description of the disease.

The CCC was developed by an international group of researchers and
clinicians with significant expertise in ME research and treatment,
and was published in a peer-reviewed journal in 2003 (Carruthers et
al, Journal of Chronic Fatigue Syndrome, 2003). Unlike the Fukuda
definition, the more up-to-date CCC incorporates the extensive
scientific knowledge gained from decades of research. For example, the
CCC requires the symptom of post-exertional malaise (PEM), which
researchers, clinicians, and patients consider a hallmark of the
disease, and which is not a mandatory symptom under the Fukuda
definition. The CCC was endorsed in the Primer for Clinical
Practitioners published by the International Association of Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME). This
organization is the major international professional organization
concerned with research and patient care in ME/CFS.

The expert biomedical community will continue to refine and update the
case definition as scientific knowledge advances; for example, this
may include consideration of the 2011 ME International Consensus
Criteria (Carruthers et al, Journal of Internal Medicine, 2011). As
leading researchers and clinicians in the field, however, we are in
agreement that there is sufficient evidence and experience to adopt
the CCC now for research and clinical purposes, and that failure to do
so will significantly impede research and harm patient care. This step
will facilitate our efforts to define the biomarkers, which will be
used to further refine the case definition in the future.

We strongly urge the Department of Health and Human Services (HHS) to
follow our lead by using the CCC as the sole case definition for
ME/CFS in all of the Department's activities related to this disease.

In addition, we strongly urge you to abandon efforts to reach out to
groups such as the Institute of Medicine (IOM) that lack the needed
expertise to develop "clinical diagnostic criteria" for ME/CFS. Since
the expert ME/CFS scientific and medical community has developed and
adopted a case definition for research and clinical purposes, this
effort is unnecessary and would waste scarce taxpayer funds that would
be much better directed toward funding research on this disease.
Worse, this effort threatens to move ME/CFS science backward by
engaging non-experts in the development of a case definition for a
complex disease about which they are not knowledgeable.

ME/CFS patients who have been disabled for decades by this devastating
disease need to see the field move forward and there is no time to
waste. We believe that our consensus decision on a case definition for
this disease will jump start progress and lead to much more rapid
advancement in research and care for ME/CFS patients. We look forward
to this accelerated progress and stand ready to work with you to
increase scientific understanding of the pathophysiology of this
disease, educate medical professionals, develop more effective
treatments, and eventually find a cure.

Sincerely,

United States Signatories

Dharam V. Ablashi, DVN, MS, Dip Bact.
Scientific Director of HHV-6 Foundation
Co-founder of IACFS/ME
Santa Barbara, California

Lucinda Bateman, MD
Director, Fatigue Consultation Clinic
Executive Director, OFFER
Salt Lake City, Utah

David S. Bell, MD, FAAP
Researcher and Clinician
Associate Professor of Pediatrics
State University of New York at Buffalo
Lyndonville, New York

Gordon Broderick, PhD
Professor, Center for Psychological Studies
Director, Clinical Systems Biology Lab
Institute for Neuro Immune Medicine,
Nova Southeastern University
Fort Lauderdale, Florida

Paul R. Cheney, MD, PhD
Director, The Cheney Clinic, PA
Asheville, North Carolina

John K.S. Chia, MD
Researcher and Clinician
President, EV Med Research
Lomita, California

Kenny L. De Meirleir, MD, PhD
Professor Emeritus Physiology and Medicine (Vrije Universiteit Brussel)
Medical Director, Whittemore-Peterson Institute
University of Nevada
Reno, Nevada

Derek Enlander, MD, MRCS, LRCP
Attending Physician
Mount Sinai Medical Center, New York
ME CFS Center, Mount Sinai School of Medicine
New York, New York

Mary Ann Fletcher, PhD
Schemel Professor of NeuroImmune Medicine
Institute for Neuro Immune Medicine
Nova Southeastern University
Fort Lauderdale, Florida

Ronald Glaser, PhD, FABMR
Director, Institute for Behavioral Medicine Research
Kathryn & Gilbert Mitchell Chair in Medicine
College of Medicine - Distinguished Professor
Professor, Molecular Virology, Immunology and Medical Genetics
Professor, Internal Medicine
Professor, Division of Environment Health Sciences, College of Public Health
Institute for Behavioral Medicine Research
Columbus, Ohio

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York

Leonard A. Jason, PhD
Professor of Psychology
DePaul University
Chicago, Illinois

Nancy Klimas, MD
Director, Institute for Neuro Immune Medicine
Professor, Nova Southeastern University
Fort Lauderdale, Florida

Gudrun Lange, PhD
Clinical Neuropsychologist
Professor, Rutgers New Jersey Medical School
Newark, New Jersey

A. Martin Lerner, MD, MACP
Professor, Infectious Diseases
Oakland University William Beaumont School of Medicine
Emeritus Director, Infectious Diseases, Wayne State University School
of Medicine
Master, American College of Physicians
Reviewer, Viral Diseases, Medical Letter
Beverly Hills, Michigan

Susan Levine, MD
Researcher and Clinician, Private Practice
New York, New York
Visiting Fellow, Cornell University
Ithaca, New York

Alan R. Light, PhD
Professor, Department of Anesthesiology and Department of Neurobiology
and Anatomy
University of Utah
Salt Lake City, Utah

Kathleen C. Light, PhD
Researcher
Professor, Department of Anesthesiology
University of Utah School of Medicine
Salt Lake City, Utah

Peter G. Medveczky, MD
Professor, Department of Molecular Medicine
College of Medicine
University of South Florida
Tampa, Florida

Judy A. Mikovits, PhD
Researcher, MAR Consulting, LLC
Carlsbad, California

Jose G. Montoya, MD, FACP, FIDSA
Professor of Medicine
Division of Infectious Diseases and Geographic Medicine
Stanford University School of Medicine
Stanford, California

James M. Oleske, MD, MPH
Fran├žois-Xavier Bagnoud Professor of Pediatrics
Director, Division of Pediatrics Allergy, Immunology & Infectious Diseases
Department of Pediatrics, Rutgers New Jersey Medical School
Newark, New Jersey

Martin L. Pall, PhD
Professor Emeritus of Biochemistry and Basic Medical Sciences
Washington State University
Portland, Oregon

Daniel Peterson, MD
Founder and President of Sierra Internal Medicine
Incline Village, Nevada

Richard Podell, MD, MPH
Clinical Professor, Department of Family Medicine
UMDNJ Robert Wood Johnson Medical School
New Brunswick, New Jersey

Irma Rey, MD
Clinician
Institute for Neuro Immune Medicine
Nova Southeastern University
Fort Lauderdale, Florida

Christopher R. Snell, PhD
Professor, Health, Exercise and Sport Sciences
University of the Pacific
Stockton, California

Connie Sol, MS, PhDc
Clinical Exercise Physiologist
Institute for Neuro Immune Medicine
Nova Southeastern University
Fort Lauderdale, Florida

Staci Stevens, MA
Exercise Physiologist
Founder, Workwell Foundation
Ripon, California
Rosemary A. Underhill, MB BS, MRCOG, FRCSE
Independent Researcher
Palm Coast, Florida

Marshall V. Williams, PhD
Professor, Departments of Molecular Virology, Immunology and Medical
Genetics; Microbiology
The Ohio State University
Columbus, Ohio

International Signatories

Birgitta Evengard MD, PhD
Professor, Division Infectious Diseases
Umea University
Umea, Sweden

Sonya Marshall-Gradisnik, PhD
Director, National Centre for Neuroimmunology and Emerging Diseases
Griffith Health Institute
Professor, Griffith University Parklands Gold Coast
Queensland, Australia

Charles Shepherd, MB BS
Honorary Medical Adviser to the ME Association
London, United Kingdom

Rosamund Vallings MNZM, MB BS
IACFS/ME Secretary
Clinician, Howick Health and Medical Clinic
Auckland, New Zealand

Cc:

Dr. Howard Koh, Assistant Secretary for Health
Dr. Richard Kronick, Director, Agency for Healthcare Research and Quality
Dr. Thomas Frieden, Director, Centers for Disease Control and Prevention
Ms. Marilyn Tavenner, Administrator, Centers for Medicare and Medicaid Services
Dr. Margaret Hamburg, Commissioner, U.S. Food and Drug Administration
Dr. Mary Wakefield, Administrator, Health Resources and Services Administration
Dr. Francis Collins, Director, National Institutes of Health
Ms. Carolyn W. Colvin, Commissioner, Social Security Administration