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.