Saturday, October 30, 2010

Ten uses for your body after you die - CNN.com

 
When I talked to Dr. Judy about it last year, WPI wasn't set up to take bodies, but it's possible that they could be in the future. 
 
When you next change your Will, list WPI as the primary beneficiary and one of these other programs as a contingent beneficiary, in case WPI still isn't ready to take bodies when yours becomes available.

Friday, October 29, 2010

CFS Patient Advocate: Judy Mikovits is our Frederick Banting

The role of changes in activity as a function of perceived available energy

The role of changes in activity as a function of perceived available
and expended energy in nonpharmacological treatment outcomes for ME/CFS.

Authors: Brown, M., Khorana, N and Jason LA.

Joiurnal: Journal of Clinical Psychology,  2010.  Online 25th
October. doi: 10.1002/jclp.20744


Nonpharmacological interventions for myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS) often emphasize
gradual increases in activity to promote improvement in physical
functioning and fatigue.

The energy envelope theory may provide a framework for understanding
the relationship between changes in activity level and outcomes for
patients with ME/CFS.

This study examined the relationship between energy envelope and
changes in activity after nonpharmacological interventions in a
sample of 44 adults with ME/CFS.

Results showed that those who were within their energy envelope
before treatment showed more improvement in physical functioning and
fatigue compared with those outside of their energy envelope.

These findings suggest that an assessment of perceived available and
expended energy could help guide the development of individualized
nonpharmacological interventions for people with ME/CFS.
* * *
What some people find difficult to comprehend is that for some patients, the "energy envelope" is extremely small.  At my sickest, even just getting to the kitchen 3x a day to fix simple meals was too much; it wasn't till I switched two meals a day to cereal bars and nutrition shakes kept next to the bed that I stopped driving myself into energy bankruptcy every single day.
 
 

8 Hospital Secrets You Need to Know

Why am I so tired? - CNN.com

Thursday, October 28, 2010

Why CFS patients are treated with contempt

_http://harvardmagazine.com/2010/11/the-psyche-on-automatic_
(http://harvardmagazine.com/2010/11/the-psyche-on-automatic)

Harvard Business School professor Ann Cuddy has extensively
investigated "how people perceive and categorize others," according
to a compelling article in the November-December 2010 issue of
Harvard Magazine. The piece is well worth reading (via the above
link) and very relevant to "CFS" patients in many aspects. If that
link fails search "Harvard Magazine Cuddy."

Cuddy's work contributes especially tragic insight relevant to the
treatment of "CFS" patients:

"Cross-cultural research shows that the only group that consistently
occupies the .... 'contempt' (category) is the ...disadvantaged: the
homeless, welfare recipients, poor people," article reports from Cuddy's
work.

She observes, "They're blamed for their misfortune. They are both
neglected and, at times, become the targets of active harm."

'Human beings' deep-seated cognitive patterns may prepare the way for
this maltreatment," the article suggests.

Cuddy explains, "There's an area of the brain, the medial prefrontal
cortex (mPFC) that is necessary for social perception."

In recent research, she reported, the brains of people being observed
did not show any reaction at all in this area (the mPFC) when they
were shown pictures of homeless people.

What this means, Cuddy explains, is that "People are not even
recognizing them as human."

Many people, in other words, when they see "CFS" patients who may
come across in their misery as less than charming, and who also seem
in their weakened states to be less than take-charge competent, are
likely to regard the "CFS" patients as less than human. At least
contemptible, if not beneath contempt.

Meanwhile other social scientists (experts on war and genocide among
them) have pointed out that the key to enabling people to maltreat
and kill other people is having a view of the "other" as less that human.

Tuesday, October 26, 2010

Interpreting Lab Tests With Fibromyalgia & Chronic Fatigue Syndrome

Interpreting Lab Tests With Fibromyalgia & Chronic Fatigue Syndrome
Adrienne Dwello

Tuesday October 26, 2010


How many times have you gotten test results in the mail and wanted to
know more about what those numbers mean?  The letters I get usually
just give my result and say either normal, high or low.  However, I
want to know if I'm at the low or high end of normal.  For example, is
my thyroid hormone level on the low end of normal, indicating that I
might benefit from a higher dose of replacement hormone?

Something new at About.com can help you figure out what those numbers
mean.  It's called the Lab Test Interpreter, and it contains
information provided by Harvard Medical School.  You can find it here:
http://labtestinterpreter.about.com/

Full post as well as news about treatment modalities can be found at
http://chronicfatigue.about.com/b/2010/10/26/interpreting-lab-tests-with-fibromyalgia-chronic-fatigue-syndrome.htm

Sunday, October 24, 2010

CIOMS

http://www.cioms.ch/

Our doctors & scientists are governed by medical research ethics & 
drug safety.  One organization devoted to the development of 
guidelines is: Council for International Organizations of Medical 
Sciences, which seems to be part of the WHO. So for those with 
questions about medical research ethics, possibly something like the 
Science Media Centre in the UK, might want to write them, concerning 
medical ethics. When you go to their site you will find a number of 
individuals to whom you can write

Contact information:
CONTACT US

Postal Address:
c/- World Health Organization
Avenue Appia, 20
CH - 1211 Geneve, 27
SWITZERLAND

Office Address:
World Council of Churches
Conseil Oecumenique des Eglises
1 - 5 route des Morillons
CH - 1211 Geneve, 2
4th Floor, Saleve Wing
Offices 491 - 493

TELEPHONE: +41 (0) 22 791 34 13
FAX: +41 (0) 22 791 42 86

EMAIL: cioms@who.int

For staff contact information of the CIOMS Secretariat, please visit 
the Staff page






UPDATES

NEW - CIOMS Working Group IX

We are pleased to announce the launch of CIOMS Working Group IX, on 
'Practical Considerations for Development and Application of a Toolkit 
for Medicinal Product Risk Management' The plan is to develop a 
pragmatic consensus guidelines to be used by industry and regulators.
Full details........Click Here


NEW - PANEL DISCUSSION

CIOMS will be hosting a panel discussion which will take place on 
Tuesday 30 November 2010 from 09:00 to 12:00, at WHO Headquarters, to 
be held in conjunction with the CIOMS Executive Committee Meeting and 
General Assembly.

As you may know, CIOMS has promoted ethics since its creation in 1949 
and this mini-symposium will focus on aspects of ethical update and 
more specifically the implementation of ethical principles in medical 
practice (from bench to bedside) with case examples.


The topic of "Implementation of ethical principles in medicine from 
bench to bedside: How the physician may integrate the treatment of his 
patient with science" is to be discussed by a panel of expert members, 
followed by a question and answer session.

This is expected to be a most interesting and informative discussion 
and CIOMS will be announcing the full list of Panel Members in the 
near future.