Dear Friends:
NIH STATE OF THE KNOWLEDGE WORKSHOP FOR ME/CFS -
DAY 1 AND 2 , April 7 and 8, 2011.
This is their first workshop of its kind.
There will be reports generated on the progress from NATIONAL INSTITUTES OF
HEALTH (USA)
DAY 1
http://videocast.nih.gov/summary.asp?file=16575
DAY 2
http://videocast.nih.gov/summary.asp?live=10114
Hello friends,
I wanted to share something pretty spectacular
with you. Above are two links to a two-day workshop
held in USA at the NIH. It was for ME/CFS and had about 23
experts and a full advocacy section with some patients lining the walls.
The experts were in neurology, immunology, endocrinology, genomics,
brain inflammation, exercise physiology, cardiology, energy metabolism,
infectious diseases and system biology, as well as government
bodies such as The Centers for Disease Control & Prevention (CDC) and
the Food & Drug Agency (FDA) and Health and Human Services.
I know you will not want to watch the whole thing,
but just look at the agenda on the headers and click on Day
1 to witness what it is like after 25 years in North America
and over 50 years in UK, to see people sharing their expertise and
their research into their expertise of ME/CFS, as they try
to work together to come up with more research that will help find biomarkers,
objective diagnostic criteria, and trials for treatment.
This is a pretty great thing for the experts
in that room as well because they get to use each other as resources and
plan strategies for research and treatment trials together using all their
disciplines and institutions.
It will also end up helping all other complex
health issues in the future because ME/CFS is pushing medicine and
technology together to create new ways of assessing and finding answers to
complex problems. Although these matters are at the beginning, it fosters
some hope, especially for the next generation to deal with ME/CFS.
It is a powerful movement; and at the beginning,
there is an address delivered by letter by the Secretary of Health,
Kathleen Sebalius, the one who makes the decisions in health, and
she finally acknowledges the ME/CFS crises as well as the severity of the
suffering, the lack of care, unmet needs and the research funds necessary with
the goal to give people a better quality of life. She has instructed her
agencies to give it their full attention. This is a request only made this
Spring. Everyone is facing forward and watering the tree of knowledge.
However, the need to make anything happen
is attached to the dollar. Please think of donating to those who are
helping to affect awareness and change.
Feel free to pass this message on to
anyone who has an interest in medicine, ME/CFS, or the working of
government on health issues. This is an American workshop, and Canada
is politically and medically behind them (although there are movements
forward starting to be seen in Canada this year with the IACFS Conference to be
held in Ottawa in the fall and hosted by the National ME/FM Action
Network). So feel free to speak to
the politicians in your area or anyone with a political interest about Canada's
lack of position and support on these issues.
According to a 2005 survey conducted by Statistics
Canada, 333,816 Canadians were diagnosed with ME/CFS, over 1 million Americans, as well as others
world-wide. Last year Canada granted only enough money to CFS
research to equal $12 per patient. I could do better with my
wheelchair on a street corner. The average HIV/AIDS patients would have
received $5,500 per person with 65,000 patients in Canada and they have
effective treatment in place and have for quite a few years due to the funding
and research that goes to their illness. ME/CFS needs equal
attention and funding.
Doctors that treat both HIV/AIDS and ME/CFS in the
States are very clear that if they had to choose between the two illnesses and
have one of them, in 2011, due to progress and treatment with AIDS, it would be
an easy decision. They would rather have AIDS than CFS. That
is quite a statement.
It also helps me understand why I haven't been
able to figure it out on my own when I see 23 geniuses in a room who are absolutely
tested to the max to join the dots and come to some understanding of
the complexity and seriousness of this illness, never mind how to
effectively treat or cure.
Keep watering that tree,
Val