12:06 p.m.
Dear Friends:
Val, a ME/CFS person, wrote the letter below and sent me a copy. I thought you might like
to read what her reaction and thoughts are on the NIH workshop.
Lydia
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.com
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
NATIONAL ME/FM ACTION NETWORK - HOST OF THE IACFS/ME INTERNATIONAL RESEARCH & CLINICAL
CONFERENCE - OTTAWA, CANADA
SEPTEMBER 22 - 25, 2011
Visit: www.iacfsme.org