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Could Language and
Lack of Funds Be Holding Answers for CFS Back?
The CFS community has many differences of opinion.
However, one area of agreement seems apparent.
The only manner in which research delving into the
biomedical basis
of the illness will be forthcoming is private funding.
Two things are needed for progress to be made.
First, worthy projects that provide a high probability
of providing answers must surface. And secondly, funding
for those projects must be found.
But what happens if the worthy projects occur in nation
with a much lower population from which to raise funds?
And, what happens if that population does not speak the
primary languages of the countries that have broader access to
funds and capital. This is the problem right now
facing B-cell research using B-Cell depletion drugs in Norway. Due to
funding difficulties, the research is on the ropes and
struggling.
Preliminary results in Norway have shown that this area
of research is worthy of more investigation.
Discovery Magazine has a wonderful article on B-cell research
(see below). However, a promise to fund the
research by Norway's government fell through earlier
this year. Government agencies in the United
States or Britian have demonstrated strong disinterest
toward B cell abnormalities in CFS. For that reason, research is
lagging from lack of funds and apathy.
Fundraising in a global and international economy
requires one tap into the markets that have a needed
capital. Some wonderful advocates in Norway are
attempting to bridge the language gap and let English
speaking countries know of the opportunity recent findings
in Norway represent. With this
research under threat from lack of funding, I support their
efforts. Here are some links for
more information.
Video on CFS Research in Norway
Donation Page (Paypal of Visa/MC)
Facebook Page
Discover Magazine Article
There are other ways to help that go beyond giving money.
If you have access to European or American fundraising
contacts, this is a worthy project. Fundraising is often about
marketing and savvy and effort -- elbow grease. It is
also about good decisions made by those with capital and
funds.
And, given the CFS community's penchant for internet
advocacy, there are many opportunities available to support
this research!
Patrick Calvin Tackles
Internet Debates
Patrick Calvin, a lawyer who has CFS, has written a
terrific (and I do mean 'terrific' in the
awso-absoluto-immensi-capitalo-sense of the word) post that
addresses some of the best ways of representing a worthy
idea on the internet. Well-written and
intelligently put together, the article not only applies to
CFS, but all forms of internet advocacy and etiquette.
For those who are internet or advocacy savvy, the article is
worth a read!
Here is a link:
Patrick Calvin on Net Debates
Ohio State
Researchers Pinpoint Unique Antibody
A possible link between a subset of CFS cases and
a new antibody has been found by researchers at Ohio State
University. The researchers have also found that
the subset of patients who have the antibody respond to a
specific family of antiviral treatments. An
article explaining the findings can be found
here.
Best wishes to all,
Craig Maupin
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