M.E. is a controversial illness, which is invisible, not thouht to be
contagious, and is not immediately fatal.
It has been very difficult for scientists to find a distinct causal
agent for this illness and to reproduce the abnormalities that have
been uncovered, particularly those pertaining to the immune system.
All these facts taken together mean that M.E. is not likely to be
taken as seriously as it should be. This is a travesty but it is the
harsh reality.
I take M.E. very seriously. It is a very damaging and disabling
illness that can cast a pall over ones whole life.
In M.E. there are deaths through complications, high suicide rates
and an extremely poor quality of life, even when compared to other
seriously debilitating and even fatal illnesses. In effect, ruined
lives with no prospects.
I recently spoke to someone who had had brain cancer, a condition one
would regard as life altering, but due to successful treatment, the
patient went back to being a full time student within a few months.
How much longer will it take for us to realise that no government
agency has our best interests at heart and that it is incumbent upon
each one of us to grab the bull by the horns and take charge of the
situation and responsibility for our fates.
By investing heavily in speculative and unproven treatments, we are
cheating ourselves out of a brighter future. If an earlier generation
of patients had invested in quality biomedical research, there would
surely be an array of treatment options available to us today.
Instead we find ourselves in a situation where the number of quality
research papers coming out in a month, can be counted on one hand.
Surely with millions of patients around the world, everyone would
only have to make small sacrifices in order to fund a substantial
private research track?
As I have noted before, the clock is ticking and the current pool of
biomedical ME scientists, is getting older and reaching retirement
age. There are very few new scientists in the field, because a
professed interest in the biomedical aspects of M.E. jeopardizes the
scientists good standing in the scientific community.
The justfourquid initiative suggests ways in which patients can save
money and donate a proportion of the money they have saved, to the
campaigns respective research funds. The money goes directly into the
accounts of the charities concerned. A handful of poor patients who
have been willing to give the scheme a try, have shown that this can
be successful. The extremely poor results of the campaign so far, due
to the low participation rate, serve as an indictment of the ME
community. In the past when I have set up a matching funds challenge,
when the target was reached, people refused to donate further. They
had the money, they just wouldn't part with it. This is indicative of
a sad mentality.
Whats more, we spend much of our time engaged in a war of words with
one or other faction of the ME community. A certain amount of
criticism is warranted; some individuals and organizations need to be
exposed, as has recently happened with the CDC. but confrontational
activism needs to be tempered with construtive activism.
I really hope that things will change but in the meantime I will have
to resign myself to the fact that I won't be doing anymore university
courses in the near future owing to the severity of memory problems
cause by ME.
I would love to hear from patients in the cape town area.
Jeremy Bearman
BSocSc PDM MBA
jhbear@iafrica.com
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm
Select list topic options at http://www.co-cure.org/topics.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
