welcome to the forum,
@Diane O'Leary, and thanks for
professionally engaging rationally with the topic of m.e.
we need more and more professionals in many disciplines to
do that.
this growth in sufficiently thoughtful and
assiduous professionals needs to go visibly exponential.
early adopters like you [and many others who are on this
forum] are needed to get the early majority on board [in the /crossing
the chasm/ sense].
===
i agree with much that you say. and greatly appreciate that you are saying it to professionals in a newish field.
it is going to require vigilance to make sure they get facts
and context right.
the following shows that context has to be right:
some excellent members of this forum and our community
started out with similar intent. you are in good
company.
but it does not create progress,
you are not talking to truth seekers.
it was a hard won lesson.
===
one goal of reaching the early majority is modal recognition
that there is a world-sized problem.
most world-size problems, like genocide or war,
are recognized.
but what populations of sick people are facing is not
recognized. this includes the m.e. crisis, but is fully
generalizable to misopathy and your research interests.
===
but what steps are needed?
for one, the complexity of the topic needs to be distilled
into thoughts that can remain in people's heads. consider
early hiv/aids: most people know it was persecutory. they
don't need the details.
if everybody has to have virtual doctorates in m.e.-ology
(and misopathy) like most people on this forum have, progress
will not occur. thus, distillation.
BUT distillation takes effort. there is active opposition
that is obscuring, misdirecting, and so on.
===
it's natural to step back and make
clear ontological categories and then reason about them.
after all, you are swimming in a philosophical sewer filled
with maelstroms. at least you can plan a route. right?
===
i say "wrong".
a new maelstrom will be formed at any time, in any place, to keep you swimming.
WE ARE NOT DEALING WITH A SCIENTIFIC OR
PHILOSOPHICAL QUEST THAT RESPECTS AGE OF ENLIGHTENMENT
VALUES.
the big picture is not everybody seeking truth, human
rights, progress, or health. the big picture is not a few
people being mistaken.
the applicable metaphor is that sewer. it is uncle remus's
tar baby -- you are as we speak punching it. it is lem's
story about the bureaucratic spaceship. it is kafka's /the
trial/. it is whack-a-mole. it is lucy and the football.
the big picture is: putting new maelstroms in that sewer so
that you keep swimming.
the belief that progress can be made by attempting to
convince perpetrators using logic is what is mistaken.
===
this is a world-sized problem. no pwme is safe in a
hospital. no pwme is safe anywhere.
pwme have faced:
1) inhumane acts
2) that are part of a widespread or systematic attack (all
levels of misopathy including but not limited to
promotion of harmful medical policy, explicit calls for
science not to be done, and harm to individuals)
3) directed against a civilian population (viz. pwme and
related diseases + people like justina pelletier)
4) with knowledge of the attack (they could not have been
unaware of it)
5) that have inflicted great suffering or serious injury
6) to the body or to the mental or physical health.
[the wording is not mine. it is from a un law.]
there is danger in making nicer distinctions
than are being used in practice in the attack. it's needed
-- i'm not arguing against diane's goals of sharing
knowledge with her peers -- but there is danger.
context can make debates moot.
lack of context can mislead.
===
the disease can attack practically every system in the body.
people die. people are bedridden for many years.
that's context that mootifies debates. but it does not get
mentioned, so the perception is couch potato.
did casey fero die from being a couch potato?
your interlocutors present the attack like a legitimate
debate, solved in their direction, concerning tv watchers. are you sure they will play ball with you? or cricket, whatever.
===
diane, please read the piece handed to a reporter by the uk
smc. notice, for example, the quote of an unknown advocate
AND THE ASSERTION THAT THE PERSON WAS ON A SEX OFFENDER
LIST. (from memory.) now look at 1930s propaganda.
that piece was planned by the players that you seek to have
a reasoned dialogue with.
again, it's a common mistake. your colleagues (except for
the postmodernists and postwhateverists) probably seem like
truth seekers. ethicists probably seem like they care about
justice. and that other tradition that has been forgotten
about called human rights.
===
what i am saying to you is that that is not the world that you have entered.
you are not in kansas anymore.
i look forward to more work from you correcting misopathic
policy. i hope you stay on the forum. you seem like a good
egg.