Here is an idea. Please comment if you can, so I
know how much interest there is. This isn't a
quote from an existing article; I had to surround
it with "CODE" to keep indentation.
Thank you for reading this far.
Samuel
know how much interest there is. This isn't a
quote from an existing article; I had to surround
it with "CODE" to keep indentation.
Code:
I am in contact with somebody who might be able to
help our cause. It's a tough angle, maybe a long
shot, but if it works, it will be a big win. He
wants to know more about the disease.
I know hundreds of places on the web to point him
to, but there isn't a single place that explains
what I will call THE WHOLE THING. By this I mean
explaining everything an advocate needs to explain
in the way I want.
There are hundreds of sites and documents that
bite off some of the task. I have written
articles that are each single-purpose. Many of
you have done the same. I am aware of the major
sites. Not one appears to be a THE WHOLE THING.
There are awe-inspiring sites, great writers,
excellent journalists, stirring blogs, pit bull
advocate-researchers who send chills down your
spine with the quality of their work, lots of
good, good material. And that's just the
advocacy.
But I do not think that a THE WHOLE THING exists
now. If you say, "Have you tried X?" I probably
did try it. All sites I know of, quite naturally
(because they are aiming for a different goal),
miss several points.
A good THE WHOLE THING must do the following.
Every point is essential for my purpose.
1) Not be aimed at us.
2) Be aimed at intelligent, educated people.
They might want an overview or they might
have enough time to read in depth. They will
not have any connection to the disease. They
are analytical. They are decision makers,
scientists, doctors, and connected citizens.
3) Be unimpeachably credible. This means no
ranting and no unverifiable claims. Better
to leave stuff out than include anything that
vitiates the moral force of our case. (This
is an old marketing strategy, by the way: you
don't have to list every feature of your
product.)
4) Not try to be comprehensive. The focus is
education, in particular explaining THE WHOLE
THING.
5) Be done by sufferers, carers, and /100%/
nondenialist researchers and doctors. This
is because we are the only ones who care
enough at this point to do it right.
6) Be written like a good article in a highbrow
magazine.
7) Be brief. One enticing main article.
8) Not try to be a campaign site. That's for
the general public, and ties in with
advertisements and pamphlets. The present
goal is to influence decision-makers.
9) Not be defensive. The terrain belongs to us
from now on.
10) Not get bogged down in too much detail at
any point. Links for details.
11) Be simple and accessible in web design.
Avoid PDF and Word. Have very high search
rankings. Surpass CDC, Wikipedia, and all
other denialist sites in Google rank for all
related search terms. Do this by being very
well-trusted and well-linked.
12) Be fairly robust to different audiences.
Readers might be open-minded, inherently
skeptical, skeptical only because they were
poisoned with falsehoods, or unaware. They
might have any political or religious
leaning. They might trust doctors and
authorities or not. They might be
scientists or they might believe that
healthy lifestyle or CBT cures most diseases
and /it worked for me so it will work for
you/.
13) Explain, indirectly and implicitly if
necessary, why the FIRST SITES PEOPLE GO TO
-- Wikipedia, CDC, emedicine, WebMD, CAA's
Peter White/CBT/GET-containing pamphlets,
King's College London, New Scientist,
denialist papers, certain quackbusting sites
-- are wrong. This is a necessary task.
Only do this in history and politics.
14) Adopt the right tone to inspire "I have to
do what I can to support this cause". This
means NOT exhortation. It's fact after
fact, description, detached narrative,
inspiring identification with the author,
impelling the reader inexorably into
realizing on his own that this is like
Tuskeegee. This IS possible.
15) Have a shorter executive overview, in an
About link.
16) Avoid mistakes found elsewhere:
- Note: I recognize that others have
different priorities, which is why there
are other sites that do not follow these
priorities. These are for this site only.
- Never put denialism on the same footing as
science. Politics posing as science does
not equal science.
- Establish firmly that children suffer too.
- Establish that many people suffer
severely. Hammer this home. Do not be
vague.
1) Point out that (as far as we know) a
mild sufferer or non-sufferer can
become a severe sufferer AT ANY TIME.
2) Explain what "severely" means. Print
the Bell scale. Establish firmly that
many sufferers are below 10.
3) Describe what that means for getting
medical care, dealing with personal
business of all types (including fixing
bureaucratic SNAFUs), getting food or
water, and going to the bathroom.
Readers will not believe it until it is
described in detail.
- Avoid extreme commitments to particular
theories. This doesn't mean put one
theory on an equal footing with another or
fail to mention good theories; it means
avoid overly strong focus on less
mainstream (among the good researchers)
theories.
- Avoid weaselly, compromising blandness
that comforts those in positions of
authority who want to avoid taking action.
The truth gets spoken.
- Never characterize the disease as mild,
mysterious, or controversial.
- Get images right.
1) Never show people rubbing their
temples, looking sad, or sleeping.
Avoid smiles without very good reason.
Avoid smiling portraits of doctors.
2) Brain scans showing abnormalities might
be OK. A study showed that readers
actually take articles more seriously
if they show a brain scan. Cannulas
and IVs are fine. Wheelchairs are
fine. Maybe a scientist looking at a
test tube is OK.
3) Always dignity.
4) This is NOT a picture-heavy site. It
is aimed at abstract thinkers; pictures
are only to leave a visual memory of
the seriousness of the disease for
later when they think of the topic, or
to illustrate an apt point graphically.
Not for grabbing attention, for
example.
5) If there are no pictures at all, that's
absolutely fine. Highbrow magazines
don't particularly need them and
neither do we.
- Never use any CDC definition to explain
what the disease is. Canadian until there
is something better.
- Call it a disease.
- Never put opportunity seeking, wishful
thinking, or common assumptions on the
same footing as science or (very)
responsible observation. Well-meaning
intuitions can cause death.
- Avoid pet theories.
- Never describe non-biomedical theories
except in history and politics.
- Never suggest that sufferers delude
themselves, twist themselves into knots
with worries, or get preyed on (the poor
dears) by nutritional supplement hawkers.
They are sick people, nothing more,
nothing less. Leave what /they/ do alone
and concentrate on what doctors and others
do.
- Avoid treatment recommendations. This is
an education site for people who do not
have the disease, not a site for people
who do have it (or doctors) who are
seeking therapies. Also do these:
1) Establish that many proposed therapies
are wrongly one size fits all.
2) Establish that those who suffer
severely cannot do many things that
those who suffer mildly or from chronic
fatigue, and other people, sometimes
take for granted as being useful.
Point out the human rights and civil
rights consequences of this lack of
understanding. Whether by parents or
friends or authorities or anybody else.
Provide specific and referenced
examples of these violations having
occurred in real life, not
theoretically or "could" or "may" or
"might".
3) Never positively mention any therapies,
whether "good" or "bad", that are
promoted by denialists or opportunists
or cause discord in our community.
(Certain referenced negative mention is
of course necessary to cover conflicts
of interest and economic and political
forces that are critical to the history
and politics of the disease and cannot
be avoided without going against the
purpose of the site.) I realize that
some of you might want to talk
positively about a therapy that you
like or think might help others. There
are /other/ projects where it is OK to
talk about therapies without
restrictions. I hope you will support
this idea because this is critical to
the coherence of the site. Please
respect my preference that all debate
should use a separate thread so we
remain focused on the goal (if it's a
goer).
17) Explain every aspect necessary to give
somebody an overview. To me this means:
- history
- science
- medicine
- politics
- a link to a brief history of other
denigrated diseases, both past, such as
multiple sclerosis, and present, such as
Gulf War syndrome
- a link to an overview of the major
denialists, including referenced quotes,
major papers, speeches, etc.
- a link to an overview of the major good
guys
- a link to a few brief personal stories
- a link to a brief, journalistically
sound description of human rights
violations
For the present task, I bundled Lombardi et al.,
Hillary's NYT piece, mention of a paper of
interest to the person I'm communicating with,
Carruthers et al. (i.e. Canadian), and a little
self-written history. It will work for now, but I
want a one-stop shop.
I want to start this thread on how we can compile
a THE WHOLE THING site from existing materials
(with permission, of course) and contributions.
The above then becomes a tangible checklist to
measure our accomplishment.
If it works, then we'll have something that I can
send to people like the person I am in contact
with now. Pardon my selfishness in just
explaining what I want and not doing it. I have
done far more than I should just doing this much
(it took a while too) and will take a break
(except for another post I have been working on
for a while). But please know that I will read
every comment you make.
Does this appeal to anybody besides me? Or is
everybody satisfied that existing sites fill their
advocacy needs?Thank you for reading this far.
Samuel
