Let me briefly return to ME and Mindy Kitei, the American
journalist who owns the CFS Central Blog, about whose earlier
editorial I wrote here:
Ms Kitei's earlier editorial led to
some heated exchanges on PR-F
and in the Comments section of Ms Kitei's Blog, some of which I considered in the second link above.
Dated yesterday, there now is another Editoriial by Ms Kitei:
It starts like this:
Is it time for ME/CFS patients to become organized warriors? Is
it time for ME/CFS patients to form an army, united against the
common enemy, the government?
As I’ve said many times on this blog, when the HIV/AIDS patients
started fighting back, that’s when they got results.
And it goes on for quite a while, and most of that while is filled
with prose by Larry Kramer The Aids-Activist, that also figured in Ms
Kitei's earlier editorial+comments, if not with the same length.
Having just read it through - as folks are on
PR-F I expect heartfelt angry complaints by Awol, Jace and such like
that this is MUCH too long a text and too complicated a text to be
given to people with ME to even read, let alone comprehend, what with
ME-impaired brains and ME-brainfog - I find it rather ironical
in that Larry Kramer in fact is complaining that his ACT UP campaign style
does NOT work anymore, in AD 2007 when he made that speech, and
the most part it seems (I am reconstruing his meaning, not necessarily
agreeing with it) because now there are medicines against Aids, and
people aren't dying from it anymore.
That is also one of the things I pointed out in my remarks on Ms
Kitei's earlier editorial: People with ME aren't dying as fast, as
horrible, and in droves as people with Aids did, and indeed also there
were many more supporters for people with Aids, at least after Rock
Hudson and Elizabeth Taylor and such spoke out.
In any case: I am not going to discuss the large amount of
Kramer-prose Ms Kitei quotes, because (i) his situation and that of
persons with Aids is different from mine and that of persons with ME,
both in terms of disease and in terms of social and scientific
support; while (ii) Mr Kramer was outlining in 2007 how sad he felt
that his style of activism, that Mindy Kitei seems to support or wants
to see pwME engage in, does NOT work anymore given that now there are
effective medicines against Aids, that stopped people having it to die
miserably in droves: Exit Aids-Activism as well, it seems, from what
Besides, Aids-activists like Mr Kramer seem to have had a lot more
energy than I have, and as I said, they had a lot more social support,
at least once they had succeeded in grabbing the attention of the media, it is
true, as it is also true that they could grab the attention of the
media precisely because so many were dying so fast and so horribly and
because movie celebrities either got it too or supported those who had
So I do not accept Ms Kitei's analogies for the most part, and I don't see
much of a future for Mr Kramer's style of activism for persons with
ME/CFS, simply because most lack the energy to do
so, and also are neither as threatened nor dying as dramatically as
those with Aids were around 1980, nor do they have the celebrity
support, nor, so far at least, do they have the science that supports
strongly and for most scientists and informed laymen that they are being
very ill from a retrovirus.
Now let me say a few things about Ms Kitei's own prose in her new
editorial, and start with a relative detail that somewhat bitterly
Women versus men
I believe 25 years ago had women been the first to get HIV, ACT UP
would never had occurred. Most women are taught to be compliant and
sweet and reasonable and fair, but it’s going to take cajones to
make change happen for ME/CFS.
First, I suppose
cojones are meant,
and I have them, as did my father and grandfather - indeed also
in the sense very few males have them, for by far the most men
of their generation did not have the guts and character to act
as they did.
Again, while now almost any Dutchmen would agree that
I have been
right about the ruining of Dutch education ever since I spoke out
against it in 1977, namely because a Parliamentary Committee said so
in 2008 (there you have again evidence about the wealth of intelligent
moral brave Dutchmen I live inbetween are characterized by - NOT), there still is no help
for me, and no retribution to the political bastards who engineered
the ruins: They are still in function, still bloated like leeches from
tax-money; still effectively the rich and the powerful.
But then I was a studentleader in the early 1980ies - and I suppose
almost all folks I met on ME-lists believe they could have done at
least as well as I did, since "we are all equals", and I should "respect"
them, or else - which also were the days of
pomo feminism, which
caused my being called "a fascist pig", "a macho", and "a
patriarchical swine" more times than I care to remember, yea even by
female careerists who apparently fondled the genitals of
the chief of the board of
directors of the UvA - a veritable human swine, also in looks - who
removed me, so as to become themselves minister or mayor
(the degenerate and nauseating Guusje ter Horst, since also with "a
So... I am a bit ironically pleased to read that Ms Kitei writes as
if she thinks that women lack courage, and I am curious to see how many
women will fall out with her, and indeed whether The Feminist Activist
RivkaRivka, who attributes to vaginas what others attribute to
balls, will start foaming at the mouth publicly (pomo
fashion, as indeed is this whole continuous public concern with sex and
For my part, incidentally: My mother was also a heroine of the
Dutch Resistance against the Nazis, and the same applies as with my
father and grandfather: My family was in the Resistance when that was
really dangerous; almost all Dutchmen collaborated until a few weeks
before the defeat of the Nazis by the American, English and Canadian
soldiers, and then went into The Resistance "heroically" and
will". But this I am not allowed to say by professor Bleijenberg's
personal assistant, beloved and protected as she is by the lying Patricia Carter, that
honorable soul and great mind, nor by Cort The Creator, who allowed or furthered
that my missing foreskin was thrown into my face, on the day of the
65th anniversary of the defeat of Nazism in Holland. (That's the
size of "the leaders of our community": Tiny, but envious.)
In fact, I myself do not believe women, as a group, are less
capable of heroism than men, as a group, on average, but I do believe
that, compared to my own family, men and women alike, most adults I
have met were far less courageous - and the same applies to others of
their generation: Few people are very courageous, and most adults in
any society try to survive and prosper in it by behaving like the
authorities want them to, regardless of the harm they may be doing, as
by Cristopher Browning in 'Ordinary Men'.
Now back to the billions of humans without
quite specifically to Ms Kitei, proposing how to get organized as patients with
ME, taking her cue from that great
cojones-blessed creature Larry
Kramer The Aids Activist.
I'll consider 5 quotes from Ms Kitei's prose and numbered them for
my reference, but otherwise quote the original, and in blue, with
1. The only way to get people and the
government to do the right thing is to stand up to them. Every kid
learns that when you stand up to bullies, they get afraid and back
down. For the government to be afraid of ME/CFS patients, it’s
going to take a lot of organization and thousands of people rallying
against them. It can be done. But until there is organized action,
nothing will change.
Actually, that is simply false: Governments may do the right thing
- whatever that may be, on occasion - without people standing up to
them; most kids learn there are some bullies you can't beat; and most
organized action groups, whatever their ends, motives, dedication or
membership have failed to change the world as they wished.
In other words: It would be nice to see an organized group acting
for persons with ME, but it is not easy to organize - probably
impossible to organize with anonymous busybodies spending their lives
on ME-forums proppping up their egos at the costs of the egos of
others - and it is not at all certain it will succeed,
2. If fifty thousand people from all over
the world bombarded the NIH, torturing the agency with emails,
faxes, phone calls and letters, demanding that the agency fund the
Whittemore Peterson Institute’s research, I believe it will happen.
If fifty thousand people from all over the world bombarded the NIH,
torturing Drs. Antony Fauci and Francis Collins, as well as
Secretary of Health and Human Services Kathleen Sebelius on a daily
basis with emails, faxes, phone calls and letters, demanding that
Dr. Jim Jones be removed from SEP and telling them who ME/CFS
patients do want in McClure’s and Jones’s places, I believe
it will happen.
Actually, that is simply
wishful thinking: If I get bombarded with EMs
I don't want, I don't even download them, but flush them straightaway
from my provider's hard disk - unread, unconsidered, and without any shame
or worry, for I simply don't have the time of life to read through or
indeed check out more than at most several tens of emails a day.
Apart from that, if the level is that of formletters composed by
the more disturbed lesser intellect of a Bob, I'll soon be
discriminating the whole lot which employs such jerks and or sends out
such idiocies as nutters if I don't have ME and know little about it,
and as deplorably stupid or evil trolling that upsets all manner of
sensible communication if I do have ME or am informed about it.
In any case: If I were any of the individuals mentioned above by Ms
would flush everything I received about ME, unread and unconsidered,
if only from the sheer lack of seconds in my life to read or look at
more than a percentage of a fraction of them.
Also, I'd note that this way I can never be reached by intelligent
folks of good will with well-written arguments, ideas or proposals:
Just as bad money drives out good money -
Gresham's law, of much wider
application than to money - so bad people and bad communications
drive out good people and good communications.
3. Patients have the power. It’s my view that they don't realize
that they have the power, and they haven’t become organized enough
to harness it. But once they harness it, they can’t back down, or
the government will clamp down harder than before.
C'mon Mindy: How naive can you get? If patients had the power, they
would not be in trouble. If patients had the power, there would be
decent health care in the US for all, instead of few. Since when have
patients the power? Outside wishful thinking and ads?
readers of Machiavelli know very well (or should know or
get themselves a real intellect to think with) that all that organized
movements give power to are leaders of movements - who then may use or
abuse the power gained, and usually abuse it, for "all power
Then again, most activists I have seen in my life,
Cohn-Bendit onwards, were into their activism, in the end, whatever
their pretensions and delusions, to gratify themselves, and make a
career or get money themselves.
Possibly that is human-all-too-human, and only truly exceptional
human beings like dr. Martin Luther King, Jr. are capable of
withstanding the forces for corruption that rule so many human hearts
so effectively. In any case, it is what happened, and would be
"leaders" like Cort The Creator or Marly The Dentures-Woman
seem to be in it for themselves, more than for anyone else - which is
condonable for me, but not fit to get enthousiastic about, among other
things because I don't like being conned by their likes, nor do I like
others conned, namely by bullshit and
4. As far as the media is concerned, when a
reporter writes an inaccurate, paternalistic, condescending,
psychobabble story about ME/CFS, if ten thousand patients flood the
online and print advertisers with this mantra, “We’re boycotting you
as long as you support trash stories about ME/CFS," how long do you
think those kinds of stories would continue, particularly given that
newspaper and magazine revenues are in the toilet? Advertisers get
nervous when they get one angry letter. What would ten thousand
Well... it's a thought - but to me it seems a
thought. I don't think it'll work, for a simple economical and a
simple practical reason: The economic one is that even if persons with
ME manage to send "ten thousand" mails to some journalist or editor,
it should be clear that there aren't that many people with ME,
relatively speaking, so losses due to boycott will be minimal; the
practical one is that it is very easy to divert any mail with the term
"ME" or "CFS" straight to the spam folder while never discussing these
in print or on line and never reading them at all. (Also not those few
that are rational and well-written and by informed persons: All
slushed away with the flood of well meaning rot.)
5. “Our days of being democratic to a flaw
at those endless meetings must cease,” Kramer said. “It has been a
painful lesson to learn but democracy does not protect us. Unity
does.” Being polite, fair and reasonable doesn’t cut the mustard
when you’re dealing with the government, as the HIV/AIDS patients
found out 25 years ago and as ME/CFS patients surely know by now.
Again: well.... not so, if you think about it. First, if "ME/CFS
patients surely know by now", what difference did that supposed
knowledge make? None that I can see. Second, "being democratic", in my
own opinion, for which see e.g. my
does not work for most things, apart from
getting the worst bastards in a community get elected with a so called
democratic mandate, that issues in fact from the combinations of
wishful thinking in his
So I agree with Ms Kitei on the merits of
democracy - though I fear that, like most folks, she does not agree
with me: It takes guts to stand apart from the democratic majority of
the deluded dummies, and say "Etiamsi omnes, ego non!", and in fact
this is much frowned upon by those who regard themselves as
"democrats": You need to r e s p e c t
everyone, don't you know, especially the most degenerate liars,
schemers, villains, conmen and trolls.
But I fail to see what good that totalitarian - socialist,
communist, nazi - ideal of "Unity" would bring
about, in case that, per impossibile, it would be brought about by
some divine miracle.
It's simply the wrong ideal and the wrong modus operandi to propose
to persons with ME - from all walks of life, all religions, all
political convictions, all levels of education:
"Please, please, please UNITE behind our Stalin Cort, The
Creator; our La Passionaria Carter, The Living Death; our
Riefenstahl Marly, the "Ein Reich! Ein Volk! Ein Führer!" prose
stylist, and your will will be done! Trust me!
Trust our leaders! They'll usher in The New Dawn Our Community
Wants! They'll Heal Mankind, yea, even those without
cojones! (If the
FemSoc Leaders allow, of course.)
So I for my part follow the poetical advice of another leader of
men, reported to have
cojones as well: "Let a hundred flowers blossom etc. aka
"Letting a hundred flowers blossom and a hundred schools of
thought contend is the policy for promoting progress in the arts and
the sciences and help for people with ME allover the world"
The above is not quite what Our Chairman said, but then I do like
Letting a hundred flowers blossom and a
hundred schools of thought contend) as a principle, for I
am a liberal non-totalitarian man.
So that is my advice: Make your own website! Make your own Blog!
Write your own texts! Cooperate with folks like you - ill like you,
intelligent like you, educated like you - and then, once you have some
following or traction, with others.
Do not follow the leaders who have shown themselves to be dysfunctional - that
is, those who have set up shop already, and pretend they are something
special: They are not.
Speak for yourself! Do not loose time and energy by lengthy
exchanges on patients' forums! Do your own thing! Be your own person!
Cooperate with those like you! Leave alone the stupid, the
imposturers, the bullshitters, and those who can't write and don't
And no... I do not guarantee this will work. But it will
give you some self-respect; it will enable you to defend
yourself a bit better; it may bring you fame as a Blogger or
site-owner; and eventually it may get together sufficient people of
sound sense, real abilities, and real scientific understanding to make
a real difference.
Finally, meanwhile and also then: The best chance for
persons with ME is real science - the explanation and cure must in the
end come from the work and courage and dedication of real scientists.
(*) Actually, I don't know Chinese, and am
relying on the Wikipedia article "Hundred
Flowers Campaign". It looks nice, and for once I like the Maoist
sentiment (that probably was a trick, or soon evolved into one, as
explained under the link).
In any case, it is what I favour, and indeed, in so far as I
am doing things around ME with others, it is only with the most
intelligent ones, and not with others, since I happen to be inclined
that way, but most are not - unfortunately, for the probability is
that then the problems around ME would have been cleared up decades
P.S. Corrections must wait till later. But there is room and
reason for a table + text that I have reproduced many times, that
applies to folks with ME as well as to folks without it:
Stages in the development of moral values
Level I. Premoral
1. Punishment and obedience orientation
Obeys rules in order to avoid
2. Naive instrumental hedonism
Conforms to obtain rewards, to have
Level II. Morality of conventional
3. "Good-boy" morality of
maintaining good relations, approval of others.
Conforms to avoid disapproval,
maintaining good relations, dislike by others.
4. Authority maintaining morality.
Conforms to avoid censure by
legitimate authorities, with resultant guilt.
Level III. Morality of
self-accepted moral principles
5. Morality of contract, of
individual rights, and of democratically accepted law.
Conforms to maintain the respect of
the impartial spectator judging in terms of community welfare.
6. Morality of individual principles
Conforms to avoid self-condemnation.
studies indicate that the moral judgments of children who are seven and younger
are predominantly at Level I - actions are evaluated in terms of whether they
avoid punishment or lead to rewards. By age 13, a majority of the moral
dilemmas are resolved at Level II - actions are evaluated in terms of
maintaining a good image in the eyes of other people. This is the level of
conventional morality. In the first stage at this level (Stage 3) one seeks
approval by being "nice"; this orientation expands in the next
stage (Stage 4) to include "doing one's duty", showing respect for
authority, and conforming to the social order in which one is raised.
Kohlberg, many individuals never progress beyond Level II. He sees the stages
of moral development as closely tied to Piaget's stages of cognitive
development, and only if a person has achieved the later stages of formal
operational thought is he capable of the kind of abstract thinking necessary
for postconventional morality at Level III. The highest stage of moral
development (Level III, stage 6) requires formulating abstract ethical
principles and conforming to them to avoid self-condemnation. Kohlberg
reports that less than 10 percent of his subjects over age 16 show (...) this kind
of "clear-principled" Stage 6 thinking (...)" [From:
"Introduction to Psychology" by Hilgard &
In brief, the human average, and humans on average also if not
average themselves, act towards each other according to the principle
are evaluated in terms of maintaining a good image in the eyes of other
people. This is the level of conventional
morality" with the result that "many
individuals never progress beyond Level II", and that
is the normal, average, conventional level on which the normal,
average, conventional role players that human beings tend to be in vast
majority operate on.
Also note that "Kohlberg
reports that less than 10 percent of his subjects over age 16 show (...)
this kind of "clear-principled" Stage 6 thinking (...)"
- indeed as I found out myself on ME-forums, and before that in the
university among students and professors, all of whom pretended to be
very moral and at least rather intelligent, about which nearly all were,
respectively, quite lying and quite mistaken. (I am sorry to say, for my
life would have been very different with an average that was on average
as intelligent as I am: No such luck, alas.)
And the Mindys and other activists of this world should realize that
the folks they address are, for 90% or more, at best level
II characters in morality: NCO-material at best, auf Englisch, i.e. with
hardly any notions or initiatives of their own, if helpful and friendly
on occasion (if that is not risky, and does not involve loss of face).
Maybe I should also say that so far this year I have kept up with
Changes: Summaries of relevant changes on the site.