February 7, 2011


me: On a new Kitei Editorial + 百花齊放,百家爭鳴


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 that for 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 he says.

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 it.

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 amused me:

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 drink problem").

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 gender).

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 "with a 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 well explained by Cristopher Browning in 'Ordinary Men'.

Now back to the billions of humans without cojones, and 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 indentation:

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 Kitei, I 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?

Besides... 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 corrupts".

Then again, most activists I have seen in my life, from Daniel 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 totalitarianism).

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 letters do?

Well... it's a thought - but to me it seems a wishful thinking 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 ignorance, stupidity, conformism and wishful thinking in his supporters.

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 百花齊放 etc.:

"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 百花齊放,百家爭鳴 (= 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 know science!

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.

百花齊放,百家爭鳴  (*)

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 ago.

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 punishment.

2. Naive instrumental hedonism

Conforms to obtain rewards, to have favors returned.

Level II. Morality of conventional role-conformity

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 and conscience.

Conforms to avoid self-condemnation.

"Kohlberg's 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.

According to 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 & Atkinson]

In brief, the human average, and humans on average also if not average themselves, act towards each other according to the principle that "actions 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 Recent Changes: Summaries of relevant changes on the site.

As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources

Maarten Maartensz (M.A. psy, B.A. phi)

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