February 4, 2011


me: "Everyone's a critic now": Discussion of Kitei's Editorial


   "The grand primum mobile of England is cant; cant political, cant poetical, cant religious, cant moral, but always cant, multiplied through all the varieties of life."
   -- Lord Byron

   "For the bullshitter (...) is neither on the side of the true nor on the side of the false. His eye is not on the facts at all, as the eyes of the honest man and of the liar are, except insofar as they may be pertinent to his interest in getting away with what he says. He does not care whether the things he says describe reality correctly. He just picks them out, or makes them up, to suit his purpose."
     -- Harry Frankfurt, "On Bullshit" 
   "Everyone's a critic now"
   "The point is that authority has migrated from critics to ordinary folks, and there is nothing – not collusion or singleness of purpose or torrents of publicity – that the traditional critics can do about it. They have seen their monopoly usurped by what amounts to a vast technological word-of-mouth of hundreds of millions of people.

We live, then, in a new age of cultural populism – an age in which everyone is not only entitled to his opinion but is encouraged to share it."

To continue my Nederlog of yesterday, Bleijenberg + Kitei's Editorial + "Everyone's a critic now", I deal today with a few of the comments to that editorial.

By way of introduction, a few pointed remarks

  • I let the opening quotations of yesterday stand: Patients, "patients" and trolls may be bullshitting themselves or others just as pro shrinks and politicians may.
  • When I last looked - see the last link, if you're interested - there were 44 comments, of which by far the most were by that genius and moral hero Anonymous. I'll skip all of them.
  • In fact, I will only quote from persons that I am at least fairly certain of who they are: I am utterly sickened by anonymous cunts like "Bob" and their ignorant impertinent rot.
  • I quote in the order that the comments are given on Mindy Kitei's blog, and I quote in blue with indentation - and please note that all that follows is from the Comments to Mindy Kitei's Editorial I reviewed yesterday.
  • Finally, I write my comments only for the few who have good minds and have ME, and have no illusions about the good I will do, and I start with a nice ironical link that did not appear on Ms Kitei's Blog (where I did not appear either: no taste for it)


0. The Beatles: "You say you want a revolution"
1. John: More biomedical research
2. Mindy Kitei: Flawed research, no more psy, start the revolution
3. Tom Kindlon: Psychological research may be valuable
4. Erik Johnson: There's only limited funding and it should go to biomedical research
5. John: More biomedical studies, please!
6. Mindy Kitei: Freedom, my blog, stop thinking, bottom lines, stop bickering
7. Mindy Kitei: Get behind enemy lines. Frighten the enemy. Don't take prisoners.
8. Erik Johnson: We need confrontation and shock value - niceness doesn't work

9. Angela Kennedy: Against anti-intellectualism and false opposition

0. The Beatles: "You say you want a revolution"

Let's start with a nice bit of music, under the link with video in full colour, to cheer you up, inspire you, and provide some perspective and background:

You say you want a revolution
Well, you know
We all want to change the world
You tell me that it's evolution
Well, you know
We all want to change the world
But when you talk about destruction
Don't you know that you can count me out

You say you got a real solution
Well, you know
We'd all love to see the plan
You ask me for a contribution
Well, you know
We're doing what we can
But when you want money
for people with minds that hate
All I can tell is brother you have to wait

ah, ah, ah, ah, ah...

You say you'll change the constitution
Well, you know
We all want to change your head
You tell me it's the institution
Well, you know
You better free you mind instead
But if you go carrying pictures of chairman Mao
You ain't going to make it with anyone anyhow

I have given the lyrics without the assurances at the end of the verses, but then you can find these yourself in the links.

Incidentally... my father, mother and grandfather were heroes of the Dutch Resistance against Nazism, and my father and mother were all their adult lives revolutionary marxists; I gave marxism up when I was 20 because of having seen the pseudo-revolutionaries of my generation muck up things and make a career (my father and I agreed on this: Here is his diagnosis of the revolutionary students of the late sixties: "Son, they are petits bourgeois run mad"); I have nevertheless been a studentleader trying to stop my generation of pseudo-leftist, pseudo-revolutionaries take over the universities and destroy them with political and postmodern bullshit and failed in that, but was removed three times from the university for it; and I found the power and courage in myself to resist Amsterdam drugsdealers protected by the mayor and municipal police who threatened to kill me, and in thanks got no help whatsoever, and was refused what little money for having my house cleaned up so as to be able to get a Ph.D. Also, I am highly gifted intellectually.

Nevertheless, I should be lectured by nitwits and moral zeroes like Patricia Carter or Bob the respect rat from PR-F about what to do and what to think?!

Are you kidding me?

But then again, they are probably not: Cort The Creator now has a shop and some hope for income; Patricia Carter will no doubt set up a shop in CFS-wares and ads if she can, as did Mindy Kitei, I found today; Dan Moricoli has a shop for Dr. Klimas; Marly Silverman, the totalitarian dentures in her pink jumpsuit who is a former US bankmanager has set up a big shop and so on, and they all are in the business of flattering the masses while discriminating the minorities that are outspoken, intelligent and/or moral.

I don't fear for "our leaders" of "our community": They'll survive and make money, I don't doubt, and maybe they don't even have ME. I do fear for the anonymous ill folks who follow their lead, but then I can do little else for these except by saying that yes, unlike all these pseudo-revolutionaries I do come from a truly revolutionary family and have been a student leader, and unlike all these would be pseudo-leaders-cum-shopkeepers I don't make money by my site, don't have advertisements on my site, don't bullshit people about my qualifications, and do have the right qualifications to judge the bullshit of psychologists, psychiatrists and medicine men.

How amazing that pseudo-leaders try to get rid of one like me!

And yes, they succeeded: I can take care of myself, and am not going to be the neutered fool of bullshitters I never met in my life, and whose intellects are tiny while their morals are phony or unreasonable, and I won't be the follower of thousand-raters.

1. John: More biomedical research

I guess but don't know this is dr. John Greensmith. In any case, he has a sensible remark:

Don't even bother with 'no more psychological studies', instead just insist on 'more biomedical research'.

Quite so: Ill patients should not presume to tell scientists what not to research, not because they are not entitled to it, since one is entitled - happily: may it last, as a right! - to say many stupid things, but because it is neither rational nor reasonable, or - if you want an analogy - as rational and reasonable to tell mathematicians what they should not publish.

2. Mindy Kitei: Flawed research, no more psy, start the revolution

I do believe Ms Kitei means well, though I know little of her. But I also believe she is mistaken, while I suspect she will not engage in debate with me, and rather spends energy on becoming herself 'A Leader In Our Community' - a wish all US folks have been brainwashed with in primary school, it seems: "We Are All Leaders!" - which she well may succeed in, although I don't believe in her present revolutionary proposals.

Here she is discussing psychiatric/psychological research and the "critiques" - a bullshit if fashionable pomo term - some advocates have published of these:

However, in my view, critical analysis of flawed research won’t lead to change unless the government is relentlessly made aware of it. Most ME/CFS patients have limited energy. That’s why I believe that energy is best utilized by getting the government to understand that patients are mad as hell and not going to take it anymore.

Actually, "the government" for the most part doesn't care, doesn't know, has no time, and simply is not capable of judging the issues - for which reason there are institutions in the US like the NIH and the CDC.

Probably the best hope here is that some really intelligent and educated folks with ME - who as yet have not been hunted from forums and "communities" by fake trolls posing as leaders or envious nitwits avenging their stupidity on their betters under the guise of being an anonymous patient - succeed in moving parliamentarians, Congressmen, Senators or perhaps celebrities to do their individual best to get things moving.

But you do that with intelligent well-written ideas, proposals and criticisms, not by an unrelenting shower of thousands of mails with the same text with the same grammatical mistakes and the same fallacies by people who are rightly offended but wrong in supposing they can argue science, politics or morals on any high or credible level.

Ms Kitei - half my age, without my background, not precisely highly educated but probably doing the best she can - disagrees:

I believe that bombarding the NIH, CDC, Kathleen Sebelius’s office and members of Congress with a campaign that says, among other things, “NO MORE PSYCHOLOGICAL AND CBT STUDIES for ME/CFS” will probably stop them—that is, if enough patients persist long enough and hard enough.

I have explained yesterday why I believe that is a rather dumb, romantic delusion: Not even The Fab Four succeeded in changing the world in any way that conformed to their desires, apart from selling records.

How could a few thousands or tenthousands of mostly identical mails, evidently not written by pro scientists or pro writers, make a difference?

And pray, Mindy dear: Do you mean to suggest, as the psychos do, that it is the fault of the patients if your harebrained plan misfires or doesn't pan out?

The philosopher Voltaire said that reason always consists of seeing things as they are. What I see is that huge tax dollars have led to break-through research and effective antiretroviral therapies for HIV, while ME/CFS patients get CBT and personality-disorder research, antidepressants and sleep meds. And what I believe is that the ME/CFS paradigm will not change until ME/CFS patients unite and compel the government to cut the crap and start doing the right thing.

Voltaire wrote a philosophical dictionary, but generally is considered a writer rather than a philosopher, though that is a mere incidental remark.

I agree with Ms Kitei on what is happening, but I disagree on her diagnosis: It is a harebrained totalitarian ideal to seek to "unite" "ME/CFS patients": There are millions of them, from all walks of life, from most religions and most political convictions, mostly without any good education or great proven abilities, and often fighting on their own forums about lots of things.

How do you want to "unite" such a heterogeneous group? What is the point of insisting they should "unite" - apart from the joys of scolding whomever disagrees with you as an opponent of "unity", in fact: a traitor of "Our Cause", just as Stalin and Mao played that totalitarian game?

3. Tom Kindlon: Psychological research may be valuable

Tom K. is an associate of Ellen Goudsmit, and should take very good care, as he may read here: !!HEALTH WARNING!! !!"BEWARE OF THIS SITE"!! and here: On "harassment" by internet not to be publicly defamed and slandered by her, since Ms Goudsmit thinks - she wrote publicly - that mathematical types like Tom or me are quite incapable of understanding the rocketscience Ms Goudsmit only can comprehend, as A Clinical Psychologist, no less. (Besides, if Tom - who is Irish - gets in trouble with the IRA and gets threatened with murder, Ms Goudsmit will probably let him know, as she let me know, that the situation with the trams in his capital is far more serious than his being threatened with murder, violence or gassing by criminals protected by corrupt policemen, or his not getting help to get a degree or Ph.D. That is what she let me know, after all, moral and intelligent as she believes herself to be.)

However, and in any case, Tom K. usually makes sense and indeed knows science and mathematics, and writes, quite correctly

Also, in my opinion, some psychological research can also have a value. Lenny Jason for example has produced many interesting studies.

Quite so. Most psychologists, like most psychiatrists, indeed like most people, or so The Good Book Ms Goudsmit and so many US folks believe so strongly, are up to no good - but then a few are, and some more may try, and indeed succeed.

Let's not write them off, and not wear blinkers that keep out the facts continuously, if you please.

4. Erik Johnson: There's only limited funding and it should go to biomedical research

I believe this Erik Johnson is the man from Lake Tahoe, and not the neurasthenic Nietzschean creep that is so much beloved by Patricia - let's poison the bloodbanks - Carter, who seems to spell himself "Eric". In any case, he wrote

When psychiatrists start declining funding for studies into CFS because they understand how DESPERATELY this money ought to go for biomedical research, then I will start to believe they really do mean well.
Until that time, their knowledge of that desperately-ill patients are falling into a black hole of no-real-treatments means they are violating the Hippocratic Oath by doing harm.
Indirect harm is still harm.
Assuaging their guilt by prescribing paltry palliatives does not get them off the hook for what they do.
One who knowingly receives stolen goods is still liable for his actions, just as if he were the thief himself.

With this I quite agree, and I would like to see these psychiatrists and health bureaucrats be prosecuted in law, when there is a good biomedical explanation for ME/CFS. But till then there is little chance to do so with success.

5. John: More biomedical studies, please!

This is the same John as in nr 1 above I believe, and he says again something that seems quite right, and is in line with Tom Kindlon above:

Even if there were no more psychological studies at all, ever, across the whole world, that does not mean that there would automatically be an increase in biomedical studies, which is what we really want in the first place. Analysis is great but don't lose focus- even if you disproved every single psychobabble explanation for ME/CFS in existance, that doesn't mean you've moved one inch closer to proving what ME/CFS actually is. Disproving psychobabble won't make us any better and what's more the only way the psychobabble will truly be disproved is to prove what the biomedical cause is. More biomedical studies, please!

Quite so - and if patients want that they should try to campaign for that, rather than presume to dictate the NIH what they should not research.

6. Mindy Kitei: Freedom, my blog, stop thinking, bottom lines, stop bickering

More Mindy, opening with this pomo golden oldie:

Everyone is entitled to his or her opinion.

Like Hitler, Goebbels and Mao, and Glen Beck and Rush Limbaugh, and Bob and just anybody else, isn't it Mindy? Or do you perhaps write cant without realizing what it means? Many do: Please try to imagine what is meant, logically speaking, if you write down something. One can, if one tries, you see.

This is my blog, and I'm giving my opinions. In my view, many patients with ME/CFS are running out of time and some have already died, including one of my best friends.

OK - and that is a good motive for a journalist to be interested in ME/CFS. In fact, many have died in the past 33 years that I am ill, and without having gotten any help, while being slandered and discriminated by bureaucrats. So Mindy and I agree on that fundamental point.

As I’ve said before, HIV/AIDS patients changed things by confronting the government. Spending countess hours debating the minutiae of these psychogenic studies is at this point, to me, a waste of energy because most people don’t have the energy to debate among themselves and confront the government.

Well... no: Mindy is not the mistress of my time, nor of that of other people, and I don't like the card: 'Do as I say or I accuse you of wasting time and energy'. I can think and I am an adult, and she is not a nanny, and shouldn't give herself airs as if she were one. Again, that is a totalitarian trick or mode of wishful thinking: 'Who is not for me, is against me'.

What I believe, bottom line, is that any CBT, psychological, and personality-disorder study is a waste of money and hurts the cause because it drills into readers the enormous lie that ME/CFS is a benign malady, where in fact it's a devastating disease, rivaling endstage heart disease and endstage HIV/AIDS.

I agree with the beginning, but with the end only if it is qualified so as to be true of persons with severe ME. Most patients with ME are not as bad as that, happily - and it is disingenuous to suggest they are, for it doesn't accord with the facts. Then again, I agree it is very much needed that people with severe ME get help, support and disability benefits.

These psychogenic studies are also taking away from dollars that should be spent on biomedical research into ME/CFS.

Yes and no: Yes, in the sense that there is so much money for research, and what is not spend on one kind is spend on another kind, if at all. No, in that what amounts of money are awarded to which kinds of research is a rather complicated health-political process with many relevant factors, including that in the US, England and Holland the rotters have the most power as regards partitioning research-money on ME/CFS.

That to me is the takeaway from these studies. That’s it.

As I just explained, it is not quite as simple as that. Besides, as Tom Kindlon rightly said: Some psychological studies may be good - indeed, some may criticize giving people with ME CBT or GET.

A huge campaign begun the day that study came out directed at the NIH, CDC, Congress and to the study authors that said: “No more ME/CFS psychological studies. Support more biomedical research for ME/CFS.” would have done more good, in my view. That to me is the bottom line: What will do the most good. Patients have talked this through for 25 years. I believe it's time for organized, unrelenting action, just like the ACT-UP HIV/AIDS patients began more than 20 years ago.

I say, as the Brits say: "A huge campaign begun"... of wishful thinking, it seems to me, for the most part. I do agree that "more biomedical research for ME/CFS", but that goal won't be reached by flooding the mail-boxes of some folks at the NIH with thousands of identical mails.

Again, "That to me is the bottom line: What will do the most good": That's what everybody's "bottom line" is like - but people differ in values, assumption, knowledge, readiness for action, courage, and a lot more.

Then again, I am in my 33rd year of ME, and still have no disability benefits even though I have several diagnoses by doctors and specialists since 1989 that I have ME. And there has been rather a lot of "unrelenting action" by people with ME, mostly to no avail, but not because the patients did not try, often harming their health for a long time because of efforts that turned out to be too much and not helpful in furthering their rights.

Finally, the "ACT-UP HIV/AIDS" is a false analogy: They had Rock Hudson; they had many celebrities speak up for them; and they died miserably and awfully, and often quite soon - unlike persons with ME, who can be quite ill for decades without dying from it, except by suicide, because of discrimination and lack of help.

The government has to understand that ME/CFS patients are united and won’t back down. Only then, in my view, will they will give patients what they want and deserve. I believe that until patients become organized, eyes-on-the-prize warriors, nothing will change. Nothing.

I think Mindy is bullshitting herself and her readers: Government can't think and can't feel - only individual persons can. Politicians are rarely amenable to reason, and usually lie and follow their own hidden agendas.

And the trope of desiring or insisting that "ME/CFS patients" are or should be or can be "united" is just totalitarian wishful thinking: ME cuts across all faiths, political allegiances, and modes and lacks of education and wit. You can't "unite" such a diverse group, and it is silly to try or demand it.

As to "won’t back down" and "eyes-on-the-prize warriors": At most 1 in tenthousand have that manner of backbone. My parents had. You probably don't and most with ME probably don't. That's no shame, and probably genetical, hence neither merit not blame, but you should keep in mind that most people in Europe under Nazi occupations collaborated, simply to escape trouble.

Again, what do you want to do: Exhort people to campaign until they get locked up for disturbing the peace? With ME, in a US prison?

The bickering that this post has drawn is exactly what I don’t want to engage in, because again it does not bring about better research and better treatments. I’m choosing not to devote any more time to discussing and dissecting the post.

Well... if you can't defeat a poster in argument you can always pretend that you have better things to do. And we are part of a species that prides itself on being "sapient", which is something that does go mostly by argument, not by dictatorial means or attitudes. You may be thinking that you are right, those who doubt you are "bickering" and perhaps, like the quasi-revolutionary students who opposed me cried, that those who oppose you are "fascists", but that then again would be evidence that the human species is not only sapient but often totalitarian and stupid with it.

7. Mindy Kitei: Get behind enemy lines. Frighten the enemy. Don't take prisoners.

This is another comment of Mindy, which is why it has another number. Here is her inspiration:

AIDS activist Larry Kramer always said that the greatest impediment to change was: "We're all anxious to have everyone love us." His advice was to confront the system and take no prisoners. He also said: "You have to be the enemy and get behind enemy lines. They've got to be frightened of you."

Well... Larry must have had a LOT more energy than I have, and effective medicines too. I lack them, and while I am a male of 1 metre 95 cm I do not stand much of a chance to a guard or policeman who wants to beat me up: I am ill.

And how does one like you, or an elderly woman who is ill since two decades, has pain, can't walk more than 100 metres a day, and never learned to fight "frighten" state bureaucrats with an extensive police force under the button of their cell phone?

O, and both Ceasar and the Nazis got a bad reputation for "take no prisoners" - but I take it Ms. Kitei or Erik Kramer are here fondly romanticizing in an as-if mode of wishful imagining actionheroship.

8. Erik Johnson: We need confrontation and shock value - niceness doesn't work

This presumably is the same Erik Johnson as above:

Kramer's brand of activism trades politeness and diplomatic savvy - qualities arguably embraced by many in the audience - for shock value and confrontation.

"You do not get more with honey than with vinegar. You get it by being harsh and demanding and in-your-face - constantly," he said. "We're all anxious to have everyone love us. It's difficult to maintain that if you have strong opinions."

I have been a studentleader. I am not someone who is easily frightened. I know how to defend myself physically. I am tall. What chance do I have against 1 policeman with 60 IQ points less? None: I am ill.

Mr Kramer is romanticizing and playing Action Hero. Even if I wanted that - and I am far too smart to want that, but suppose - I lack the health, and so does anyone who really has ME.

Mr Johnson has another lesson to impart:

A bunch of us rose to challenge Dr James Jones at Lakeside Hospital in June '86, when he tried to tell residents of Incline Village with the "Tahoe flu" that we had brought this illness of "CEBV syndrome" upon ourselves by poor lifestyle choices, drugs and alcohol abuse.
The gal next to me tried to stop the ruckus by saying those exact words, that you "catch more flies with honey..." and all we were going to do was make him mad at us... and then he wouldn't help.
I replied, "He's already made up his mind about our illness. We have nothing to lose by making him angry".
But in the interests of preserving peace, we sat down and shut up.
That was June of '86.
Guess we saw how the "honey" scenario worked out, didn't we?

That is true - but it forgets that "the enemy" is much healthier, much more powerful, and has much more money, and quite a few of its topranking people are smart bastards. If you cannot defeat a much stronger opponent, it is unwise to start a physical fight, if you are not suicidal and are sane enough to have some self-control.

9. Angela Kennedy: Against anti-intellectualism and false oppositions

Finally, I have arrived at Angela Kennedy, who is activist and a sociologist, with a daughter with ME. I merely lift two points from considerably more she wrote, that I don't all agree with:

Fiftly, you are in danger of being an advocate of philistinism and anti-intellectualism here: because you personally cannot understand how important this knowledge is, you've dismissed it. That's shocked me.

This is in reply to Ms Kitei's strictures on "critiques" of "psychogenic explanations". While I agree with Ms Kennedy that one can't be acting rationally and purposively as a human being except based on some sort of rational understanding, I do not necessarily agree with Ms Kennedy's sociologically based "critiques". Even so, here she is mostly right.

And the same applies to this point:

Without clear argument as to WHY they are wrong - we can never mount a clear defence against the elephant in the room: the psychiatric paradigm of ME/CFS and other illnesses. If you didn't want 'bickering' (your word for people objecting to your comment), you should not have set certain people up in false opposition to others.

Indeed, what with the changes in the DSM-5 and perhaps also in the ICD-11 - see e.g. More on the APA and the DSM-5 - (1) rational criticisms of these plans will turn out to be  very important if there is no generally accepted biomedical explanation of ME/CFS by 2013, and (2) there also is a good chance that some persons in the ME-world, such as Suzy Chapman and/or some others, may succeed in welding connections with others who are opposed to the psychiatrizing of all of medicine.

So far for mostly rational argument on Ms Kitei's Editorial and "plan" - which I put in scare-quotes because (1) I disagree for a good part (2) I think the "plan" sounds half baked and (3) I think it puts naive well-intending ill people at serious risk if they participate in this ultimately action-romantic kidding of one's self and other genuinely ill people's possibilities for making a change in a tough world against a powerful, cynical, strong and immoral opponent.

P.S. Corrections must wait till later.

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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