Nederlog

 

August 10, 2010

 

ME + me :  Alter study and LP nonsense

 

    "One must be much advanced in the study of morality to be able to distinguish between pride and vanity. The former is lofty, calm, highminded, tranquil, unshakable; the latter is base, unsure, shifty, restless and changeable. The one makes men great, the other inflates them. The former is the source of a thousand virtues, the latter gives rise to nearly all vices and every form of deceit. There is a kind of pride that comprises  all the commandments of God, and there is a kind of vanity that comprises the seven deadly sins."
    "The public, the public, how many fools does it take to make a public?"
   “The most utterly lost of all days is that on which you have not once laughed.”
     -- Chamfort

I keep being unwell and intended to continue and complete yesterday's text Real science & real psychology = joy with my notes, but that has to be postponed for lack of energy. Instead, just two brief items today

1. Alter study in press
2. A bit more on the LP nonsense

1. Alter study in press

Here I can refer to Mindy Kitei's site, who first had the news, where it is under todays' date.

This means that it can be on some site any day now - perhaps only for payment, as quite a few publishers, such as Springer, still do, which is a shame and an abuse of science - since it can only be in print if it passed peer review.

Here are two related bits of information.

A. Ms. Kitei writes, also dated today:

On Monday I emailed the CDC press office about this question that Dr. Monroe didn't answer in our interview:  "One of the CDC slides from this week’s Blood Safety Advisory Committee meeting showed that the CDC tested 20 samples from CFS patients that the Whittemore Peterson Institute found to be positive for XMRV.  But, according to the slide, the CDC didn’t find any positives among those 20. Why was this piece of information—that the agency was unable to find positives in any of those 20 samples—left out of the CDC’s XMRV study?"  No word back.  

This is interesting, for it does suggest astroturfing and dishonesty, that should not be in science. (*)

And in the same vein:

B. On PR-F there is a thread on the CDC-website, that seems to be in the process of being adjusted - underhandedly, not up front, no reasons provided - to having to acknowledge persons with ME may have XMRV.

This might be accidental, but then the CDC-leadership no doubt knows what is in dr. Alter's paper that is in press.

Interesting times we live in, if one has or is concerned about ME (the economy, the climate, human stupidity, incompetent leaders, the rot the media keep alive, the decline of civilization, and more).

2. A bit more on the LP nonsense

I am not sure when I was first aware of what I choose to call the Lying ProcessTM but here is my first public reaction to it, still on PR-F, on May 1:

I have no adequate words ready for this LP on the moment but I do have a link explaining LP in FULL principle with adult students of psychology at Stanford, whence it may be inferred it will certainly "work" on a bunch of English 8 year olds or so, just as in North Korea, the former GDR, and scientology:

Stanford Prison Experiment
http://www.prisonexp.org/

Interview with professor Zimbardo:
http://www.believermag.com/issues/20...rview_zimbardo

Readers of Dutch:

Meer over groepsdenken, Zimbardo en Milgram
http://www.maartensz.org/log/2009/NL091228b.htm

Drs. M. Maartensz, psychologist

I do recall writing this, as I was both very tired and very angry, while I should like to insist that the above reaction no doubt conforms to that of most of the psychologists of my generation (since when the universities have been "democratized", the average intelligence of "academically educated intellectuals" steadily declined, wherefore the amount of intellectual or moral BS with "academic" imprimatur has much risen).

This was not long before I stopped writing for PR-F, and indeed here are a few of my last posts there, reproduced now because the addressee since found reason to change her opinions. I refer to the thread on PR-F and quote my own posts from my own copies, and do not quote others (whom you can read by way of the last link).

A. First, here is some by an English woman who calls herself Coxy, who has ME and has two children with ME, and who had decided to try LP around this time and to write about it on PR-F. I had written an earlier post to her, quite friendly and polite, which I can't find right now. This is me on May 5, in one of my last posts on PR-F (this last link is where most of them are now, on my site, still in need of some better editing):

Hi Coxy,

        Originally Posted by coxy

I think all this arguing sums up why ME forums are sometimes dangerous places to be for MEer's. Maarten you clearly don't have the time of day for this kind of therapy, you haven't tried it, but are willing to scare the hell out of everyone else who may be contemplating it.

I don't have to try Maoism, Fraudianism or BS to be able to dismiss it rationally, Coxy, and I happen to have the qualifications Phil Parker lacks.

I have been round and round in circles over the years buying supplements, trying this trying that. I have jumped at trying anything that more than a couple of people on a forum have recommended, only to find i was out of pocket and there was no change for me or the children in some cases.

I have been there too, except for children, since my wife - also a psychologist, or better, in her case: a neuroscientist - and I fell ill before getting as far as that.

Maybe ME and CFS are 2 completely different illnesses, who knows. All i know is that all 3 of us had every ME symptom on the list between us over the years. obviously some people were lucky enough to be well informed early on in their illness to stop it progressing to a severe state, we were very luckily. Having said that, when children can't go to school at all and have to do online learning, i think that's pretty severe for a child!!

True.

I guess you'll be excusing me of working for the LP next, that seems to be standard procedure for anyone who talks positively about it!!!!!!!!!!

No, I believe you. In fact, I have met quite a lot of people temporally enlightened - they thought, perhaps still think - by what I and other psychologist consider so much nonsense. (I live in Amsterdam, that has LOTS of "alternative" this and that since 1965 or so, of all kinds and flavours.)

I have seen persons I knew fall for Bagwan, for Mahariji, for macrobiotics, for Jesus' Children, for .... God knows what, and ALL of them were initially ecstatically happy with their findings.

I have seen the same persons grow resp. insane, hooked on heroine, with wasted health, and again insane after 3 to 15 months. At least two of these were very good friends for a while - and I am summarizing here about a decade of Amsterdam experience (and could mention much more).

So... I hope you are cured of whatever ailed you, and you certainly have been freed of a lot of money, that will motivate you to believe that it was not spent in vain (look under "Cognitive Dissonance" on the net).

I really hope it wasn't spend in vain, but - unfortunately - if you or your children have what has ailed me (and my ex) for 32 years now, my expectation is that you'll find eventually that you may be mistaken.

In any case, I recommend that you'll be careful with spending more money on LP, and in documenting, preferably in photocopy etc., what they told you, prescribed you, promissed you, had you sign etc. just in case you find in a year's time a reason to show the same to a lawyer.

Best wishes,

Maarten.

Note that I wrote like that because Coxy had been polite and clear before; I liked it that she had the courage to write about what she did; and it must be pretty desperate to be a mother with ME with two children with ME.

B. There was a little more correspondence, also with others, and I finally concluded thus (with links mostly added today):

Hi Coxie,

I really believe you mean well, and that you met people with such claims, and I certainly understand why someone like you would be desperate for a cure - I am, albeit within restraints, and have no children to take care of.

However, Coxie... the stories I told briefly in a previous post are true, and very bitter if you were to know all, and indeed involved two of my (former) friends, both dead now.

My recommendation is as before: Be happy for yourself, but document whatever is relevant for your rights, and don't believe all you're told by people who ask money for telling you these stories, now or later.

For you can be sure of this: My advice has been gratis, and I am not out to deceive you in any way, and am not secretly aiming at your remaining cash reserves.

I am just writing this because I got irritated with Sir Bob, and because it seems to me my psychologist's duty to call: Whoaaah! This is rot, and it stinks - and to discuss it as Sir Bob wants is merely to get it better known, give it more Google points, and make more riches for Parkerites, and that is not what this forum is for or about.

Also, an underlying point for me is that I feel that this forum is being trolled by quite a few, including at least one moderator, and that for that reason I'll be moving myself to my own site mostly, since on this site too many people are cleverly sucked into discussions they are not really qualified for, because they are honest and deceived by a very reasonably looking nice bait kept in front of their noses by totally worthless crooks.

That's also why I ask for qualifications, and why I will move to my site mostly:

This forum falls too easily prey to anonymous people posturing as if they know something, but who don't, but are and remain covered by their anonymity and their "honest" assurances they "mean well".

I have no cures to offer, except that one like me is far more effective by not having to spend time on Sir Bob's feelings or those of others, who don't fear to thread where they have no business threading (he said optimistically, dreaming of the LP yearly turnover), simply because on a forum like this one gets anonymous access and then can say what one pleases as soon as one somehow has impressed a few people one has ME - which is an easy thing to do for a psychiatric or psychological pro with bad ends, since on a forum like this so much depends on good faith, as it is called. And on a forum like this, where the Wesselites can freely troll, many are afraid to be found out by Wesselites, and rightly so, and I have been yesterday offended in a very pro way by a very pro, that I want to do a little skinning of, without lots of people I like telling me "No, no, no: for skinning you need The Full Proof". (No thanks: I don't.)

So I will be soon writing again more for my site than for this, simply because I am FAR more effective there than here, where I am gagged by would be goodies who are real phonies, and who can remain anonymous while pleading loudly and as if offended that they ought not to personally criticized, or should be free to discuss any topic they please in any way, without being called to prove their qualifications to do so reasonably and honorably.

I think you have been deceived, Coxy, if you have what I and my ex have, and you should take strength from the fact that many extra-ordinarily clever folks have been hoaxed by pros. Just think of Madoff, the Phil Parker of private investment banking...be glad you didn't fall for his spin, for then you would have been financially even worse of (seeking a silver lining ) and you and your children might be begging for food, homeless in the streets of Beautiful Blarified Thatcherized England.

Best wishes,

Maarten.

P.S. Who has a website since 14 years - www.maartensz.org - which proves as clearly as anything can be personally proved on the internet, that he is what he says he is.

C. So I am somewhat intellectually satisfied to read on PR-F today this post by Coxy:

LP is the so called cure to me/cfs that isn't a cure, it stands for lightning process and it's a very expensive 3 day therapy.

There is some more to be found by her, but that is the fair summary of it. It's not morally satisfying for me, in that she still is an ill mother with two ill chldren, but I do like it that she has the courage to own up to her experiences, and it should give other people with ME some pause before shelling out a lot of money for LP.

Let me end this by explaining why I am so certain that people who do

have what I and my ex have

are not helped by exercise nor by LP nor by CBT, apart from my knowledge of psychology and my general intelligence and scientific erudition:

Having ME now for 32 years without help I have been forced many times to exercise more that I should have, simply in order to survive, to move house, to get shoppings, to clean my house etc.:

Surely it is possible to force oneself to do more than one feels one can do. Surely it is possible - up to a point - to push oneself through one's pain and do something physical because it needs doing. Surely it is possible to be pushed through one's pain and do something physical by a plausible "therapist" or "trainer" with plausible promises.

Indeed, I have been forced to do so many times, the past 32 years without help while being ill - and each time eventually I had to pay it back in terms of Post Exertional Malaise (PEM), as the phrase for the symptom is: Days, weeks, months, in my case years with more pain, less energy, more physical problems, more malaise, more misery in bed, by force and not by desire, simply for being to miserabole to be anywhere else. Simply for doing too much, feeling or being forced to do as much, in spite of pain, fatigue, sweating, cramps, tremors and dizziness.

And this is again why I find both Graded Exercise Therapy (GET) and the LP scam such disgustingly immoral proposals to make to persons with ME, at least by those who should know better, such as psychologists, medical doctors and psychiatrists, or who do it for money, pretending to have a cure.


P.S. Those who are looking forward fondly and impatiently to my notes to Real science & real psychology = joy have to have a little patience.

And I myself am looking forward fondly and impatiently to dr. Alter's paper, and predict confidently that it will change things in ME-land, whether it is basically unaltered in implications (as seems the probability) or whether it is altered in implications.

(Oh yes... I am not vain.)

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.


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

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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


P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.


(*) It is well to remark that (1) in fact there is rather a lot of fraudulence in scientific publications (Wiki link: interesting) simply because such publications are about money, status, reputation, tenure and indeed power, at least in "the scientific community" (of one's specialism) or in one's university, while (2) this is rarely investigated or indeed proved, because it is a personally risky subject (which scientist will say he or a colleague "massaged the data", plagiarized, or simply fantasized the lot), which (3) usually - apart from plagiarism - only is provable in hard sciences.

So it is not so very strange that Reeves, Wessely and Bleijenberg have gotten away with publishing a lot of pseudo-science: In the fields of psychiatry and psychotherapy, simply from the existing evidence in the so called scientific journals of these so called sciences, it is evident that pseudoscience - in some form or shape, not always intentional - is and has been the norm and the common practice, ever since Freud started most of it with his psychoanalytical fraudulence.

 

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