September 20, 2012

me+ME: Lipkin and Racaniello talk | George Carlin talks | My eyes and M.E.


1. Drs Lipkin and Racaniello talk
2. George  Carlin talks
3. My eyes and my M.E.


Let me start with repeating that I reformatted the XMRV is dead Nederlog of Sep 18, 2012 yesterday to something looking quite a bit better (since I DO have problems with my eyes). I also considerably improved the opening of my site, and made the background square in the middle light blue instead of white, for that is better for such eyes as I have.

So, if you want a much better looking version of XMRV is dead also with some small corrections (not in the meaning but in the expression) it is under the last link - and I say so, because it got a lot of downloads.

This Nederlog is a lot briefer, but contains links to - what I think are - very interesting talks, and also bit more about my eyes, my ME and my B12 protocol at the end. The links to the sections are above.

This was file was corrected and reformatted some on Sep 21, 2012. In fact, this is a second edition: I have rewritten rather a lot, to express the same content in better words, and also have added a note on "Godwin's law", that may interest some who are interested in my descent or that of Simon Wessely.


1. Drs Lipkin and Racaniello talk

I have quite a few times referred to professor Racaniello's blog, that is called virology blog, and did so because he is a professor in that subject and he maintains that blog, and because he wrote quite sensibly about M.E./CFS and XMRV, where he also was quite a few times lectured by patients-or-trolls on his many scientific failings, which he took more kindly than I would have done, even if I were in excellent health.

As to "patients-or-trolls": who is what and why and wherefore is often difficult to say, except that it is clear there definitely are trolls posing as patients and clear that there loonies either posing as patients or imagiing they are.

This is just one of the joys-or-griefs from anonymous internet. Anonymous folks on the internet cannot be found out - at least noy without court order or withouy much more knowledge and better tools than almost anyone has - and so one must judge them speculatively, especially if they have no site or blog of their own, from which one could find out something about their interests, abilities, qualifications and character. 

What I read of professor Racaniello always struck me as quite sensible, but then I did not read very much of him for a very simple reason:

Back in October 2009, when the news about the Lombardi-Ruscetti-Mikovits paper about their "discovery" reached me that I decided would definitely not read up on the virology of XMRV, for four reasons I presenty will give after sayiing why I use her quotation marks:

Namely, because now drs. Ruscetti and Mikovits have, after all, agreed with the conclusion Lipkin et al.'s paper, in which they also were co-authors, that what they found was contamination, as also reviewed in the XMRV is dead Nederlog, and furhermore that there is no link between XMRV and M.E./CFS.

I had four simple reasons not to read up on the virology of XMRV, of which the first three should hold at least as strongly for nearly every patient:

(1) I was almost completely ignorant about virology: I had never been interested in it, and only knew about it from the papers, in relation to HIV;
(2) I am ill and cannot do by far as much as I would like to do, and certainly not read up on a quite technical subject in a field I know little about, except for some books about biochemistry, and those I read several decades ago;
(3) I have many other interests as my my site will show to anyone who is interesed, on which I also cannot do more than 5-10% of what I could have done if I were in excellent health (as I was in 1978: I fell ill on 1.1.1979, with Epstein-Barr, and my ex on 1.10.1979, and we never got better, and separated in 1984).

The fourth reason holds for no patient that I know of and is not easy to appraise properly for those who lack my qualifications, talents and interests:

(4) My degrees are in psychology (M.A.) and philosophy (B.A.), and but for my removal from the faculty of philosophy by both the directors of the faculty and the Board of Directors of the University of Amsterdam, briefly before taking my M.A. in philosophy, and specifically for freely expressing my opinions about the UvA and the education it provided (and provides) in the form of 39 questions, in a public lecture (and I am the only Dutch student ever to be thus honored since World War II), and in fact my real interests and also what I know most about are philosophy of science and mathematical logic (ever since reading Bertrand Russell - see e.g. his Problems of Philosophy, with my extensive notes - when I was 20: I did over 40 years of reading in those fields).

How this relates to M.E., XMRV and the pseudoscientific fraudulent bullshit that psychiatrists and clinical psychologists have spread about M.E., quite simply because that serves their personal interests at the costs of the patients: Like the Nazis slandered the Jews for political profit, on mostly insane grounds, the psychiatrists slander patients for personal profit, on mostly crazy grounds (and in either case there may be a considerable - possibly unconscious - amount of  sadism involved, and see my note in case you think "Godwin's law!": I do have both a moral and intellectual and a personal right to say, also in view of professor Simon Wessely's claimed family background ) can be seen from On natural philosophy, philosophy of science, and psychiatry for one example, and from More on the APA's mockery of medicine and morality for another.

But all of that was only to lead up to the subject of this section, which is a quite interesting conversation professor Racaniello had with professor Lipkin, the main author of the paper revied in my Nederlog of September 18 where you also can findd a link. The conversation can be found here:

twiv special a paradigm for pathogen de-discovery

which you can also find from professor Racaniello's (he pronounces it with a "k"):

virology blog

In the text under the last link several patients complain they can't hear it or download it, but then I run Ubuntu, and know Windows Media is simply awful (and MS Windows a goldmine for MS, evil hackers, spammers, phishers, dataminers, and secret services). Besides, Linux is simply a lot better than is MS Windows, and made by people who care for computers and high civilization, and not for making money and low civilization in the interest of the rich - and see below.

Here is a brief bit from it, that I quote from Phoenix Rising, that in turn quoted it from the mecfs-forums I am removed from and can't access, I suppose because I can think and am not afraid to say what I think, which indeed are precisely the reasons that got me removed from the UvA.

Here is a piece from the conversation, with professor Lipkin talking:

Many, many years ago when I was working with…I was asked by CDC to look into the potential role of Borna Virus and Chronic Fatigue Syndrome … this was back in the mid 1990’s to late 1990’s, there was a report that came out of Japan suggesting that Borna Virus was implicated. And 50 percent of cases were reported to have nucleic acids and there was a family found where three-quarters of the people in the family had Borna Virus nucleic acids, and were also antibody positive. So Brian Mahy, who was then Director of DVRDD, who ran afoul, ad you may remember, of this whole issue of whether or not enough money was being invested in this research, asked me to look into this, and I looked into Gulf War Syndrome which was also very topical at the time and I looked at these Chronic Fatigue Syndrome patients, many of them coming out of a clinic that was run in the Karolinska, which at that point was one of the best clinics for CFS in the world. And we found no evidence of Borna Virus nucleic acids. And our ELISA’s were positive but our Western Blots were negative.

And when I tried to report this finding, I wound up going to progressively less impressive journals until I finally wound up with the one in which it was published. And there was a great deal of reluctance to publish the paper because, the saying at that point was, you know, you’re just not good enough at doing this, and this was why it’s all negative.

(Racaniello laughs.)

And it took almost two years to publish that particular paper, which is how I learned the lesson of making certain that people who originally do the report are the ones who are engaged in proving or disproving the concept.

But at that point, the one thing that struck me was that many of these individuals, I think it was close to two-thirds, something like 67 percent, were reactive with Borna Virus proteins in ELISA but negative in Western Blot, but they were also reactive with FLG (?) and Beta galactacytase, and I would love to conclude that they had polyclonal B-cell activation, so at the very end of this paper which appears in the Journal of Neurovirology, I said these patients are clearly sick in some way. They have some kind of immunological activation. I don’t know why, but it is not Borna Virus.

So I am convinced, after working in this field for, you know, for a very long time, that this is a bona fide syndrome. I don’t believe that it necessarily has a single cause. I don’t pretend to have insights into the pathogenesis of CFS, but one of the things that we want the community to take away very clearly is that the people who have engaged in this study and many others around the world are committed to trying to understand why they’re ill. We have reagents , we have resources now that can be applied to this task, and that just because this particular hypothesis hasn’t borne fruit does not mean that there won’t be an answer downstream. And we’re trying, you know, to do that work as rapidly and efficiently and as rigorously as we can.

At the end of the conversation he also mentions Judy Mikovits Ph.D. statement that I quoted in the previous Nederlog, but that is worth repeating, if only because so many patients have followed and trusted dr. Mikovits (who is not a medical but a virological doctor):

Quote from Judy Mikovits Ph.D.:

"Statement from Dr. Mikovits, the author of the Science paper wherein XMRV was first linked to CFS: "I greatly appreciated the opportunity to fully participate in this unprecedented study. Unprecedented because of the level of collaboration, the integrity of the investigators, and the commitment of the NIH to provide its considerable resources to the CFS community for this important study. Although I am disappointed that we found no association of XMRV/pMLV to CFS, the silver lining is that our 2009 Science report resulted in global awareness of this crippling disease and has sparked new interest in CFS research. I am dedicated to continuing to work with leaders in the field of pathogen discovery in the effort to determine the etiologic agent for CFS."
Quote from professor Ian Lipkin Ph.D.:
"Although the once promising XMRV and pMLV hypotheses have been excluded, the consequences of the early reports linking these viruses to disease are that new resources and investigators have been  recruited to address the challenge of the CFS/ME", said W. Ian Lipkin,MD, director of the multi-site study and John Snow Professor of Epidemiology in the Mailman School of Public Health of Columbia University. "We are confident that these investments will yield insights into the causes, prevention and treatment of CFS/ME."
So... if you have M.E. aka ME/CFS (or think you have: I myself have a three-fold diagnosis, by three medical doctors, but it didn't help me much, for the help I can get depends much less on the doctors than on bureaucrats and politicians, who all have swallowed the lies of psychiatrists and clinical psychologists, who have played this like PR-pros, which indeed is all the real science they know: How to lie convincingly like a pro to the public and the politicians to further their own interests, and also theirs, namely to have arguments to spend tax money on bank managers and the enormous losses they created, rather than on people who have M.E.), this conversation is very well worth listening to, especially if you have been following some of the XMRV-story on patients' forums.

If you do not have M.E. you need to have to have at least some basic knowledge of the XMRV saga to follow it: Professors Racaniello and Lipkin's talk is quite clear, but it does use a fair amount of - unavoidable, for the topic of the discussion - virological tech-talk.

I do thank both of them - and as I said in this also is definite scientific progress. How it will unpack for the patients is hard to say, since the psychiatric and psychological pseudoscientific con-men will play this for their own financial and career benefits as much as they can.

For more see my DSM-5: 100 Nederlogs  about and around the APA and the DSM-5  - but the failings of others are not the fault of doctors Racaniello, who did their best to help science forward, and succeeded in doing that and indeed also to help patients as best as they could to keep to the side of the truth and what could be rationally and scientifically said.


2.  George Carlin talks

As you may know, I am a fan of George Carlin. He is  one of  the very few people who talked and thought sensibly about politics and the civilization we live in (others: Bill Maher, Frank Zappa) - which he and I think is going to pieces, most likely: There are too many people for the resources and for the technology mankind has; humankind - yahoos, for the most part, or so Swift suggested - is far too warloving a species - see Mark Twain's War Prayer - and besides, there are too many fools who can be duped all of the time by what they believe to be their leaders, but are their abusers.

Here are some Nederlogs with links to videos on youtube that outline my reasons
    • The above are earlier Nederlogs. The following is new, and especially the second - an interview not long before he died - are excellentLlin
    • Carlin interview on not voting    ("I don't think I can fix it and I think it will not get fixed anyway")
    • "Jeez, he was just here a minute ago...."

      The title ---- "Jeez, he was just here a minute ago...." - is what Carlin said he would like to see as his epitaph. Here is the text from the last link

      "A comprehensive interview with the iconic comedian George Carlin. He recounts his early career from childhood dreams of becoming an actor like Danny Kaye all the way up to his 1960's transformation into a leading voice of the counterculture and then he details the evolution of his writing and finding his true voice on stage in the 1990's. For Carlin fans (if you're not what's wrong with you and why are you watching this?) the final ten minutes is remarkably touching as he chokes up discussing plans he was forming to star in a one man Broadway show which never came to be and then reflects over his successful career and how wonderfully fulfilling his life has been"
3. My eyes and my ME

A. My eyes

If my eyes are the same tomorrow afternoon as they have been since last Friday afternoon, I've had a better week than I have had since months - as you may have noticed from Nederlog.

What is the reason? I don't know. The diagnosis is keratoconjunctivitis sicca, which is latinate for "dry eyes", which may be the cause (too few tears are produced) but somewhat of a euphemism for "eyes feeling like abrasions". My GP has prescribed duratears, and this seems to alleviate the problem. This again is probably part of Sjoegren's Syndrome, which is positively correlated with M.E.

As one might expect, neither the one nor the other has a known explanation, which makes it another potential goldmine for psychiatrists.

It is not at all pleasant, and quite invalidating, also without M.E. (which also happens: All manner of folks - especially females above 40 - may be afflicted by it).

For the past week, I could use my computer more or less - not quite: my eyes still get (more) sore if i too much at a screen - on two necessary conditions: (1) I have to put Duratears in my eyes every few hours, and (2) I have to take care that the screen is as dark as is compatible with reading it.

It is especially white that I can't cope with, so presumably what matters most is luminosity. I have had months when I coulldn't look at a mostly white screen for seconds or minutes at most without feelling my eyes getting sorer.

I am therefore quite glad I could get most things mostly black - especially the inverted setting that is on Ubuntu is very helpful, as I explained in on Sep 17 (check it out if you have my type of complaint!), so that gave me - for the time being - most of the possibilities of my computer back.

B. My M.E.

I have been using a personal version of one of the two B12 protocols since February of this year, and have experimented with other ones since the end of 2010, and it is considerably more probable than not that this helped me.

Here is the last Nederlog with the precise protocol:
me+ME:  Good Things In Life - 2: Linux + mB12 + Chamfort
However, I have stopped the protocol - completely - on Sep 10, 2012:

I suspected the fish oil that is part of it and anyway stopping or altering supplements or medicines I take is one of the few things I can do to experiment whether it effects my eyes. 

The evidence is ambivalent:

I have fewer problems but there are several possible rational explanations for that, such as (i) Duratears, (ii) autonomous fluctuation in keratoconjunctivitis sicca, or (iii) another cause than that, which eluded both my GP, the eye doctor I went to so (with considerable trouble because of my M.E.: Too much standing and walking), the optician (optometrist they call themselves locally, who had made pictures of my eyes that showed abnormalities), and myself.

If my eyes do not get worse or improve, I'll probably restart the B12 protocol, but I will do so carefully and in steps, to see whether I can notice an effect of any of the supplements I take that are listed in the last link, with one exception: I will avoid fish oils, because I realized the effects of those are far less well known than the effects of vitamins and minerals, and because I eat some fish anyway most weeks.

There is one thing which I found pretty amazing, and quite positive amidst all the misery and pain:

I have been sleeping far too little for a long time now: between 4 or 6 hours even with sleeping pills, but so far I have not collapsed, as I have for over 20 years now after sleeping too little just one night or a few more: What  tended to happen was that one night with little sleep, generally because of pains in my legs and also my arms, set up a vicious cycle of more pain --> less sleep --> more pain that was very difficult to get out of.

I did usually, I think mostly because M.E. fluctuates anyway, and the converse cycle also holds: more sleep --> less pain --> more sleep, but in fact this could go on for months, also because I get NO help whatsoever, and therefore am forced to go shopping for food at least once a week, which usually ends with me getting home sweating and exhausted and with more pain, but with food for a week.

Indeed, else I would not be here to tell the tale, but it is one of the cruel things the two Dutch pseudoscientifc frauds Bleijenberg and Van der Meer (now both pensioned, and not having to live on 10 dollars a day, after paying the rent, the energy, the health insurance and the provider, ike I have to do now, for decades also).

C. Carlinesque Divagations

Anyway.... to end with a symbolic return to the beginning:

Although the XMRV-bogus was a snark, one positive thing is that there are quite a few much brighter people than these two frauds, like the medical professors Lipkin, Alter, Montoya, Komaroff, also at much better universities than the provincial Radboud University, or than a major fraud and very minor intellect like professor Wessely - have again insisted that M.E./CFS is a real disease and not a psychiatric considition, just as the World Health Organizatiion has been effectively been saying for some 40 years now.

Incidentally: Van der Meer and especially Bleijenberg are in terms of intellect utter loons: What kept me away for some 15 years from reading up on M.E. was the Ph.D. of Bleijenberg that I was handed by - I think - professor Molenaar, with the query "What do you think of that?".

I thought it ultracrepidarian bullshit, also in atrocious prose, consisting of one long series of utterly stupid fallacies.

Indeed, a benighted mind like Bleijenberg's could not have posibly entered an university before the 1960ies, nor finish it had he agains all odds succeeded entering it: That again was a consequence of the destruction and moronification of the Dutch universities, for which see my published
There we have arrived at the types of Bleijenberg and Van der Meer:

Folks who might have been fine butchers or plumbers, perhaps, but who couild become professors between 1971 and 1995, because those were the times "anything goes" at any Dutch university IF it was pretended to be Politically Correct, thus providing conmen, liars, psychopaths and criminals by the thousands with academic doctorates, and also gave the the power and most of the academic jobs in what were once, until ca. 1965, fairly decent, universities.

Incidentally, the Radboud University Nijmegen, that moved from hypocritical Catholic University - called "Katholieke Universiteit Nijmegen"! - to a fanatically "marxistic" one in the late 1860ies
used to be called Karl Marx University in the time the Dutch universities were destroyed by being ruled by "democratized" "University Counsels", which effectively were Sovjets in which communist students and corrupt Labour politicians destroyed the universities, between 1971 and 1995, incidentally a form of sick, fanatic and insane university government that is totally unknown outside Hollland (and perhaps North Korea), that made them now accessible to half the population, so that one can become a doctor of philosiphy with an IQ of 105.

This is what enabled Bleijenberg and Van der Meer to have fine and wellpaid careers at the cost of the Dutch taxpayers, and what got me removed from the University of Amsterdam for asking questions:

And "so it goes..."

Maarten Maartensz

P.S. My eye problems

                  PS: Any necessary corrections have to be made later.