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Dec 1, 2011               

me+ME: Praying for Mindy and dr. Jamie

Here are some more loony tunes from that
Real Life Cognitive Dissonance Experiment called ME=XMRV:

     When Prophecy Fails

Let me start with clarifying my title.

First, Mindy Kitei is a journalist who writes about ME on her own blog cfscentral since well over a year, of whom I still do not know whether she herself has ME, but who has said that one of her reasons to write about ME is that she has friends who had received the diagnosis and no help, and died. Like many who must know of me and must have read some of me, she chooses to pretend as if I don't exist, which I don't much mind, for I also do not have a high opinion of most people, and I have not been afraid to say so (*), and have been much discriminated for my opinions, including real and repeated (and provable!) murderthreats (unlike professor Wessely, who so far has given no proof he was ever threatened), and indeed I have several times done Ms Kitei the kindness of reviewing her opinions, e.g. here this year, in February, when she wanted To Start The Revolution:

     - me: "Everyone's a critic now": Discussion of Kitei's Editorial
     - me: On a new Kitei Editorial +
百花齊放,百 家爭鳴

The Chinese, by the way, I took from Wikipedia and should be the Chinese for Mao's "Letting a hundred flowers blossom and a hundred schools of thought contend" - and I say so, because I don't know Chinese, but I agree with the idea (that I also think Mao never really meant, but that's an aside).

Second, dr. Jamie Deckoff-Jones is a US medical doctor who has a diagnosis of ME/CFS, like her daughter, and who has been taking anti-retrovirals to attempt to cure herself from it, on the basis of the hypothesis that XMRV is part of the cause or the etiology of the disease, and can be treated with some anti-retroviral drugs aka ARDs. She has claimed some successes with this, but - so far - no cure; has worked for a brief while for the WPI where she was dismissed; is - or was - a friend of dr. Mikovits; and has a blog about her experiments that seems well read and is much commented.

As I have said before, I don't mind if someone in her position experiments with ARDs, though I do not and would not do it myself and do not recommend it to others who are not in her sort of position: She is an MD, she is informed, she knows what it is like to have to survive with ME/CFS, and she should be thanked for her courage in taking the risks rather than criticized. Indeed, if you do not know what it is like to live with ME/CFS, the taking of ARDs is easy to criticize, and is justified if addressed to people without medical knowledge or without medical help, but I do know what it is like to live with ME;/CFS since 33 years now, and such an experiment as this, by an MD, on herself, which is risky, may bring to light something that could not be found without such an experiment, also if the XMRV-hypothesis has no real evidential support, as it seems now is the case. (It may also help some with an ME-diagnosis, though I would guess that in case it does, the disease may not be ME/CFS. Then again, quite a few who have received the diagnosis, or who think they merit it, may not have ME/CFS (**), but a mistaken diagnosis or belief - and I don't say what ails them is psychosomatic, for that is nonsense in any case, as it confuses and opposes the soul and the body, which is just lousy unscientific and unlogical thinking.) 

I have read some of dr. Deckoff-Jones's blogs, but not much, and the last especially because she has been very popular with the followers of Guru Gerwyn, who have used the comments facility under her blog for virtually endless series of innuendo, bullshit and attacks on whoever does not completely agree with their brand of faithfull nonsense, or who even expresses doubts.

Thirdly, when I speak myself of prayer, it tends to be derisive: I am a born and bred atheist, and my mother's family was atheistic since the 1850ies or so. Others are free to believe as they please, within moral and legal limits, to be sure, and you are free to pray if that makes you feel any better - but I do still find it quite ludicrous to think of the millions or billions of mutually contradictory prayers the divinity is forced to process every day, and to think of the fact that each praying person thinks himself or herself important enough to ask God, secretively - one on one, as the cant phrase is - for intercession in his or her behalf.

Then again, Guru Gerwyn believes in God, and believes that he can shine A Bright Light into the Ventura courtroom, all the way from Gerwyn's polymath brain in Wales, and I do not believe in Guru Gerwyn, nor in God, nor in the efficacy of prayer, let alone in Jim Jones-like Communal Sendings of Bright Mystical Light - for which see me+ME: Bright Mystical Lights and Geroupies, also with interesting information for sexual deviants.

After this lengthy introduction, I have arrived at the subject of my title: The betrayal, the faithlessness, the audacity of her daring to differ with Guru Gerwyn, that emanates from Ms Kitei's latest blog, which the reader finds here, with her very own title, dated yesterday:

  The Specificity of the Crazy and A Cattle Prod to the Genitals

If you read Ms Kitei's post, you'll find - I think, supposing my readers are neither idiots nor irrational - a fair summary, that mostly consists of quite a few quite fair questions.

But Guru Gerwyn does not think so AT ALL, I found. Here he is, in Stalinist modus, on the recently created forum for Geroupies aka Gerwyn's Groupies and "sexual deviants" (Flex dixit, and Flex knows The Scientific Method, Flex says, so who am I to dare to doubt a great mind like Flex's?)

I insert some remarks (unindented) with Guru Gerwyn's great and enlighened prose inbetween, indented, and the bits of most reprehensible and faithless prose of Ms Kitei doubly indented in Times Roman. Guru Gerwyn still has problems with formatting, English, writing clearly, and giving references, to I had to format this a bit better than he did:

I dont like this from Mindy at all

Another question: Who was pulling the strings? Did Mikovits see a problem early on—perhaps even before the Science study was published? If so, did she share her concerns with Harvey and Annette Whittemore or Daniel Peterson, or did she sweep her disquiet under the proverbial carpet? And if Mikovits voiced unease, what was the response? Did they insist she soldier on, and they’d all figure it out in the rinse cycle—or could that have been, perhaps, Mikovits’s expectation? At any time was there deception? Was there self-deception?

what is the point of the above speculation.There are no facts there whatsoever

As my readers may have gleaned from Bright Mystical Lights and Geroupies: Real Gerwinesque scientists never ask questions: They KNOW, for they are turned on and tuned into seeing and sending Bright Lights.

More Mindy plus Gerwyn:

Do the right thing. Contending that the retrovirus is hard to culture from blood is reasonable, but how long can you then confidently rely on that assay? You have to develop an antibody test that works consistently or a better way to find the virus—or something. You have to take a step back and figure it out—because if you don’t, the problem will bite you in the ass—and not in a good way. And with this disease the bite always seems to be particularly vicious, the kind that leads to, say, a methicillin-resistant staph infection, several years in the wilderness, and slashing ME’s already dangerously low street cred.

Mindy has no idea whatsoever about retrovirology. the above is not even accurate they have a hell of a job isolating latent HIV from blood as well. There is a wealth of evidence showing that MRVs inhabit B cells which are rarely in the blood. The blame for not developing assays to look for MRV,s in tissues lies with those having the recources to do so. this is just drivel

It would seem to me - who has better and more degrees than Guru Gerwyn, almost certainly, but I do not insist that this is the reason why I am more intelligent than he is - that Ms Kitei's questions, certainly in the circumstances persons with ME have found themselves in, after two years of XMRV, WPI, and of St. Judy The Saviour Of The Sick, seem quite sensible and justified.

It doesn't seem so to Guru Gerwyn, who claims he has ME and claims he has a BA in microbiology:

Mindy has no idea whatsoever about retrovirology.

Says the guy who real retrovirologists with 10^6 times more credibility say is a bullshitter who doesn't know retrovirology, but pretends he does. Since I don't know who Guru Gerwyn is: Is he perhaps Michael Sharpe following his perversions? Or Simon Wessely who also got a son in Cambridge, I think? Who really ever met Guru Gerwyn in the flesh, in his own abode in Wales?!

I mean: He may be for real, in which case - he claims to have a degree in psychology, like me - he should take tranquillizers, in my educated opinion, and in which case he should write a decent scientific paper, or as good as he can make it, and submit that to the Journal of Virology, or to professors Coffin and Racaniello, who may well find it in them, I surmise, to slash him up, verbally and intellectually, for Guru Gerwyn is not - not at all - in their class intellectually, and his followers have much offended them, for a good part due to the Guru's incitements, innuendos and insinuations, for this is how Gerwyn seems to proceed: He oracularly pronounces his opinions and wishes, and his Geroupies execute them with fanatic zeal. (See also: When Prophecy Fails)

More Mindy and Gerwyn:

What should the key players have done if they knew there was a problem? A psychiatrist friend of mine is fond of saying: “Unless someone is planting a cattle prod to your genitals, you walk away when someone is pushing you to do something you find objectionable.” You stand up, you refuse, you do the right thing.

what problem?

I know abstract thinking may be quite difficult for brainfogged BSing B.A.s with issues, but clearly what Mindy means is generic, like a variable in algebra: She says people should respond as responsible individuals, if they run into problems, and not as bleating Gerwynesque sheep, who just KNOW that two feet are bad, four feet are good, and that XMRV=ME.

Could that be why Dr. Daniel Peterson left the Whittemore Peterson Institute so abruptly—back when things were ostensibly going along swimmingly, only a few months after the Mikovits study was published? He wasn’t a bit player in this yarn: He’s the Peterson in the Whittemore Peterson Institute. None of the explanations for his abrupt departure have made a whole lot of sense, at least to me.

he was recieving a grant from the hhv6 foundation that he did not want to lose.he wanted to know details about the research but would not sign a confidentiality agreement. Peterson played no part in the research other than providing the patients. Yes he was a bit player he gave his name to the institute but that is it

From what I have read from Guru Gerwyn he may as well be making it up, all of it, just as he or his acolytes have made up that RRM and Billy are being criminally investigated for... stealing Mikovits' sainted presentation (that in fact they seem to have gotten from a copy that dr. Deckoff-Jones put on her site: I'll come to that below). The Gerwynites claim RRM and Billy are being investigated only because they wish it, and therefore, in their pseudologic, they KNOW it.

Also, persons with Guru Gerwyn's mental make-up have a deep desire to offend others, without any cause also, e.g. here: While Ms. Kitei correctly says that dr. Peterson is not just anybody, not "a bit player", indeed for quite a few more reasons than Ms. Kitei gives, but let that be, for that was how he became the "P" in "WPI": By being one of the few medical doctors who took ME/CFS serious, for well over two decades, Guru Gerwyn cannot step aside of the temptation to offend dr. Peterson:

"he was a bit player "

says the Guru. Here is Geroupies' Guru Gerwyn's final bit, diagnosis and conclusion:

The above feels like a deliberate attempt at misrepresentation zero facts and 100% speculation and damaging speculation at that

So.... people who are not called Gerwyn should not think, should be forbidden to think, should not even ask questions, and will be punished for damaging Our Cause, for the Guru has been feeling things, like "deliberate attempts". Indeed, the logically minded are trying to get their brows from the ceiling: How can one do "misrepresentation" of "zero facts"? But then again, Gerwynites don't reason: They just simply KNOW, mystically, from Bright Light emanating from Wales, like many who are delusional, and like all who are stupid, who can be unfailingly detected by their inability to argue something rationally, in clear language, with references to background knowledge, and without logical fallacies.

Meanwhile, Ms Kitei must count with hordes of Geroupies, V99s, Jaces and Angelas, who will anonymously tell her that she is a betrayer of Our Community, and all sorts of other Evil Things.

In fact, that other Bright Light, Patricia Carter, although for a long time a great and enthusiastic fan of Ms Kitei, already let her know so, in a comment to her post:

Wildaisy said...

There are some questions I do not have to ask because I know enough about at least one of the people involved. Mindy has no answers to these questions. Neither do I. But I know that Dr. Judy Mikovits has integrity and has only ever tried to help people, in this instance, people who suffer from M.E.

I trust her and I know that she did nothing for personal gain. I cannot say the same for the other people involved.
Modify message

Having learned some about Ms Carters psyche over the last 1 1/2 years, I think I am not mistaken in diagnosing "Modify message" as a direct order: "Mindy dear, word to the wise: take care or you'll be in trouble..."

Incidentally, the lovely Wildaisy's first sentence is just the sort of feeling many Catholics must have had, at the beginning of the many revalations about pedophiliac priests. Meanwhile, Ms Carter just KNOWS that "Dr. Judy Mikovits has integrity and has only ever tried to help people".

And Ms Carter's "I trust her and I know that she did nothing for personal gain" is again that typical zealot's prose: Credo quia absurdum that Dr. Judy is superhuman, for only superhumans do "nothing for personal gain", since all other people must eat, and get the money for that.

Anyway... Ms. Kitei has invited the ire of Leaders Of Our Community like Prophetess Patricia and Guru Gerwyn, so I fear she'll get a lot of angry mails, even though nearly all Ms. Kitei did was asking fair and sensible questions.

To turn to the current plight of dr. Deckoff-Jones.

I must fear she is also in for a torrent of emails from Guru Gerwyn's Geroupies, The reason is that these have been using the Comments facility of her blog to spout endless reams of nonsense, one variant being that "RMM" and "Billy" - two persons with real scientific qualifications who have tried to help persons with ME to understand how real scientists look on XMRV, so much deserving to be blackened and accused, in the eyes of Guru Gerwyn's Geroupies - "must" have stolen material from Dr. Judy or the WPI, namely gels and slides, and namely to enable the ArchFiend ERV to show that Dr. Judy's gels and slides may not be all that Dr. Judy said they are: See ERV's 29th XMRV-related post from September 30, 2011:

XMRV and chronic fatigue syndrome:
For your enjoyment-- A magic trick.

So the readers of dr. Deckoff-Jones have had to wallow through or jump over a virtually unending series of posts of this doctrinal form (reminding me much of Vyshinski, the prosecuter at Stalin's show trials, but then I do know a lot about totalitarian mind sets):

Anonymous said...

There is still no source for obtaining the gel as it was nothing to do with the PowerPoint. What reliable persons hands, who would not tamper with it, is it claimed to have passed through? RRM claims an anon on a blog. A reliable anon who has no source! The police are investigating if several people all tied to famous anti-retrovirus virologists obtained the gel and posted it when the materials were allegedly stolen.

All of this is either malicious lying or insane delusional nonsense - but try telling that to a Gerwynite Geroupie!

Here is why dr. Deckoff-Jones risks trouble with the lot of them. She wrote today on her blog, after four of the above bits of prose in one solid sequence, and lots more elsewhere in her comments:

Jamie Deckoff-Jones MD said...

That's it, about the gel and the slide. I haven't been reading those particular comments for some time. Everybody has seen them, and been annoyed by them, ad nauseum. I will remove them from here on out. What do you think this accomplishes? It just makes it clear that you're nuts, so your comments are dismissed. Why waste the energy moving your fingers? Don't you have anything better to do than irritate people? I have much better things to do than moderate these ridiculous, repetitive comments. But the gnats are in the room and I guess I will have to swat at them.


She is quite right, of course - but try telling that to a Gerwynite Geroupie!

Then again, she probably also is aware, unlike the Guru, that the much maligned slides of the gels very probably came from her site, so that may be why she'll swat that discussion. I don't know, but it certainly will make her Comments section less awful.

Anyway... I am not, and indeed most folks with ME/CFS are not, Gerwynite Geroupies, and the forum on which the Guru can be admired in his full glory has all of 86 members at present, not all of whom may be there to lick his feet or other parts.

Also, I honestly wish they came to their senses, for with most it is not ill will, but the results of years of pain and discrimination, that made it easy for them to fall prey to bullshit presented as if it were science, by no less than - hold your breath, o heathens! - A Real B.A. In Microbiology (some 20 years old, presumably, since when the proud holder of it has done little or nothing but having brainfog and writing ill-spelled ukazes insisting on his great retrovirological gifts and insights no retrovirologist except that dear dr. Judy could either see or pretended to see).

Gerwyn: If you were a guy with guts, you'd be on ERV's blog, with your real name and address, to explain her and the world why you are an o so polite and kind genius, and why she must be an evilmouthed bad nut!

Indeed, you could have been there for over 2 years now, enlightening virologists with your wit, or being found out, if only you had had it in you to risk being found out, and if only you really believed the tales you have been spinning and were honest about your desire to help patients and find the truth about ME/CFS.

Also, I am not kidding:

Morally, I think you have the duty to do so, for there you will find a hearing; there many people - with qualifications to judge whether you are bullshitting or talking on the basis of real knowledge - will read you; and there you have the chance to save dr. Judy or be defeated as a valiant fighter who was blinded by prejudice, pain and disease, but who - at least - honestly tried and honorably failed, while having the real courage of his opinions.

I fear you lack the guts and the talents and the knowledge (***): You cannot admit having been honestly mistaken, and having been found out by others who are more intelligent or more qualified than you are. And you much love being looked up to, even if those who look up to you do it because they lack the knowledge to refute your pretensions to knowledge.

(*) Indeed, e.g. here, that seems to be the most downloaded file of my sites since many years:

On a fundamental problem in ethics and morals

together with this one (of which there are two or three versions on my site, a situation I should straighten out):

Why philosophy is important

(**) This is a real and serious problem for any patient, doctor or researcher trying to cope with ME/CFS: That there is no good causal explanation, and many competing descriptions or definitions, at least several of which are biased or useless, since they identify "ME/CFS" with "unexplained fatigue", without bothering to do real research into people with severe ME/CFS or insisting these must be psychosomatizers, malingerers, somatoformers, or otherwise fit not to be scientifically researched while very fit to be used to be milked for money by the very shrinks who claim the patients are mad and should not be biomedically investigated.

(***) Just as Gerwyn doesn't seem to have it in him, while he has great pretensions about his intellect, knowledge and degrees, and sufficient health and energy to write a lot of prose, to produce a site like mine.

Corrections, if any are necessary, have to be made later.
-- Dec 17, 2011: Corrected some typos and unclarities.

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 of 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)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

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:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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