a`\ 

Nederlog

 

August 22, 2010

 

ME + me :  Good ME-news: WPI-opening + the phony Dr. Crawley

 

    "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. It took an upheaval like the Cultural Revolution to bring out these characteristics in people (..)"
   (Jung Chang, "Wild Swans", p.454)`
    "You can see why I've got myself so much disliked, and why I'm in such a dangerous situation. Not that I'm not an expert pro-body too. I'm a pro-truthist, a pro-beautician, a pro-sinceritist, and a pro-everything that's pro-worthy. But I don't find much scope for exercisting my talents in that direction, whereas thousands of people are always queuing up for the anti-treatment."
    (Lucian, "Fishing for phonies")

As before, I continue being not well, for which reason there were no Nederlogs the last two days, and I continue with more good news and also some news about an ME-Fraud, that stands in interesting stark contrast to the very good news I start with.

Sections

1. The Grand Opening of the Whittemore Peterson Institute (WPI)
2. The fraudulence, falsities and phoniness of Dr. Esther Crawley, paediatrician

Incidentally, my first quotation of today, that I have used before repeatedly, because my experiences with ME in Amsterdam have led me to a very similar conclusion, is explained somewhat, by implication, in section 2, that also is covered by the quotation from Lucian.

1. The Grand Opening of the Whittemore Peterson Institute (WPI)

The good news continues the earlier good news, and generally shows that I am - well: a little slow, these days, also being far from Nevada. For that's where the Good ME-News hails from, as before, in my Nederlogs of August 17, Some good ME-news (?!), that detailed news from Reno from the previous day, and August 18, Some more good ME-news , that provided the links to an Interview with the Whittemores (mother and daughter) on August 16.

Clearly, I am running - well... crawling - a bit behind the times, but then the news is worth it, and here is more:

In fact, on August 17 the Whittemore Peterson Institute was opened with a VIP-party, and quite a few speakers, who've all been caught on video and all can be found in the next link, which collectively is a long view, that also may not be quite the thing for you if you have ME and are not a Nevadan (if that's the name), but which I found yesterday and then did all watch (more links with excerpts follow, in case you don't want to watch all):

Having viewed it all, I can assure you that I found it interesting sociologically (US folks look like real people in Nevada! (*)) and for some other reasons, especially such as help make clear that the existence of the WPI is somewhat of a fluke or minor miracle, mostly due to the Whittemores, and in particular to Mrs. Annette Whittemore.

In fact, here is her speech, lifted from that long Grand Opening video:

This is slightly over 10 minutes, and all of it is interesting, for indeed she managed, with the help of others, to erect a 77 million dollar biomedical research institute from basically nothing at all AND lay the institutional foundations for the Lombardi-Mikovits XMRV-breakthrough nearly a year ago.

The star speaker though at the Grand Opening was not Mrs. Annette Whittemore, but her daughter Andrea, who has been ill with ME/CFS for a very long time, and at long last seems to be revalidating remarkably well:

This is 2 minutes 40 seconds, is both restrained and emotional, and is an excellent speech.

In fact this is from August 16, while yesterday the WPI-opening for guests took place. I haven't seen any video or pictures from this (**) but this no doubt will arrive over the course of the next week or so.

In any case: All of this is very good news for anybody with ME/CFS, for at long last there is a cutting edge research institute, that took some 77 million dollars to get surrected; which has some of the very best researchers in ME, virology and related diseases present; which has the support of both the University of Nevada at Reno and the state of Nevada, indeed cross party, it would seem from the video (***), and with the shortly to appear Alter/Lo replication and extension of the Lombardo/Mikovits study, the situation for people with ME is better, in principle, and in hope for the future, than I was aware of the last 32 years.

And a great part of the credit for that is owed to the Whittemores, for they set themselves the end; had the money, the intelligence, the willpower and the perseverance, and made it happen, indeed against high odd and with much opposition, some very unfair and unscientific also, as the next section will show.

2. The fraudulence, falsities and phoniness of Dr. Esther Crawley, paediatrician

I have written before about the socalled Lightning ProcessTM, that I have restyled as Lying ProcessTM, since I am a psychologist and a philosopher, and I do think that's what it is. See e.g.

I think it is total nonsense, also quite dangerous to some, especially those with real illnesses, to which some may cynically reply that - "alas", they might say, sincerely or not - the socalled Wellness Market is full of frauds since the days of Antiquity. Indeed it is, and I wrote about it in 2008, in Dutch, in Over Lucian from which I like to quote the following passage, before quoting Dr. Esther Crawley, whose doctorate is in the science of paediatrics, that these days (unlike in Plato's days) is not precisely rocket science.

Here is Lucian on the doctores Crawley, Wessely and White of his day and age, when quizzed by the Goddess of Philosophy (see this link):

PHILOSOPHY: But what's your job? There's no harm in asking that.
LUCIAN: I'm an anti-cheatist, an anti-quackist, an anti-liarist, and an anti-inflated-egoist. I'm anti all the revolting types like that - and there are plenty of them, as you know.
PHILOSOPHY [smiling]: Well, well! You're quite an anti-body, aren't you?
LUCIAN: I certainly am. You can see why I've got myself aso much disliked, and why I'm in such a dangerous situation. Not that I'm not an expert pro-body too. I'm a pro-truthist, a pro-beautician, a pro-sinceritist, and a pro-everything that's pro-worthy. But I don't find much scope for exercisting my talents in that direction, whereas thousands of people are always queuing up for the anti-treatment. In fact I'm so out of practice as a probody, that I dare say I have lost the knack of it by now - but I'm a real expert at the other part of my profession.
PHILOSOPHY [seriously]: That's bad. They're opposite sides of a coin, as it were. So don't specialize in one at the expense of the other. They should merely be different aspects of the same fundamental attitude.
LUCIAN: Well, you know best, Philosophy. But I'm so constituted that I can't help hating bad types and liking good ones.
   (uit: Fishing for phonies, in de Turner-vertaling, p. 177-8)

I have been forced to specialize likewise, and now turn to Dr. Crawley, who seems to be very typical for the postmodern soft sciences, since when fifty percent of people are deemed admissible for a university education, where they then arrive devoid of all intellectual talents but with sharp elbows and a willingness to lie for a degree and a career, but then indeed these days modern "universities" are open to virtually anyone not totally braindead - see e.g. my "Mandarins with an IQ of 115" - and thus it indeed could come about that a Dr. Crawley could climb towards such minor fame as "Chronic Fatigue researcher" (she calls it thus, no doubt by design) as she has acquired, that then was followed by my stumbling over her.

Incidentally, not being British, like Dr. Crawley, I didn't do the stumbling all by myself, but was originally alerted to the Lying Process by Phoenix Rising, where Ms. Suzy Chapman a.k.a. ME agenda wrote about it, also pointing to a wealth of information (or rather: desinformation, as the case is here, but that is not Ms. Chapman's fault), as she often does. (See her site: ME agenda, where you find a wealth of ME-related material summarized by categories in the lefthand column.)

It's also to Ms. Chapman's site that I owe the following, which is part of a transcript of a lecture that Dr. Crawley - a heavily subsidized "researcher" (so called) into "chronic fatigue" (so called) - held the end of March this year, to a group of patients with ME in Dorset.

In fact, I could say a lot more about this text than I do today, as I also could say a lot more about Dr. Crawley's so called "scientific" prose, and her type of person, as this ancient psychologist and philosopher, crabbed with dysfunctional beliefs since 32 years, believes he can see, underneath all the posturing, blustering, and phoniness, but I do want to quote a few succulent bits of the Crawley prose, in view of the facts about the opening of the WPI in my first section and the phony stories about both XMRV and the WPI by Dr. Crawley just a little over 4 months ago - and let it be noted here, in case there is any dubiety, that it is my considered opinion that Ms. Crawley, next to being a paediatrician and experimenter with children, is a genius, in the Swiftian field of saying the thing that is not.

What follows are parts from the transcript that Ms. Chapman prepared from a DVD that contains video from the event (and the underlined part in this paragraphis the link to all of it, and a lot more background, on ME agenda's site).

Here is a taste of postmodern British paediatrics (and see my Scientific Realism versus Postmodernism):

Approx 27 mins in from start of presentation:

[Slide]

XMRV. OK, so in the next, last, remaining bit of the talk I want to summarise what’s happened about the XMRV story for you. I think it’s really important that we’re all informed about it.

Many of you will have woken up and read this story, in fact I knew about it 24 hours before it was about to break – “Has science found the cause of chronic fatigue syndrome?” – we’re all very excited and hopeful this might give us something we can treat. Great.

[Slide]

Don’t you think this is the most beautiful picture? That’s the XMRV virus. I don’t know how they get those colours on them – very beautiful.

Now this is the Centre that reported it. Do any of you notice anything about that picture? XXXX you’re not allowed to say.

Sorry?

Member of the audience: Sunshiny?

EC: Sunshiny, yeah. It’s in Reno, yeah, yeah. Anything else? It’s a bit far away.

Has anyone looked at the website? Isn’t that interesting? That doesn’t exist. That’s a fake picture – it’s what they would like to exist, when you donate money, when you go on the website. I thought everybody knew that! Yeah, sorry? This is Dorset.

OK. The Centre isn’t built. That’s their picture of what they would like to build and when you go on the website it has “Please donate.”

How sneaky and insinuating, how phony and false can an English doctor of paediatrics be? Well... about as much as a dr. Esther Crawley, I'd say, logically and empirically speaking, and on such evidence as I have, for it is hard to top that, at least without running directly into a lawyer.

You see: On March 27, Dr. Crawley, who in fact seems to have known quite differently, and who in fact certainly both should and easily could have known better, said in public, on video also, of the WPI-building, opened on August 16:

That doesn’t exist. That’s a fake picture (..)

Not only that: She managed to suggest, to insinuate, to just barely manage not fully say that you donate to something fraudulent - which possibly is an easy thought for a mind like Dr. Crawley's, it seems, as fraudulence apparently coming natural to her, although in that she is not alone, among pseudoscientists.

I skip some (without falsifying anything, me not being called "Crawley", "Wessely", "White", "Sharpe", "Chalder" or "Gerada", thanks be to whatever divinities there may be: See the transcript) and arrive at the following gem of paediatric science, as this is practised by Dr. Crawley, who asks her audience what is called in legalese "A Leading Question":

So what do you think’s going on?

Member of the audience: Publicity.

EC: Publicity…

….I have actually given a clue.

Member of the audience: Money?

EC: Sorry. Money…money…money…

Member of the audience: XXXX wants to tell us.

EC: OK, go on, XXXX…

EC’s young son (in front row): Did they all do it from one place?

[Slide]

EC: Ye…es! The first group – actually, the question is, was the first group chronic fatigue syndrome? And eventually, when they were asked, they told the research community that, this is in Lisbon, at the end of last year, that all the samples came from an outbreak of chronic fatigue syndrome in one village in Lake Tahoe.

And when you actually go and have a look at all the research data around that outbreak, everybody at that time thought it was a viral infection. And nobody could find the virus.

So most of us think that that was probably the issue – it was probably a viral outbreak that has certainly caused chronic fatigue syndrome but is not necessarily going to be relevant for us here in the UK.

Incidentally, Ms. Chapman had the kindness to edit out the name of Ms. Crawley's young son, and rightly so, even if Ms. Dr. Crawley is quite willing to apply the Lying ProcessTM to other children then her own, to find out whether these other children may perhaps be killed or harmed by it, as may well be the case, since there never has been any decent scientific study into the merits of this anyway insane sounding nonsense, not even in adults.

In other words - to get the morality somewhat clear - as it may have happened in the very early days of the discovery of electricity, when Benjamin Franklin just had discovered that lightning is electrical, what the paediatrically learned Miss Dr. Crawley is investigating is something along the lines of whether being struck  by lightning or being electrocuted might do harm to any children that are ill anyway with ME (or whether it may magically and miraculously cure them within three days, as its devotees have paid through the nose for to tell the world).

How sick and phony can one get, in England, these postmodern days, in paediatric circles? Why not immediately propose thumbscrews "to help improve their school attendance", as seems one of Dr. Crawley's purported objects? (I can guarantee, or am willing to bet my brilliant M.A. degree in psychology, that school attendance will dramatically improve!)

Well... here is the paediatric doctor on XMRV:

And there’s a big question here [Ed: indicates on slide] – this XMRV virus was initially described with prostate cancer and the prostate research community has shown this in prostate cancer in two studies in the USA. These are different labs in different studies but no association in Europe.

Meanwhile, this has been shown to be false, and anyway this is only the sort of pseudoscience a fairly to very dumb - if honest, to be fair to this doctored miss - paediatrician or a lying pseudoscientist would come up with, since it is on a par with the imperial British level of "black people and eskimoos have other diseases than us Brits".

So maybe this is a virus that’s important in America but not important in this country – it’s not clear.

What is clear is that Ms. Crawley is very probably aping professor Wessely's and professor McClure's stance, which is effectively that (1) In Good Old Brittain there is no XMRV and (2) even if there was, professor Wessely personally would take care it would not be researched while (3) if it were to be researched he, professor Wessely, psychiatrist, is the very man to do the work, and show retrovirologists that he knows better than they do, or at least manipulates the facts, the reports and collaborating retrovirologists like no one else. (The last link is to my ME: On the postmodern falsifications in Wessely & McClures BMJ-editorial of March 9, still quite correct, unlike the McClure/Wessely falsifications.)

I return to the noble, moral, honest character that calls herself doctor Crawley:

And I think this is of interest. Within a week of their paper being published they produced a test for the XMRV virus at $650 a test. [Ed: Slide reads, at point 4: Conflict of interest?].

And if I was developing a test, I would declare that as a conflict of interest on the paper – “I’m developing a test for this.” Then people can make up their mind about whether it has affected the results. We don’t know, it wasn’t declared they’d produced a test.

Rhetoricians, lawyers and logicians call this "innuendo", but no doubt Ms. Crawley's eventual lawyers will point out that Miss Doctor Crawley doesn't know the word; can't grasp the concept; and altogether always means well and always speaks, spoke and will speak the truth, in their impartial view.

[...]

And then at one point, rumour has it (and I couldn’t find any evidence for this) that they started to suggest that patients with chronic fatigue syndrome should have anti-retrovirals, ie HIV drugs.

Rhetoricians, lawyers and logicians call this "innuendo", and further as above.

They’ve taken that back, and this is all I could find:

[Slide]

[Reads from slide quoting Dr Judy Mikovits; the "she says" refers to Dr Mikovits]:

“While it’s not advisable to take highly toxic anti-retrovirals [without tests confirming effectiveness], she says some available therapies may help, including: immune modulators; anti-inflammatories, because inflammation activates XMRV, things that improve natural killer cell function; medications that help [level progesterone levels, because progesterone up-regulates XMRV in lab tests]; avoiding stress.”

In fact, Dr. Mikovits is a medical doctor and FAR more of a scientist and a researcher than Ms. Crawley ever could be (for else the miss would not be a paediatrician, although - fairminded as I am - there are no doubt good paediatricians in England, if not called Crawley, or so it would appear to this elderly logically highly educated psychologist).

It appears – and this really upset me, OK. All of their studies are in adults. OK, all in adults.

Dr. Crawley, who wants to do "empirical research" to find out whether ill children get miracuously cured by the process of lightningTM a person (a process that never has been tested scientifically, not even on adults, but then children are far more pliable by brainwashing, I'd say, as elderly cynic with a scientific education in psychology), at this point - her eventual lawyers will claim, with a show of moral indignation - did not at all know what "innuendo" means, never-ever lies or lied, and did not seek to suggest that the WPI wanted to prescribe "highly toxic anti-retrovirals" to children.

O no! Dr. Crawley is an honourable woman! Here is the proof:

 And then they say:

[Reads from slide]

“Early infection in children can lead to more severe disease later on.”

Early detection?

Oh, that’ll be that test that they produced for $605 [sic] a pop.

See? Did I already suggest to you that Ms. Dr. Crawley does not know what "suggestion", "innuendo" or "bearing false witness" means? O, I did.

[Reads from slide]

“and intervention important to keep viral loads from getting high.”

I find that really frightening. If I had a child with chronic fatigue syndrome and I read that on the web, the first thing I’d do, I’d go and buy the test, and the second thing I’d be doing would be phoning an infectious disease doctor which is what’s happened and ask about anti-retrovirals for my child, having read that.

Miss Dr. Crawley, at this point, still had no idea of the meanings of "suggestion", "innuendo" and "bearing false witness", I must suppose her eventual lawyers will try to lure a jury into believing.

So I do feel as researchers, we do take some responsibility for saying “This is a first paper! Let’s wait and see what happens.”

Messrs. Wessely and Van der Meer, no doubt Ms. Dr. Crawley's firm friends and colleagues, did NOT "take some responsibility" when the Lombardi-paper appeared: They did not say "This is a first paper! Let’s wait and see what happens."

O no! Instead, while neither had or has any competence in retrovirology or any real competence in real science (both of them being pseudoscientific trick-cylists) each of them started by saying immediately this was not so, and next both bought themselves a tame retrovirologist, and both produced very flawed "research", indeed such as the very honourable Ms.Dr. Crawley names in her speech, that - so they claimed falsely, impertinently and unscientifically - "refuted" the Lombardi-paper. (See my ME: On the postmodern falsifications in Wessely & McClures BMJ-editorial: Good philosophy of science, on my part.)

Here is the honest, moral, never posturing or posing miss Crawley again:

You know, I think it’s really interesting, it look likes they did find something in a group of patients and we haven’t found it here. That’s really interesting and is deserving of more research.

This sounds very much like an out and out moron telling an excellent mathematician he did well, adding that the mathematician did something trivial, and that he shouldn't feel too conceited.

But let’s just say, it’s interesting at the moment, rather than all of this speculation, which I think can be very harmful for patients.

Instead of which Ms.Dr. Crawley travels around the country doing little else than insinuating, misrepresenting, falsely suggesting, playing the game of innuendo, and meanwhile dishing out the sheerest trash, both scientifically and morally, as if it were "real science".

Well... I haven't vomited yet and will for the moment prophylactically stop commenting and quoting Dr. Crawley's phony, immoral, pseudo-scientific tales, and quote one item from today's Phoenix Rising, as - again - a piece of good news. It is by one John Leslie who, for what I read of him, knows his science and at least some of the scientists he mentions:

According to my Washington contact, the Lo/Alter paper will be released tomorrow and published on Tuesday. The paper will confirm that XMRV and its variants (human MLV-related viruses) are associated with CFS and are also present in the blood of healthy controls. The WPI "will be completely" vindicated (including the variants disclosed by WPI in support of the Science paper) and the negative studies are likely the result of the non-use of the Lombardi primer sets or or other equally sensitive tests. The study apparently blows away the "contamination" argument, finds the retroviruses in over 85% of the CFS patients, and almost 7% of the controls. Maybe someone can get an advance copy on Monday or early Tuesday.


P.S. As I said several times: If you want to know more about the facts of the matter, or whatever else Dr. Crawley said in Dorset, or indeed more about ME, ME agenda's site will help. The material from and about Dr. Crawley, including the transcript quoted in part above, is under the last link on her site.

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.

-- August 26, 2010: Removed some info about Ms. Crawley, in the kindness of my heart.

 

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.


(*) Of course I am joking, for the most part. Those who want to understand what I mean - "for the most part" - should have a look at

which has many clever, amusing and wellmade satires of the standard American TV-News, and who seem to view that standard American TV-News rather like I do, since four decades.

As to Nevada: Having seen all of the Grand Opening video, which involves seeing and hearing many of its leading politicians, I know rather a lot more about Nevada than I did the previous 60 years. By and large, the summary must be - I must fairly interpose: also and especially because it harbours both the Whittemore Peterson Institute and the Davidson Institute, for both of which also see And yet some more good ME-news - that Nevada is a much more interesting and worthwile state than I knew or was inclined to think. Live and learn!

(**) For this there are three different kinds of reasons. The first is that this needs some time to get on the net and to be found and seen by me, if I can. The second is that a considerable amount of material about ME/CFS escapes me because it is on Facebook-pages, which is where I don't enter: I don't like the concept, I don't like the "privacy"-policies, and like Nancy Reagan then I "Just Say No!"; and the third is that Mrs. Patricia Carter and CFS Since 1998 still exclude me totally from viewing their site, where there is said to be some material. Well... who supports these liars and cheats opposes both me and ME, as far as I can see, and I want to see their mecfs outfit either totally terminated or else given to intellectually and morally far more competent people, which should be easy to find, if only these liars were willing to do what is good for others, rather than furthering their own personal careers and standing, e.g. by shutting out a person like me, whom they cannot defeat in argument. What creeps!

(***) From which video it is interesting to note that it also appears to be the case that, at least in the enlightened state of Nevada, there no BS, no indifference and also no "Isn't it psychosomatic?"-nonsense at all about ME/CFS, which to this day is so prevalent among English politicians and medical doctors.

(****)

It seems to me both quite dangerous and unethical to try to find out ("research") whether this [LP] crap indeed is crap by submitting children to this totally untested intellectually and scientifically detestable nonsense.

And thus it is, and who thinks otherwise badly needs his or her head examined - unless you are a Holocaust denier as well, and both you and society are better of sectioned immediately, indeed.

Maarten Maartensz

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