Nederlog

 

 October 13, 2010

 

ME + me:  On science, ME, research-funding and postmodernism


   "
There is one thing a professor can be absolutely certain of: almost every student entering the university believes, or says he believes that truth is relative."

   -- Alan Bloom:
"The Closing of the American Mind - How Higher Education Has Failed Democracy and Impoverished the Souls of Today's Students."


Indeed I continue being not well, for which reason I still have not yet written more on the DSM-5TM  I also wanted to write a bit more about psychiatry and about Cargo Cult Science and pseudoscience, but these things also have to be queued awaiting somewhat better times.

So that is as was, as is the following:

I intend to write more about Warren Sturgis McCulloch whose fine, courageous, honest, very knowledgeable assessment of psychiatry in "The Past of a Delusion" (pdf, 2.8 MB) I wrote about the last time, which is a MUST READ for everyone with ME (with any rational scientific interest), but not today - but there is a lot of interesting material by and around McCulloch on the internet, and he was an interesting human being.

Today I have a link to a video and some background and a quote from someone writing on the Phoenix Rising forums and I write about it because I wrote yesterday about the NIH, one of the spokespersons of which, dr. Paul Plotz M.D., was interviewed with a patient with ME/CFS, author Deborah Waroff, in a video of a program called White House Chronicle.

Also, I have a tip on how you can learn to write your own professor Wessely, or doctor Esther Crawley Evidence Based Scientific Paper

It's interesting and there is some 25 minutes of interview and exchanges between the host Llewellyn King and his assistant Linda Gasparello and the two guests. Here are first to links to texts related to the video; if you want to see the video first read what's below the links, for it starts a little confusing.

  • CFS: To Suffering, Add Anger, by Llewellyn King.

    This is a fine article, by someone who had done his research and can write. Here is just one quote of from it:

"Breaking down the e-mails, I find these commonalities:

· Anger at the CDC and, to a lesser extent, the National Institutes of Health and government in general.

· Tremendous suffering and horrendous problems with affording treatment; frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS.

· Anger at the media and others for not taking CFS seriously enough.

· The knowledge, with a cure rate of between 4 and 8 percent, that they are awaiting the inevitable in huge discomfort. They are on medical death row.

· Sufferers describing themselves as “living corpses.” Alone with their suffering, many commit suicide.

I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart.'

Here is a related article by Linda Gasparello, that supports the above with some facts and quotes

From: Laurel

Thank you so much for your recent and excellent coverage of ME/CFS.

I’ve suffered from ME/CFS for 14 years. I first became ill quite suddenly at age 24, following a viral infection with mononucleosis.

I’m now 38, and have been bedridden for a decade. I cannot walk, talk, stand, care for or even fully bathe myself.

I’ve spent my entire life savings on various experimental treatments to no avail. I never have a single moment of genuine reprieve.

I should also note that I am XMRV positive, both by DNA PCR and culture.

My fiance also has ME/CFS and XMRV. He’s been sick 26 years, also following an infection with mononucleosis at a young age.

You can hear more of our story by viewing my video testimony to the CFSAC committee from last October.

My health has only declined since that time, and I fear I may someday soon die of this illness, in part because nothing is being done.

I urge you to do all that you can to continue to raise more awareness; and urge action so that no one else suffers as I’ve suffered, and that viable treatments are soon found.

Whether MLV’s prove to be causative or not, we need help. Lives are being lost by the millions here, and no one seems to care.

Thank you so much for being one of the few to step up and takes notice. Thank you for being one of the few who care.

Now the video, which has some starting problems, but otherwise is fine. As others also reported, when you start the video, you first get 37 seconds of a high sound and a sort of diagram of the colour-spectrum on a black background; then Llewellyn King, who a bit surprising - shades of the late Alistair Cooke, to whom I have listened a lot - looks and talks like bowtied English gentleman, who starts a story about horses, cows and a fire in Kentucky, and after that, at around 3 min 21 sec the item about ME/CFS starts, mostly called "Chronic Fatigue Syndrome.

Like most of these sorts of things, it looks a bit staged and artificial, and lots less can be said than people would like to say, while also all parties try to be fair to all - which in the case of ME/CFS, as my ME - Resources explains, is a bit difficult, since some of the main players really are neither fair, nor scientific, nor honest (and see McCulloch's "The Past of a Delusion"  for a specialist's critique of most psychiatry) - but it is well done by all, as such things go.

I got the reference from the Phoenix Rising forums and here is the quote from someone with the alias of pictureofhealth who comments on a point dr. Plotz made or seems to have made in the video:

It was very revealing, as Dr Plotz points out, that allocation of NIH money for research is led by the number of scientists interested in an illness or pathogen, or the degree of scientific interest generated by particular avenue of research which encourages researcher groups to apply for grants - not the number of desparate patients in need, or the degree of devastation caused by an illness, or the numbers of dead and disabled, or the economic or social, implications of not treating it and ... etc .

In other words, if an illness catches the interest of a scientist group because it is 'fascinating' or 'cool' to study, or 'scientifically sexy', or perhaps because there is a chance for academic prestige or a Nobel - then it stands a chance of getting studied and funded, because more scientists will send in applications for grants.

In other words, no one is serving the interests of patients or the public here.

Well I guess it was obvious really - but it just shows how back to front the system is. Made me furious actually and muttering expletives under my breath which are totally unprintable...

I can - sort of - understand the reaction, and what dr. Plotz said may indeed be understood in this way, but this is not how things really are in science and science funding in Europe and the US, about which I know some, and which merits some clarification.

First of all, pictureofhealth takes (or has) a very naive point of view, and writes as if individual scientists lack moral motives or feelings, and are out only for something that "is 'fascinating' or 'cool' to study, or 'scientifically sexy'".

This is not so, at least not for many scientists, and especially real scientists, who tend to have much better intelligence than others who make much more money or power in business or politics, but who love science and knowledge, and therefore are in research: this holds for the best, and those aspiring to be.

But what is true and a fact of life is that medicine and indeed science is done for money, by money, and only with the help of monetary funding for many kinds of important research, for large laboratories + staff can only be funded by governmental institutions or big industry.

In fact, there are at least four active levels, so to speak, on which things happen that eventually contribute to how and how much money is spent on science and research, and on which kinds of science and research - and here it should be noted that, as Deborah Waroff points out in the video, in the US ME/CFS gets funded at the very lowest end of the scale, with just 5 million dollars. That is at most 1 to 10 dollars per year per patient, many of whom have been ill for decades.

Now here are the levels I have in mind:

  • 1. There is indeed the level of individual research scientists and their decisions to research a subject and seek funding, which is necessary for most of the research that is relevant to ME/CFS. These decisions may depends on all manner of considerations, many having to with the state of affairs in the next three levels/

  • 2. There is next the level of the institution a research scientist (or group) works in, such as a university or pharmaceutical company. Much of what the individual scientists may do, depends on the sort of climate of opinion, technical facilities, and ongoing other things (other research and researchers in the place, university politics).

  • 3. Then there is the level of governmental institutions of various kinds that fund research and may coordinate reseearch or universities, and also of many kinds of organizations, such as NGOs, pressure-groups, professional groups, interest-groups, corporations (healthinsurance companies are very important here), all of which is mostly in the field of politics, while often it is pretended it is not. And in fact on this level most key decisions for funding and policies are made.

  • 4. Finally there is the level of the media of various kinds, including radio, TV and internet, where most of the players of the previous level try to speak, or sometimes are forced to speak, where the climates of opinion and the topics of public discussion are being made, shaped or influenced.

Much could be said about this, but I only meant to create some terminological and conceptual clarity, so as to show what really is involved, and to make two general points, for the proper understanding of both of which you need to read my short and clearly laid out Scientific Realism versus Postmodernism:

  • What has happened over the last two to three decades is that post-modernism has mostly taken over, and has politicized-moralized almost things, into democratic issues of correctness, that also should be publicly discussed and decided in the media or by governments or by NGOs or or by corporations, with the money to manipulate the media, mostly on a public relations level for the deceived public, and in networks of (semi-)political professional players in committees behind the scenes.

  • Hence effectively, the politicians, bureaucrats, NGOs and corporation have, largely through playing, paying and manipulating the media, taken over the power in science and research from the scientists and researchers, and for the most part force these to do what they want researched and not researched, although always proper care is taken for a good dose of pr and spin to deceive the public into thinking all has been done for the best of reasons in the general interest, while this is normally not the case, as in fact private, political or corporate interests pay the piper to play the tunes that are most profitable for them, while appearing digestible to the average - "The Democratic Majority" - of The People.

This has been argued in various ways for various reasons in the past 15 years or so by e.g.

And it has been argued by me in Dutch since 1977, for which reason I was repeatedly removed, while being ill, from the University of Amsterdam, namely for asking 39 Questions about the  qualities of education and government in the Netherlands.

Anyway... this seems to me what has been happening, and still is happening (*), what has poisoned much of modern Western civilization; effectively destroyed much of education and most of the universities; levelled almost all of society to what could be savoured on TV; whether with Oprah Winfrey or Glenn Beck; and given Wessely, White, Sharpe, Bleijenberg and others of their lot of scheming pseudo-scientific politico-bureaucratic institutional intriguers with the academic rank of professor of psychiatry or psychotherapist to play the media and the governments for private, professional and corporate interests of their choice, and to further totally fraudulent pseudoscience - see see McCulloch's "The Past of a Delusion"  and my McCulloch vs. Wessely - MUST READ for persons with ME - as if it it were "Evidence Based Science", which in fact is normally tendentious nonsense with a statistical sauce and an awful jargon to make the bullshit invisible for laymen.

Finally... onto a related but other question, namely how does doctor Esther Crawley - who wants to impose brainwashing and forced exercise on ill children to research the question whether this may harm them (see e.g. Get your whee-whees cuddled...) - write her scientific publications, that I do have tried to read, psychologist and philsopher and all?! 

I believe she does it by arbitrary substitutions of her own jargon for standard postmodern jargon in the following infinite supply of masterworks:

Instructions for use, also for instantaneous enlightenment and enduring bliss:

1. Click the link
2. Savour and Enjoy (save if useful for your coursework in clinical psychology!)
3. Reload the page.
4. Savour and Enjoy (save if useful for your coursework in modern philosophy!)
5. Return to step 3.

This will give you infinite supplies of Crawleyesque, Wesselite, Whiteish, Sharpeish prose!

Have fun (and read the bottom of the produced pages for a few words of wisdom). (**)

O, and to repeat - like Cato - my repeated call following the physicist John Archibald Wheeler's, seeing this is VERY much needed in the psychiatric, psychotherapeutic and psychological pseudo-sciences (and elsewhere too):

Drive The Pseudos Out Of The Workshop Of Science!


P.S.  In case you don't believe me - "hi, you with your postmodernism: so eighties! chill out!" - it is because you are younger than me (intelligence apart) and have been breathing it since your birth and have seen it everywhere practised by almost everyone: human life as a media-directed soap opera for everyone, with fifteen minutes of fame for the lucky conformist ones in A Media Event.

And for reasons of health corrections of typos and mistakes must happen another day:

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.


(*) As illustrated in the US by the - to civilized Europeans - insane-seeming health-insurance prices, offers and possibilities, that contribute to the health of the CEOs and investors in health-insurers enormously, at the cost of the interests of the patients.

The same exampe shows how "medical policies" are made these postmodern days: By millions of democratic voters being misled by Glenn Beck, Fox News, the Tea Party and Sarah Palin to oppose their very own interests in payable health-insurance for all, by decrying these directed by their brainwashers as "socialism" and as morally depraved.

(**) Or also, and I quote:

"More detailed technical information may be found in Monash University Department of Computer Science Technical Report 96/264: “On the Simulation of Postmodernism and Mental Debility Using Recursive Transition Networks”. An on-line copy is available from Monash University."

Maarten Maartensz

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