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Nederlog

 

May 20, 2010

 

ME + me: More resources & more me



I still am not well at all, which is why there was yesterday no Nederlog and no site update, so today I just repeat what I had the day before yesterday, with a new link added to lots of files by professor Hooper and associates; a brief comment on that and some related matters; and a P.S. on the state
of ME-Resources, that progressed in spite of my pain, exhaustion and misery.


Click globe for opening
announcement:

The 5th Invest in ME

International ME/CFS Conference 2010

The above globe links to the opening announcement of the conference and here is a link to the

A New Era in ME/CFS Research

CONFERENCE PROGRAMME

from which you can learn that professors and doctors Peterson, Klimas, Jason, Chia, Cheney, Kerr and Mikovits will all be there, chaired by professor Hooper. The above link gives a good overview and pictures of all the persons mentioned. I wish I could be there but lack both the money and the health.

I promised a new link and here it is:

This contains a long list of links to files written by professor Hooper and his associates, such as Margaret Williams that runs from 1998 (at the bottom) to 2010 (at the top). I think I have read most of the more scientific and longer ones at some point the last half year or so, and I generally have skipped or at best skimmed what involved quarrels (which I anyway find very hard to judge, having never met any of those involved face to face; knowing effectively little of them; and not being familiar with British law and British circumstances).

The article with the Further Articles is on the MEAction UK site, about which I have read varying opinions, as I have about other ME-sites, since there is a considerable amount of various disagreements between the various groups and organisations concerned with ME, the spokesmen and associates of which try (or say they try) to do something for patients with ME, while sometimes there are also considerable quarrels between these groups or members of them.

My recent experiences on the Phoenix Forums, where it seems more and more as if a kind of human Gresham's law for people is at work: the bad and the stupid getting rid of the good and intelligent that is also usually very easy, since the former group is rather a lot larger, in almost any human group. (*) Indeed, I have seen this happen many times, and it is the common process in most things political and most things having to do with religion and economics too, so it is not amazing it should happen among patients with ME.

Happily - speaking for myself - and unlike the fast majority of patients with ME, I have a large site that is well-read for reasons having nothing to do with ME, though a lot with me and philosophy, especially, and happily for the past 32 years with ME I have been able to take care of myself mostly without any help whatsoever and have not been afflicted with such severe ME as to have to stay in bed all day and not able to get shoppings, for if that had happened I would have died, given my unique situation in Amsterdam.

Hence, still speaking for myself, it seems better I keep my human integrity and dignity, and do for myself what I am good at, much rather than let myself be abused on public forums by anonymous griefers, lamers, trolls and human, intellectual and moral impostures of various kinds.

Also, and specifically about the Phoenix Forums, I do not want to be more than minimally involved in a group with such bad leadership and such definite biases and personal animosities that I do not understand, having also little knowledge of the US interests and patients groups around ME, and even less knowledge of what it is like to live there, with ME especially (since I have lived briefly and almost 40 years ago in England - or rather: in an England that has disappeared mostly).


P.S. I did today add notes to ME - Resources, and I also checked the links, which should now
work unless they are set in small letters, in which case they don't. (This seems to be due to socalled
'secure pdf.files', which I personally find rather immoral in real science, just as I think it is immoral to
have to pay 35 euros to obtain an electronic copy of some blathering of Wessely, as I have seen in case of some medical journals.)

At present, the last edit of ME - Resources is of today, and the version is settled on 0.99. When version 1.0 arrives, there will be a zip-file, which may be tomorrow.

A final note on my comments in ME - Resources: They are personal, they are sarcastic, they are
sharp, and they are also informed by massive relevant learnedness.  They also maybe somewhat
rewritten in the near future, since I am well aware how horribly I felt when writing these notes,
but it seems I have to make something clear that seems unclear to most, and especially to
those, with or without ME, who have no special talents and no special courage, and who therefore
love universal levelling of all to the level of the average or least human. I am not one of them,
nor was my family, that I am very proud of, but indeed it probably is not so much choice as
genetically being disposed or determined that way.

Those who object to my - sometimes intensely - personal tone, sarcasm, satire or what not as 'inappropriate', 'incorrect' or what not should realize that my personal estimate of those who say so is that they personally lack the self-respect, the talent and the knowledge to write like me, and I simply have no truck with them, whether they have ME or not, and that anyway I am not one dishonest
and hypocritical enough to flatter average mankind on its intellectual or moral excellencies: Instead,
I am firmly convinced that my own suffering and that of many millions with ME would have been far less if only the intellect and morality of the human average they and I met with and depended on  for our relative well-being had been better.


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


Supplements on ME


   
  ME: On having severe ME
  ME: !! Seriour Health GET + CBT Warning !!
   
  ME: ME and Human Rights
   
  ME: Back to the Middle Ages with professor Simon Wessely
  ME: Back to the Middle Ages with professor Simon Wessely - P.S.
 

Studies in MEdical Sadism

   
  0: Studies in MEdical Sadism (overview + Kumar & Clark's Clinical Medicine)
 
  1: "Die Mörder sind unter uns" (the baseness of some medics and politicians)
  2: "101 Good Reasons" (clarification CBT+GET & 101 reasons by G. Crowhurst)
  3: "The evidence & the techniques" (current techniques of MEdical sadism)
  4: Intermezzo - Lucian (a very disrespectful most intelligent satirist)
  5: The amazing & great Kim & Dr. Yes (alas still not well-reformatted yet)
  6: Herr Professor & Frau Doctor Wessely (The Real Truth metavisually)
  7: Professor Simon Wessely's many mental issues (just so: a real sicko)
  7a: P.S.: Professor Simon Wessely's many mental issues (the logic of it)
  8 : Professor Wessely's crap completely clarified (visually) (DrSpeedy+profSW)
  9: Studies in MEdical Sadism - 9 : Dr. Yes maltreated
   
  Dutch
   
  ME-disch sadisme op wereldschaal: Zeer verbitterend nieuws
  ME: Waarom dokter Mengele medicijnen studeerde - 1
  ME: Waarom dokter Mengele medicijnen studeerde - 2
  ME: Uitstekende studie over ME en CGT en GET
   
  Visual
   
  ME: !! Seriour Health GET + CBT Warning !!
  ME: Unsere Doktoren - Ohne Wörter - 2

P.P.S. As you will probably have seen, the ME - Resources needs more notes to the files than are there, and I also plan to include considerably more resources. If my readers have patience and I get a little health, it may RSN too...

O, and if by chance a link or two don't work (I don't know): Again be patient (or mail me) and it will be sorted out, for ME - Resources is a Work In Progress.

And it keeps being trouble some to make tables behave as they should in Firefox using my Frontpage for editing...to be improved later, hopefully, like so much in life.

(*) See Machiavelli, De la Boétie and Swift - but alas you'll be able to read them real understanding only if you are in that minority, alas, rather like it is with mathematics.

Maarten Maartensz

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