I continue being not well at all which will help me make this keep very short and which also prevented me doing more on
ME - Resources.
My subject is again the dangers of the internet, that I also wrote about
yesterday, and notably about the cfsKnowledgeCentrum site.
That site is also the subject of today's brief note, that is brief
because I am otherwise occupied, as I will explain on this place tomorrow
or the day after that.
I have yesterday recorded my doubts about the
that, although professionally designed and directed at persons with ME,
has at least four shortcomings for me
it evidently is directed at persons who know
rather a lot less of science than I do, and who are apparently not rated
high intellectually by the makers of the site (Ladies Home Journal stuff)
it looks too much like American grandstanding to
this elderly, very civilised, and quite aristocratic European
the people behind the site are - so far as I can
see - totally anonymous, except that there is a large amount of videos by
Nancy KLimas, and stuff by persons who are grandstandingly hailed as the
best and the brightest, but that I have never heard of
there is a lot on offer, but a lot that has to be
paid, and even what is said to be free is not accessible unless you sign
in as a member
Now sofar I have my doubts about such a site, but
it may (still) be decent and well-intending, even if geared to profitmaking, as
e.g. sites that sell foodsupplements and do things for people with ME.
However, the reasons for my warning in the title
the set-up looks FAR to much like a clone of
Facebook for people with ME, with
medical offers at prices for minor treatments
that take 2 months of my total disposable income, and without any
and as I indicated yesterday one also has to pay
for the pleasure (?) of watching videos of doctor Klimas of some 3
minutes for $ 7,95, to see at most 3 times
These are already considerably less pleasant and
much more doubtful, for the financial position of many persons with ME in
the US is very bad, and while I see that medical people must live too, I
do not see that they should or ought become rich, or ought to try or want
What really moved me to put the warning in the title are
not only is the set-up very similar to Facebook:
In order to become a member of this outfit, and see what the free offers
look and sound like, and become what the anonymous makers of the site are
pleased to call "members of the community", and by becoming a member one
automatically accepts what the anonymous makers of the site and its
anonymous legal eagle(s) are please to describe as
All rights reserved.
Powered by: People Like You.
and I have, possibly apart from Microsoft contracts, never
read a more atrocious legal contract presented as a
which is extra-ordinarily bad in that it makes one, as a
matter of apparent course also, namely by simply agreeing to become "a member of the
community" to sign away a great number of the rights in law I possess
in Holland, and also presumably as I would possess if I were a
US-citizen, if I hadn't signed them away, that is.
As I said yesterday, the makers, designers and
owners of the site are clearly not People Like Me, whatever they claim,
and in fact, what with the prices, the ad-stories, the forced ads, the
completely insane curtailing of my rights to copy or download,
enforced ads in material from the site and quite a lot more, seems
designed so as to
make a lot of money from the suffering of sick people.
Personally, I don't care who they are, even if
they are Nancy Klimas, who I also do not know, or some other doctor
(unknown to me) with status among patients with ME: If you are moral and
rational, then - at the very least - (1) you do not trick people
in signing away their legal rights (incidentally, as the Lightning
Process also requires), especially not if they are ill and desperate for
help and (2) you do not ask the sort
of prices the site asks, especially not of people with ME, who are for
the most part very poor and quite ill.
Anyway... I am bound to be believed by few, I
fear, since most people are naive, and the site is professionally
designed, and promises a lot, and people with ME are often desperate for
help and fall easily prone to
wishful thinking, and also I am doing what
since a few days is absolutely forbidden to ordinary members of the
Phoenix Forums while - it seems - being mandatory for or at least much
loved by its administrators and moderators:
Speaking evil, or even speaking impolitely, or even showing a veneer of
irritation of any administrator, moderator or unimportant member of the
forum, and especially the anonymous ones who like to secretly blackening
persons they don't like, they are envious or jealous of, or who doesn't
quite share their fancy and fine prejudices:
At long last the happy days have arrived that
they can anonymously hand them over to anonymous administrators etc. who
will give them stiff doses of CBT about etiquette and of GET about their
impertinence in speaking less polite and wellspoken than the noble Tim
Haggard would - I think was his name (the married queer Crhistian
reverend who insulted Dawkins and was outed by a male prostitute, and who
mouths his speeches in an extremely sickening way, both to see and to
hear) who who is probably the most sanctimonious liar I ever saw, but
then - I surmise - only because the moderators and members of the Phoenix
Forums are all anonymous, and I have never seen them either.
Aahh well... more later on these moral
all-too-human facts of life, that may teach the very few really smart why
there have been so many atrocities and what 'homo homini lupus' means
(that one is not allowed to say on the PR Forums these days, at least not
if there is a whiff of a chance of a probability that it might be
conceivably be directed at an admininstrator, moderator, or sickeningly
sanctimonious half braindead anonymous member, who may indeed have
ME, perhaps, but who may in fact be anyone at all, although this again
may not be discussed on the PR-Forums.
But enough of this.
For now I have only
this to add about the
For me it stinks, especially but not solely because of the
(which I consider to be of very doubtful legality, if not outright
illegal, under Dutch law); no person ought ever to sign away, directly or
by implication, such rights as he or she has in law; and in general the
Romans had it quite right with
And finally, having mailed a little about this, I can provide the American
(and other interested readers) a relevant link where the promises and
legalities I discussed are reflected upon in an American legalese
This I can't judge well except that what I read was not high praise of
Nancy Klimas, who seems connected to this
with this most peculiar socalled
that by my understanding is immoral and is or ought to be illegal.
P.S. Being uncommonly highminded (like most really
gifted people, except that I am more honest about it than most - and if
you doubt the highmindedness of the highly gifted, consider Muhammad Ali
of Gary Kasparov, who also are not shy about their excellencies, and
personally I fail to see why they shouldn't for the one could beat me to
pulp and the other beat me in a blind simulataneous play any time they
wanted, and the same for almost anyone), I am highminded enough to remark
that very few people dare to write pieces like the above, were I also can
assure the reader I would have been far sharper if the outfit were Dutch.
And to keep things straight: In ANY case this site is
probably not my cup of tea, because it is not directed at people like me,
and if it were I could pay none of it if I wanted, but what really gets
me incensed is the stinking
You don't do that to people, or if you do it is because you intend to
fleece them without possibility of redress. (Persons who believe I am
mistaken about US law may explain my mistakes to me, by e-mail, provided
they can do so logically and without threats and are not anonymous.)
As to ME/CFS (that I prefer to call ME):
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
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:
is wrong always, everywhere, and for anyone, to believe anything upon
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
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. "
ME -Documentation and
ME - Resources