I am still not well at all and also still sad, but here are a a few more
links that help clarify the recent XMRV news that also should show
why ME is a very serious disease, also if you have a mild case of it, by
the way, because then post-extersional malaise (aka PEM) may bring you
down to severe ME, as is illustrated in the last of the following three
Hillary Johnson: Case of Chronic Denial
The above links to The New York Times of October 2010, not long after the
article in Science on XMRV. It still is a very good expository article
(in two parts, mind you, on the NYT-site as linked) by someone who
knows a tremendous amount about the disease, about having the disease
(Johnson herself has ME), and about the politicking around it, especially
at the corrupt American CDC. The article is undramatic, factual, fair and
completely justified, and gives a lot of key information in brief clear
Incidentally, Hillary Johnson also has Dutch translations of some of her
most recent articles on her own site, about which I quote here a bit from
"a massive fan" of hers, published yesterday on Phoenix Rising,
by a woman who calls herself Muffin. (I changed the paragraphing and
edited two typos.)
Osler's Web probably saved my marriage. My husband read the book when I
was first terribly sick and could not read. HE read the book and was
astounded, blown away and had a far better idea of what was so terribly
wrong with his young, sick wife. That book made my husband understand
what was going on with CFIDS and what the CDC did to us all.
Because of that book my husband understood why I was sleeping non-stop.
It was not depression or any other psychiatric illness, but CFIDS. Mind you I
am lucky and have a good husband. But, Osler's Web did for me what I
could not do for myself: explain all that was going on with me. The book
also explained all the horrible things about CFIDS. After reading Osler's
Web my husband went on to buy and read several books on viruses so that
he had some idea of what was going on.
One day I will be healthy enough to thank Hillary Johnson personally for
all that she has done for us. I don't know if the newly sick understand
just what Osler's Web did for us. It is a fantastic history book on CFIDS
and the CDC's horrible role. She got to the heart of the Incline Village
situation, Dr. Peterson/Dr. Cheney's roles, and so on.
We all owe Hillary Johnson a HUGE thank you. Why am I going on about how
wonderful Ms. Johnson is and what a brilliant, "stand the test of time"
book she has written? Probably because we don't say it enough.
Use her website as a means to educate others:
The book is stunning and should be bought, borrowed, stolen - however you
can get your hands on it.
Quite so. (*)
Next, another excellent video about ME and what it means for patients,
that I did not find but yesterday, though it has been on the internet for
quite a while
YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video
This is very well done, though it is a bit slow for me,
while some may consider it a bit dramatized. As to the
imputation of dramatization: I have had and mostly have virtually all
of the symptooms listed in the video, and suffered all the social and
financial consequences sketched in it. In fact, this video understates
rather than overstates its case, especially the case of those with
serious to severe ME, for which see video 3 below.
And as to "a bit slow for me", and indeed not discovering
this video earlier: I am a very fast reader, and generally I much
prefer reading over listening, since I can read much faster than
anyone can speak and since normally more attention was given to
written text than to spoken text (hence on average it is better than
spoken text). Also, having a very good visual memory without a delete
button, I tend not to like the watching TV and pictures, because I
prefer my own fantasies over those of others, and don't want others
images take brainspace I'd rather reserve for my own.
As my third item, here is an excellent video by a patient with
severe ME, that should make very clear what this disease may mean for
patients, and indeed also why the prescription of especially Graduated
Exercise Therapy for those with ME may be an attack on their lives:
The very brave woman in this video got severe ME by mistakenly trying
to push herself beyond the symptoms:
YouTube - Laurel's October 2009 CFS/CFSAC Testimony
As you will see, she can't even speak above a whisper since more
than 10 years, for which reason someone else reads her text.
P.S. And that's were it stood on June 25, 2010, in the
afternoon. There may be an addition or further Nederlog today, but
there are no guarantees, and see the present P.P.S.
Here is one update: The NYT anounced some time ago it wanted its
internet-readers to pay per view. Apparently, they started this today
in the form of a block on this article (a few hours ago I accessed it)
with a form you must fill in, thus:
Not an NYTimes.com member yet?
Enjoy Free Access
Just answer a few simple questions, select an ID
and password, and you'll be all set.
It's free and it only takes a minute!
Listen NYT! It WAS free
and NOW I must fear that my
answers and my IP will be sold by you to spammers. Sorry: Won't do:
See my Musings on computing and a new internet.
I want a free non-commercial internet, and I don't like
to be lied to blatantly ("Enjoy Free Access"
after you have filled in personal details is Orwell-Newspeak.
If you do want really intelligent readers, you must treat them
as if they are at least a bit intelligent, and if you dish out
astroturf, as you do, you should make it a bit less dumb, or else dumb
down the whole NYT.)
Also, Hillary Johnson links to the NYT from her site, without
giving the text....
See my last link for my own position in this. (And I think I have
to forget NYT, for I am just not playing this sucker game.)
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, and it seems a
heath-wave is coming, which is the type of weather I can't handle
well. I don't know yet, but if there is no Nederlog, now you know