1. Whittemore Peterson Institute opened
2. Interview with the Whittemores (mother and daughter)
I keep being not well (and that was the end of the less good news
). Yesterday's Nederlog was titled
Some good ME-news (?!) and concerned this
Findings by Reno scientists confirmed by U.S. government
(<- link to the original) but in fact there is some more
good ME-news that I simply
forgot yesterday, being PEM'd and not well, as I said.
In a moment I'll turn to that other good news, but let me start with
explaing that the "(?!)" in yesterday's title was ironical rather
than doubtful, and that I meant to be stressing that there very often is
no good news about ME/CFS, and not that the news I shared yesterday was
not good or not credible, nor that it was not news. (*)
It is and it was, and so is the following:
1. Whittemore Peterson Institute opened
In fact, I am ill with ME
since January 1, 1979; did not know what disease I have until 1988 or
1989, when I heard about a disease that sounded just like mine called "M"
"E" on the BBC World Service's radio program "Health
Matters", and since then learned some about the disease with help of
patients' organizations and the internet, but none of what I
learned was really good news, and quite a lot was quite bad (although
this will be the case with any disease, also those with much better
research done and with far fewer pseudoscientists involved).
And indeed, being a psychologist myself, and having received either
Ger Bleijenberg's M.A. or his Ph.D.
thesis (forgot which) from a professorial friend with the question "Might
this be something for you?" ca. 1989, I had concluded the man was
mad; the "research" he reported was utter rot; he was an immoral idiot,
and - therefore - personally I would do best by looking the other way
rather than in the direction of ME/CFS, namely for fear of getting
drowned in my own vomit else. (Remember that there was no internet then.)
Anyway - this is the pseudoscientific bullshit that kept me since 1989
from trying to seriously research ME, and this also did not fundamentally
change for me or indeed for most other patients with ME,
until I heard of
XMRV first in the beginning of October 2009
(**),because of the
original Lombardi-study, since when things have moved quite a lot in and
around ME, and comparatively fast also (e.g. as things in science go),
also including the rise, abuse and trolling of patients forums, that
initially were hopeful to have, but since have been taken over as
politics have been taken over: by the verbally best liars and the morally
worst human types, protected by the uneducated unintelligent average, who
believe their scams and postures. (***)
But I was talking of good news.
Here it is,
the WPI presented it, dated August 16, 2010:
Today, the Whittemore Peterson Institute (WPI)
celebrated the completion of its new facility at the Center for
Molecular Medicine. The WPI is the first institute in the world to
integrate research, education and treatment of neuro-immune diseases.
Located at the University of Nevada, Reno, the $77 million facility is
the result of an innovative partnership funded by a combination of
University research grants, private contributions to the WPI, and
public funding from the state of Nevada. The new WPI facilities, set to
open in fall 2010, include executive and administrative offices,
research and clinical labs and a medical clinic.
“The completion of this building is the realization of
a dream and a beacon of hope for patients affected with neuro-immune
diseases,” said Annette Whittemore, president and founder of the
Whittemore Peterson Institute. ”Our strategic partnership with the
University, combined with this dynamic setting gives us confidence that
the research done here will translate into innovative medical care for
patients around the globe. We are proud that our work will soon lead to
new avenues of research and treatment for these diseases.”
Monday’s program included a reception for donors,
government officials, and personal friends of the institute and
University, followed by brief presentations on the topics of higher
education, University and WPI research, and the significance of this
new medical research building.
2. Interview with the Whittemores (mother
As it happens, the sound on my computer is problematic since late last
year, and I had too little money and/or health to have it repaired or
replaced by a new computer, so far. Around a month ago it suddenly
transpired that sound was back in the headphones, whence it then again
disappeared, since when it has disappeared and reappeared there several
This makes the viewing of videos (that depend on sound to be
understood) somewhat problematic, and did not allow me to
see and listen to more than a small part of what I would have done
Anyway... there is since several days a fine interview with mother
and daughter Whittemore, that was broadcast in Nevada on August 16,
and that you should see if you are interested at all in ME:
I give it in two parts because thus it is on Youtube, that will
probably be easiest available to most.
It is a fine interview with Sam Shad, for Nevada Newsmakers,
that also apparently was not made in a TV-studio but at the WPI (which I
like better, because I don't like the usual bombast that tends to come
with news-programs, especially (but not only) American ones).
I like the interview for various reasons, including that Sam Shad,
unlike many American news-anchors, seems a real person, which is
something of - how shall I put it - a relief, after having seen
too much of US TV with news-anchors apparently imported from some creepy
alternative reality where the human shape and form looks and sounds
decidedly robotic, inane, inanimate and laboratory made. Not thus Mr.
Shad, which was a pleasant surprise, wholly apart from the news he
brought and the interviews he made, to which I turn now.
I'd seen Annette Whittemore - the mother, and I am of the
generation and mental and moral outlook that does not find it obvious
or indeed polite to call everyone by his or her first name, as if
this is a matter of course, or as if one has known them personally for
years - being interviewed before, indeed also in an interview with Sam
Shad, but this was the first time I saw Andrea Goad-Whittemore
As it happens, I like and admire mother and
daughter Whittemore, and indeed Annette Whittemore achieved a
great many things for people with ME and other diseases, and did so in a
relatively short time as well, while she sounds very sensible, smart and
competent indeed - which incidentally is also not otherwise than I
thought, but even so is very pleasant to see and hear.
Andrea Goad-Whittemore I did not see interviewed before, and
indeed she has been very unwell for a very long time, but she seems to
have improved considerably recently, while she also looked and sounded
like a truly attractive woman - indeed, to put it in
terms of a somewhat cynical though apt US of A-ish locution: she looks
like someone fit to play herself in The Movie Of It - where I add the
"sounded" to "looked" because it so happens that personally I like smart
women, and this Mrs. Whittemore evidently is very smart as well, and a
good talker too: When she gets (more) healthy, she could be a most
effective patients' advocate - as she is already, but it would be nice to
see and hear her debate a number of obnoxious academic fools, for clearly
she can do that quite well, given sufficient health and energy, while in
any case it would be nice to see someone mostly or fully cured from very
severe ME. (And from her looks in the interview, that seems at least
And since I yesterday thanked dr. Alter, it is
both fair and ethically and intellectually appropriate to do it again:
Personally, I am very thankful to Dr. Mikovits and
co-workers, and to Mr. and Mrs. Whittemore, for finding a real
opening into a very serious disease that has been maltreated for
decades now, as have been millions of patients having it, and for
doing this (and having the intelligence to do it as they did) with
real science, and indeed for founding
and financing a scientific institute for the purpose.
I very much appreciate this, because I have ME since 32 years;
because I know how rare truly intelligent and truly brave human
beings are - and also because these persons also seem real caring people,
who try to talk rationally and act reasonably, completely unlike the
pseudo-scientists they defeated with real science.
Thank you very much, to you, and to you co-workers too.
P.S. And please note that I have only
concluded that, on such knowledge as I presently have and comprehend, at
least, XMRV at this point in time is a good hypothesis about the possible
cause of illness of a subgroup of persons diagnosed with ME, but that
personally I do not know of a proof that it is the cause.
On the other hand, also given that dr. Alter's study confirms and
extends the findings of the original Lombardi et.al. paper, there are
good reasons - as Hillary
Johnson has been insisting for a while now - to start clinical
trials with medicines for which there are scientific reasons that they
may help with ME, at least if (1) these trials are done with
sane and consenting adults, and (2) these trials are monitored by
a doctor these adults trust.
These good reasons are of two kinds:
1. There is good evidence XMRV is a factor in the development
of ME/CFS, at least in a sub-group, while there are many patients with ME
who are quite or very ill, and for whom there is presently no effective
treatment based on real scientific knowledge whatsoever.
Hence, if such persons are willing to take some risk to see whether they
are helped by such medicines as may stop the activities of XMRV, or may
alleviate these, and such medicines are known to exist, they should be
given a chance, if they qualify and there are the necessary means (such
as: paying the medicines, having help at hand, having fast access to a
good doctor if necessary a.s.o.)
2. Real science proceeds by rational argument and thinking, and
by empirical experiment, whereas one can only find out whether possible
medicines indeed do heal by experimenting with them.
Also, given the seriousness of the disease and the serious illness of
many patients, waiting till all the necessary tests have been done on
mice or perhaps on apes, if that is possibe to start with, which I
doubt, will very probably slow up both the research into ME and the help
of patients with ME.
Finally a warning, in case it is needed: In case some people were
thinking of buying their own medicines on the internet and experimenting
with these: It's your life, but I strongly disrecommend it unless you
yourself are a medical doctor - and even then it would be far wiser to
have a doctor you trust monitor you.
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.