Here is a little update on things related to ME:
As the title says, there now is the
annual report 2011 w/Sam Shad PR & RR PR (pdf 7 MB)
You can find it
under the link, from the WPI, but should be warned that it is a 7 MB
download and a 44 page read.
There also is a
new XMRV-related bit on ERV's:
and chronic fatigue syndrome: Why?
that I will say a
little more about below.
But first the
WPI's annual report, with its number one argument (for straight male
eyes) quoted pictorially for your delectation or envy:
As it happens, I have read more than half of it and looked at all of
of illustrations, as illustrated on the left, from p. 17, also mirrored
on the right for better
grokking by (esp.) my male readers (while my female readers, who
are out for convincing personalized grokkable arguments, are probably
more convinced by the male bearded model w/stethoscope that looks one
straight in the eye in a highly trained honest and forthright
fashion on p. 14).
are professional pictures of many of the staff of the WPI, such as of
the present Principal Investigator dr. Lombardi, and also of Harvey,
Annette (several) and Andrea Whittemore (several), but none of dr. Judy
Mikovits, whose name also doesn't occur anywhere in the text.
All in all
- 44 pages - I suppose it is a fairly classy example of PR - as in "Public Relations"
- and in fact I would not expect anything else from an institute like
the WPI is: It's part of the game, and not just for them - one must
have (it seems) PR, and lots of it, if one is in the business
of health and medicine, if only because the competition for subsidies
and public support do it also.
the annual report deals professionally with the demise of XMRV:
The possibility of a retrovirus being associated
with ME/CFS brought many outstanding researchers to this field. Many
have continued to work in this area despite inherent difficulties that
have been encountered along the way. Those difficulties have taught us
all to be more circumspect when making discoveries, but have not
dampened WPI’s will to understand the roll pathogens play in this and
other similar neuro-immune diseases. Giving up the pursuit of knowledge
is not an option when so much is at stake for so many.
take it serious as information, because it clearly is PR: "Personalized" faces, an American flag, quotes
of Heroes like Anne Frank...
There's "Give live love live"; there's outstanding advocate
Christopher Cairns; there's Max Pfost with his very own Personalized
Picture; there's a fine-chested young black beauty on a racially
integrated photo; there's (I quote) "a plethora of meaningful
ingredients"; there's ANIDA...
In short, it's PR.
There's also something like facts, or so I suppose.
For example, there is a statement about the WPI's finances,
from which I've learned that during the years 2010 and 2011 the WPI was
operating at between 2 and 3 million dollars a year, in income and in
expenditures. "Donations" were 650,342 and 599,503 for resp. 2010 and
2011; "total revenues" were resp. 2,9 and 2,7 million, and "net actual
activity" were resp. 1,129,850 and 465,743, while "Total surplus" was
resp. 1,363,483 and 678,280.
So the WPI seems to be going down, at least in "revenues",
"activity" and "surplus", which is also what one would expect, as 2011 was mostly marked by failures to
find XMRV, few publications by the WPI, and considerable acrimony
after dr. Mikovits was fired.
Also, the WPI isn't large, especially not when compared to Harvey Whittemore's claims on the Seenos and
the Seenos claims on Harvey, e.g. for his use of planes for the WPI
to the tune of 1,7 million, if I recall well.
As I said,
this Annual Report - like most annual reports, in fact - uneasily
combines the legal duty of yearly publishing a correct state of
corporate finances with the corporate end of making the company look as
good as is possible. As such, it is a work of PR-art and one can hardly
expect differently. It will not make the WPI popular with informed
patients, I guess, but that probably also is not the main target or
point, which is support and money for the WPI from anyone.
I have no
problems with that and I also am willing to suppose that the folks at
the WPI are doing their best to do something useful.
But I will
not reproduce the PR-prose from the WPI's annual report because, even
if I were to agree to all of it, which I don't, I just don't like PR.
there's something at least a little ... strange as regards WPI's PR:
Mr. Sam Shad, who helped many in the world through something apparently journalistic
called "Nevada News" to knowledge about the WPI,
posing - I must assume - as if he was a real and objective journalist,
in fact is a specialist in ... PR, (*) and also is a recent board member of the WPI.
I think it
were the sharp eyes and mind of Ms Suzy Chapman that found it. Here is
Ms Khaly Castle on the topic:
But what I find interesting enough to
talk about is the appearance of Sam Shad’s name on the Board of
Directors list, on page 29.
As you may recall, Sam Shad is the
host of the “news” show, “Nevada Newsmakers”. In actuality, Sam
Shad Productions is a “full service advertising agency and program
producer”. The word “News” in the title of the show may be
somewhat misleading. Be that as it may, Mr. Shad has done several
televised interviews with Annette Whittemore on his show, and it seems
that in the interest of full disclosure and transparency, his
relationship to the institute should have been made clear.
It concerns me that these programs have been regarded by us, the ME and
CFS population, as news, when in fact they were nothing of the
sort. Part of the responsibility for assuming that these were
legitimate interviews could possibly fall back on us. After all,
buyer beware. But there certainly should have been some
moral responsibility on the part of the WPI and its Board to clarify
that these shows were orchestrated PR maneuvers.
see Ms Castle's blog, who
also feels a bit had, it seems, over
this "interview" with Mrs Whittemore by Mr Shad, with the text
under the link on Ms Castle's blog.
At this point I
take leave of the WPI's annual report's beauties and turn to Ms Abbie
ERV on XMRV
Apart from the WPI
strutting its wares, there's is a recent blog by Abbie Smith on ERV. It
is number 35 in a series she wrote on the subject, and she asks a
sensible question, in the title of the blog itself:
and chronic fatigue syndrome: Why?
I considered the
same - sort of - question in December of 2011 e.g. here:
me+ME: More on St. Judy
me+ME: Sorting through some evidence
about dr. Mikovits
I arrived then at
a similar conclusion, with less knowledge of the relevant science than
Ms Smith has, but with more experience of human duplicity (or so I hope
for her sake) and very probably also with more knowledge of philosophy of science.
Abbie Smith starts
the above linked blog thus, and the starred link is to a note of mine
below, that - of course - is not in the original:
When a disaster happens in science,
like the XMRV fiasco,
the most important lesson everyone can take away from the
incident is 'Why?'
If you understand the 'Why?' behind
what happened, you can avoid the problem in the future. (**)
So specifically in the case of
the XMRV fiasco, the question was, "Why
did samples in this study appear positive, while no one else could
replicate the findings?"
The answer was
But then she says:
I am not satisfied at all with the
answers put forth to 'Why?'
Ms Smith is puzzled
by a few things that are not completely clear to me because she seems
to have forgotten to insert some links in the fifth from the last
paragraph in her text, but then her last two paragraphs are suggestive
I wish they
would just come out and say "We faked it all, and heres how."
It seems most
unlikely "they" will, and if it was faked - and I think it can be
rationally argued that the probability it was fake is larger than the
probability it was a mistake - it probably was not faked by most
authors but by one or two. It's even possible it was faked for moral
reasons: Because those who did it believed they had really found
something that retrovirologists would confirm to exist if only they
would start to look seriously for it, and this was important for
patients with ME/CFS.
It's a conclusion or
suggestion - "You have all been had!"
(except ERV and a few other smart and knowledgeable people) - that I
don't like, for moral and scientific reasons, but I agree with Ms Smith
that's the probability, and if it is true, it will be hard to prove
directly, rather than "on balance of probability", as the phrase is,
knowing there's much to be known about the subject that one doesn't know.
link is to the Wikipedia article on the subject, from which I quote
this heartening informative honest bit of PR:
The Public Relations Society of America
(PRSA), founded by Richard Rotman, defined public relations in 1982 as,
"Public relations helps an organization and its publics adapt mutually
to each other." According to the PRSA, the essential functions of
public relations include research, planning, communication, dialogue
and evaluation. In 2011/2012 the Society developed a crowd sourced
definition which PRSA considers more accurate and descriptive:
Public relations is a strategic
communication process that builds mutually beneficial relationships
between organizations and their publics.
It was announced on March 1, 2012 after
a vote by public relations professionals.
That is, in scientific non-PR-terms: PR
is strategic waffling, lying, misleading, beautifying, and deluding
that seeks to help (the likes of) wolves feed on (the likes of) sheep
more comfortably, and also to help cure sheep from the dreaded
wolfophobia. It is a process of systematic falsifying that may not be
named as such, and a way of image building of the rich and powerful
that must not be called deception.
Of course, its defense is the usual one:
"We would be mad not to do what everybody else does: Since when did
unprettified truth sell?!
Mundus vult decipi, ergo decipiatur."
I see and understand the point, but don't
(**) Actually, that often is not so.
First, human beings are often wilfully morally perverse in various
ways, easily explained for the most part from knowing ordinary men,
as regards their illusions, delusions and weaknesses, throughout human
" If mankind had wished
for what is right, they might have had it long ago. The theory is plain
enough; but they are prone to mischief, 'to every good work reprobate.'
And they often also are stupid, ignorant, or negligent - and then
any human majority is easily deceived, about almost anything,
nearly always. (And thence PR.) Then again, there are some intelligent, learned,
kind, and smart people too, if in a minority, so not all is
So... a knowledge of the reasons why
human mistakes are made often is no guarantee such mistakes can be
prevented, and indeed as long people may expect money, status or power
from deceiving others, some people - probably many more than would
admit it - will deceive others. (In
fact, that is why women wear make-up and men drive expensive cars: To
seem at least a little better than they really are: It's very common
and very human.)
P.S. Corrections, if any are necessary, have to be made later.
As to ME/CFS (that I prefer to
descriptions of the
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 understa, but nds ME is
an organic disease
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:
space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.
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