Here is a little update on things related to ME: As the title says, there now is the
WPI 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:
XMRV 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 it.
It's full 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).
There also 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.
Here's how 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.
I can't 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.
Besides, 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.
For more 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 Smith:
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:
XMRV 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 contamination, contamination, contamination.
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 enough:
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, and while knowing there's much to be known about the subject that one doesn't know.
(*) The 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 approve.
(**) 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 history:
" 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.' "
-- William Hazlitt
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 necessarily lost.
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 call ME):
|| Anthony Komaroff
||Ten discoveries about the biology of CFS (pdf)
|| Malcolm Hooper
||THE MENTAL HEALTH MOVEMENT:
PERSECUTION OF PATIENTS?
|| Hillary Johnson
|| Consensus of M.D.s
||Canadian Consensus Government Report on ME (pdf)
|| Eleanor Stein
||Clinical Guidelines for Psychiatrists (pdf)
|| William Clifford
||The Ethics of Belief
|| Paul Lutus
Is Psychology a Science?
|| Malcolm Hooper
||Magical Medicine (pdf)
|| Maarten Maartensz
||ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
|| Maarten Maartensz
Short descriptions of the above:
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 understa, but nds ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
7. A 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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