More about ME, triggered by
The Sacred Bovine on
CFS Chronicles, and intelligible only if one knows at least a
little about the use of the manipulative trope of "unity" on the sites
of Marly Silverman, Cort Johnson, and Patricia Carter, three of "our
leaders" of "our community" of patients with ME/CFS, who are
in favour that patients with ME/CFS be "united", as in: all buy from
webshops, write in their lingos, only discuss things they want
discussed, in the terms they or their moderators deem "appropriate" (=
PC), in their personal interests as "leaders" of "our community", with
personal webshops, and their undeclared personal loyalties and agendas.
The Sacred Cow
3. The Sacred Bovine
Let me then return to a theme I treated before, in me+ME: On
On a new Kitei Editorial +
namely The Sacred Cow of Unity.
This also ties in with my proposals
On ME-activism in the context of
(*) and specifically with (quoting myself):
In any case there are vastly more patients not happy with the
organizations and charities purportedly working for them (which they
sometimes indeed also may do, even if the real aim of the
organization's staff is to see its staff paid), for which reason one
relevant question is: How can patients organize themselves to get
effective activism for ME-patients?
As indicated, my answer is along the lines:
Not by following existing organizations or leaders in the field of
ME-activism, but by setting up one's own website, possibly cooperating
with a few likeminded folks, and getting up good stuff about ME in
general, and indeed also one's personal situation, so that one's site
at least may serve one's own interests.
But to my subject:
Sacred Cow of Unity
I had met
The Sacred Cow of Unity
on ME-forums, but this tended to be incidental to other subjects, and
then often in the form of the sycophantic trope that "our community" -
incidentally, another trope i.e. figure of speech - "needs" "unity", as if that,
like death, "is the cure for all disease" (**), or, for those who
like that comparison, as if a "community" in "unity" is the panacea
for all that a "community" needs.
It is bullshit, for various reasons.
First, real communities, of real physical
people, with known names, abodes, backgrounds and educations, who meet
each other face to face, even if in large real communities most do not
meet most, are seldomly "united" in any clear sense on many things,
especially if they are made up of many kinds of persons of many kinds
Second, an internet "community", if it
is a community at all, and more specfically, "internet communities"
such as can be found - as it were - enshrined in html on ME-forums and
public Facebook sites, is very much a virtual community:
The members of such forums are for the most part
anonymous, not only by being only known by an alias (+ avatar), and
not only by being thus factually without effective personal
responsibility or accountability apart from being banned from such an
"internet community", but also by these members seldom disclosing much
about themselves (that anyway is hard to check, if anonymous) and by
"existing", as "community", effectively in terms of typed prose, often
none too clear, not relevantly informed, and not well written, besides
often not being to much of a rational point, on some website.
Third, the whole idea of "uniting" a
great number of people, merely on the basis of their anonymously
laying claim to having a rare disease, while meaning the best with all
who have the disease, and knowing they in fact come from all walks of
life, with all manner of backgrounds, orientations, educations,
preferences, values and outlooks, is fairly to very ludicrous as it is
effectively impracticable - beyond having them anonymously meet, by
laborious typing, on what are effectively lists of lists ("threads") of bits of
texts, written by anonymous persons who say, and for the most part
seem to believe, they have a fairly rare physical disease.
In fact, as the internet is, and as people are,
on average, in majority, unsorted, without selection, the most that is
possible, in the way of "uniting", is to "unite" their
texts on some forum, or some list of
comments on some site, and then indeed "unite" not in the sense of "sharing
outlooks, values and ends (on something they agree is important for
persons with their disease)", but simply and factually in the sense
"occuring as texts - strings of characters and interpunction - on some
site on the internet". Our "Community"?!.
Fourth, having had a communist parents, I
k n o w
the trope of "unity",
The Sacred Cow of Unity:
Communist parties and communist trade unions all over the world and
for decades had the same mantra: Unity! Unity! Unity! - behind
Great Leader Stalin, Genius among geniuses, and behind The Central
Committee of the Communist Party. Forwards Comrades! But beware:
Unity! Unity! Unity! Or else
you'll be in trouble!
For that is what it practically meant: What is
supposed and asserted to benefit the members of groups - "communities", if you like
- generally in practical effect is what benefits the leaders of
the groups, indeed often, as in
Stalin's Russia, though not
necessarily, at the cost of the members of the group.
And in fact, the whole trope of "unity" is
trick, a piece of rhetorics, and propaganda, generally for and by some
specific leaders, namely by tarring all who do not agree with these
leaders in some way, as thereby having shown themselves to be opponents of "our
community" (which generally means in practice: the leaders or would be
leaders of that group), who for that reason, namely for opposing the
"unity" of "our community", deserve to be... outcast.
Stalin used it for decades, and when used
cleverly, in the name of "our community", it is a very effective
instrument to oust, incriminate, tar, blacken and persecute any and all opponents:
"Who is not for Us, is against Us".
In brief: Anybody who is calling for "unity" of
"our community" of persons with ME, writing for the most part
anonymously on the internet, as indeed almost anybody who is calling
for "unity" of "our community" of persons at any time
(***), is either willfully deluding (ill) people and playing a
rhetorical trick or else has been deluded:
It is not practicable, it is not necessary, and it
is counterproductive as regards furthering the interests of persons
with ME, while it is only useful for persons who set themselves up as leaders,
and want to get rid of opponents.
3. The Sacred Bovine
In fact, the present piece was triggered by
a piece on Heidi
Bauer's Blog, that I found by way of
Dr Speedy's Blog
(and here I am justifying the opening of this present piece - and see:
Some good info about ME and
some good ME-sites) that indeed is titled
The Sacred Bovine.
I quote from it:
A friend of mine
from the UK has often labeled well-liked people or organizations as
sacred cows, those whom we are not allowed to criticize, even in an
appropriate way without personal attacks. If one does attempt to speak
out against a particular agenda or misappropriation of funding or
energies, they suffer the consequences of being seen as a toxic,
negative, non-team player bent on tearing people down who are working
very hard on their behalf.
Good intentions and good hearts are not enough to win this fight. And
unity is not about singing Kumbaya by mass video conferencing. Khaly
Castle states in her latest blog that she must "respectfully decline
to Unite". I've made a personal decision to no longer worry about
being made out a villain if I disagree with any organization or
independent effort. I know who I am and why I fight for me, my family
and patients. I respectfully decline to Unite as well.
After which we get the invitation
Please read Khaly's
full blog below if you have not done so. I stand behind every word
So let me do so, at least by quoting some parts and commenting
some. You'll find all of the text both on
Heidi Bauer's Blog and
Khali Castle's Blog -
and I will try to be brief, and so skip most of it.
I quote in the order it is written, by indenting, and the piece I
quote from is entitled "Rules of Engagement", dated Feb 9, 2011:
Rules Of Engagement
Unity of action without unity of purpose is a self-defeating
For the past several months, though, a sidenote to CFS politics has
crept into my morning thoughts. The term “unity” and what it really
means has been a subject I’ve dwelled on, mulled over, stirred into my
coffee in increasing doses. It’s a word that, when applied to
situational tactics, has to have considerable background and back-up.
As I explained above, I am very familiar with it from the communist
party, as typical
totalitarian manipulation, but it has also been
used very similarly in e.g. Catholic and Protestant Churches and sects
and in student and leftist politics: "Whoever is against Us, is
against Our Community" - meaning in practice always: 'Whoever is
against Leader X will get serious trouble with X's followers',
and that not
honestly, fairly and rationally, but as someone who already is a traitor of Our Community, Our
Cause, Our Leaders.
But then again, skeptical readers should remember at this point
that I am myself merely a psychologist and philosopher at the young age of
60, with only lots of
relevant knowledge, so that it may be surmised that
for some in "our community" I must be a deeply suspicuous - if
I am indeed sane and
moral at all.
Back to Khaly Castle's text:
What does that mean? Well, let’s take corporate strategy, for
Many of us had corporate lives before our lives got derailed.
Some of the best companies I’ve worked for have heavily applied unity,
and some of the worst companies I’ve worked for have heavily
Unity of action without unity of purpose makes the ship go around in
Speaking for myself, I worked for some ten years before I started
studying, so I suppose I have both corporate and academic experiences,
and indeed in the corporate part I have led various things, while I
also was a student-leader and
published writer at university.
I agree with Khaly, but skeptical readers should remember that
apart from my already listed failings, indeed I was fairly successful
at various practical things, in fact including farming
(****), also for the first years of my illness, namely until I got
moderately severe ME.
Let’s take the business model a few steps further. Step
1: Working with independents
In my working life, I was good at what I did, as many of you were.
The worth of independent consultants is invaluable. Without them,
life in the office becomes insular, and reality becomes convoluted as
perspective is lost.
I cannot personally testify to the same effect, but I agree with
the idea: To remain effective, an organization needs input and
information from objective, impartial, competent people - which indeed
generally will not be part of that organization, so as not to be
biased or prejudiced by it.
Step 2: Representative organizations
I also hired representatives: attorneys, insurance agents, government
liasons, risk management firms….and when they failed to represent my
needs adequately, I fired them.
In high-stakes situations, it doesn’t work to “deal with” second best,
and certainly not with “miserably inadequate”.
I have hired and fired, but not the manner of folks Khaly did, and
I agree with the final sentiment, with the qualifications that (i)
often the best are hard to get and (ii) it may not be really clear who
are the best and what is best.
And linking this back to the theme of ME organizations, charities
In my experience, those organizations for persons with ME I know
something of, and specifically in Holland, Great-Britain and the
United States, neither do nor say the things I want them to do and
say, although this varies to some extent with the charities etc. I am
Some chartered organizations that claim to act and exist for
furthering the interests of patiens with ME/CFS seem to exist mostly
or only to keep their own staff in pay; some seem to exist mostly to act "in
the name of persons with ME" with ideas and ends and supports for
persons or institutions that I think are quite simply false, harmful or bad;
while there even are some that do or say or propose some sensible things.
By and large, they seem not very well run, and not
very effective, but then it is true this need not be due to the
staff's failings, but to the special surrounding difficulties ME/CFS
since decades, that relate to Reeves and Wessely's combination of
major pseudoscientific bullshit that is by non-experts regarded as
science, and to the same men's having a lot of influence on their
governments as regards governmental policies towards ME/CFS.
Step 3: Pick your boss
In a career field, your reputation is everything. If a boss is
undermining your ability to perform, it’s time to get a new boss.
If “Boss” isn’t working for you, then you shouldn’t be working for
Indeed, if you can. But in general it is wise to try to work only
with and for persons of whom you have reason to believe that they are honest,
keep agreements, and are competent: Without these all cooperation must
Back to Khaly's text:
How does this apply to CFS advocacy? I’ve seen some pretty
strange stuff come down the pike under the guise of “unity” lately.
It makes me very uncomfortable. To date, I’ve not said much about
it, other than an occasional comment when things get too utterly
Yes, I agree. Speaking for myself, I am extremely uncomfortable
with Marly Silverman's prose - which is, in my no doubt treasonable,
unqualified, disrespectful eyes, of a badness that is hard to believe
and not often paralleled.
Here, given the mores in "our community" I must add again: Sorry,
that I am qualified academically as a psychologist and philosopher;
sorry, that I am highly gifted; sorry that I have been a leader in
various contexts and organizations; sorry that I can write and think;
sorry that I have read a great lot ... I know that in the eyes of the vast
majority who didn't do this being thus qualified is very bad in "our community", especially,
but then one afflicted like me - indeed anybody fairly intelligent and erudite,
mens sano -
has great problems with the prose of a miracle worker and former
assistant bankmanager as Marly Silverman.
In fact, the lady, her prose, and her person, the smiiiiiiiiiiiling likeness of which
gives me acute pains in the jaws, while nauseating my mind, are slotted for treatment in Nederlog - an
event some may look forward to, also as lessons in practical logic.
More of this later in Nederlog, and here and now back to Khaly's text:
Untruths come in all sorts of packages. Sometimes they are lies,
and sometimes they are omission of all of the pertinent facts. For
instance, recently we were presented with the opportunity to donate
blood to a new XMRV study. One of the designers of this study was
told by someone who absolutely knows, that the study was flawed. The
designer of the study failed to share that information, even though he
was in possession of it as he was defending the study as a good
thing. But he did share it with a confidant, and somewhere down the
line that private communication became public. That’s not a case of
ignorance. That’s a case of willful manipulation of the facts.
That's interesting, and I would like to see chapter and verse,
though indeed I have thought for some time, and indeed written almost
a year ago now -
On the postmodern falsifications in Wessely &
McClures BMJ-editorial - that this seems to happen. Note
incidentally that this is a simultaneous breaking of scientific,
medical and ordinary morality.
It’s come to me via three different sources that the current
“Unity” climate considers independent advocates to be “trouble”,
myself included. That’s really unfortunate, as it’s the independents
who can bring real useful information to the table. It’s the
independents who work quietly, one-on-one, with people in need. It’s
the independents who can tell you “this doesn’t work”, or “we need
more that”, as it’s the independents who are living it day in and day
out. Just like in step one of the business model, the independents
are a valuable source of information and action. And to date, it’s
ONLY the independents who have advocated consistently for the sickest
of the sick.
Yes, I agree to that - and if I were asked to define "independents"
in this context, I would say these are precisely those who do have their
own websites with some following; who do (or did) engage in advocacy;
and who can write and are somehow qualified, and think and speak for
themselves, first and foremost (rather than grandiloquently for "our
I want to talk about Marly Silverman’s latest blog,
Time To Make A Difference Together. This will no doubt trigger
some outrage on the part of some who are affiliated, but I have to,
with all due respect, disagree with quite a bit of this blog. And, in
keeping with her request that we balance each negative comment with a
In my life, I have read a lot of very bad, very pretentious, very bullshitting
prose, but that of Marly Silverman, together with her teeth, made an
indelible impression on me - as does the ridiculous, manipulative,
populist, stupid, impolite, unreasonable demand (like the Catholic
Church also likes to make) to "balance" one's criticism of bullshit by praise
for it. ("Well, Mr Stalin, there are those Gulags but in balance
there's Moscow's metro: tit for tat, don'tcha know, fairness and
balance in all things ")
In this blog, Marly chastised Mindy Kitei for a statement about Dr.
Nancy Klimas, and asks her to retract it.
That shows Marly Silverman either has a hidden agenda or a very
pretentious, very totalitarian, very tiny mind.
In Marly’s blog, she states:
Wouldn’t you think that 3 and half decades of getting
“crumbs” as Mindy stated would not have induced a much smarter
approach from our “independent patient advocates” also to create
Why point the finger at the independent advocates? Marly goes on
to criticize the bickering, but that’s tying two different points
together so that you have to defend one to defend the other. I’m
not going to do that. Wouldn’t you think that 3 plus decades of
getting crumbs would induce a much smarter approach from our
advocacy organizations? Why lay the blame at the feet of the
independents at large? Overall, the independents have accomplished
much that couldn’t be accomplished by organizations, and have
suffered much injustice at the hands of organized advocacy efforts.
And the bickering is not isolated to the independents, either. It’s
just more noticeable, since the independent bickering is confined to
cyberspace and is undisguised by political niceties. At least with
the independents you know exactly where you stand, as our criticisms
aren’t all dolled up in PC verbiage and hidden agendas.
Quite so. And to point to what seem to me good candidates for
Some good info about ME and
some good ME-sites. And there is myself, of course, an
arch-independent - as you'll see illustrated now:
It is also heartbreaking to see within our patient advocacy
community, that mutual respect, courtesy and civility is once
again lacking and the anonymity of the internet allows this kind
of behavior go unpunished and seldom refuted.
Here’s where I agree, but only partially. It is horrible to be
sick and trying your heart out, and get slammed on a personal level
for your efforts. Vehement disagreement is fine, and picking apart
the concept at hand is fine, and even necessary. When it
disintegrates into personal attack, it’s untenable. It really is
No, I disagree: I have been personally attacked, of course
preferably under the bullshitting, lying and sanctimonuous and
hypocritical guise of "respect"; disagreements with me are
disagreements with a person; and I know of many persons I do not
respect, for what seems to me very good moral or intellectual reasons.
(If you want to respect folks like Goebbels, Stalin, the pope, or
indeed Wessely, indulge yourself to your heart's content, as long as
you don't want to enforce that on me as a moral or intellectual duty.)
Besides, why deny oneself the weapons others use, indeed while
lying about that? Marly Silverman is simply trying to manipulate what
she calls "our community" to do the sort of things she want to be done
(support Marly Of The Awesome Dentures!), pretending fairness and
honesty, besides writing a truly execrable style.
But OK - "that is just my personal point of view", and I lack the
qualifications of Marly's Full Smile In A Pink Jumpsuit, besides lacking
the distinction of having been a bank manager, like she has: Truly a
background that fills me with the greatest confidence in Marly's
For every naysayer complaining of an organization, point to
something good these organizations have done.
That’s not working for me. In a Utopian world, that would be a
good thing, but in realworld CFS politics, that would be akin to
being beaten up on a daily basis right after lunch. “He tried to
kill me repeatedly, but I got a baloney sandwich first”.
Quite so - and the reader should note that Marly Of The Awesome
Dentures is ordering others what they should write: WTF does she think
she is? Dictating to others while she can neither write properly nor
And here is Khaly's last paragraph, also summing up:
This is why we can’t unite. We are not coming from the same place,
or headed in the same direction. Unger has said she is not going to
change the direction of the CDC CFS. Phoenix Rising promotes
disingenuous and under-investigated statements as “fact”, and fails to
divulge fact when it doesn’t suit purposes. The CAA has repeatedly
refused to get involved with promoting funding for the WPI. And I’m
sorry to say, P.A.N.D.O.R.A. wants me to unite, while they are playing
nice with all three. All of these statements can be verified by
anyone who follows the statements and actions of these organizations.
This is my opinion. I disagree. There is no personal attack here,
only a firm stance on my principals. I must respectfully decline to
Yes, I agree, except for the spelling of "principles", and
except that, unlike Khaly, I do not mind personally attacking
people if they write nonsense, bullshit, propound
totalitarian idiocies, and
write or act in
a matter and manner harmful to patients with ME - "in my opinion of
course", but then I am a lot more qualified to speak and
write, it seems to me, than one who composes such truly atrocious
prose that Marly Silverman writes.
(*) The Chinese - as per
Wikipedia - for "
Letting a hundred flowers blossom and a hundred
schools of thought contend ", which was
Mao's rallying cry for the Cultural Revolution. See
Hundred Flowers Campaign (Wikipedia)
(**) "Death is the cure for
all disease" - Sir Thomas Brown.
(***) Indeed, almost
anybody who is calling for "unity" of "our community" of persons at
any time, is either willfully deluding people and playing a
rhetorical trick or else has been deluded.
It is a
totalitarian idea and ideal in principle, and my reason to
write "almost" is that in a few very extreme and rare
situations - Battle of Britain, say - calling for "unity" is
Apart from that, diversity, pluralism,
liberality, freedom to do one's own things are generally by far the
best to get anything done, in the way of civilization, at least.
(****) In fact, that is
the diploma I am most pleased with, also because I would not have
thought I would find the reasons to get such a diploma or develop
the interests to want to get it: I am qualified - standards of 1977,
in Norway, to be sure - to run a livestock farm, that is I am a
qualified, diplomaed farmer.
Indeed one further reason to be pleased with
it is that, while I have indeed worked for quite a few commercial
firms in offices in various capacities, and outside offices too, I
found farming, although it is heavy labour indeed, far more
satisfying than "the commercial life". (It's down to earth; it
has to do with animals; it is work that makes evident sense; it is
varied work - running a Norwegian livestock farm, I mean - and it
does require intelligence; while one also can comprehend nearly all
one is involved with, and the reasons for how and why things are
done as they, are on a farm. Few if any of
these things held for the non-leading jobs I did for commercial
P.S. Corrections must wait till later.
More or less the same applies to Cort Johnson, Patricia Carter,
CFS_since_1998 and Marly Silverman: They seem to me to be all
incompetent and unqualified, both intellectually and morally, for the
jobs they pretend to be doing for persons with ME, and seem to be in
it, as "leaders", "creators", "owners" etc. for the boosts it gives
them in their lives.
Also, for the record: I never met them; don't know whether they use
aliases, except from one obvious one; and don't know whether they
have the same disease as I have. What I do know, from their prose that
I read, is that I can't take them serious as spokesmen or -women for
other patients than themselves, nor as leaders of any community of any
kind, nor as persons who can write about ME/CFS in ways I consider
scientifically informed and stylistically correct.
And they do not speak for me, not about ME nor
anything else, as indeed does no spokesperson or leader of any
organization concerned with ME does.
Spokesmen who speak for me must needs be rational and reasonable,
and those who cannot be rational nor reasonable, or do not want to be,
or are markedly less intelligent or learned than I am, are neither
spokesmen for me, nor fit to be so.
Finally, also on the note of disagreement I have with Khaly Castle:
Persons like Cort Johnson, Patricia Carter, CFS_since_1998 and Marly
Silverman do speak and pretend to speak for me, as a patient
and as long as they pretend to be "leaders" -
"owners", "founders" of "forums" or "organizations" - who pretend to tell others
how to act, write and think about ME/CFS, especially if I disagree
with them, are opponents of me, as "they say the thing
that is not", and generally are not at all of the strength of character
and mind to lead me.
Besides, I feel free to write about anyone as I please - and I also
get very sickened by the scores of folks I have meanwhile read on
ME-forums, who seem not to know anything about either literature or
science, and yet anonymously deny people far more intelligent and able
than they are the right to write a good satirical English or to take
part in a
mostly rational debate, not made practically impossible by nonsense,
misunderstanding or trolling.
It is so ... swinishly populistic, stupid, mean spirited, and
fundamenally dishonest, unfair and full of sick envious personal spitefulness as well, si vous excusez mon Français, for as I have
argued before: A good part of the degeneracies I have read on
ME-forums seem to this psychologist inspired by "ressentiment", as
Nietzsche called it, and allowed and indeed furthered by the owners of
forums if it helps destroy someone who is in their way.
This may be human-all-too-human, but it is neither pretty nor
pleasant, and makes forums for ME-patients dangerous and unpleasant
places to post on precisely for those who are rational, competent,
honest and willing and able to engage in advocacy: "I have seen
the best minds of several generations" with ME, to vary Alan
Watts, destroyed on forums by bullshitters, liars, idiots, nitwits
and trolls, denied access, and pestered away, while they were not
allowed by the owners or moderators of these forums to speak the truth
in proper literary polemical English, because precisely that was
declared by them to be "inappropriate" language, that failed to show
"respect", namely to bullshitters, liars, idiots, nitwits and trolls.
It's the way of the world to crucify or persecute the best and the
brightest, but I'll be damned if I am going to thankfully smile to
nitwits or frauds and say
"Thank you, thank you, thank you: let's all respect nonsense and
nitwits, merely because they claim anonymously to have a
disease I happen to have, and let's respectfully not
criticize any anonymous bullshitter who posts on an ME-forum,
except in such terms as priests and clergy may be pleased with
(provided it is done with simultaneous respectful kowtowing), whatever
ignorant or false bullshit one tries to correct. Do not
displease anyone, especially not the pretentious, the phony,
the false, the posturing or the ignorant, for especially they need
respect: Give it to them, or get lost! And all the proof that
our Community and its Leaders need that one is a true bona fide
respectable patient with ME is that one becomes an anonymous member of
an ME-forum, who respects the other anonymous members!"
It's crazy talk, of the order of Procrustean magnitude of getting
rid of intelligent knowledgeable persons because their existence is unpleasant and
disrespectful to the democratic majority of the stupid and ignorant.
But yes... it is a fine way of getting a "unity".
And maybe I should say that so far this year I have kept up with
Changes: Summaries of relevant changes on the site.