ME + me : XMRV blues - part 3: Prof Myra McClure's suffering
I am still not well at all etc. as before and
it is early afternoon as I am writing this, and it is also heating up
here in Amsterdam, with tropical temperatures between 30 and 36 degrees
There is some more XMRV news, that again reached me by special
correspondence (from the English giantess), me being mostly too
exhausted. But I see what I can do, till I've definitely dissolved, and
indeed do have (if I can reach so far) a few interesting entries
1. XMRV blues - part 3
2. The ME Association Takes A Stand (or two, or three),
3. Professor Myra McClure's immense suffering
4. The Logic Of CDC|KCL|Radboud Research
1. XMRV blues - part 3
It is mostly more of the same, and I'll first give links and then
follow up with a few brief comments
The Nature article is the best reporting; the Science Magazine
gives most of the relevant facts, but seems to have spoken to the CDC and
to be rendering its public spin, since it claims
In the latest twist in a contentious debate about a possible tie between
a retrovirus and chronic fatigue syndrome (CFS), the journal
online a study led researchers at the U.S. Centers for Disease Control
and Prevention (CDC) that refutes that link.
Not even the CDC - see below, for the ways of the bright folks over there
- currently maintains in their publications meant to be counted as
"science" that the CDC "refutes that
link.": That's just plain false, and what they in fact claimed was -
and I quote the end of the abstract of the CDC "study" that Ms. Jocelyn Kaiser, who perhaps
should seek a career in fashion reporting , must have
We did not find any evidence of infection with XMRV in our U.S.
study population of CFS patients or healthy controls by using
multiple molecular and serologic assays. These data do not support
an association of XMRV with CFS.
Hence, I would say I have just given data that do not
support an association of intellect and
fairness in Ms. Kaiser, although in the fairness of my heart I add
also I have not refuted the possibility of such a link.
2. The ME Association Takes A Stand (or two, or
And this leads me straightaway to Dr. Sheperd and Dr. Goudsmit. I gave a
link to Dr. Shepherd's dealing out calming verbal salve to those who read
him. Dr. Shepherd sits on the fence; keeps all possibilities open; and
seems to get most of the facts right. My problem with his prose is that I
don't like his style, and I see no need for such salve as this,
concerning proper, correct, appropriate modes of behaviour:
unauthorized report about the NIH/FDA study by a news agency in the
Netherlands disrupted steady progress being made toward publication of
Now Dr. Shepherd
may sit on the fence, and probably means well, but he should know that
there are and have been quite a few very strange goings on around
ME/CFS, its study, its funding, and the various kinds of real and pseudo
science that have been produced about it the last 25 years, that is quite
astouding from a rational scientific point of view, whatever one's
concern with ME/CFS, because it shows that a whole lot pseudo science,
lies, deliberate misinformation, and denying of patients rights have been
going on and have even been published as if they are "evidence based
It seems quite possible, indeed quite likely, that at this point of time,
one just cannot achieve much for patients with ME if one keeps playing
politely by the rules of etiquette, politeness, propriety, and respect
that have been for decades so remarkably protective for
pseudo-scientists and liars like Reeves and Wessely. And it also seems
not very unlikely as if this o so very deplorable leaking, that was o so
very disruptive, may well have been engineered on purpose, to prevent
pseudo-scientists and corrupt health-bureacratsi in the CDC once again
kill off REAL scientific research into ME/CFS, and to make it known there
is a positive XMRV study, that confirms and extends the result of the
original XMRV study published last October in Science.
But Dr. Shepherd pulled the hymnsheet of the salving-the-patient book,
and yodelled a bit from that. Personally, I find this a bit odd in the
circumstances, but then I undoubtedly lack Dr. Shepherd's spine and
habits of writing.
also is a bit astounding and needs some remarking is that Dr. Shepherd is
kind and factual enough to note that his dear approximate colleague at -
what such folks as he and her just seem to love to all by such endearing
PC-terms as - American Sister-Organization has published what he calls
A critique of
the Switzer study by Association scientific director Suzanne Vernon, PhD,
whose PhD in fact is in the relevant specialism of retrovirology and whose
critique is titled
from a Stone,”
to which the kind Dr. Shepherd even provides a link (as you may find by
clicking the title), but which he does not seem to wish to concur with,
while he also neither disputes nor discusses it.
This is a bit odd, since Dr. Vernon, who has the relevant
knowledge Dr. Shepherd does not have, is quite slashing in her critique,
and quite rightly so, indeed regardless from the fact what the eventual
truth of the matter will be, seen from e.g. 2110 - if mankind makes it
that far of course (which with present political and economical
"leadership".... but let me leave that topic alone, for the moment).
As I said, this is a bit odd, but then Dr. Shepherd is not rightly in the
relevant know, and besides not possessed of a spine like mine, nor indeed
of a similarly qualified mind, but then that is neither his nor anyone
However, he may be mostly right - indeed, given what he wrote he cannot
fail to be - and no doubts pours salve with good intentions.
What is more than a bit odd is Dr. Goudsmit's take, who perhaps
may have a higher insight into divine omniscience than other folks have,
and who certainly has some - how shall I put it - original takes
on what merits research:
Here is an exchange on the horror called facebook, that I was mailed,
that gives the relevant details:
There's a virus that is possibly implicated in MS, ME, Parkinsons,
Alzheimers, several cancers, Lupus and other auto-immune and
neurological diseases. It's called XMRV. Why haven't you heard of
it? You may well do soon. If you're in any doubt this is a
hoax/conspiracy, put XMRV into your search engine. Then spread the
word please and get governments to act fast.
14 hours ago
Please copy and paste on your wall and encourage all your friends
14 hours ago
Act on what? A 'possibly'? We've had those before. There are no
funds to spend on 'possiblys'. As things are going, this possibly
looks like a 'not very likely'. Another passenger virus, perhaps.
3 hours ago
Under the circumstances Dr. Goudsmit's stance strikes me as quite
odd, also because she has about as little relevant scientific knowledge
of retrovirology as I do, as far as I know. (She is a psychologist, like
I am, though of another kind.)
And while I admit that I do not know whether XMRV causes ME/CFS, I
think the possibility and indeed the danger are far too
important not to research - let alone the chance that XMRV is
being transmitted by blood transfusions right know, in almost all
countries, to people in hospitals, with unknown, possibly grave dangers
Now it seems to me also the case, as I explained yesterday, that the
dangers are now seen to be so considerable that it seems probable XMRV
will be thoroughly researched, if necessary with government funding, if
dr. Alter's study remains standing, as it likely will, just as it is not
unlikely dr. Alter's present research is related to what the CDC did
wrong, so as to be able to avoid those mistakes in the future.
Time will tell, probably rather soon, and if the sketched scenario holds
dr. Goudsmit's opinions on what merits research and what not will have
been refuted, but meanwhile she really is mistaken in holding that, in
There are no funds to spend on 'possiblys'.
Sorry: That's plain false. Scientific research is done precisely
into 'possiblys'. That is what scientific research is for. After
all: if you know something is so, you don't need to do research it.
"Elementary, my dear dr." Goudsmit!
Or that's what I would think, but perhaps she, like me, is suffering from
the heat. (*) Which leads me to another suffering
3. Professor Myra McClure's immense personal
Professor Myra McClure is a dear colleague of Doctor Suzanne Vernon
(all medical doctors are publicly dear colleagues) and I have reviewed
her scientific and literary abilities in the following instructive bit
of prose, that also introduces you to the beauties of science and
writing in the true KCL-Wessely style:
As it happens, neither professor Wessely nor professor McClure took
the trouble to answer that, though it seems to me likely they did
read it (because that is in their personal interest, and the piece has been
much read and downloaded; not because I am vain).
For a Wessely or McClure, such an answer, that they may also give
in court, should be extra-ordinarily easy, since I am, as professor
Myra no doubt was told by professor Simon, like 17 million others,
sadly and gravely afflicted by
a dysfunctional belief system, which is
the one and only true cause - KCL|CDC|Radboud style -
why I have felt
miserably ill these 32 years, while getting the best possible academic
degrees in psychology and other fields.
That is because I cannot think rationally, and because I cannot
think rationally, as a Wessely, a White, a Chalder, and a McClure all
can and do and have done, so very clearly, it is that I and 17 million
others with my kinds of complaints, including medical doctors,
physicists, mathematicians, lawyers, psychologists, biologists and all
manner of other academically qualified dysfunctional irrationalists:
We have all - these 17 million, give or take a few -
thought ourselves ill:
That is professor Wessely's proud personal contribution to MEdical
science, as expounded by himself also, while this
is my own clearly dysfunctional take on professor Wessely's many cognitive and
No answer yet, by either Myra or Simon.... but now there is this, from the
grievously afflicted dear Myra, who never lies nor deceives, who always meant so
well, who trained so hard, in whose personal talents and integrity so much was
invested by so many others, who studied so hard propelled by her honourably and deeply
felt personal desire to help people, who is an honourable woman through and
through, and a courageous woman of the highest moral principles and fortitude as
ghastly, " says retrovirologist Myra McClure of Imperial College
London, the lead author on one of the three published studies
that came up empty-handed. "I've had people writing me, and I
quote, that I don't know my arse from my elbow, and that I
should be fired." Four months after her first paper on CFS came
out, McClure says it was also her last one. "Nothing on God's
Earth could persuade me to do more research on CFS, " she says.
It is too F*ing much for poor Myra! She can't take no more!
Patients who have been ill for a mere three or four decades, who are
well maintained on the English dole, and nicely treated with gradual
exercise therapy and cognitive behaviour therapy to cure them from
their dysfunctional belief systems even dare to
mail her that the dear
know my arse
from my elbow - where she means, the poor poor dear, her
arse and her elbow, dear reader, and not mine nor yours (though
I doubt she could tell the difference between mine, but then I am
merely a cynical old man in considerable dysfunctional belief of
being in considerable dysfunctional pain).
Aggrieved! Aghast! Afflicted! Ms McClure: Mail Martlet, the
Moderator from PR, and she will heal you by a prayer meeting! Truly!
(As truly and as tested as your science, dearie, so you better believe
me! There is a hope, yea a prayer of a hope, of a cure for your issue,
poor darling Myra! And even for your Pinokkio-nose, dear.... real
surgery is not needed: prayer and CBT will work for you, luv!)
As you see, this poor psychologist does what he can to help the
needy and the puzzled, in the goodness of his heart!
Which leads me to one more subject that many persons, yea even Myra (if
and when she has calmed down, and don't you dare laugh, you meanies
with your 'fatigue" in the dole), are mostly pig ignorant about, namely logic and scientific method:
4. The Logic Of CDC|KCL|Radboud Research Fully
Having myself read more logic, methodology and philosophy of
science than professor Myra, professor Simon, professor Bill Reeves,
professor Bleijenberg, and professor Van der Meer have seen in
their lives, I feel quite confident to assert, since in the days prior
to being struck by
my present dysfunctional belief system, and indeed
for quite a while after that as well, I believed I easily could and
should become a professor in one of those subjects too.
Fate dictated otherwise, and thus I came to learn rather a lot
about the pseudo-science that is
peddled by the named gentlemen and their willing acolytes, for which
reason I can give a rather complete, fair, unbiased outline of
Logic Of CDC|KCL|Radboud Scientific Research into ME, and indeed
also into other medical conditions, especially such as may cost the
state or the health-insurance corporations money they'd rather spend
on themselves than on patients.
Here then it is - and I tell it as professor Myra and professor
Simon and professor Gijs and professor Jos and professor love to tell
it and have told it, some for decades, with great satisfaction and great
ME does not exist - for it cannot be found with
ordinary lab-tests, and what cannot thus be found cannot medically
exist. (QED) But many people are fatigued, and sometimes a long
time. We CDC-etc Scientists call this Chronic Fatigue
- scientifically also, after a wellpaid conference. We then
make a scientific list of patients thus chronically
fatigued. Doing this we take real proper scientific medical
care, namely to exclude from those lists all of such
folks as are ill with "ME"
(in the sense of the
Canadian Criterions, the testing of
which requires more than ordinary lab-tests, and which includes
various serious conditions and symptoms that an ordinary GP cannot
explain). The scientific list of remaining tired patients we call
CF patients (or "CFS", on respectful days). Sometimes we
even take some blood of some on the list of these CF patients that
remains, to do some Evidence Based Science (aka E-BS).
Significantly, to our great remorse, nothing can be
scientifically found in such patients blood (so clearly these
patients are deluded, alas, though happily there are
therapies for that). If then there are found to be people with "ME"
in whom some rare "researchers" - who are not even government
employed! - who did a bit more than duly permissible ordinary
labtests, have shown the presence of some quite dangerous new virus, we
CDC|KCL|Radboud-scientists insist that patients with "ME"
are evidently chronically fatigued - after all, that's why it is
properly called CF, don't you see? - and then we sort of
scientifically kind of partially imitate something that looks like
their research, and do so on a small set of the scientific
CDC-list of genuine CF-patients (from whom all the
really ill have been kindly and scientifically excluded,
evidence based CDC-science has proved, since
decades also, in case you didn't
know). Very significantly and quite surprisingly, it then emerges
that ... nothing at all can be found, scientifically.
Therefore ME does not exist, and neither does the virus.
QED, and by real evidence based goverment supported medical CDC
science, no less. (But yes, yes .... we medical scientists from the
CDC|KCL|Radboud are really very, very, VERY sorry for all these poor
frightfully fatigued patients, since so many of them do have such
ghastly issues, e.g, even with us, as if they sick patients have a
right to meddle with evidence based government supported science,
don't you see?)
The Logic Of CDC|KCL|Radboud Scientific
Research Fully Explained: (CDC|KCL|Radboud version)
So now you all know how to do CDC|KCL|Radboud-approved
pseudo-science, and how to prove things that exist do not exist,
and get away with it: Keep lying like Hitler (or a certain Dutch
neo-nazi), for the Grosze Luege (the Big Lie) is easiest
swallowed by the masses, especially if they are journalists or want to
be(come) friends with those in power.
.... as I yesterday indicated in Nederlog,
my own guess is that THIS time this won't succeed, because
XMRV is too dangerous for the general population, regardless of
whether it causes ME. That is - of course - if dr. Alter et.al. do not
retract their earlier accepted paper, and use the ongoing period to
(mostly) add to their announced positive results. I expect they won't
retract, but if they do, the whole XMRV play alters, and if they don't
and it gets published, the whole XMRV play also alters, and indeed the
US government and other governments have a major health-problem to
solve, which they also must solve rapidly.
Interesting times we live in.
P.S. For an exhausted nearly boiling ill man with
dysfunctional beliefs, I wrote rather a lot, I must say. But then I
think it needs saying.
19.40: I repaired a number of typos and glitches, it being very hot
Meanwhile the P.P.S. still applies, though - drop, drop, drop it
trickles from my brow - I have been promised thunderstorms and other
much desired rainy events RSN:
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
As to ME/CFS (that I prefer to call ME):
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 understands ME is an
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:
is wrong always, everywhere, and for anyone, to believe anything upon
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. SleepyDust explains what life with ME/CFS is like for patients
10. Laurel explains what life with severe ME/CFS is like for patients
me! alas, pain, pain ever, forever!
No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!"
- (Shelley, "Prometheus Unbound")
"It was from this time that I developed my way of judging the
Chinese by dividing them into two kinds: one humane and one not. "
ME -Documentation and
ME - Resources
ME - Resources
needs is a Work In Progress that hasn't progressed today.
(*) But then why publish if one is heated? In any
case, Dr. Goudsmit should know how science proceeds and what
scientific research involves, and not tell the public the thing that
home - index - top -