article on ME/CFS by Sonia Poulton
on the Lipkin et al
M.E. on Phoenix Rising
eyes and my M.E.
PHILOSOPHY: But what's your job? There's no
harm in asking that.
LUCIAN: I'm an anti-cheatist, an
anti-quackist, an anti-liarist, and an
anti-inflated-egoist. I'm anti all the revolting types like that - and
there are plenty of them, as you know.
PHILOSOPHY [smiling]: Well, well!
You're quite an anti-body,
LUCIAN: I certainly am. You can see why I've
got myself aso much
disliked, and why I'm in such a dangerous situation. Not that I'm not
an expert pro-body too. I'm a pro-truthist, a pro-beautician, a
pro-sinceritist, and a pro-everything that's pro-worthy. But I don't
find much scope for exercisting my talents in that direction, whereas
thousands of people are always queuing up for the anti-treatment. In
fact I'm so out of practice as a probody, that I dare say I have lost
the knack of it by now - but I'm a real expert at the other part of my
PHILOSOPHY [seriously]: That's bad.
They're opposite sides of a
coin, as it were. So don't specialize in one at the expense of the
other. They should merely be different aspects of the same fundamental
LUCIAN: Well, you know best, Philosophy. But
I'm so constituted that I
can't help hating bad types and liking good ones.
(From: Lucian Fishing for phonies, in
Turner-vertaling, p. 177-8)
There is reformatted the XMRV
is dead Nederlog of Sep 18, 2012 (since Sep 19) and also
reformatted Nederlog of Sep 20, about the talk
of Lipkin and Racaniello, and talk of George Carlin and my eyes (since Sep
for the present format of Nederlog is that that I DO
problems with my eyes. And I meanwhile considerably improved the
opening of my
site, and made the
square in the middle light blue instead of white, for that is better
for such eyes as I have.
Update of September 23, 2012: I made a number of corrections, and added
a few paragraphs at the
new article by Sonia Poulton
Sonia Poulton is
a journalist who works for the Daily Mail. She wrote truly excellent
article about ME/CFS in May, that I reviewed and quoted here:
she did it again, having learned about the Lipkin study:
I am again quoting it: Here we have a real investigative
writing as a real investigative
journalist should. I provide the link to the article in the
MailOnLine in the title. You also will find the comments there.
Every thing between the two lines that follow is by Ms Sonia Poulton:
19 September 2012 9:03 PM
ME is no more 'in the mind' than Multiple
When is the world going to get that?
Ever since I first wrote on
the subject of Myalgic Encephalomyelitis - or to afford it a more
user-friendly title, ME - earlier this year for MailOnline, http://www.dailymail.co.uk/debate/articl...tigue.html
I have been overwhelmed by the response from patients and their loved
The over-riding message I have
received has been one of gratitude. I can tell you that this is
something of an unusual experience for a journalist writing for
These people have Facebook-ed and
Tweeted me. I have received calls and e-mails. There have been forums
addressing the article and pictures and cards received which outlined a
sense of relief for millions of people.
Many of these voices – including some
of the greatest scientific, legal and academic minds in the ME world –
have echoed a collective sigh to see their illness validated in the
The very notion that the media, and
the press in particular, can actually serve a positive purpose in
society may come as a surprise. But sometimes it does. And my piece,
according to the phenomenal response that greeted it, was just one of
Here's why. For decades, people who
have suffered the debilitating – and sometimes fatal – condition of ME
have been forced into a type of denial.
They have been told that their
illness doesn't really exist on the scale that they claim to experience
it (due, in part, to it being labelled a 'chronic fatigue syndrome'. A
highly controversial description because it creates an image of
something substantially less than what ME actually is).
They have been told, repeatedly, to
'pull themselves together' and to 'G.E.T. A G.R.I.P.' (a vile acronym
actually used to describe the graded exercise prescribed, wrongly, to
In short, it is not enough for people
to have to endure serious multi-system issues that can leave them
bed-bound for months at a time, but they are also made to feel bad for,
well, feeling bad.
What an injustice.
From the insight I have gained into
the ME world, I cannot overstate the consequences of such a
twilight-type existence. One in which your body responds a specific way
but you are told that it isn't actually possible. That it's not really
happening. That you are imagining it.
And that myth, of it 'being in the
mind' has been perpetuated worldwide.
Millions of sufferers have been left
in the dark to deal with their illness. Sometimes, if they are
fortunate, they will be supported by their loved ones - who are also in
need of support, too – but often they are left to deal with it alone.
For those reasons, certainly, many ME
patients may suffer depression but it is not the other way around - and
it is deplorable to suggest it is.
It may surprise you to learn that I
have detractors or, as modern parlance would have it, haters. These
people troll me on the internet as if their lives depended on it.
Around about now they will be making
comments like 'get the violins out - here comes a sob story'. Well, ME
is a sob story. And the way patients have been portrayed is grossly
wrong and that injustice must be recognised as such.
In my experience, they are anything
but cranks or victims but people who have simply waited too long to
have the truth of their experience recognised.
And that, partly, arrived yesterday
with the launch of the Lipkin Study, a significant multi-centre study
Chances are you may think otherwise
for, as is common with any major ME announcements, there were a number
of misleading reports prior to the press conference.
Subsequently, representatives from
the ME society have announced their intention to pursue media outlets
and seek rectification of some articles that have emerged.
In short, much of the media
misunderstood the Lipkin study findings. Partly because some reports
jumped-the-gun and took information from rumours and speculation rather
than wait for the official announcement. But, it also occurred because
the mis-information fed into already-established prejudices.
Many people, and for whatever reason,
want to believe that ME is nothing more than feeling a little
world-weary and tired.
It is nothing of the sort. It is a
neurological condition that savages the body. People die from ME and
millions across the world are being mistreated and misdiagnosed as a
consequence of poor and hostile reporting.
Yesterday's announcement – that ME
was not a result of the XMRV virus – seemed to herald, to some, the
idea that ME is not the result of any virus but is, infact, a
Wrong. Wrong. Oh, and for good
measure, wrong again.
Many highly-respected and learned
people have compared the overall devastation of ME to illnesses
including Multiple Sclerosis and even AIDS - and with good reason.
Dr. Charles Shepherd of the ME
Association responded to the misleading idea that ME cannot be
contracted by any virus by saying:
“There is, in fact, a great deal of
robust anecdotal and research evidence to demonstrate that a number of
specific infections - examples include enteroviruses, dengue fever,
glandular fever, hepatitis, parvovirus, Q fever, Ross River virus -
Many ME sufferers like Dr. Shepherd
have little doubt that their illness was triggered by one of these
viruses. The problem has been getting it recognised and appropriately
This is poor response, certainly, and
even more so when you factor in that the World Health Organisation
acknowledged it as a neurological condition over 30 years ago, then it
becomes more than a little alarming.
But there have been powerful forces
at play that have served to maintain the status quo on ME thinking, and
they have proven more than a challenge to be reckoned with.
For the past 60 years, the illness
has been hijacked by the psychiatric community as one of 'theirs'. They
have clutched ME to their collective bosom and have refused to release
the iron-grasp on it.
This wholesale insistence of it being
something that can be overcome with the right attitude has been highly
detrimental to those who actually matter in this debate: the people who
are suffering with it.
As a consequence, ME patients have
been failed in terms of adequate treatment and significant funds are
dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded
Exercise – which has been shown to have a detrimental impact on the
health of ME patients.
The problems about treating a
physical illness in a psychological manner are brilliantly explored in
Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the
topic with some considerable aplomb.
What we are dealing with here is a
systematic neglect of ME patients - and we should be under no illusion
Equally, we must be sure to tackle it
- medically and in the media - without hysteria or bile.
One of the reasons that ME patients
are so vocal is because the mis-information of their illness has
resulted in a dangerous delay of appropriate research and treatment. If
that were you, would you be quiet about it? I certainly would not!
So yes, ME is a modern-day scandal.
The way it has been portrayed is shocking. The Lipkin study, despite
its detractors, will enable a deeper exploration of the illness and how
it impacts and ravages bodies and lives.
And, to the relief of ME sufferers
worldwide, that understanding cannot come a moment too soon.
I quite agree and
thank Ms Poulton for her
fine, courageous and well written article. (I have a minor niggle:
While Ms Angela Kennedy has courage, a daughter with M.E., and means
well, she is definitely not brilliant, as shown by her still touting
the XMRV nonsense. She is a postmodernist sociologist, who got a
postmodern "education" she does not, alas, have the brilliance to see
for what it is.)
those who are interested: Here are are a dozen of links (to 11
Nederlogs on my site and one popular reference about Logic) that may
shed some light on my opinion - and no: If you have not read most of
the literature in the first link, you are - alas - not able to judge
this is issue rationally and on the basis of a good grounding in real
philosophy of science and logic:
2. ERV on the Lipkin et al study
Smith, who was one of the first virologists to see the scientific and
methodological failings in the Science study of Mikovits, Ruscetti,
Lombardi et al. that I commented on in extenso here:
and whose own longest blog about it is from September 29 2011:
with over a 1000 (!) comments also wrote
about the Lipkin et al. study.
She has another fine blog on it - I am
speaking of Ms Smith's text, and not about that of her
commenters, that as a rule is
varied in quality, tone and motivation, with a number of (medical
or not) sadists, that is dated September 19, 2012:
She also wrote a long series of blogs on
the topic - well worth perusing: I read all of them, and most
of the comments as well, in the first week of October 2011 (and I
should have done so earlier, but than I have M.E. and never was much
interested in virology, and pretended no knowledge about it either, as
explained in my
Here is the lot of them as a
By the way...: Professor Ian Lipkin has considerable praise for Judy Mikovits Ph.D., who is much despised - is, I think, the correct phrase - by Abbie Smith, while she was and probably still is much admired by quite a few patients with M.E./CFS.
As I say there, I am guessing, and offering neither a mathematical nor a judicial proof, and am no specialist on virology either.
My own view is - "It's the money, Leibowitz!" - that it is probably just that, as I explained here:
But there is very good circumstantial evidence, namely
taken out by Ruscetti and Mikovits, and it seems also by the WPI (the
Whittemores); there is an enormous amount of (potential) gain to be
from medicines against M.E., whether effective or not; there are and
have been many medical, psychological and psychiatric frauds targetting
the market of M.E./CFS patients in sickening ways; and Judy Mikovits
Ph.D. has presently excellent reasons to agree with professor
Lipkin that, after all, XMRV is contamination much rather than the
cause or a factor in M.E. and autism (she has publicly claimed both),
because the WPI is claiming millions from her for having the lab books
stolen when she was fired from the WPI: She still has court cases going
against her, by the Whittemores, about the lab-books that she
(apparently) asked her then assistant to appropriate for her.
For after all: IF XMRV is a mere lab artefact, as dr. Mikovits now agrees it is, the claims of the WPI on her for stealing very expensive property from them - THEN the lab books that would allow them to continue with the research on a potentially highly profitable research - would be rather or totally worthless, as dr. Mikovits lawyers now can argue in court, where is still being prosecuted by the WPI for lots-of-money (as far as I know).
about her more fanatic supporters (there also are less and non-fanatic
supporters of her, and by now lots of ex-supporters), the following
Nederlogs were all written between November 29 and December 31 2011,
here listed in the order of publication:
Bright Mystical Lights and
on WPI vs Mikovits
to the knees in woo
Reading: Marks of
pseudoscience, fraud and bullshit
Dr. Mikovits has a
WPI vs Mikovits = 1 : 0 +
Mikovits + The Scientist
mouse scandal + Dutch "democracy"
+ME: More on St. Judy
+ME: More on St. Judy
withdraws 2009 XMRV-paper
+ME: Lo/Alter paper retracted
Essays: Belief, whether
+ME: Sorting through some
about dr. Mikovits
me +ME: Update on the Lipkin + 11 Stud
Nederlog and ME/CFS
ME by the Official Rules (as
believe it more likely than not that the - according to many of her
supporters - saintly Judy Mikovits Ph.D. was in it, mostly - but
probably not wholly, as human motives are nearly always mixed - for
the money, indeed like many researches in medical science and
Apart from the above items, that outline a good prima facie case for
it, here is a final bit of circumstantial evidence, indeed the first
information that started my doubting her good faith or common
In March or April of 2010 I learned that dr. Mikovits spent enormous
amounts of time on... answering mails by patients wth M.E./CFS.
I found this quite odd and a mistake I would not have
made - were I, per impossibile - in her shoes, namely because it seemed
to me she could not possibly answer all or most patients' mail she got
and to the resea the scientific
research into XMRV she was paid and
supposed to do, and it would be unfair to answer only the mails of
some, and she has a lot of research to do.
And I never mailed with her, nor indeed with other real scientists
working on M.E. especially for that reason, that I also have given in
Nederlog: They need the time to do the science, and I cannot contribute
anything to them that they cannot find themselves if they want to.
Finally, since it seems to interest some:
3. Maarten Maartensz on M.E. on Phoenix Rising
I withdrew myself, my name and my posts from Phoenix Rising, on May 23, 2010, because I found its owner spineless; its moderators incompetent; while the beloved member Bob - Hey "Bob"! - had shown himself to be a trolling nitwit who also seems a sick sadist. Or that is what this psychologist believes.
For those who care for such things, here is an index of my posts on Phoenix Rising. It is not finished, but all the posts are linked at the top by arrows that are links to previous - index - next:
And speaking of The Owner Of Phoenix Rising...
I certainly do not trust him - and add here I have removed some material to support my lack of trust that I may put on my site eventually.
He writes regularly like the Hicks scammers:
4. The sadism link
There is a
definite link between sadism and the folks who keep insisting M.E./CFS
"'G.E.T. A G.R.I.P.'
acronym actually used to describe the graded exercise prescribed,
wrongly, to ME patients)" see
philosopher of science and a logical psychologist, this was immediately
obvious once I had started reading about it on the internet in October
2009 and I first wrote about it in Nederlog in January 2010:
was a mini series. There is more in the
Nederlogs of 2010
- depending on my eyes - I hope to say some more about it:
clearly medical doctors - not all, and also not the majority - who went
medicine because the like to "Primum
nocere" - and I find that very sick: totally dysfunctional
Then again, this is hard to fight if you are ill
or none to bright, and
unwise to attribute unless yiy have the academic qualifications for it.
(But you may think it, and you should be aware of it, especially in the
context of M.E./CFS and psychiatry.)
eyes and my M.E.
There is little to add to what
I wrote in
the last Nederlog on the subject except for two points, that may be
of some importance to some researchers and some patients:
A. I still sleep too little, clearly because of my
eyes, but so far
without collapsing, and part of the reason may be that, after having
(especially bread and pasta: I eat rice or potatoes instead) for 1 1/2
year now and I do not have - since months, the pain in my belly I had
It is anecdotal
evidence, but quite pleasant for me.
B. I do have now what may be three
M.E./F.M. (I have a diagnoses by three medical doctors), keratoconjunctivitis
more likely than not as a part of Sjoegren's
contraction, with the problems in my eyes and hands both
developed in my early sixties.
And then I should also mention that (i) the problems with my eyes
started in my late forties (I have M.E./F.M. since I was 28), namely
with eyes that became very changeable throughout the day, also
glasses, that I needed since I was 10, and (ii) when my M.E./F.M. was
most severe, in 1992, and also the last decade or so, I have rheumatic
pains in my hands: In 1992 I couldn't carry 750 grams in my left hand
without pain, and had - a doctor said - red knuckles on both hands due
These disappeared since then, in 1993 mostly.
"so it goes..." as also shown in me+ME:
ME by the Official Rules (as is and to be) - year 34
As a patient the most one
can do is try to survive and keep writing about it on the internet, in
the hope it motivates benevolent real scientists to research the
condition and to contradict psychiatric and psychological fraudulence
and/or stupidity and/or ignorance.
The main problem here is that the psychiatric and psychological frauds
pretend to be scientists but write and talk PR, and are quite effective
in getting their pseudoscientific PR accepted by the media and
politicians, while a real scientist keeps far from PR and therefore is
not by far as likely to be believed by either the media or the
It is therefore very nice to see that some journalists, like Sonia
Poulson, and indeed others I have mentioned in Nederlog since 2010, can
see through the pseudoscientific PR masquerading as "modern
psychiaty" and find
the courage and
opportunity to write or talk about it in public.
It is highly appreciated by me, even though the voices of reason and
moralty thoughout human history have been in a minority, everywhere and
always, rare places such as some of the best universities, sometimes,
P.S. My eye
necessary corrections have to be made later.