I continue being not well, and otherwise also as before, so I cannot do
much. But there is a little progress, and in my case and at present it
has to do with B12. So here are some more links relating to ME, B12 and
to start with news about XMRV.
1. XMRV claimed to be lab contamination
2. Good new video about ME and some useful sites about ME
3. Some more info about B12
1. XMRV claimed to be lab-contamination
Today - so was I informed privately, and indeed - there are
papers ready to be published in Retrovirology that all claim XMRV
is due to lab contamination, indeed also as regards the prostate cancer
link to XMRV. Here is a link to the first of these five papers:
The other four have the same link, except they are numbered 109-112
(rather than 108, as provided), and the reason to phrase it as I just did
is that I found the site of Retrovirology very slow when I tried.
But in case you want to know: The abstract and pdf said to be
prepublications are all there and they are free of charge (as they should
Here is a link to a UK based institute that seems to be named thus
Under the link (right upper corner) you find a paper with the title
"Chronic Fatigue Syndrome is not
caused by XMRV
New research shows XMRV virus is a lab contaminant"
It is quite plain and unqualified, in their reporting:
previously thought to be associated with chronic fatigue syndrome is not
the cause of the disease, a detailed study has shown. The research shows
that cell samples used in previous research were contaminated with the
virus identified as XMRV and that XMRV is present in the mouse genome.
XMRV was first linked to chronic fatigue syndrome – also known as myalgic
encephalomyelitis (ME) – in a study published in October 2009, where
blood samples from chronic fatigue syndrome patients were found to have
traces of the virus. XMRV had also been identified previously in samples
from certain prostate cancer patients.
The new study, published in Retrovirology, identifies the source of XMRV
in chronic fatigue syndrome samples as being cells or mouse DNA rather
than infection by XMRV. The research does not rule out a virus cause of
chronic fatigue syndrome - it is simply not this virus.
The research team developed improved methods to detect XMRV against the
genetic noise of other sequences and make recommendations for future
study of virus causes of human disease.
“Our conclusion is quite simple: XMRV is not the cause of chronic fatigue
syndrome,” says Professor Greg Towers, a Wellcome Trust Senior Research
Fellow at University College London (UCL). “All our evidence shows that
the sequences from the virus genome in cell culture have contaminated
human chronic fatigue syndrome and prostate cancer samples.
“It is vital to understand that we are not saying chronic fatigue
syndrome does not have a virus cause – we cannot answer that yet – but we
know it is not this virus causing it.”
Not being a retrovirologist and never
having pretended any knowledge in the field, I have since October 2009,
when the relation between XMRV and ME/CFS became known through a paper in
Science, kept mostly outside the debates (except when patients claimed
falsely that it is known XMRV causes ME, for which see:
Bloody stupid hysteria + lying and when
Patricia Carter and others thought it a fine idea to infect the blood in
blood banks with blood that is XMRV+, for which see:
On infecting and storming blood banks).
So... what do I think? I have read but one of the five papers in
Retrovirology mentioned above, but they may be right, up to a point, in
that everybody who really knows about retrovirology agrees lab
contamination is one possible explanation of the XMRV-findings.
On the other hand, the folks who originated the Science paper, and the
Lo and Alter and co-workers who found MLV in patients with ME/CFS, also
know retrovirology, while the group of Lo and Alter took much care to
exclude lab contamination.
Besides, lab contamination does not explain why in the research that
linked XMRV or MLV to patients with ME/CFS or prostate cancer found high
presence of XMRV in patients, but around 4% presence of XMRV in their
controls: If it is all due to contamination, it would seem that the rates
of finding XMRV should be the same, all over the board, or else
vary widely, without rhyme or reason. But repeatedly the rates of
infection in patients and in controls were found to be very similar,
which is a fact hard to combine with either chance or contamination. This
does not exclude contamination nor chance, but the Sanger Institute
surely overstates the case, on the present evidence: Even if there is
contamination involved, much remains to be explained.
I am not, therefore, convinced, and indeed unkind enough to note that
the Sanger Institute is UK-based, and the UK is a country whence much
pseudo-science relating to ME/CFS has been produced by - provable! -
scientific frauds like Wessely and White. But then my remark is not meant
to defame the Sanger Institute, but only to register that it is not
unlikely they are being loyal to professors Wessely and White, their dear
colleagues, as also would be very human if not very scientific indeed.
Also, I note that it seems to have been quite like this in the early
days of HIV (the existence and/or causal role with regards to Aids is
still contested by some medically qualified folks), so that what I most
expect is a protracted debate between those who found XMRV or MLV and
those who did not find it.
And at the moment I am most interested in hearing from
doctors Lo and
Alter, who found MLV in patients with ME/CFS, and took much trouble to
prevent lab contamination, and from Dr. Lipkin, who was assigned by the
NIH the task
to investigate the matter, and whose report was promised for this month.
In any case: I would recommend my readers with ME, or with someone
they care for with ME, not to loose heart: Even if the XMRV-explanation
were to be killed effectively - and I am by no means convinced it has
been, or will be, though it may - the situation for patients with ME is
still better than it was for the over three decades I had it,
until in October 2009 the XMRV-explanation was published in Science.
2. Good new video about ME and some useful sites
LaurelB, whose blog
Dreams at stake
I like and who made an impressive
testimony. about ME/CFS
made a new video about ME which is a fine and clear summary of where it
stands late in 2010:
If you are well informed about ME/CFS, you won't learn anything new,
but if you are not, you get a very clear sum up in slightly over 4
minutes (that took LaurelB more than 4 months to produce: she has severe
And I found the last days two useful sites about ME, both concerned
with research into it:
The last seems quite well done and is new, and in Dutch, with this
Dutch intro stating why it exists:
Deze website/blog is bedoeld voor sceptische
M.E.(cvs)-patiënten die niet zomaar aannemen wat artsen,
onderzoekers, paramedici en andere -peuten over hun aandoening en
Het is ook bedoeld voor de arts, researcher,
paramedicus, -peut die durft toegeven dat zijn opleiding haar/hem
ook niet alles heeft geleerd en kritisch staat t.o.v. wat de
beleidsmakers, de media, de farmaceutische/diagnostische industrie
Een ander doel is relevant wetenschappelijk
onderzoek te initiëren.
Hier zullen (hopelijk) regelmatig nieuwe stukken
te vinden zijn of relevante, ietwat oudere literatuur worden
Having only recently found it, I can't
say much about either site, but the Dutch site seems to contain quite a
few (partial) translations of research written in English, and both
should be interesting for those wanting to see scientific articles
relating to ME/CFS.
3. Some more info about B12
I wrote the last time -
Some useful links about ME+B12 - i.a.
about B12 and gave quite a few references, including this long thread on
This is 177
pages at present i.e. some 1770 posts. Over the last two days I managed
to read and excerpt over 1400 of them, no doubt thanks to the B12 I take
since December 1, for else I couldn't have managed and indeed wouldn't
People who know me can mail me for the
excerpts (600 Kb at present, so still a long read, if you want to read
all of the excerpts), though I should say that most you need to get the
idea and the protocol is in the first 7 pages of the above linked thread.
If you think 1770 posts is a lot to
read through (it is), here is a far longer thread about B12, that is
quite interesting, and contains most of the background about B12:
Note this has not a mere 1770 posts, but presently all of 27,196 - for
which reason advice I read on PR-F, namely to start at the end rather
than the beginning, probably is helpful. In any case, there is a great
amount of information about B12 there.
Also, there is the following very useful start, for those who want to
peruse the 12,196 pages with some sort of primer in their minds, of a
mere 3 pages:
Also, the last
two links are on a quite interesting site:
This seems to have a lot of interesting information related to
medicine and - indeed - wrong diagnoses of many kinds.
There are more interesting links relating to B12, but the above links
are a lot of text, and most information I found is already to be found in
the links in my
Some useful links about ME+B12 of the day
There is one thing to remark, though, which relates to what I said in
the last link, and the treatment protocol freddd offers in the first
B-12 - The Hidden Story.
My remark is this:
Freddd's protocol is a fairly radical one,
based on his own experiences, and quite a few who followed his advice,
with various effects, and you should be aware that, if you have ME and
want to try the protocol, there is an appreciable chance that on Freddd's
protocol you start getting worse before you get better. This seems to be
a consequence from the protocol Freddd favours and also seems to be
reversible by stopping the protocol, or taking considerably less than it
If you want to run the risk of getting
worse, then that is your privilege, but you should be aware of the risk,
and be certain that you can run it, basically because you know you will
be helped in case you need it.
As I have no such knowledge, I cannot run
the risk, and also I like to use the clues my own body gives: If it
hurts, don't do it, if you can - unless indeed you must, as when a major
operation is necessary to save your life.
And as it is for me at present, it seems
that I have found a supplement that is more effective than any I used so
far - and I used megadoses of vitamins, especially B, C and E, because it
seemed to help me, and such statistics as I gathered supported that
impression quite well - and personally I want to take it
carefully from there, and indeed experiment further and discuss it
with my doctors, because it helps me, and is based on good basic
biochemistry (*) and I should also like to have it
prescribed if possible at all, so that my insurance pays it, rather than
that I have to save for it from the dole I receive.
(*) Much rather than
fraudulent pseudoscientific bullshit of my fellow Dutchmen the egregious
Bleijenberg and Van der Meer, whose own congame is based on the fallacy
of appealing to authority: 'Look you, I Am A
Scientist - Believe Me that You Are A Dysfynctional Thinker: Go take
psychotherapy and exercise'. I oppose my own authority: Look you frauds: I have
had the same education as Bleijenberg, being educated at a Dutch
university at the same time as this fraud and conman - except that my
education was more scientific than his (since
I found out soon enough that psychology is for the most part hardly a
Gijs Bleijenberg is a despicable fraud, a
liar, a conman, a cheat, and a betrayer of science. I can say so because
I know at least as much psychology as he does, and much
more science and mathematics and philosophy and methodology than this
major ignoramus. Besides, I am far more
intelligent and erudite than he is, older, and
far more honest
and far more moral - for I usually say so when I don't know
something, so very much unlike scientific frauds and conmen like
professor Bleijenberg, and also I did not help drive several tens
of people with ME into suicide by my published fraudulent pseudo-science,
as Bleijenberg did, that only served his own income, his own
career and his own status, at the cost of the healths and lives and many
years of pain and discrimination of untold many Dutch ill people, that
according to this fraud from the Radboud University were not ill, but
malingerers, or unable to think as well as he can (!!), this greatest of
all impertinent and lying academic idiots I have read.
What a horrible moral and intellectual creep!