As before, I continue being not well, but I have done some reading and
checking of what's being said about and around the Lo/Alter paper (as
seems the right way to summarily refer to it) and provide some links with
some comments below.
First where I left matters yesterday, repeated because the first is a
link to the Lo/Alter paper and the second a video from the WPI with Dr.
Judy Mikovits providing clear explanations and comments:
As I also said yesterday: I have read the Lo/Alter-paper and it is
good and the brief of it is that the Lombardi/Mikovits study has been
confirmed and that the chances for persons with
ME/CFS to be taken seriously and for more good biomedical research into
ME/CFS are now much better than they were before this. Also, this is good
confirmation by the best possible scientists, both in terms of scientific
standing and in terms of who they did the work for, and besides the
reporting and writing is quite clear, in so far as this is possible with
this subject, while the science, samples and methods used are well
described and documented, which in fact is quite important from a
methodological and philosophy of science point of view, and much
appreciated by me, and certainly of help to many others.
Before giving a number of commented links to reactions on the
Lo/Alter-paper and press conference, it is best to provide some summaries
and quotes of what was said during that press conference, that is quite
from Phoenix Rising, with my boldings added:
Some fragments of transcription:
"We think, basically, it confirms the findings of the
"It does, at least, confirm the findings of Whittemore-Peterson...I think
one wants to go back to their studies because they've had more time,
and they've done extensive work...so their study is more advanced than
ours, but -with that as...er...with them having done the groundwork I
think our study is highly confirmatory of their work..."
"Our findings show that the more diverse group of virus there is
compatible with the XMRV, the xenotropic one, but really not identical
and more closely related to the polytropic group."
"Does the finding of a polytropic virus suggest a looser association with
CFS than finding a xenotropic would have?...It would seem to suggest more
of a process of chance than a firm association."
"No, actually this group of virus we call the polytropic MLV - this is
actually more characteristic of a retroviral infection...in fact what we
found is it actually gives us a very good confidence this can not be an
arbitrary artefact from PCR or contamination because the sequences
are so varied from one patient to another."
"They are in the same family but...they are compatible with the
earlier finding of the XMRV, however they are not identical and they are
And so is it usual that you would find an association with a single
disease with this kind of a variety of viruses?
"Yes, indeed, that's exactly what we anticipate for retrovirus
infection...over time you will see the many different sequences
"...The retroviruses...exist in big families of viruses...Hepatitis C is
a very good example, nobody's infected with one variant... they have a
whole huge family of variants...and if you take any given patient the
patient will have multiple variants in them, and different patients will
have different variants, so it's very characteristic of these kind of RNA
"Since the original publication the WPI and NCI groups have found that
they too are finding greater variability in their patients so it is not
just XMRV as in the original cohort of patients."
"I think...we can say we found this kind of variability that's
actually MORE consistent with the natural form of a retrovirus infection
in this group of patients."
I have bolded what seems to me new and interesting or summary:
- it confirms the findings of the Whittemore-Peterson Group
- more is involved than XMRV: A group of viruses called the
- what was found fits very well with retrovirus infection
In the link I provided there is more, and on Phoenix Rising I found
links to mpg-files, but the one I downloaded failed to open, but that
very well may be due to my computer rather than to the recording.
Next, here are some of the links I found that I found interesting or
worthwhile for some reason:
This starts of with a first paragraph thus:
- The perplexing condition known as chronic fatigue syndrome (CFS)
might be linked to infection with a retrovirus, report the authors of
a new paper published this week in Proceedings of the
National Academy of Sciences (PNAS).
and ends with a last paragraph thus:
- In fact, it might take a new treatment to clarify the role of
these retroviruses in CFS. And some researchers think the time is
right to start looking into drugs that fight against retroviruses,
known as reverse-transcriptase inhibitors (as have been investigated
to address XMRV in prostate cancer). "Studies to establish proof
of principle are justified to determine whether safe antiviral
regimens can impact on CFS and to determine whether xenotropic or
polytropic MLV is causally associated with this debilitating
disease," concluded Courgnaud and her colleagues.
This article is well done, as indeed on may expect from Scientific
Some might have guessed that the Daily Mail would not write about
this issue or write nonsense about, but no: Claire Bates did quite
well, in evidence of which are four subsequent brief paragraphs that
are much better than the collected works of British professors of
psychiatry I could name:
- Scientists found evidence of murine
leukaemia virus - known to cause cancer in mice - in 86 per
cent of chronic fatigue patients.
However, traces from this family of bugs were only found in seven per
cent of samples from healthy blood donors.
It adds to the growing body of evidence that an infection could play
a role in the complicated illness.
ME – also known as chronic fatigue syndrome - affects around 250,000
Britons. It usually develops in people in their early 20s to
Another competent article from a scientifically qualified source,
from which I quote the second, fourth and sixth paragraphs:
- In the new study, conducted by scientists at the National
Institutes of Health (NIH), the U.S. Food and Drug Administration
(FDA), and Harvard University, researchers scanned for traces of a
virus known as XMRV in samples taken from 37 CFS patients, collected
by Harvard Medical School CFS specialist Anthony Komaroff in the
mid-1990s. They found evidence for the virus in 32 (87%) of the
patients, but in only three out of 44 healthy controls (6.8%). It
remains to be seen whether the infection causes the disease or vice
versa, says NIH virologist and co-author Harvey Alter—but he's
"confident" that the findings are correct.
- Skeptics were concerned that the XMRV Mikovits had found might be
the result of contamination by mouse DNA in the lab. To address this,
the new study's first author—FDA virologist Shyh-Ching Lo—and his
colleagues tested every positive sample for murine mitochondrial DNA.
They found none.
- The data do seem solid, admits Steve Monroe, who co-authored the
conflicting CDC paper. "It's simply a good paper," adds Reinhard
Kurth, the former director of the Robert Koch Institute in Germany,
who helped test some of CDC's samples and did not find the virus
either. Alter—a widely respected virologist and winner of the Albert
Lasker Award for Clinical Medical Research—"clearly knows what he is
doing. They did everything correctly," says Kurth, who nonetheless
says he remains skeptical.
This skepticism then is further discussed, and the paper has this
"They should be able to clear this up by Christmas," says Kurth.
Many of the main players in the controversy plan to attend a
workshop organized by NIH on 7 and 8 September. Mikovits, who is
on the scientific committee, says she has seen the abstracts of two
presentations confirming her findings. "I think it will be fun," she
Hope in Fatigue Fight" - by Amy Dockser Marcus, in the Wall
She wrote sensibly about ME/CFS
before, and does so now, and writes among other things about the
subject of clinical trials with HIV-drugs for selected patients:
Andrew Mason, a
University of Alberta professor, co-wrote the commentary in the journal
calling for trials testing anti-retrovirals in CFS patients who are
positive for one of the MLV-related viruses. "If the patients improve,
after a certain point you stop debating whether it causes the disease
and say, the treatment works and we're going to use it,'' said Dr.
However, at present
there is still some skepticism
But until scientists
develop further evidence establishing that the virus causes the
syndrome, a large-scale clinical trial testing HIV drugs against the
ailment isn't likely. Norbert Bischofberger, chief scientific officer
Gilead Sciences Inc., the leading maker of HIV drugs, said the
company might consider a small pilot trial but would like to see
stronger evidence that the viruses cause CFS before launching a large
trial. Still, "I'm very open, and this would be a great opportunity,''
Even so, there are also people having some success with such as dr.
Jamie Deckoff-Jones, as also reported in the article.
This is another good article by a journalist who wrote sensibly on
the subject before, and it starts thus (with the links as supplied in
- When the journal Science published
attention-grabbing study last fall linking
chronic fatigue syndrome to a recently discovered retrovirus, many
experts remained skeptical — especially after four other studies found
no such association.
Now a second research team has reported a link between the fatigue
syndrome and the same class of virus, a category known as MLV-related
viruses. In a
paper published Monday by The
Proceedings of the National Academy of Sciences, scientists found
gene sequences from several MLV-related viruses in blood cells from 32
out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.
Further on there is this, again with link as supplied in the article
- The findings are sure to raise concerns about the safety of the
blood supply. AABB, formerly known as the American Association of Blood
recommended in June that people with the illness be discouraged
from donating, pending further study.
“The possibility that these agents might be blood-transmitted and
pathogenic in blood recipients warrants extensive research
investigations,” Dr. Alter and his co-authors wrote in the new study.
Judy A. Mikovits, the senior author of the Science paper, said she
hoped to organize clinical trials of antiretrovirals by the end of the
year, noting that they could lead to answers about whether a retrovirus
causes the disease as well as to effective treatments.
So that is all very well, in terms of findings, reporting, and
possibilities.......... but then you have not reckoned with such
a one as Dr. Mark Borigini, an English MD specializing on
rheumatism, also with a column in, of all places for one thus
qualified, Psychology Today, as follows - and let me
immediately say that I remember him as the guy who was pleased to
describe people with ME as "Jihadi terrorists", apparently because
his medical type disagrees with some e-mails he got, and is a master of
misrepresentation, spin and astroturf, for it starts thus (and note the
o so subtle subtitle Borgini saw fit to use):
- The spinmeisters are spinning, the scientific community
remains unsatisfied, and the chronic fatigue syndrome patient
continues on the roller coaster ride provided by research
demonstrating replicating retroviruses that is not always
replicated in different research labs.
You see: All these people mentioned and quoted above, whether
journalists or scientists, are utter idiots compared to the Master of
"Jihadi Terrorism" that goes by the name of dr. Mark Borigini, who
therefore feels free to give his own combination of wishful thinking,
prejudice and careful misrepresentation instead.
At the end, the learned doctor does a Glenn Beck, consisting of an
insinuative redefinition followed by a piece of sanctimonious
sycophancy meant to pooh-pooh anything related to XMRV:
O, and Dr. Mark Borigini's subtitle "I
want my MLV" is a little personal
"humorous" SM-exercise of his that he probably copied from the CDC: See
Hillary Johnson's reproduction of the same approach, already abused in
the previous century:
"Dear Sirs...I am sick...". That is satire by
well-paid American "medical scientists" of folks like me, anno 1986.
Personally, I am sick of and because of medical
Studies in MEdical Sadism - 0 -
for it seems to me that I have been having pain now for over two decades
because e.g. this self-proclaimed medical specialist in helping people
with pain, dr. Mark Borogini, in whose opinion it seems I must be "a
jihadi terrorist", since I have ME and write about it, if not to an
incompetent or liar like he must be, has not done his job
properly, neither in medical science nor in medical
There is - you may not be amazed to read - much more to be found on
the internet in this connection and indeed I did read some of it,
but I suppose this is the general drift, possibly best caught by Amy
Dockser Marcus' title: New
Hope in Fatigue Fight - for thus is is, including the fact
stressed by Alter and Lo as well that more works needs to be done
and is happening and coming.
Indeed, here is one more finding and reporting, namely of a study
by professor De Meirleir, for which I use the English Google-produced
translation I found on Phoenix Rising, with the link supplied to the
Belgian original, for readers of Dutch, with the qualification that I
have seen and read the Dutch article, but that its server was down
when I last tried. Anyway, this is it in English:
VUB researchers find new virus in patients with chronic fatigue
Researchers at the Free University of Brussels (VUB) and the Belgian
biotech company Red Laboratories have succeeded in distinguishing a new
retrovirus in patients with chronic fatigue syndrome (CFS / ME
patients). Thus they confirm recent U.S. findings on this issue.
VUB-Press Service reports that Tuesday.
U.S. researchers at the University of Nevada in October 2009 found that
the majority of CFS / ME patients are carriers of a new retrovirus
XMRV. These findings have also been confirmed by the Harvard Medical
School and the National Institutes of Health (NIH). New to the study
led by Professor De Meirleir VUB is that the virus was found in CFS /
ME patients from across Europe. Moreover, the immunological signature,
a kind of footprint in the immune system, is similar to that of
symptomatic HIV patients. "It seems that for the roughly 17 million CFS
/ ME patients world-wide end to a long ordeal surrounding the
recognition of their illness. The development of targeted therapies is
already underway, both in Belgium and abroad" says De Meirleir.
His new findings on 7 September 8 and presented at a workshop of NIH in
Finally, just in case Dr. Mark - Jihadi Terrorist - Borgini may have
succeeded insinuating some:
I quote one passage on testing:
Andrew L. Mason, an associate professor of medicine at the
University of Alberta in Edmonton, Alberta, Canada, says it's time to
act, not point fingers.
There have been several studies showing the presence of this virus
in the blood of people with chronic fatigue syndrome and
prostate cancer, but other studies have not found it.
"We don't know why that is," he says. "It is baffling, and we need
to sort it out rather than ignore it. It's there. Does it cause
disease? We don't know, but it's there and that needs to be
"There is only one way to prove or disprove XMRV's role and that
is to do a proper study with antiviral
drugs," Mason says. In an editorial accompanying the new study,
he suggests studies that compare antiviral drugs with placebo or
dummy pulls on viral load and CFS symptoms in affected individuals
are now feasible.
Such drugs are used to treat HIV, the virus that causes AIDS, and
can cause several side effects.
"The drugs are well-tolerated, and we would be justified ethically
to see if they work," he tells WebMD. He likens this situation to the
now Nobel-prize-winning research that first tested antibiotics to
determine if some
ulcers are caused by the bacterium H. pylori.
"We didn't know that H. pylori was causative until they
tried using medicine and it worked," says Donnica Moore, MD, a
women's health expert and president of Sapphire Women's Health Group
in Far Hills. N.J.
The issue is a personal one for Moore, whose son was diagnosed
with CFS about six years ago.
P.S. In brief: There is still much to find
out, but a beginning of a very interesting path and set of possible
explanations has been found and confirmed, and while the opposition, as
witnessed by the execrable Borgini above, is far from gone, the evidence
is just to good, and indeed the dangers involved just to large, not to be
researched further and cleared up, indeed possibly quite soon in some
There is one somewhat interesting odd fact as I write this in the
evening of August 24:
While there have been quite a few press-reports in the US and in other
countries, the press in England and in The Netherlands, and possibly in
Germany too, is mostly silent so far.
I do not know the explanation, but one possibility is that the English
and Dutch and possibly German leading pseudoscientific psychoshrinks of
the Wessely-school have been busy trying to keep the news out of the
Whether this is so, I don't know. What I do know is (1) investigative
journalism is almost wholly dead, both in England and in Holland,
incidentally not for reasons having to do with ME, but with the combined
onslaught of the internet on the papers (and their incomes derived for a
century from advertisements), and the rise of
postmodernism and the general dumbing down of
education in Western Europe since decades and (2) messrs.
Wessely and Van
der Meer, never really concerned or bothered with doing real science,
have successfully cultivated editors, journalists and
media-persons and have had the ears, if perhaps not the hearts and minds,
of quite a few journalists available to their astroturf.
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. I
don't know yet, but if there is no Nederlog, now you know the reason.