The 2009 Invest in ME Conference Report by Chris
I am the Patient Advocate for my thirty-five year old daughter. I travel to
conferences to observe what is going on in the field. This is not a
scientific report. It is a record of my impressions, as limited as they may
be. They are presented to give some impression of this conference to those
who were not able to attend, particularly patients and patient advocates. I
apologize ahead of time for my own biases and editorializing. A DVD will be
released of the conference in July and can be purchase for 12 pounds.
This was the third consecutive year that I have attended this conference. It
takes place in a beautiful old building on the southeast corner of Green
Park. In many ways I could just reprint my report from last year. One
positive note was that there were more participants at the conference. Each
year it has gotten larger, and this year it was sold out. The government
ministers, who were supposed to attend, were “tied up” and couldn’t make it.
The conference resolved to send them a DVD of the lectures, urging them to
consider these research and treatment efforts for CFS/ME.
The attendees seemed to be mostly from the UK. Not very many Americans
attend this conference. I don’t know why. Instead there were Norwegians,
Danish, Swedes and Australians. There were a good number of patients and
some in wheel chairs.
As with last year, American presenters dominated the conference. These
included Garth Nicholson, Dan Peterson, Annette Whittemore, John Chia, and
Judy Mikovits. The Belgium doctor/researcher Kenny de Meirleir gave a talk.
Basant Puri and Jonathan Kerr gave fine lectures. There were a few British
and Australian doctors in attendance, but many were missing.
The subject of this year’s conference was severe ME – but many other
subjects were introduced.
Professor Brostoff chaired the conference. I had never heard of him and, by
the end of the day, I wished that it had stayed that way. I missed the
balanced, coordinated discussion and summaries of last year’s leader,
Malcolm Hooper.
Annette Whittemore gave the keynote speech. She spoke of the new
Neuro-Immune Institute and the immediate goals. While the Institute building
will not be finished until September 2010, the scientists, Mikovits and
Vincent Lombardi, and are working feverishly. Annette Whittemore also gave
details of the struggle with her daughter’s illness.
Annette Whittemore’s efforts are very noble and far-reaching. I don’t
suppose the ME folks in the UK have ever seen anyone like her. She mentioned
that Senator Harry Reid was the greatest supporter of CFS in the U.S.
Congress, and that that Senator Reid has made great efforts to bring the
Neuro-Immune Institute to Reno. Previous of this, I had never had a very
positive picture of Senator Reid – but now that has changed.
Garth Nicholson gave a lecture on mycoplasma infections in immune
compromised diseases, particularly Gulf War Syndrome. He spoke of the
connections of CFS/ME in the families of these sick veterans. Dr. Nicholson
of course was dragged into this research after his daughter got sick after
the first Gulf War. Much of the information presented scan be garnered from
the internet and various studies that Dr. Nicholson has presented over the
years. It was very good opening lecture and laid the groundwork for
subsequent presentations and discussions.
A Norwegian MS doctor named Harald Nyland spoke of an outbreak of an
epidemic of giardia in Bergen, Norway and its connection to CFS. Flashes of
humor punctuated his talk.
The soft-spoken Jonathan Kerr gave an update on his search for subsets and
markers for CFS. About five years ago Dr Kerr announced that it would be a
year until a marker and two years for a treatment (or the other way around).
At that time he was thinking of using existing drugs like Enteracept. That
did not work out when he was denied funding. Many people speak very highly
of Dr. Kerr’s work and of the strides that he has made. These days he
announces no time line and soldiers along, making slow but steady progress.
He is involved in important collaboration with the Whittemore-Peterson
Neuro-Immune Institute.
Kenny de Meirleir gave a precise lecture on his experience with very severe
ME patients in Norway. He unexpectedly began his talk with a very short film
documenting a young Norwegian woman’s descent into a near death isolation.
He also had the sister of another very severe ME patient tell briefly of her
sister. This young woman has lived in the same house with her sister for
four years without every seeing her. Her sister cannot tolerate any stimuli.
It was a powerful moment.
Often the sickest patients, the housebound and bed bound, are forgotten –
even at these conferences, where most participants can move about. The ones
who need the most help are not represented – although there were a number of
patient advocates in the audience. Through this film, Dr. de Meirleir
brought the news home and, despite the shocking unpleasantness of the
reality,
Dr. de Meirleir visited, observed and tested 22 very severely ill CFS
patients in Norway. In the US, you can’t even get a doctor to bother to make
a home visit. Dr. de Meirleir does not fall into such a category and he is
looking for answers. He believes the answer resides in the sickest of
patients. As a result of his investigations in Norway Dr. de Meirleir has
come up with a simple “marker” test for severe CFS. This is a
self-administered home urine test that measures hydrogen sulfide. Protea
Biopharma makes the test.
De Meirleir also presented his concepts of the connection of CFS/ME with a
specific form of intestinal dysbiosis and presented his manner of testing
and treating it. He does not have a particularly treatment for the very
severe form of ME, which he characterized as “difficult”.
At the end of his talk, a variety of pettinesses broke out. I suppose there
was some lingering irritation over his “press” conference of the day before.
De Meirleir said that he has an independent group examining his protocol and
its success rate. There were some expressed differences about the need for a
control group. He said that he would do that.
Dan Peterson gave perhaps the best overview of current antiviral work done
at his clinic. He presented the concept of translational medicine, a new
paradigm for studying and treating illness. He covered a lot of ground and
spoke of his use of Vistide. This guy is terrific.
Dr. John Chia gave another one of his fine presentations. Dr. Chia has
identified a serious subset of CFS, which is identified by real markers
stains of enteroviruses in the stomach. (Of course as soon as a subset is
identified and markers established, this no longer is CFS in the mind of the
establishment and they use this to further substantiate that CFS does not
exist.) Among other things his treatment is Oxymatrine, a Chinese medicinal
compound. Oxymatrine brings some improvement in about half of the patients
that he treats. His son Andrew, who works closely with him, accompanied Dr.
Chia. Andrew is going to Pharmaceutical school with the specific intention
on working on pharmacological treatments for enteroviruses. Dr. John Chia
was dragged into the field of CFS research and treatment by the enteroviral
illness of his son. Andrew is mostly recovered and also dedicated to the
field. Dr. Chia is a precise diagnostician, who presents a very clear avenue
for some people to explore and possibly get well. Surprisingly very few
people are paying attention to this, although this conference has now
presented him twice in two years – so they must have some sense of the
peculiar diagnostics and success that he has reached with his approach to
enteroviruses involvement.
Dr. Judy Mikovits, who astonished so many folks at this conference last
year, was back for another lecture. She made her usual complex and far
reaching talk, most of which passed over my head. (I should have studied
biochemistry.) Her work at the Institute involves sub-setting CFS through
gene array chips and cytokine testing. The Institute is moving very fast and
I get a sense that specific information is going to emerge here sooner than
later. Certainly talking to Annette Whittemore and hearing Mikovits and
Peterson makes one sense something is afoot, although they are smart enough
not to say anything. During the question period Dr. Mikovits was asked if
they had been working on a specific virus involved in CFS. She answered:
yes, and then she followed up that there is a novel virus that has never
been associated with this disease and that they had submitted their research
for publication. I could not hear the particular publication although I was
listening hard.
This particular one-day UK conference has a distinctly different feeling
that the longer and broader conferences that I have attended in the US.
However the one-day format is particularly hard-hitting and intense. The
lectures ranged from Basant Puri’s report on brain scans, which was quite
detailed and scientific, to Norwegian Barbara Baumgarten’s very practical
presentation of efforts to develop ME clinics at hospitals in Norway.
Needless to say these are quite different areas of consideration, and it
becomes almost incomprehensible to the listener trying to combine these
various threads.
However, certain continuity was given by the lectures of de Meirleir, Kerr,
Mikovits, Peterson, Nicholson, and Chia, which are tied together by several
threads. These include the search for diagnostic markers, the treatment of
gut dysbiosis through diet and probiotics, and the search for complicating
pathogens, and their treatment.
Once again I got the sense that the UK has there own specific and serious
problems in regards to this complex disease. Many of the participants
expressed dismay that the ideas and treatments presented to this conference
are unavailable to them under the NIH. (Some of the attendees seemed to be
hearing this information in these lectures for the first time.) For instance
the NIH will not pay for extensive thyroid testing, or for Acumens’
mitochondrial tests or any specialized experimental tests for this disease.
Much like the CDC, the government in the UK does not believe that this
disease exists or, if they do, they have no idea what it is, and they don’t
seem to want to know. Private doctors like Myhill are available, but the
populace is not conditioned to seek out such treatment, which is not
reimbursed by the national insurance. The questions from the audience
indicate that many patients in the UK live in a bubble, as if the internet
does not exist. So much for the managed health system of the UK.
A final question of the day came from a man who asked the panel of speakers
for their assessment of when a marker and further treatments would be
available. The questioner expressed his feeling that the speakers had been
upbeat, but that he, the questioner, felt that he was lacking specifics
about diagnostics and treatment. Somehow he seemed disappointed at the day’s
events. A few of the speakers gave vague answers – but no one would give the
questioner what he wanted. There was a long silence. Dr. Chia indicated that
the question was a bit more complicated; he said that diagnostics for
various subtypes were present now and that the problem was getting these
accepted. For instance the process that he uses, staining, is not new, nor
is it experimental. However, he has difficultly getting anyone to pay
attention to or care about his results. Meanwhile he goes forward searching
for treatments, and lobbying Pharmaceuticals for drug development for
enteroviruses. This fellow’s question ended this conference on a bit of a
down note. It was a shame, as it was a day of fascinating talks.
Chris