Wednesday, May 26, 2010

Overview from CFS Patient Advocate on the recent Invest in ME Conference

 
Below is an overview from CFS Patient Advocate on the recent Invest in
ME Conference which took place in London, UK.

http://cfspatientadvocate.blogspot.com/

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Tuesday, May 25, 2010
London Conference May 24, 2010

http://cfspatientadvocate.blogspot.com/2010/05/london-conference-may-24-2010.html


Here is my report from the Invest in ME conference in London that took
place on May 24, 2010. This report is my attempt to communicate to
others - to those patients who could not attend (including my
daughter) - what I saw and heard. I am aware that this report reflects
my own bias.

This is the fourth year that I have attended the Invest in ME
conference in London. The guiding lights of this effort are Richard
and Pia Simpson. These dedicated individuals work tirelessly to make
this conference happen. Their hospitable and generous presence is felt
everywhere, and I cannot imagine a CFS/ME speaker having a better
platform from which to make a presentation.

The one-day conference takes place in a beautiful lecture hall at the
very edge of St. James Park. During breaks you can go out and sit in
the sun on a park bench and see the world go by. The hall seats 230
people. Each year this conference grows in number, and this year the
hall was packed – mostly with patients and patient advocates. Soon the
sponsors will have to find a bigger venue. Each year the appropriate
government and public health officials are invited to attend and to
make a contribution - and each year no one shows up. At least they
show a great consistency. (In the UK one is startled by what the NHS
does not provide for the citizens of this country. The health care for
CFS/ME is Kafkaesque and anyone interested in government run health
care should take a good look at this situation and disabuse themselves
of their utopian dreams. The situation is pathetic and very sad for
the patients, who are desperate.)

Invest in ME invites the top medical or research practitioners to
present at this conference. Surprisingly (or not surprisingly) the
participants are increasingly American researchers and doctors. The
all-day conference delivers a disciplined and hard-hitting set of
lectures, one after another. It is an exhausting but rewarding day and
the audience member has a front row seat to the most current issues in
CFS/ME, warts and all. In the past I have seen Garth Nicholson, Sarah
Myhill, John Chia, Kenny de Meirleir, A. Martin Lerner, Basant Puri
and Jonathan Kerr. The lectures are usually 45 minutes long and the
day is broken into several sections with two tea breaks and a lunch
break. A fine lunch is served. During the breaks conversation is
encouraged and it is possible to buttonhole the speakers.

The concept behind this conference is healthier and more focused than
the semi-annual meetings in the US. These US conferences, of which I
have attended two, are four days long and have a great amount of
"filler" or academic cannon fodder. The sponsors try to please
everyone and in the process please no one. The viewer gets none of
this feeling at the Invest in ME conference.

Mondays lectures started early with Dr. Leonard Jason. He is a good
choice to get the day going. I have heard Dr. Jason speak a number of
times and each time he is better. He has been previously well received
at his conference and for good reason. He presents precise and
well-organized statistical information attempting to define the
parameters of CFS/ME in a legible and understandable fashion. Given
the history of CFS/ME and its various confusions, this is not an easy
task. Along the way, he delves into subject matter that is quite
surrealistic, often bizarre and funny. Dr. Leonard works is a
disciplined way, mostly on his own, out of DePaul University in
Chicago. He strives towards clarity regarding the language and
definitions of CFS, and he is appreciated and respected by a growing
number of people.

Dr. Jason's inclinations and work can be gleaned from the internet.
This is true of all the speakers. My intention in writing this report
is less to detail the contents of the lectures and more to give a
feeling about the conference from my perspective. Things are changing
with rapid dissemination of information worldwide and personally, I
did not expect to learn a whole bunch of useful items that I did not
already know. There were a few tidbits that I will include in this
report.

The second presentation was a solid academic talk by Nora Chapman from
the University of Nebraska. I imagine that the science of this talk
passed over the head of most of the audience, including mine. Chapman
and her associates have demonstrated that selection of defective
enterovirus in heart and other tissues leads to persistent infections
despite active antiviral immune responses. Paired with this lecture
was Dr. John Chia, who also works with enteroviruses. Dr. Chia was
back for the third straight year and he gave updated research
information, including case studies, enumerating his belief that
enteroviruses are a major causes in CFS/ME. Dr. Chia strikes a nice
balance with his research ideas and his treatment possibilities. In
this case, he spoke at length about Equilibrant (Oxymatrine) and its
effectiveness in about half of his CFS patients. As he likes to point
out, this is a quite a high percentage of success for any CFS
protocol. Dr. Chia lectures can be seen online or on DVDs. Cort
Johnson has several good interviews of and discussions with Dr. Chia
on his site. Dr. Chia collaborates with his son Andrew on research.
This year Andrew had to attend classes at the U of Southern California
where he is in pharmaceutical school. Among other things he wants to
learn and lobby for the development of anti-enteroviral drugs. I was
hoping that Andrew could meet my son Peter, who is about his age.
Peter was attending the conference and doing a little filming. Maybe
next year, the two can meet.

After the morning break, Cheney gave a lecture on oxygen toxicity and
diastolic dysfunction. Cheney's big problem was squeezing his usual
three-hour lecture into 45 minutes - and I can say that he did not do
a good job of this. Twenty minutes into the lecture I turned to my son
Peter and said that Dr. Cheney was proceeding as if he had three hours
- and that he had better speed it up. He didn't and the consequence
was that Dr. Cheney had to just stopped in the middle of his lecture.
However, it was not a big problem as any 45-minute slice of Dr. Cheney
is worth its weight in gold, and this day was no exception. Dr. Cheney
is a quite fantastic fellow. This was his first appearance at this UK
conference. Most of what he presented can be culled from his research
website or from his recent DVD from April 2009. Dr. Cheney gives
credence to the new discovery of a retrovirus. After all, Dr. Cheney
has long believed that a retrovirus could be at the center of this
disorder. In his lecture, Dr. Cheney indicated that 38 of 47
consecutive patients in his practice were XMRV positive by culture
testing at VIP lab.

Jonathan Kerr gave one of his exquisite low-key barely audible
presentations. He plows along in his genetic work, this time speaking
on his continuing work to subtype CFS by SNPs. In a nice bit of
symmetry his slides matched his inaudibility - and they were
completely washed out and unviewable. What was with this? I guess
under current circumstances he was embarrassed to be at this
conference and wished he were somewhere else. Dr. Kerr used to do very
important work. Each year he seems to have less funding. In the past,
at the end of his lecture, he would show his band of researchers,
shrinking magnificently each year. This time I noticed that he didn't
show the usual picture of his colleagues - so I guess he doesn't have
any. This sophisticated research is fueled by cash and it seems to be
drying up. Certainly the UK government gives him nothing. One gets the
feeling that the research of this lonely aspirant languishes. He was
going to fetch up with the WPI but I wonder what happened to that?
Long ago it was my suggestion that Dr. Kerr move to the US where he
could make a real contribution to CFS/ME research instead of stalling
out. Surely he knows that there are a lot of Brits living in the US
and if he moved to Minneapolis I would take him to Brit's Tavern for a
Speckled Hen.

Nancy Klimas spoke on various immune markers. I prefer Kerr's
quietness or Peterson's dour seriousness to Klimas' happy optimism.
She seems to be a " real professional" – full of self-importance, weak
research and false promises. I would like to see something substantial
come from her lab but I don't think I will ever see it and now she has
put her emphasis in running her own clinic. I think the CFS/ME
patients need more hard science research, not necessarily more
clinics. All this makes one suspicious of this person's intention.

Towards the end of the day, things heated up a bit. Brigitte Huber
gave a talk on her HERV-K18 research and then added a coda on XMRV.
She did an unexpected and gratuitous job of sandbagging Judy Mikovits,
who was the next speaker. Huber methodically went through her recent
XMRV "study", explaining in her officious voice that her PCR test was
the "assay of choice" and "very sensitive". She tested 228 samples,
112 from Susan Levine, 105 from Taylor in Chicago, and 11 from the
HHV6 foundation. Then she put up a slide with red letters that said,
"All samples were negative for XMRV integrase".

Huber said, "We cannot see in our patients XMRV like in the Science
article". In a further confounding maneuver she hinted or charged that
the WPI study was "contaminated". This charge needs to be challenged,
as it is a lie. As she was leaving the lectern Huber said in a
wonderfully disingenuous voice (to no one special, but I suppose it
was directed towards Judy Mikovits), "Sorry". It was a revealing and
weasily moment.

To me it is becoming obvious that certain people, especially doctors
who have been treating patients unsuccessfully for years with
half-baked treatments, or researchers who are connected to the
academic research money tit, are trying to sink Mikovits and the WPI.
This is not science; this is venality. This negative reaction has
little to do with whether XMRV has any validity or not. That is a
separate issue and there are two sides to the argument; and it needs
to be fought out according to established scientific methods. I think
that certain critics sense, perhaps correctly, that soon they might be
out of a job.

The day before the conference, there was a brain storming session with
the various participants at this conference – Cheney, Chia, Huber,
Jason, Whittemore, Chapman. It is a great idea and
discussion/disagreement (sometimes fierce) is often a necessary and
useful result of such exchanges. In this afternoon session, Huber
launched an attack on Mikovits. Mikovits did her usual job of
defending herself. Huber left the group early (maybe to go shopping?).
As she left Huber promised that she would not create a controversy by
revealing her study results the next day.

Overnight Huber changed her mind, honest soul that she is, and made
her awkward revelation. It was all quite unseemly, and did not fit the
tone and tenor of this conference - which is heavily ladened with sick
patients, hanging on by a thread. They make a great sacrifice to get
to this conference, but not to hear this kind of shit. After all this
is really not a scientific conference, and this nice bit of spite was
entirely out of place.

When was the last time that Huber gave one iota of thought about CFS
patients? I can tell you exactly – it was… Never!

I watched this with fascination, realizing that Huber in her
righteousness had put her head on a block and asked to have her face
kicked in. It was a great setup, a "once in a lifetime situation", and
Mikovits came through big-time, doing what she needed to do. She
remained calm (inside she must have been boiling) and delivered a
splendid lecture (the best that I have seen her do) and demolishing
Huber. The effect was that Huber shrank down to the size of a pea. I
had talked to Mikovits the day before about Huber and advised her in
general to disregard her critics and just roll over this woman (not
that Mikovits spends one moment listening to me). Some critics need to
be rolled and this was just what happened. At the end of her lecture,
Mikovits got a loud and sustained applause showing deeply felt
appreciation.

The moderator of the conference once again was Malcolm Hooper, who
represents the best of the UK ME doctors and researchers. Dr. Hooper
is known for the Hooper files, which are included on the conference
DVD to be released in several weeks. Dr. Hooper has an easygoing
manner, moves things long nicely, keeps the conversation focused and
gives helpful commentary when necessary. This man obviously has
multiple gifts.

Invest in ME's primary idea (I believe) in creating this conference
was to bring the most recent research and treatment information to the
UK, a tidal backwater in regards to recognition of the seriousness of
this disease (not that the US is much better). Beyond this they want
to facilitate these personalities to sit down and talk together and to
share their ideas. In general CFS doctors and researchers are a lonely
band of folks, comfortable and happy with their isolation. In other
words their social skills are limited, especially in relating to each
other. In the last few years, things have gotten much better in this
regard, mainly due to this conference and a few other "retreats" of
CFS/ME notables, supported by private donors.

The high-mindedness of these talks always disintegrates at the end of
the day with a plenary session where patients and patient advocates
plead for treatment advice – treatment readily available in the US and
denied the patients in the UK. (Whether these treatments work or not
is another conversation.)

The question is why, with so much of this information readily
available, one would bother to attend this conference. It is a good
question. My answer is that this conference allows me to get a sense
of the direction of things, the "zeitgeist" of this field - and also
to talk directly to the participants in the more informal parts of the
conference. Unexpected things happen and one picks up bit of
information or has other items reinforced. For instance, I got to hear
Dr. Chia talk for a few hours at dinner. What a pleasure this was! I
got to watch him "interrogate" a patient advocate about their patient.
Dr. Chia seeks out particular symptoms and circumstances that occur at
the onset of the illness. It is a bit like 19th century medicine - but
CFS/Me is a 19th century disease. And this form of questioning yields
answers for Dr. Chia.

I have been inclined towards Dr. Chia since I first heard him speak.
He has a forthright, unadorned quality that is makes you pay
attention. Dr. Chia has worked in the trenches for twenty or more
years, learning about this illness the hard way, and developing his
own resources to maintain and increase his research. Dr. Chia is
definitely onto something "specific" - in a field where so much is
elusive and speculative. If I were going to give a newcomer to this
field a bit of advice (and I do not have a whole lot to give) I would
recommend learning about Dr. Chia, his testing and his treatment. It
is a good bet, and perhaps you will get lucky.

At another point, I got to hear Dr. Cheney give an informal
mini-lecture on parts of his protocol: artusenate, minocycline,
wormwood, and cell signaling factors. In regards to this last item Dr.
Cheney related his enthusiasm about a new gel that he has made from
afterbirth material. Citing studies on hamsters, Cheney described a
process where non-stem cell material is extracted from stem cells and
injected back into the hamsters, curing them as if it were stem cells.
Dr. Cheney has made a similar gel from human afterbirth that gets a
very strong reaction on his Echo machine, much stronger than any
existing CSF. He is very excited about this.

I observed several individuals from the WPI doing their presentations
and establishing connections. I can assure you that the announcement
of the demise of the WPI is premature. They are moving faster than
ever. The WPI is on a trajectory that will leave its critics in the
dust. While others quibble over this and that, and lay traps to
distract them, the WPI are putting all that aside and focusing on the
task at hand. More specific and accurate testing is close at hand, as
is means to track improvement in patient's immune status, as well as
clinical trials using various existing anti-retroviral drugs. Peptide
T is still in the picture. (Another non-WPI source indicates that
GCMAF might be a player.) (Time will tell in all this and the
nay-sayers have put great effort into trying to cut off the funding
and grants for the WPI. In this they have been somewhat successful,
leaving it to the rest of us to do what we can to increase funding for
this important scientific research.)

The WPI is in the process of projecting and clarifying their mission
and of making collaborative connections with the international
community in a manner that has never been seen before in this disease.

Needless to say, this was a great conference.

Christopher Cairns

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