A Review of the May, 2008 Invest in ME, London ME/CFS Conference by Chris
I am a patient advocate for my 34-year-old daughter. I attend CFS conferences and try to learn about this disease. I am not a scientist. Consequently, much of what I hear, I do not understand. However, after a number of years now, I do have a feel and a respect for the complexities of this disease. For those interested, here are my observations of the one-day ME/CFS conference in London May 19, 2008. Having written these notes for my own use, I have no further comment to make on them. More knowledgeable and useful reports will hopefully appear, and there will be a DVD of the presentations at this conference.
The conference was chaired by Dr. Malcolm Hooper, a revered UK ME/CFS doctor.
Dr. Leonard Jason. The conference began with a very excellent hour-long lecture by Dr. Leonard Jason from DePaul University in Chicago. He is a psychologist who studies CFS statistics, demographics and terminology. He spoke at the International conference in Ft. Lauderdale and gave the same lecture addressing the importance of precisely defining the CFS population. He also elaborated the various shortcomings of not having done this yet. He spoke of the various weaknesses of the 1994 Fukada definition (a committee decision) - and of the 2005 Canadian definition, which is slightly better. His lecture was both fascinating and depressing, as there are great pressures from different directions to either expand the definition or contract it. As usual in such matters, the bottom line is money.
Dr. Jason makes huge efforts to sort out the patient population. Part of this involves developing apt questions to tease out a meaningful response. For instance a particular question or set of questions will try to measure "the severity of self-reproach" in various overlapping patient populations. If you ask a patient with depression, "If you were well tomorrow, what would you do?" you will not get much of an answer. If you ask this of a CFS patient, you immediately get a long list of things that they would do. The response in the room indicated that most attendees understood exactly what he was saying.
As an example Dr. Jason spoke of the recent CDC definition, which
instantaneously expands the former estimated CFS patient population of 400,000
to 4 million. It is a nice trick and many people are happy with this - as it
supposedly makes the disease
more [revalent and real; and this will supposedly draw more researcher money.
Dr.
Jason aptly pointed out the flip side of this where under the new definition a
"CFS
patient" need not have "post-exertional fatigue" or "fatigue of six months
duration" and other
hallmarks of the disease. The reality is that these new parameters host a great
number of
patients suffering from other disease states, including depression. After
hearing Dr.
Jason speak,one would have to worry about the CDC. All this is a little
desultory and
depressing, as Dr. Jason soldiers on with very impressive arguments to define
CFS more accurately
and tightly, which will eventually lead to more identifiable subtypes, the
subject
of this conference.
Dr. Jonathan Kerr -
Next up Jonathan Kerr gave his usual fine low-key and precise lecture. He is
usually allotted a half-hour, which I suppose is all that he needs to elaborate
his
work. He presented his gene expression work in his soft-spoken voice, and there
was
nothing new here. He and his group have identified seven subtypes, each which
has a
potential treatment with existing drugs. They are working on a marker (or
markers) in
order to identify subtypes. No timeline for a marker, or makers, was given.
Presumably
and eventually, trials with specific existing drugs with subtypes could be done.
Kerr did reveal that his application for a trial of Enteracept on a subgroup was
turned down by
the government, and that this trial is not going to happen. The most poignant
moment
came at the end of his lecture where he put up a picture of his "group", the
same
photo he has shown in the past - six researchers. This group has now dwindled to
three - as
his funding has been cut, and he gets no funding from the UK government health
ministries. Fortunately he is working in collaboration with a group of
Americans, who have a
deeper appreciation of his work.
Dr. Martin Lerner made a longer presentation on his work sponsored by the A.
Martin Lerner Foundation. This was the first time, I believe, that Dr. Lerner
has
spoken in the UK; and there was the sense that few members of the audience had a
clear idea who he
was or what he does. Dr. Lerner presented a lecture similar to the one that can
be seen
on the Internet, with the significant addition of recent long-term data. Dr.
Lerner is
probably the most experienced doctor in using anti-virals for subsets of CFS in
the world.
Highlights of the lecture are expressed here. Dr. Lerner has compiled six years
of data of 180
patients, including 5000 visits and 45,000 pieces of information.
Dr Lerner has separated the 180 patients into two groups with similar
demographics:Group A (138 patients) - CFS Herpes virus illness (EBV, HCMV, and
HHV6, in some
combination) with no coinfections, and Group B, CFS Herpes virus illness (EBV,
HCMV,HHV6 in some combination), with co-infections (Lyme, Babesia, etc). He
presented
information only on group A.
Lerner uses the Fukada definition. Patients in
Group A were identified through positive IgM recombinant p18 monoclonal VCA,
abnormal Holter
monitor assessment and abnormal cardiac wall assessment. More specific details
of this screening are publicly available. Specific long-term pharmacokinetic
therapy,
(Valacyclovir,Valgancyclovir) was administered to each patient. Using his own
Energy Index
(EI) point score (1-10), Lerner determined the mean score for 138 patients at
baseline was
4.5. The mean final EI point score was 6.0. These data indicate that specific
long-term
pharmacokinetic administration of Valacyclovir/Valgancyclovir provides long-term
significant benefit to Group A patients. There was no toxicity to this long-term
antiviral therapy. In answer to a question, Dr. Lerner indicated that there were
remarkable improvements to heart irregularities.
Dr. Lerner strongly believes that viral subset CFS treatment options exist right
now, today. His foundation is working on a DVD training film for physicians.
While Dr.
Lerner holds various patents on his treatment protocols, with several more
pending, he gives
every indication of being a dedicated practitioner and researcher who wants to
get his
information on antiviral treatment to a wider audience.
Dr John Chia followed, as he presented his ideas on the causal relationship of
enteroviruses and CFS, including his treatment with alpa-interferon and ribavin.
This man is a
very serious doctor and with his son has made great steps towards identifying a
CFS subset.
As with Dr. Lerner, it seemed that few in the UK knew of Dr. Chia and his
research.
Information on his investigations is available on the Internet.
Dr. Judy Mikovits -
The last major lecture was an incredibly high-powered presentation by the
American researcher, Dr. Judy Mikovits. She is the research director of the new
Peterson
Whitmore Center of Neuro-Immune disease in Reno, NV. In a lecture of which I
understood
next to nothing, she gave every indication that this institute has the funding,
the
drive and the independence to reveal some important elements of this disease.
She also
indicated a no-nonsense willingness to cooperate with others world-side in this
struggle. I
have seen many scientists make presentations, and this gal was amazing. With
this
presentation,along with the others, there was a clear picture that the Americans
were back in
the UK doing what they do best.
Additional lectures were given by Dr. Julia Newton, who gave a very clear and useful talk on Autonomic Dysfunction, a distinct subgroup in CFS, by Dr. Irving Spurr, a UK doc with great practical experience, who presented his ideas for treatment of CFS, and by Dr. Jean Munro, who gave case histories of CFS treatment by her group in the UK.
The Panel Discussion: The final set of questions to the entire panel (including the addition of Dr.
Tae Park from S. Korea, who had a poster paper on his
IVIG treatment), gave some coherence to the topic of the day. At times, it was
difficult to believe that these different speakers
- with their diverse angles and experiences working with ME/CFS - were actually
talking about
the same disease.
A nice bit of drama was added when Dr. Spurr stated that there was
no evidence that anti-virals were effective. At this moment, Dr. Lerner looked a
little dispirited. However, Dr. Lerner quickly recovered and reemphasized the
positive
results of his work; and various others joined him in expressing the belief that
there are
treatments available at present for distinctive subsets, and that more
treatments with
existing drugs will come online as subsets are identified.
Additional thoughts:
The important point of this conference to me is that it seems to indicate a
turning point in thinking about this disease or set of diseases. People get
together in this
conference room and hallways and share ideas, and you can sense things are
happening. The days
are past of just dosing a drug on an experimental basis and seeing what it will
do.
Several things are happening at the same time. The mechanisms of certain subsets
of CFS are being better understood, an awareness of the necessity of tighter
definitions of CFS is being expressed, and the diagnostic tools are becoming
better.
In watching Dr. Lerner operate, it is difficult to determine whether he is
primarily a practicing physician or a researcher. He seems to be both, and he
has the
curious habit of not tooting his own horn, at least not in public. Dr. Lerner is
a quite
fantastic fellow. He indicated that people at the A. Martin Lerner Foundation
(privately funded) has
diligently assembled this data based on retrospective and current information of
180 of his
own patients. I think Dr. Lerner assembled this data to convince others of what
he
already knows: with the correct diagnostic workup, judiciously and professional
administered long-term anti-virals make many people (in this subset) feel a
whole lot better.
A Few Other Thoughts: Dr. Lerner spoke of the importance of not exercising until
reaching stage 8 on his EI.
Dr. Lerner's diagnostic slides of EBV in the heart muscle are a little scary,
but he had presented this before. I asked Dr. Lerner about the EBV IgG antibodies as a diagnostic tool and he said
that they were "totally useless". He uses a particular type of IgM antibody test
that is
commercially available. We have to find out where this is done and do it soon.
Also we need
to do a Holter monitor test. The third element of his diagnostic scheme we
cannot easily
do at the moment, but the other two will be important.
Dr. Lerner had another good piece of advice. "Increase what you do when it is
easy."
Chris (09/08)