×‰?4×B!›×‘C’×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://VPxwBqjEVjF6aFEBAG__CAKXKmXafPBPhTop2lU6JrcÎ ‹WÍ`ÍòÍ²×‰	Ú 7cassandra://ed0kftoIRPUMEBkxLLYvXt9_MowDkRMvNAycP9AJO-0ÍY–Í`ÍsÍà×‰	Ú 7cassandra://jGzfPc8W1UFg4qCqVjbwsCRYYvAErJ0Kd5h3sqWXPuoÍ#³Í`ÌÆÍ ×‰	Ú 7cassandra://QvKIslrupD_ds1ApXtgohqjBcIoPXxzRs5_78KBPqKsÍÆ4Í	ìÍ Í]Íð×Xo¶Ëä°j÷ùcp×˜š   ÍüÍ(u×ˆœ×         ×ˆE×Xo¶Ëä°j÷ùcp×‰EÚ #Journal of IiME
Conference Section
×‰	Ú 7cassandra://jGzfPc8W1UFg4qCqVjbwsCRYYvAErJ0Kd5h3sqWXPuoÍ#³Í`ÌÆÍ ×Xo¶Ëä°j÷ùcp×Xo¶Ëä°j÷ùcpÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://VDfPxybxGNFUhVU3C5HOKJ6tFuCM056vgmNQvZdeK5sÎ Í`ÍòÍ²×‰	Ú 7cassandra://XNiEMmDw0pXM9_fOxL2r-bBABidvFp7PYXYerITZiVYÍzãÍ`ÍsÍà×‰	Ú 7cassandra://Kg_QEe04aieQxaRRkQWngJOLmLbLm2azZN61-ZVtZ08Í'‹Í`ÌÆÍ ×‰	Ú 7cassandra://xCpYXDujj_pGJOY3XTlkL4AKEuvzRCtRk31p-IDYuo0ÍhtBÍ Í]Íð×Xo¶Ëä°j÷ùcp×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://F4H__gGCe6P0_8df_AjduvMWEBl02HwNTJIxHUURCwkÎ ?Í` ÍòÍ²×‰	Ú 7cassandra://WHNrIK7XaUr_TH2JwR6HKhRgv9aqZvgpBVFabcqe6isÍÑÍ`ÍsÍà×‰	Ú 7cassandra://jfKo5u5-U5o0yPtgEiB0iwzbt044gNOqv4Ld4I3a9skÍ&­Í`ÌÆÍ ×‰	Ú 7cassandra://Htth017FdWgXp2JZWzXd6vUwQ_OpdGbEUicTirKL8r4Í¢qÍŠÍ Í]Íð×Xo¶Ëä°j÷ùcp	“× ×Xo¶Ëä°j÷ùcp ÌÓÍ·Í¡!9×‰HÚ <http://www.immunesupport.com/library/showarticle.cfm/ID/8232G××ÒÔÔÔrÒïïïÌ× ×Xo¶Ëä°j÷ùcp ÍæÍÔ?!9×‰HÚ <http://www.immunesupport.com/library/showarticle.cfm/ID/8232G××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcpZ ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚpJournal of IiME
Volume 2 Issue 1
www.investinme.org
â€œThe identification of clinically significant subgroups is the
logical next step in furthering ME-CFS research.
There might be multiple pathways leading to the cause
and maintenance of the neurobiologic disregulations
and other symptoms experienced by individuals with MECFS.
Depending
upon the individual and subtype, these may
include unique biological, genetic, neurological, and
socioenvironmental contributions.
Subgrouping is the key to understanding how ME/CFS
begins, how it is maintained, how medical and
psychological variables influence its course, and in the
best case, how it can be prevented, treated, and cured. I
have a paper on this that was published, and it goes into
much more detail. [See "Exploratory subgrouping in CFS:
Infectious, inflammatory, and other":
[http://www.investinme.org/Documents/Journals/Journal%20of%
20IiME%20Vol%201%20Issue%201.pdf ] â€œ
- Live Chat Q&A with Chronic Fatigue Syndrome Research and
Policy Leader Dr. Leonard A. Jason, PhD
http://www.immunesupport.com/library/showarticle.cfm/ID
/8232
Invest in ME (Charity Nr 1114035)
Page 2
×‰	Ú 7cassandra://Kg_QEe04aieQxaRRkQWngJOLmLbLm2azZN61-ZVtZ08Í'‹Í`ÌÆÍ ×Xo¶Ëä°j÷ùcp
×‰EÚ«Journal of IiME
Volume 2 Issue 1
www.investinme.org
From the Chairman of Invest in ME
Previous IiME Conference
Comments
â€œThe conference was so fantastic. I
now feel fully armed to battle in
ignorance about this disease in
Denmark. How can any doctor look
at the facts and doubt it is a
physical diseaseâ€- R
â€œJust wanted to congratulate you
on an excellent conference last
week. It was great to see so many
of the leading researchers into ME
all in one room, and all pulling in
the same direction.â€- C
â€œI enjoyed participating enormously
and think the whole conference
was a great successâ€ - Dr S
â€œIt was great to see so many
familiar faces, both amongst the
audience and the presenters, and
as you rightly say, the information
conveyed was amazing and
exciting. â€œ - D
A very good venue too, I noticed
others remarked on what a
pleasant environment, the term 'the
organisers did us proud' came to
mind â€“ N
Thank you very much for all the
time and effort that the IiME team
generously gives, voluntarily, to the
ME community. This great effort has
ensured that the 2007 Conference
was a great success. It is so
encouraging and reassuring to
know that IiME is standing firm and
campaigning for biomedical
research into M
â€” C
Invest in ME (Charity Nr 1114035)
Welcome to the third Invest in ME
International ME/CFS Conference in
London in May 2008 â€“ an event that
brings together the best of
biomedical research from some of
the most renowned experts on
ME/CFS in the world.
This third IiME conference coincides with publication of the
third version of the Journal of IiME â€“ a unique publication
which combines research, information, news, stories and
other articles relating to myalgic encephalomyelitis (ME/CFS).
In two and half years IiME has now organised three
international biomedical research conferences attracting
some of the foremost and relevant experts on ME/CFS from
around the world and this yearâ€™s conference is no exception.
The blend of biomedical research, objective data and
established experience presented by our distinguished
speakers is testament to the increasing knowledgebase for
ME/CFS.
At the conference you will find citizens of ten nations in
attendance â€“ indicating, we hope, not just the popularity of
the IiME conferences but also the yearning for education and
knowledge of the science regarding this illness.
We welcome Dr Judy Mikovits, Dr Leonard Jason, Dr Martin
Lerner and Dr John Chia from USA and are grateful to them
for taking the time to provide details of their research and
vast experience. Our four guests from America are matched
by four guests from UK representing old and new research
and exhibiting a stunning mix of experience and analysis.
We also welcome the Chief Medical Officer, in the shape of
Dr. Paul Cosford, Regional Director of Public Health for the
East of England and we welcome the Medical Research
Council, represented by Dr Joanna Latimer.
However, two people whom you will not see at the
conference are Mr Alan Johnson and Mrs Ann Keen,
Secretary of State and minister responsible for Health,
respectively. The Department of Health (DoH) exists to
improve the health and wellbeing of people in England â€“ it
states this on its website. Yet both ministers have declined our
offer to speak at the conference and failed to respond to
subsequent offers to attend (despite both having been
originally invited when the initial conference plans were
evolving over eight months ago). (continued on Page 4)
Page 3
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ÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://Qy_UeYvXIDSmfXLPH91WtmDK3xtFh7Npt6XSyIFhKo4Î EÍ`ÍòÍ²×‰	Ú 7cassandra://cvmtQWmseBFFkwx2WNLAzKggnaB37-8aU8wpWnpmijYÍ Í`ÍsÍà×‰	Ú 7cassandra://lfasouVZ_ERJygx7VBpT72oQFnjizQ49JNQ_7x7FjXkÍ+Í`ÌÆÍ ×‰	Ú 7cassandra://UjOdV3a6Qn6ukFXg528_1kwpAwVzd7NpdxnIbdMvA3cÎ l”|Í Í]Íð×Xo¶Ëä°j÷ùcp×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://iBupEzjxsLaWYy_a3WIcosAQ_3aDgGxPNRuTXzjORqEÎ WÍ` ÍòÍ²×‰	Ú 7cassandra://ce0-cxknVkO3tO5hcYhcXSidu_Bf2Bs65cHaZ8pIq-IÍ–rÍ`ÍsÍà×‰	Ú 7cassandra://lGioRNxoAjbY1aHRqApxX8jVYHQ2oA17Wtpt5h3cE2UÍ)iÍ`ÌÆÍ ×‰	Ú 7cassandra://nESQZBSgBQWbD5_51q-hDOCiyzOFZS5-lqM9EUoeZKwÍ™LÍ Í]Íð×Xo¶Ëä°j÷ùcp‘× ×Xo¶Îä°j÷ùcp] ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚòJournal of IiME
Volume 2 Issue 1
www.investinme.org
From the Chairman of Invest in ME (continued)
This continues a chain of refusals by the
department to try to understand the major issues
facing the families of people with ME/CFS by the
lack of a government policy for ME/CFS.
Yet it is a pity that the UK government continues in
failing in its duty of healthcare to its citizens by
ignoring the overwhelming evidence which
dictates that substantial funding of biomedical
research into ME/CFS will likely give results â€“
something recommended in the Gibson Inquiry by
establishing a world-leading research community
to provide the necessary science for creating
treatments and cure for ME/CFS. The conference
would have helped the ministers to see for
themselves the need for this.
Unfortunately, the Health minister has stated that
the Gibson Inquiry has been ignored â€“ replaced by
the National Institute of Clinical Excellence (NICE)
guidelines which have been heavily criticised by
IiME and other support groups as lacking in proper
objective analysis and offering nothing for people
with ME and their families.
Our theme for the conference is Sub Grouping of
and Treatments for ME/CFS and we believe now is
the time to lobby for a more scientific approach
by the governments and healthcare organisations
toward treatment of people with ME/CFS.
one size fits all methodology based on CBT and
GET - is shown not only to be costly or dangerous
but also unnecessary and pointless for people with
ME/CFS.
Any unbiased and objective assessment of
biomedical research data which has been shown
in our past conferences would surely agree that
dedicated funding of biomedical research into
ME/CFS, made within a national strategy for
ME/CFS, would be the most cost-effective, moral
and sensible approach to take in order to allow
hundreds of thousands of patients, carers and
families to reclaim their lives and reduce what is an
enormous cost to the UK economy.
The need for sub grouping of ME/CFS is becoming
more and more accepted and is supported by the
increasing biomedical research. The experience
and data of researchers such as Dr. Jason, Dr
Lerner, Dr Chia, Dr Mikovits, Dr Newton and Dr Kerr,
backed by real life experiences of Dr Spurr and Dr
Monro shows that there is hope for treating and
eventually curing this illness. It is an illness that has
no international barriers.
The unrealistic and unjust approach shown by
NICE with their recent guidelines for ME/CFS â€“ a
Yet there may be signs of change - undoubtedly
caused by the many dedicated researchers and
campaigners who have been continually
providing information and advocacy over the
many years. Attitudes to ME/CFS are changing.
Good quality science is being published in peerreviewed
journals (albeit mostly privately funded
research). The argument that funding of
biomedical research into ME/CFS is denied
because of the lack of good quality research
proposals is now proven beyond doubt to be
specious.
News of recent changes in Scotland has brought
hope that the UK government might change its
position of indifference. Invest in ME pointed out
over a year ago that the best hope for change in
policy toward ME/CFS may come from smaller
countries. We highlighted the work going on in
Norway where the Norwegian minister, prompted
by the tremendous work of the Norwegian ME
Association, has begun changing course.
In Scotland recently new hope comes of the way
ahead for the work to develop an ME good
practice guide for GPs, known colloquially as the
Invest in ME (Charity Nr 1114035)
Page 4
×‰	Ú 7cassandra://lfasouVZ_ERJygx7VBpT72oQFnjizQ49JNQ_7x7FjXkÍ+Í`ÌÆÍ ×Xo¶Ëä°j÷ùcp×‰EÚHJournal of IiME
Volume 2 Issue 1
www.investinme.org
From the Chairman of Invest in ME (continued)
Scottish GP Guideline. It is intended to inform the
meeting of the Cross Party Group on ME/CFS. If this
progresses and patientsâ€™ voices begin to be heard
then it will be progress. But if it takes the same
course as the NICE guidelines then it will be
another wasted opportunity.
Recently some questions were tabled by an MP in
the UK parliament in response to pressure from one
of his constituents - a severely affected person with
ME who has been writing to IiME. Ian Pearson
answered questions about plans â€˜to establish an
independent scientific committee to oversee
research into ME/CFS. He responded by stating
that â€“
â€œthe MRC is planning to set up a panel of experts
from different disciplines to look more closely at
the area. The panel will come from varied fields
including neuroscience, immunology, toxicology
and imaging, and will involve interested parties
and focus on the subtypes and causes of
ME/CFSâ€.
If this proves to be true then valid change may be
on the way. However, as we recently stated in our
newsletter, Invest in ME take the position that any
intention to bring together the biological and
psychological ME/CFS factions in order to
encourage the MRC to give money is misguided.
Whilst a holistic approach need to be taken
toward any illness it is difficult to reconcile good
science with any examination of relationships
between valid and proven biological markers and
generic, unproven and sometimes deleterious
treatments. This will merely delay the only sure way
of finding a cure for ME - biomedical research.
The only strategy which makes any sense from a
scientific, moral or just viewpoint is to fund
biomedical research into ME and treat ME in the
same way as cancer, Parkinson's, MS or any other
mainstream illness.
We need to adopt proper diagnostic criteria, the
Canadian consensus criteria, to differentiate
idiopathic chronic fatigue, burn out, overtraining
syndrome, fibromyalgia, multiple chemical
sensitivities etc. from ME/CFS and find the correct
treatment for each of these groups. Basically, we
need and want an objective scientific approach
to ME/CFS and sub grouping will facilitate this
process.
We hope the conference will demonstrate this
fact.
And so to the conference.
This year we are dedicating the conference to the
memory of Dr John Richardson. Dr Richardson
devoted his life to the treatment of ME and
it is fitting that we remember him at a biomedical
research conference carrying the theme of sub
grouping and treatments for ME/CFS, especially
with regard to research on enteroviruses now
being presented and which brings us back to the
origins of ME.
In this small way we honour his work and that of
other distinguished professionals over the years
who worked with Dr Richardson and have
continued his work, including Dr Spurr who is cofounder
and chairman of the John Richardson
Research Group. As Dr Spurr notes John
Richardson was a modest man and did not get
the credit he deserved.
A day to celebrate research, science and to be
able to network in a friendly atmosphere with an
eclectic mix of professionals, charities, support
groups and others. We shall have details of our ME
Book Project on display with Natalie able to discuss
this exciting project. The conference day will be a
busy time for the IiME team and we wonâ€™t be able
to spend as much time discussing with our
delegates as we would like. But if you are coming
to the conference please come up and say hello.
For those who are not coming to the conference
but are reading this in our Journal then please stay
in touch via email.
We wish everyone an enjoyable conference and
a pleasant summer and hope and believe that
progress will continue in providing a future
treatment/cure for ME.
Best Wishes
Kathleen McCall & the IiME team
Invest in ME (Charity Nr 1114035)
Page 5
×‰	Ú 7cassandra://lGioRNxoAjbY1aHRqApxX8jVYHQ2oA17Wtpt5h3cE2UÍ)iÍ`ÌÆÍ ×Xo¶Ëä°j÷ùcp×Xo¶Ëä°j÷ùcpÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://f84dvFF0yksrvCCdypSMhelKAUj84_80vuU3VEeC2NUÎ ŸÍ` ÍòÍ²×‰	Ú 7cassandra://p8lCs1-90bNu0tbZoehgjBYYa3xR_T9ypcIAU2kwk7gÍšëÍ`ÍsÍà×‰	Ú 7cassandra://v1K4B2-i15819H7_2qfLSUItG2yoWF7DKtH8tIfTkSMÍ(yÍ`ÌÆÍ ×‰	Ú 7cassandra://D8piCcwS56k9sqxSxbtCyU9xIdo_m83Tomhti0NByy4Í–\ÍÈÍ Í]Íð×Xo¶Ìä°j÷ùcp×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://K-ByshLf44Z9P6bJu10X0wis0hzkSxJ-uhP0aWCjLbAÎ 9ðÍ` ÍòÍ²×‰	Ú 7cassandra://WkHS8VD3-Am7dCmq2PdGrytnNJbdylo8JMRNL-klYe4Í‘þÍ`ÍsÍà×‰	Ú 7cassandra://IG_UO75LsBbkMxvBd2D7nixfd31NtnSdWF-LAYDNz90Í&ÂÍ`ÌÆÍ ×‰	Ú 7cassandra://uJsDOHu4mUmiuAFM0Nu1o1QZ3jOJ6EeUp99Yf0KbXu4ÍšEÍÊÍ Í]Íð×Xo¶Ìä°j÷ùcp”× ×Xo¶Ëä°j÷ùcp Í3Í|ÍD9×‰HÚ qhttp://www.amazon.com/Enteroviral-Mediated-Encephalomyelitis-Syndrome-Pathologies/dp/0789011271/ref=cm_lmf_tit_19G××ÒÔÔÔrÒïïïÌ× ×Xo¶Ëä°j÷ùcp Í3ÍÍt9×‰HÚ qhttp://www.amazon.com/Enteroviral-Mediated-Encephalomyelitis-Syndrome-Pathologies/dp/0789011271/ref=cm_lmf_tit_19G××ÒÔÔÔrÒïïïÌ× ×Xo¶Ëä°j÷ùcp Í3Í¥ÍV9×‰HÚ qhttp://www.amazon.com/Enteroviral-Mediated-Encephalomyelitis-Syndrome-Pathologies/dp/0789011271/ref=cm_lmf_tit_19G××ÒÔÔÔrÒïïïÌ× ×Xo¶Îä°j÷ùcph ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚÿJournal of IiME
Volume 2 Issue 1
www.investinme.org
The 3rd IiME International ME/CFS
Conference
Dedicated to Dr John Richardson
As IiME launch our third annual conference and
include a significant part devoted to enteroviral
research so we would like to dedicate the
conference to a man who devoted a great deal
of his life to treating people with ME.
The international reputation that John Richardson
acquired in the field of myalgic encephalitis (ME)
research sprang from the records that he kept for
40 years of enteroviral infections, mostly coxsackie
virus. He realised that enteroviral infections were
endemic among his practice population on the
south bank of the Tyne, spreading from one family
to another and from one generation to the next.
The public health authorities seemed to be
unaware of it and facilities for identification were
rarely available locally.
The clinical features of these infections varied from
Bornholm diseaseâ€”a common short illness with
chest painâ€”to audible pericarditis, serious
myocarditis, and valvulitis with dysfunction. Other
features were muscle pain, jitter and weakness,
sleep disturbance, hypersensitivity to sound and
light, and mild confusion. Many organs in the body
could also be affected. In the long term the
effects were sometimes serious. While some
members of a family would escape with a brief
febrile illness only, coxsackie infection could leave
one person struggling for years with ME or dilated
cardiomyopathy. Worse still, John found that the
infection would readily pass from the mother to her
unborn child, which would be delivered with
fibroelastosis or maldevelopment of the heart, or
structural defects of the brain or other organs. He
tried to prevent this in early pregnancy by giving
the mother intramuscular injections of human
immunoglobulin.
Early on John believed that ME was an illness that
could follow directly from a coxsackie infection
and one that was capable of altering the whole
personality and abilities of someone he had known
for years. The idea that it was just depression or
hysteria, a psychoneurosis or "all in the mind," he
found not only ludicrous and cruel, but also
Invest in ME (Charity Nr 1114035)
â€œThis Dr. John Richardson of Newcastle,
and others have documented significant
associated cardiac and cardiovascular
injury as well as other organ injuries
associated with the usual CNS and
autonomic changes in this group of
patients."
"[Richardson] has followed ME patients...for
three to four generations. I am aware of
no other physician in the world with such a
historic view of ME patients. He has
repeatedly demonstrated that many ME
patients go on to develop structural heart
injury. Richardson has identified more
than several hundred cardiopathies in his
ME practice."
-Dr. Byron Hyde(source
http://www.nameus.org/ResearchPages/ResCirculatory.htm)
dangerous,
and his records contain several
examples of suicide. When patients told him that
they had grown tired after taking vigorous or
progressively "graded" exercise and found that
they had to pay for it by being much worse for the
next day or so, he believed them and sought other
methods of treatment.
The fame of his records led James Mowbray,
professor of immunopathology at St Mary's
Hospital, London, to offer him unrestricted
facilities for identification of the various strains of
the coxsackie group of viruses, as well as other
viruses less frequently encountered. Leonard
Archard, professor of biochemistry at Imperial
College, London, was also helpful in culturing
virus in samples of tissue sent to him and both
became personal friends. John did not publish
these records in the form of his book Enteroviral
and Toxin Mediated Myalgic
Encephalitis/Chronic Fatigue Syndrome and
Other Organ Pathologies (Haworth Medical
Press) until 2001.
(Continued on page7)
Page 6
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Volume 2 Issue 1
www.investinme.org
John also became acquainted with Dr Melvin
Ramsay, who defined benign myalgic
encephalomyelitis in 1956 after studying an
outbreak of Bornholm disease at the Royal Free
Hospital, London. John became a founder
member of the ME Association, renamed the
Ramsay Research Fund in 1999 after Melvyn
Ramsay's death.
John's own international reputation grew rapidly
after an international symposium on myalgic
encephalitis was held in Cambridge, United
Kingdom, in 1989. He chaired the conference
and the book that followed in 1992, The Clinical
and Scientific Basis of Myalgic
Encephalomyelitis, edited by Dr Byron Hyde, not
only contains a chapter written by John, but is
dedicated to him.
John gave up all NHS work in 1992 and his
appointment as a senior police surgeon.
However, he continued to see patients privately.
Most came from the United Kingdom, but some
also from France, Republic of Ireland, Belgium,
and Norway.
He refused fees, but suggested instead a
contribution to the research fund that he
established. This he used partly to finance
scientific papers that he wrote and partly as gifts
to individuals and university departments where
the effects of long term survival of virus in the
human body were being studied. His own
papers were into what part of the brain was
involved in ME. John also used the patient
contributions to finance an annual international
conference in his local area. The pursuit of these
researches did not prevent him playing a full
part in the general practice of which he was a
partner, including training medical students sent
to him by the university.
Outside medicine his main interest was music,
especially playing the three manual pipe organ,
which with assistance he had built in his own
house and for which he composed 28 pieces.
John Richardson, former general practitioner
Ryton, Tyne and Wear (b 1915; q Durham 1952),
died in the Freeman Hospital, Newcastle, on
Invest in ME (Charity Nr 1114035)
18 July 2002. The above information was taken
from the BMJ obituary for John Richardson by
Hewan Dewar.
The John Richardson Group
The Newcastle Group was founded by Drs John
Richardson, Hewan Dewar and Irving Spurr back in
1993. Its purpose was to promote research into the
origin and consequences of viral infections (entero
viruses in particular). The group was renamed
following the death of Dr John Richardson in 2002.
The group also organises an annual conference
which attracts many eminent participants from
around the world.
More articles from Dr John Richardson: -
â€¢ Myalgic Encephalomyelitis: Guidelines for
Doctors Journal: J of Chronic Fatigue
Syndrome, Vol. 10(1) 2002, pp. 65-80
â€¢ Enteroviral and Toxin Mediated Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome
and Other Organ Pathologies (Hardcover)
ME Story
I am â€¦. a fully grown man of 44, I am
now into my 6th year, soon planned to
get married but my girlfriend is very
worried about what to expect - the
outlook will be for her having to deal
with me as I get worse.
I have got to the stage where I can no
longer breathe through my nose
channel despite 4 operations. They
have said there is nothing more they
can do so I am now finding myself
becoming very fatigued by about
11am sleeping for about 9 hours per
day and again during the night, I have
lost a lot of weight gone from 12 stone
down to 9 stone in one month.
I wish the government would put more
money into research to find a cure for
this bad, painful illness.
- I
Page 7
×‰	Ú 7cassandra://IG_UO75LsBbkMxvBd2D7nixfd31NtnSdWF-LAYDNz90Í&ÂÍ`ÌÆÍ ×Xo¶Ìä°j÷ùcp×Xo¶Ìä°j÷ùcpÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://55Z0FNSeg06K2Hfn20NAR_4r5MKpbU3gh0TNE4d1HzIÎ õ§Í` ÍòÍ²×‰	Ú 7cassandra://Dwy2lGzYCQb3E_Dybi2RUb2mbQnVtnl6F-bQy3RyNIoÍÍ`ÍsÍà×‰	Ú 7cassandra://dCyFmhSRq3Bh85_5ORgbe7AeMpdz1HEcC7QmB5TyI4IÍ&jÍ`ÌÆÍ ×‰	Ú 7cassandra://RdG3_5YdWju3lbjgAsOIOtbzkVC3rfHcr02nAvOF_58ÍjhÍhÍ Í]Íð×Xo¶Ìä°j÷ùcp×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://Dpv2EsHbAuFCNLFYiwdvCQIbO_V4qO7Gn-TrswjnJmgÎ ÙzÍ`ÍòÍ²×‰	Ú 7cassandra://0FmlhmLOFpUgg80tKh88cAU2Qoo2BbAOQXWMpl05rYYÍÎÍ`ÍsÍà×‰	Ú 7cassandra://oOpdk-g0cTIqMfSIyMQKXhPm-6_2RrN-5f_Q08XT9FIÍ(Í`ÌÆÍ ×‰	Ú 7cassandra://Jf5hStdqw_TRhmH3-bXr3YiVmotntMAVN7eEItGoY9sÍýGÍêÍ Í]Íð×Xo¶Ìä°j÷ùcp‘× ×Xo¶Îä°j÷ùcp^ ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚ”Journal of IiME
Volume 2 Issue 1
C Coonnffeerreennccee IInnttrroodduuccttiioonn
This Conference makes clear the rapidly changing
understanding of ME-CFS and related â€œsyndromes
of uncertain originâ€. It provides confirmation of
earlier insights concerning viral infections as a
common basis of the illness and adds to these the
growing recognition of the impact of infection on
nervous system, particularly the, autonomic
nervous system, endocrine and cardiovascular
systems.
The validity of the WHO ICD classification of ME as
a neurological condition is justified whilst the interrelated
impact on other major body systems is
demonstrated. The inadequacies of the widely
used CDC 1994 research criteria are now clear
and much more careful definitions of ME are
needed if the accurate diagnosis necessary for
effective treatment and management of the
illness are to be provided.
The key to accurate diagnosis is the careful clinical
separation of different sub-groups within the ME
spectrum which will, at the same time, assist
deeper understanding of this multi-system and
multi-organ disorder.
The key to accurate
diagnosis is the careful
clinical separation of different
sub-groups within the ME
spectrum which will, at the
same time, assist deeper
understanding of this multisystem
and multi-organ
disorder.
The speakers bring to the Conference years of
extensive research and clinical studies that
provide new grounds for hope for those who suffer
from ME and their carers. It will encourage and
inform clinicians and clinical administrators who
are wrestling with the complexities of a growing
number of patients with this illness and provided
better grounds for treatment and the assessment
of benefits, insurance and care needs for patients.
Dr Leonard Jason has led the field in pressing the
case for sub-groups to better understand and
treat the illness.
Drs John Chia and Martin Lerner are specialists in
virally-induced infectious diseases which affect
both the nervous system and the heart, two major
Invest in ME (Charity Nr 1114035)
www.investinme.org
By Professor Malcolm Hooper
features of sick ME patients.
Dr Irving Spurr has for many years cared for and
investigated ME patients in Weardale in
collaboration with the late Dr John Richardson
and Dr Byron Hyde. As a GP he has a long
experience of this complex illness and its treatment
within the UK.
Dr Jean Monro has a great deal of expert clinical
experience and developed extensive diagnostic
and treatment protocols for ME and related
illnesses and provides a private hospital service in
addition to seeing patients in other settings.
Dr Julia Newton has documented and studied the
extensive dysautonomia commonly found in many
ME patients and responsible for the well known
variations in blood pressure, body temperature,
balance etc.
Dr Judy Mikovits, as Director of the newly formed
Whittemore-Petersen Institute, will provide an up
date on the progress of the Institute which is the
first one founded to bring together research,
clinical assessment and treatment of ME patients.
Can we establish such an Institute in the UK?
Dr Jonathan Kerr has pioneered the groundbreaking
genetic studies of ME patients and
shown the strong links with infection, chemicals,
mitochondrial and nerve dysfunction. His latest
work includes the identification of clinical
phenotypes that provide sound grounds for subgroups
within the spectrum of ME and point to
more focussed treatment.
The poverty and misinformation of the psychiatric
lobby that dominates the UK understanding of
CFS-ME is exposed by this Conference. The work
presented will no longer allow the ill-founded
somatisation and (bio)psychosocial theories to
remain credible.
Enjoy!
Malcolm Hooper
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¹Journal of IiME
Volume 2 Issue 1
www.investinme.org
ME Story
I have lived with severe M.E,
and a lot of ignorance and
prejudice, for 13 years. On
many occasions I have been
told that there is nothing wrong
with me, I am just trying to get
attention, or that I am too lazy
to do anything. My response is,
that if I was going to "fake"
being ill then I wouldn't choose
an illness where I was going to
be disbelieved, ignored,
treated badly by most people,
loose all of my friends and
have my family reject me!
- Sarah
The International ME/CFS Conference 2008â€”Sub
Grouping of/Treatments for ME/CFS
John Herd is a passionate
spokesperson and crusader for
patients' rights. He has been called
a "veteran advocate" by the CFIDS
Association for faithful attendance
at major conferences, and is "on a
first-name basis with most of the
pioneers" in ME/CFS research and
patient care
I'm delighted to read that the International ME/CFS
Conference 2008 has chosen its theme to be Sub Grouping
of/Treatments for ME/CFS.
In the end of the 90's Lenny Jason and I encouraged the then
operational health department's Name Change Workgroup
(NCW) to include in its recommendations a call for a system
of sub-grouping patients.
Although sub-grouping had been very briefly mentioned in a
few journal articles, the subject had been given almost no
attention.
Chief Medical Officer
â€˜..there is a paucity of good
research evidence and very
little research investment for a
serious clinical problem that in
likelihood has a pervasive
impact on the individual and
the community.
Insufficient attention has been
paid to differential outcomes
and treatment responses in
children and young adults, the
severely affected, cultural,
ethnic and social class
groupings.â€™
â€“ The CMO Working Group on
CFS/ME 2002
In the years since the NCW distributed its recommendations
there has been somewhat increased talk of the importance
of sub-grouping, but there remains no standardized system of
sub-grouping patients my biologic test results and/or
symptom presentation.
In research presentations researchers present stratified subgroups
of patients based upon the specific data they are
testing for.
Because there is no standardized system of sub-grouping
patients, it is often difficult to compare the results of studies or
to know if studies are comparing similar populations.
Development of a standardized sub-grouping system would
alleviate the problem of different researchers applying
differently the various research diagnostic criteria and even
applying single criterion differently.
Such a system may also help us get beyond the logjam of
differing views about what is M.E. and what is CFS as our
science progresses.
John Herd
Invest in ME (Charity Nr 1114035)
Page 9
×‰	Ú 7cassandra://oOpdk-g0cTIqMfSIyMQKXhPm-6_2RrN-5f_Q08XT9FIÍ(Í`ÌÆÍ ×Xo¶Ìä°j÷ùcp×Xo¶Ìä°j÷ùcpÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://j9QlsCJRrSdHzA-SLWu0wpAyXNPbp1xiKXLeQLYYFyQÎ {Í` ÍòÍ²×‰	Ú 7cassandra://TIuogf2XJUbwvlnN129tA4qU-o3fuqRkDf4UpUDFNSAÍœ·Í`ÍsÍà×‰	Ú 7cassandra://C0A71IaG91bVqUC3p0NBh9Fe_hW-nu_gNjT0WjfOskgÍ)ˆÍ`ÌÆÍ ×‰	Ú 7cassandra://bBXCRnHgTKWk8ySOBvO7dMX0AD7pCdxQLab9_f-5cTkÍXõDÍ Í]Íð×Xo¶Ìä°j÷ùcp×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://fy4YA7Wb-DcstBsXTNDdY6Qydd9nf5w27yv276RFfzUÎ ëÍ` ÍòÍ²×‰	Ú 7cassandra://2JPEfDY7UtOK_xZU5r4wQ1hkTUje9xEitdbQd4JVTd8ÍƒíÍ`ÍsÍà×‰	Ú 7cassandra://Xt7aEX7Cu_y16XQqtkrUEhbvpXpxy5MSebd_ATrjE0EÍ'Í`ÌÆÍ ×‰	Ú 7cassandra://kaNVjrzA2sdXn7PELthrjUUfHqaGXeYKraVDm5OUy-8ÍjNÍ Í]Íð×Xo¶Ìä°j÷ùcp”× ×Xo¶Ìä°j÷ùcp ÍiÍÆÌÊ9×‰H¹http://tinyurl.com/6ylm3rG××ÒÔÔÔrÒïïïÌ× ×Xo¶Ìä°j÷ùcp ÍèÍ)Í+9×‰H¾http://co-cure.org/Jason-5.pdfG××ÒÔÔÔrÒïïïÌ× ×Xo¶Îä°j÷ùcpc ÍvÍsÍ%9×HÚ Zhttp://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf××Ðˆ× ×Xo¶Îä°j÷ùcp` ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚ£Journal of IiME
Volume 2 Issue 1
www.investinme.org
PROFILES of PRESENTERS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
P Prrooffeessssoorr MMaa llccoollmm HHooooppeerr
Professor Hooper graduated from University of London and had held
appointments at Sunderland Technical College, Sunderland Polytechnic and the
University of Sunderland, where he was made Emeritus Professor of Medicinal
Chemistry in 1993.
He has served at many UK universities as well as in India and Tanzania.
He has inaugurated links with Indian research institutions and universities and celebrated 25 years of
productive and on-going links which have, particularly, involved the design and development of new
drugs for tropical diseases and an exploration of natural products associated with Ayurvedic medicine. He
has published some 50 papers in peer-reviewed journals in the field of medicinal chemistry together with
major reviews on the Chemotherapy of Leprosy, the Chemistry of Isatogens. He edited one book on the
Chemotherapy of Tropical Diseases.
He acted as a referee for a number of important journals and served on one editorial board. He has
served on committees of the Council for National Academic Awards (CNAA), the World Health
Organisation (WHO) and the Science and Engineering Research Council (SERC).
Professor Hooper is a member of a number of learned bodies, including the Royal Chemical Society, the
British Pharmacological Society and the Society for Drug Research (SDR), now renamed the Society for
Medicines Research, where he has served on the committee for 12 years and served as Chairman for 2
years. This involved the planning and organising of major national and international conferences. He was
appointed Chief Scientific Advisor to the Gulf Veterans Association (GVA) and accepted by the Ministry of
Defence (MoD) as their nominee on the Independent Panel established to consider the possible
interactions between Vaccines and NAPS tablets.
He has also served on the Gulf Support Group convened at the Royal British Legion. His involvement with
the GVA brought contact with Chronic Fatigue Syndrome/Myalegic Encephalomyelitis (ME/CFS) and
related disorders. Gulf War Illness/Syndrome (GWI/S) has much in common with ME/CFS.
He is Patron of the Sunderland and South Shields M.E. Association and a member of the John Richardson
Research Group, which includes eminent physicians and scientists performing research into ME/CFS, where
one recent aspect has been the identification of organochlorine pesticide poisoning being misdiagnosed
as M.E./CFS. He has addressed meetings of the Pesticide Exchange Network and consulted to the
Organo-Phosphate Information Network (OPIN).
He worked with the Autism Research Unit (ARU) at the University of Sunderland for over 20 years, leading to
involvement in biochemical studies to offer help, support and treatment for people with autism. This has
also lead to research and urine-analysis of Indolyl-Acroyl-Glycine (IAG), which is an unusual metabolite
found in excess of 90% of people examined in different groups of GWV, ME/CFS and Organo-Phosphate
(OP) poisoning sufferers. He served on the General Synod of the Church of England from 1970 to 1980 and
he is a Christian Lay Leader, Preacher and Teacher.
He has been involved in three environmental campaigns:
â€¢ Toxic waste dumping, including campaign against sewage in the sea presenting to the Select
Committee on Sewage Treatment and Disposal
â€¢ GWIS, presenting to the Defence Select Committee
â€¢ M.E./CFS and OP/Pesticide poisoning
Professor Hooper will be chairing the International ME/CFS Conference 2008.
For additional articles by Professor Hooper on the IiME web site see http://tinyurl.com/6ylm3r
Invest in ME (Charity Nr 1114035)
Page 10
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+Journal of IiME
Volume 2 Issue 1
www.investinme.org
PROFILES of PRESENTERS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
D Drr.. LLeeoonnaarrdd JJaassoonn
Prof. of Clin. & Community Psychology, Director, Center for Community
Research, DePaul University, Chicago
Dr. Leonard Jason, Ph.D., is among the most prolific of all ME/CFS
researchers. For more than a decade, Dr. Jason and his team at DePaul
Universityâ€™s Centre for Community Research have worked to define the
scope and impact of ME/CFS worldwide.
Dr Jason is Vice President of the International Association for Chronic Fatigue Syndrome (now the
IACFS/ME) and has been a key driver of CFS research since 1991, and is uniquely positioned to support
collaboration between CFS researchers, patients, and government decision makers. His studies have
shown that the direct and indirect costs of ME/CFS amount to $20 billion in the U.S. each year, and more
than 1 million people suffer from ME/CFS as opposed to the estimated 20,000 people originally reported
by the CDC (Centers for Disease Control and Prevention).
C Coonnffeerreennccee PPrreesseennttaatt iioonn
C Caassee DDeeff iinnii tt iioonnss ooffM MEE//CCFFSS â€“â€“ IInncclluuddiinngg PPaaeeddiiaattrriicc CCaassee DDeeff iinnii tt iioonn
It is important to determine which case definition to use in defining the ME/CFS syndrome.
The benefit of classifying patients into diagnostic categories is that it facilitates communication among
clinicians and researchers, selection of treatment methods, and prediction of response to treatment.
Currently, scientists throughout the world use the Fukuda et al. (1994) CFS case definition.
Efforts to develop a case definition can be traced back even earlier.
In 1955, there was an outbreak of a CFS-like illness at the Royal Free Hospital, and Ramsay, the medical
consultant in charge, published a definition of this disease using the term Myalgic Encephalomyelitis
(ME).
Recently, the Canadians have developed a clinical case definition, the IACFS/ME has developed a
pediatric case definition of ME/CFS, and the CDC has developed an empirical case definition.
This talk will summarize some of the issues and controversies involving these case definitions.
Additional links for Dr Jason:
â€¢ Jason L, et al., "The Economic impact of ME/CFS: individual and societal level cost," Dynamic
Medicine, 2008 7:6 (8 April 2008) [PDF Format]
â€¢ Jason L, "Exploratory subgrouping in CFS: Infectious, inflammatory, and other":
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf
Invest in ME (Charity Nr 1114035)
Page 11
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Volume 2 Issue 1
www.investinme.org
PROFILES of PRESENTERS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
Dr. Jonathan Kerr
Jonathan Kerr qualified in medicine from Queenâ€™s University of Belfast (1987),
and completed training as a medical microbiologist (1995).
He has worked as a microbiologist in Belfast, Manchester and London, taking
up post as a Consultant Senior Lecturer in Microbiology at Royal Brompton
Hospital / Imperial College in June 2001, and then Sir Joseph Hotung Clinical
Senior Lecturer in Inflammation at St Georgeâ€™s University of London in 2005.
His interest in Chronic Fatigue Syndrome (CFS) began during a study of the consequences of parvovirus
B19 infection, when he showed that a percentage of infected cases developed CFS which persisted for
several years. He is now the principal investigator in a programme of research in CFS. This involves
development of a diagnostic test using mass spectrometry, analysis of human and viral gene expression
in the white blood cells, and clinical trials of immunomodulatory drugs.
Dr. Jonathan Kerr and colleagues at St. Georgeâ€™s University of London reported in the July 27, 2005 issue
of the Journal of Clinical Pathology that a preliminary study of 25 CFS patients and 25 matched healthy
controls revealed abnormalities in 35 of 9,522 genes analyzed using microarray technology. Polymerase
chain reaction studies showed the same results for 16 of these genes. Dr. Kerr has recently defined seven
genomic subtypes of CFS based on 88 genes that are expressed differently in CFS patients than they are
in normal controls.
The study, and its results, raises some important questions. The first of which pertains to the need for
funding of microbiological CFS research. He is funded (>Â£1million) by the CFS Research Foundation
(www.cfsrf.com), a charitable organization based in the U.K., and leads a group of 5 scientists at St
George's.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
G Geennee EExxpprreessssiioonn iinn MMEE//CCFFSS:: aa MMeeaannss ooff SSuubbttyyppiinngg
Chronic Fatigue Syndrome / myalgic encephalomyelitis (CFS/ME) is a multisystem disease, the
pathogenesis of which remains undetermined. We set out to determine the precise abnormalities of
gene expression that occur in blood of CFS/ME patients. We analysed gene expression in
peripheral blood from 25 CFS/ME patients diagnosed according to the Centers for Disease Control
(CDC) diagnostic criteria and 50 normal blood donors using the Affymetrix U133+2 microarray using a
cut-off fold-difference of expression &#8805;2.5. Genes showing differential expression were further
analysed using quantitative PCR in 55 CFS/ME patients and 75 normal blood donors. Differential
expression was confirmed for 88 genes, 85 of which were upregulated and 3 downregulated. Highly
represented functions were haematological disease and function, immunological disease and function,
cancer, cell death, immune response and infection. Clustering of QPCR data from CFS/ME patients
revealed 7 subtypes with distinct differences in SF-36 scores, clinical phenotypes and severity.
Additional links for Dr Kerr:
â€¢ Jonathan Kerr, Seven genomic subtypes of Chronic Fatigue Syndrome / Myalgic
Encephalomyelitis (CFS/ME): a detailed analysis of gene networks and clinical phenotypes. J
Clin Pathol. 2007 Dec 5. ub ahead of print] PMID: 18057078 [PubMed - as supplied by
publisher]
Invest in ME (Charity Nr 1114035)
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Volume 2 Issue 1
www.investinme.org
PROFILES of PRESENTERS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
Dr Martin Lerner
Dr Martin Lerner is certified by the American Board of Internal Medicine and
is an Infectious Disease Specialist. He held a residency in Internal Medicine,
at Harvard Medical Services. Boston City Hospital and Barnes Hospital, St.
Louis, MO. Washington University School of Medicine, M.D.
Two Years, National Institute of Allergy and Infectious Diseases, Epidemiology
Unit. Alumni Awardee, Washington University School of Medicine.
Three years research fellow in infectious diseases at the Thorndike Memorial Laboratory, Boston City
Hospital and Harvard Medical School under the direction of Dr. Maxwell Finland, (founder of subspecialty
infectious diseases). Also awarded a 1-year fellowship in molecular biology under the direction of Dr.
James Darnell, Massachusetts Institute of Technology, Cambridge Massachusetts. He was Chief of the
Division of Infectious Diseases and Professor of Internal Medicine at Wayne State University School of
Medicine, 1963-1982. Chief of the Department of Medicine at Hutzel Hospital, Wayne State University,
Detroit, MI 1970â€“1982. He established a clinical virology laboratory and trained 33 physicians in the
subspecialty of infectious diseases at Wayne State University, (1963-1982). He was elected member
American Society for Clinical Investigation, American Association of Physicians. He is a member of the
committee preparing the National Boards in Medical Examiners, US, and a member of the training grant
committee, National Institute of Allergy and Infectious Diseases, NIH. Master of the American College of
Physicians. He was Governor for Michigan American College of Physicians, 1991 â€“ 1994.
Dr. Lerner has published over 10 papers since 1993 on the role of subclinical myocarditis in a subset of CFS
patients. He has also reported success with long courses of antiviral therapy in patients with chronic EBV
and CMV infections. Dr. Lerner uses antibody tests for early antigen to CMV and EBV that are not
available in most commercial laboratories; he believes that they are better for differentiating active from
latent infections. Although these papers received very little attention in the past, there has been interest in
the tie between viral myocarditis and CFS recently since a series of three papers from Germany have
found HHV-6 and parvovirus B-19 to be the most common viruses found in biopsies of patients with viral
myocarditis. Both viruses are also implicated in CFS/ME.
Dr Lerner holds Five Patents for Diagnosis and Treatment of CFS.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
A A TTwweennttyy YYeeaarr JJoouurrnneeyy ttoo UUnnddeerrssttaannddiinngg aanndd TT rreeaattmmeenntt ooff tthhee
C Chhrroonniicc FFaatt iigguuee SSyynnddrroommee IInncclluuddiinngg AA LLoonnggii ttuuddiinnaall SSttuuddyy o off
G Grroouuppss AA aanndd BB CCFFSS PPaatt iieenntt ss,, 22000000--22000066
The Energy Index point score (EI), (copyright, Lerner AM and Deeter RG, 1999), (0-10) is a simple reliable
metric easily evaluating the functional capacity at each CFS patient-physician visit. A hanging sign in the
examining room, with physician and patient together, is used. Validation of the EI was done using two
methods: a) 20 CFS patients and 22 healthy adults, matched for sex, age, place and time; EI, CFS = 3.6; EI,
healthy adults = 9.9, p=<0.0001, and b) 55 CFS patients evaluated at the same time by the EI and Fatigue
Severity Score, correlation 0.67, p=0.0066. Improvement to disappearance of CFS symptoms correlate
with an increasing EI.
(Continued on page 14)
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×‰	Ú 7cassandra://8sk0cuGIpdT6GoCRNvmhrwu1tPADWzsWKiKhXtcSjucÍ+Í`ÌÆÍ ×Xo¶Ìä°j÷ùcp%×Xo¶Ìä°j÷ùcp$ÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://UU8xV5t_GSU3fKen5RQDmbgJgIT6KlJ4-sFdBQXRrHUÎ [ÝÍ` ÍòÍ²×‰	Ú 7cassandra://tEbRIm9F8GijlOunkwV9hO87SQ3eNscNUoqL6k4go2kÍ­¬Í`ÍsÍà×‰	Ú 7cassandra://QCeRzZyIQeYUBaNSTttzTXwzKglWSBbhVMaqv2CkpFkÍ*áÍ`ÌÆÍ ×‰	Ú 7cassandra://0uu5nGMriyNg5WKhGgPKicbad9PMnJEoMXxQ0lMYDKYÍ\Å4Í Í]Íð×Xo¶Íä°j÷ùcp&×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://ev1CTFZd9xP-vmSjdAuaiRU2dhSxXWSmZ9XfuMtP03kÎ GæÍ` ÍòÍ²×‰	Ú 7cassandra://G2ToonGHi06BF_kSeVjrXYeW1mvUJknWdb4cz6j2uBUÍ‰ŸÍ`ÍsÍà×‰	Ú 7cassandra://bebtdaQtBU2GVzRlN0AR3LrgKxBt4osPX3GtcOM1Qg0Í)šÍ`ÌÆÍ ×‰	Ú 7cassandra://_3Kx-yEZm990uhW5Mn-0PnUS59jDeXvq5ZbUOlwMVB4Ín.FÍ Í]Íð×Xo¶Íä°j÷ùcp'‘× ×Xo¶Îä°j÷ùcpm ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚøJournal of IiME
Volume 2 Issue 1
www.investinme.org
PROFILES of PRESENTERS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
(Continued from page 13)
The validated Energy Index (EI) point score (1-10) was calculated for each CFS patient every 3 months at
physician visits. A CFS patient has an EI < 5. A CFS patient with an EI of 0 is bedridden; a CFS diagnosis is
no longer present at an EI > 5. The EI effect size is 0.25, a medium effect size is 0.5. A large effect size is >
0.8. Administrations of antiviral drugs were given within a defined pharmacokinetic therapeutic window.
Eighteen CFS patients with elevated serum IgG serum antibody titers to cytomegalovirus (HCMV) were
treated with intravenous ganciclovir 5mg/Kg q 12 h for 30 days. At evaluations, 24 weeks later, 13 patients
(72%) returned to their premorbid healthy states (Infectious Diseases in Clinical Practice, 1997:6;110-117). In
a second study, 25 CFS patients with elevated serum antibody titers to Epstein-Barr virus (EBV), Early
Antigen (Diffuse) and/or EBV, viral capsid antigen (VCA, IgM) were treated with valacyclovir (14.6 mg/Kg
po q 6 h) for 6 months. This valacyclovir dose achieved serum acyclovir Cmax > 7Âµm and high antiviral
activity versus EBV (ID50, 4.4 â€“ 13.3Âµm), but no antiviral activity versus HCMV. The CFS patients EI functional
capacity as well as EBV and HCMV serum antibody titers were again assessed after 1, 3 and 6 months of
valacyclovir. We concluded that the 16 CFS patients with EBV persistent infection (EBV single-virus subset)
improved after 6 months, but 9 CFS patients with elevated serum antibody titers to â€œbothâ€ EBV and HCMV
did not benefit from valacyclovir (Drugs of Today, 2002:38;549-561). With this guidance, a randomized
double blinded controlled 6 month study of EBV subset single virus (no HCMV serum antibody) showed an
EI rise after 6 months of +1.12 units (122 Kcal/day), in the valacyclovir group while the placebo group
improved +0.42 units (65 Kcal/day), Invivo 2007:21;707-714.
The current inclusive CFS data (May 1, 2001â€”December 31, 2007) regardless of duration of CFS illness from
this treatment center of 201 CFS patients reveal demographic and epidemiologic data, 156 (77.6%)
female; 45 (22.4%) male. The mean age of CFS patients is 45.2 years, BMI 26.4 Kg/m2. These 201 CFS
patients are two distinct groups with similar demographics; (A) CFS Herpesvirus Illness (EBV, HHV6, HCMV)
with no co-infections, and Group (B) CFS Herpesvirus Illness (EBV, HCMV,HHV6) â€œwithâ€ mimicking, coinfections,
both A group and B group meeting international criteria for diagnosis of CFS. (Fukuda, Ann
Intern Med. 1994:121;953-9). The major co-infections of Group B are Lyme Disease, Babesiosis and Adult
Rheumatic Fever.
The subsequent data here are those of CFS Group A who were ill an average of 5.2 years before receiving
antiviral therapy. Data for CFS Group B are not included. There are 138 group A CFS patients, 104
females (75.4%) and 34 males (24.6%). The mean age is 46.4 years, BMI 26.7 Kg/m2. Patients were further
identified by the presence of elevated serum antibody titers to EBV, HCMV, or HHV6. CFS patients (>95%)
had abnormal oscillating flat or inverted T-waves at 24Hr ECG monitor and abnormal cardiac wall motion
at rest (11.5%) and stress (24.1%). Cardiac biopsies from CFS patients seen in 1997 showed a noninflammatory
cardiomyopathy with myofiber disarray, myofiber drop out, apoptosis, and cardiac
replacement fibrosis.
Among the 138 Group A herpesvirus CFS patients there were single virus infections, EBV patients (27.5%);
HCMV (13.8%); and HHV6 (1.4%). However, more commonly, each CFS patient was infected with several
herpesviruses simultaneously: (79 patients with multiple herpesvirus infections (57.2%)). There were
EBV/HCMV co-infections (28.3%); EBV/HHV6 co-infections (10.9%); HCMV/HHV6 co-infections (5.1%); and
EBV/HCMV/HHV6 co-infections (13.0%). Specific long-term pharmacokinetic therapy was administered to
each patient until the EI point score reached 8, at which time, antiviral medicines were tapered, stopped,
or continued, as appropriate with no change in the EI point score. The EI point score at 3 month intervals
for the 6 years of the study was recorded. There were a mean of 46 EI patients at each 3 month time
interval and 25 time intervals over the 6 year longitudinal study. The mean EI for the 138 CFS patients at
baseline was 4.5. The mean final EI point score was 6.0, an increase of 1.5 EI units and, therefore, a large EI
effect size change (Spearmanâ€™s p nonparametric correlation test, Spearmanâ€™s p=0.562, p=0.0019). These
data indicate that specific long-term anti-herpesvirus pharmacokinetic administration of
valacyclovir/valganciclovir provides long-term significant benefit to Group A CFS patients.
(Continued on page 15)
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×‰	Ú 7cassandra://QCeRzZyIQeYUBaNSTttzTXwzKglWSBbhVMaqv2CkpFkÍ*áÍ`ÌÆÍ ×Xo¶Íä°j÷ùcp(×‰EÚ
•Journal of IiME
Volume 2 Issue 1
www.investinme.org
PROFILES/PRESENTATIONS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
(Continued from page 14)
There was no toxicity to this long-term antiviral therapy as given. For the non-statistician, the data
show that the benefit to the CFS patient has the quality of truth 998 times out of a1,000! For the
evidence-based physician requiring placebo controlled double blinded trials for veritude, without
recognition of the differences between Group A and Group B CFS patients, as defined here, it is likely
that the evidence based trial may have falsely yielded â€œno benefitâ€ from the antiviral therapy.
Additional links for Dr Lerner:
â€¢ Martin Lerner, Valacyclovir treatment in Epstein-Barr virus subset chronic fatigue syndrome:
thirty-six months follow-up. In Vivo. 2007 Sep-Oct;21(5):707-13. PMID: 18019402 [PubMed -
indexed for MEDLINE]
â€¢ Martin Lerner, Immunoassay with cytomegalovirus early antigens from gene products p52
and CM2 (UL44 and UL57) detects active infection in patients with chronic fatigue
syndrome. J Clin Pathol. 2008 May;61(5):623-6. Epub 2007 Nov 23. PMID: 18037660 [PubMed
- in process]
D Drr JJuull iiaa NNeewwttoonn
Senior Lecturer at the Institute of Cellular Medicine, Newcastle University
Dr Newton is Senior Lecturer at the Institute of Cellular Medicine, Newcastle
University. She is the academic lead of the internationally renowned
Cardiovascular Investigation Unit (Falls and Syncope Unit) which is
arguably the largest autonomic nervous system testing laboratory in
Europe.
Dr Newton has been working on autonomic dysfunction in ME/CFS
patients. She has a reputation in the investigation of autonomic function in
the pathogenesis of fatigue with a research programme funded by the
MRC, ME Research UK and Liver North.
She founded and chairs the local multidisciplinary Fatigue Interest Group.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
A Auuttoonnoommiicc DDyyssffuunnccttiioonn:: IIddeenntt ii ffiiccaatt iioonn ooff AAeett iioollooggiiccaall llyy
DDiisstt iinncctt SSuubbjjeecctt ggrroouuppss wwii tthhiinn MMEE//CCFFSS
The talk today will focus on the physiological changes that occur when humans stand, and how
autonomic nervous system responses to assuming the upright position may be impaired in those with
CFS/ME.
Additional links for Dr Newton:
â€¢ Symptoms of autonomic dysfunction in chronic fatigue Syndrome J.L. NEWTON, O.
OKONKWO, K. SUTCLIFFE, A. SETH, J. SHIN and D.E.J. JONES From the Fatigue Interest group
and Liver Research Group, Institute for Cellular Medicine,University of Newcastle,
Newcastle, UK Received 5 March 2007 and in revised form 24 April 2007
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Page 15
×‰	Ú 7cassandra://bebtdaQtBU2GVzRlN0AR3LrgKxBt4osPX3GtcOM1Qg0Í)šÍ`ÌÆÍ ×Xo¶Íä°j÷ùcp)×Xo¶Íä°j÷ùcp(ÍøÍ(×‘C’×˜š   ÍüÍ(u×‰œ”×‰	Ú 7cassandra://7V2PtOWUn7P2TgLewRojakZ2UoInelaa8PB2uvmfdnIÎ >òÍ` ÍòÍ²×‰	Ú 7cassandra://7S3GyM9XamcNyYDkY7Ya4x8Nc0ZQ28ogjv_C3P_Rg7oÍ•yÍ`ÍsÍà×‰	Ú 7cassandra://S10vV4r3W7HF9oUt_kxVYmElPu888UEyQmQt1uaaVN8Í(¹Í`ÌÆÍ ×‰	Ú 7cassandra://8cZGqV5TDjdaUjDpRbHNvAqG3PjTXMoBcexcFqHVuMQÍƒ©FÍ Í]Íð×Xo¶Íä°j÷ùcp2×˜š Íü ÍüÍ(u×‰œ”×‰	Ú 7cassandra://ShJuKcA3qi_GD0QETHqGLjZ-vsPpJloNbB7lTTYAagUÎ ÆÅÍ` ÍòÍ²×‰	Ú 7cassandra://vGxLUJHUY_VxNqXPQgRBM23Nn3cZg3CiQWRA0-XI3z4ÍwcÍ`ÍsÍà×‰	Ú 7cassandra://p-GgmbmLM4blo8Ed0KyP2SC5pexKi9RF8SJm1xE9opEÍ%PÍ`ÌÆÍ ×‰	Ú 7cassandra://r85zipYyb_DqVq3GPBf6zDddbAXhFprpda3sLy3a1PcÍ…þnÍ Í]Íð×Xo¶Íä°j÷ùcp3š× ×Xo¶Íä°j÷ùcp* Í÷Í«ÌŽ9×‰HÚ 6http://www.ion.ucl.ac.uk/education/education_intro.htmG××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp+ Í\Í¿Ì¤9×‰HÚ 6http://www.ion.ucl.ac.uk/education/education_intro.htmG××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp, ÍÍÔ_9×‰HÚ !http://www.breakspearmedical.com/G××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp- Í\Íè@9×‰HÚ !http://www.breakspearmedical.com/G××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp. Í»Íè69×‰HÚ &http://healthdvds.co.uk/allergies.htmlG××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp/ ÍÍèÌÊ9×‰HÚ *http://healthdvds.co.uk/environmental.htmlG××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp0 Í-Í]P9×‰HÚ Shttp://www.publications.parliament.uk/pa/ld200607/ldselect/ldsctech/166/7022108.htmG××ÒÔÔÔrÒïïïÌ× ×Xo¶Íä°j÷ùcp1 ÍbÍrÍ¬9×‰HÚ Shttp://www.publications.parliament.uk/pa/ld200607/ldselect/ldsctech/166/7022108.htmG××ÒÔÔÔrÒïïïÌ× ×Xo¶Îä°j÷ùcpj ÍÔÍ´Í29×HÚ !http://www.breakspearmedical.com/××Ðˆ× ×Xo¶Îä°j÷ùcpi ÍëÌ³9×H¹http://www.investinme.org××Ðˆ×‰EÚJournal of IiME
Volume 2 Issue 1
www.investinme.org
PROFILES of PRESENTERS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
Dr John Chia
Dr Chia is an infectious disease specialist practicing in Torrance,
California, USA and has published research recently (Chronic fatigue
syndrome associated with chronic enterovirus infection of the
stomach) on the role of enteroviruses in the aetiolgy of ME/CFS â€“ an
area which has been implicated as one of the causes by a number
of studies. There are more than 70 different types of enteroviruses that
can affect the central nervous system, heart and muscles, all of
which is consistent with the symptoms of ME/CFS. By analyzing
samples of stomach tissue from 165 patients with CFS,
Dr. Chia's team discovered that 82% of these individuals had high levels of enteroviruses in their digestive
systems. Dr Chia's research may result in the development of antiviral drugs to treat the debilitating
symptoms of ME/CFS.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
T Thhee RRoollee ooff EEnntteerroovvii rruusseess IInnffeecctt iioonn iinn CCFFSS//MMEE
JOHN K. CHIA, M.D., ANDREW Y. CHIA, B.S.
EV Med Research, Lomita, CA.
The aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) remains elusive after
almost three decades of investigations. Enteroviruses (EV) are clear causes of acute respiratory and
gastrointestinal infections, with tropism for the central nervous system, muscles and heart. Chronic EV
infections were implicated as causes of CFS/ME by a few European investigators. Pioneer studies
detected EV RNA sequences in the blood of CFS/ME patients, but the results were not replicated by other
investigators. Observations from in vitro experiments and from animal models of EV infection, however,
clearly established a state of chronic persistence through the formation of double stranded RNA, similar to
findings reported in muscle biopsies of CFS/ME patients. Production of non-cytopathic viruses, with partial
deletion of the 5â€™ untranslated region of the viral genome, was recently reported in mice with chronic EV
myocarditis. Similar to the European studies, our recent data suggested that EV could be a major
trigger/cause among the diverse etiologies for CFS/ME. Our studies confirmed EV RNA sequence in the
peripheral blood leukocytes (PBL) taken from CFS/ME patients, and the relative frequency of RNA
detection correlated with the severity of symptoms. In addition, administration of Î±-interferon and ribavirin
or the combination of Î±-and Î³-interferon to CFS/ME patients with persistent EV infection resulted in
significant improvement of clinical symptoms and suppression of EV RNA. Symptomatic relapses and
reappearance of EV RNA in PBL after drug discontinuation lend support to the pathogenic role of EV in
these patients. Demonstration of EV capsid protein 1 in 82% of stomach biopsies taken from more than 250
CFS/ME patients, and the finding of EV RNA and the growth of non-cytopathic EV in the same tissues
provided compelling evidence for persistent EV infection. Renewed interest is needed to further study the
cause-effect relationship between viral persistence and clinical symptoms of CFS/ME. Controlled trials with
future antiviral drugs will likely provide the ultimate evidence for the pathogenic role of EV in CFS/ME.
Additional links for Dr Chia:
â€¢ John Chia, Chronic fatigue syndrome is associated with chronic enterovirus infection of the
stomach. J Clin Pathol. 2008 Jan;61(1):43-8. Epub 2007 Sep 13. PMID: 17872383 [PubMed -
indexed for MEDLINE]
Invest in ME (Charity Nr 1114035)
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×‰	Ú 7cassandra://S10vV4r3W7HF9oUt_kxVYmElPu888UEyQmQt1uaaVN8Í(¹Í`ÌÆÍ ×Xo¶Íä°j÷ùcp4×‰EÚþJournal of IiME
Volume 2 Issue 1
www.investinme.org
PROFILES/PRESENTATIONS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
Dr Irving Spurr
Dr Irving Spurr is a GP with 30 years in practice and has over 20 years of
experience of running ME/CFS diagnostic and treatment clinics. Dr
Spurr worked with the late Dr John Richardson on enteroviruses and
their implication in ME/CFS and has been a Trustee and the chairman
of the John Richardson Research Group for 20 years, and is currently
the chairman of the group.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
A GPâ€™s experience of Diagnosis and Treatment of ME/CFS
Dr Jean Monro
Dr. Jean Monro is the Medical Director of the Breakspear Hospital
and is an internationally recognised specialist in environmental
medicine.
Dr Monro is a Fellow of the American Academy of Environmental
Medicine, a Board Certified US examination. Dr Monro has
previously been Medical Advisor to Sanity and Medical Advisor to
the Coeliac Association.
In early 2007, Dr Monro was asked to be a witness for the House of
Lords' Select Committee on Science and Technology on allergy
treatments.
Dr Jean Monro has a background in hospital general medicine and worked at the National Hospital
for Nervous Diseases, Queen Square, London, researching migraine and multiple sclerosis. She
entered full-time practice in environmental medicine in 1982 and in 1988 established Breakspear
Hospital for allergy and environmental medicine
She has many publications to her name and regularly speaks at conferences worldwide.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
C Caassee SSttuuddiieess ooff DDiiaaggnnoossiiss aanndd TT rreeaattmmeenntt ss ooff MMEE//CCFFSS
Additional links for Dr Monro:
â€¢ http://www.breakspearmedical.com/
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Volume 2 Issue 1
www.investinme.org
PROFILES/PRESENTATIONS at the IiME
INTERNATIONAL ME/CFS CONFERENCE
Dr Judy Mikovits
Dr. Mikovits obtained her Ph.D. in Biochemistry and Molecular Biology from George
Washington University. Dr. Mikovits served as a senior scientist at Biosource International,
where she led the development of proteomic assays for the Luminex platform that is used
extensively for cytokine activity assessment in therapy development. She also served as Chief
Scientific Officer and VP Drug Discovery at Epigenx Biosciences, where she lead the
development and commercialization of DNA methylation inhibitors for cancer therapy and
of cell and array-based methylation assays for drug discovery and diagnostic development.
She is Research Director at the Whittemore Peterson Nevada CFS centre for Neuro-Immune
disorders and has co-authored over 40 peer reviewed publications that address
fundamental issues of viral pathogenesis, hematopoiesis and cytokine biology.
C Coonnffeerreennccee PPrreesseennttaatt iioonn
H Hooww SSuubb GGrroouuppiinngg WWii ll ll AAff ffeecctt RReesseeaarrcchh SStt rraatteeggiieess:: TToowwaarrddss aa
M Moolleeccuullaarr DDeeff iinnii tt iioonn ooff MMEE//CCFFSS
J. A. Mikovits, PhD1, V.C. Lombardi, PhD1, D. L. Peterson, MD1 and F.W. Ruscetti, PhD2. 1Whittemore
Peterson Institute, Reno, NV, USA 2Cancer Inflammation Program, National Cancer Institute (NCI),
Frederick MD. USA
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a heterogeneous disease with
unknown etiology. Previous studies have shown that viral specific immune responses and immune
abnormalities play critical roles in the pathogenesis of ME/CFS. The central problem in the
management of patients with CFS is the lack of biomarkers for patient stratification into subgroups
according to distinct immune responses, virus infections and neurological abnormalities. This situation
hinders both the diagnostic process and development of specific treatments. The overall goal of our
current research program is to define viral and host parameters that correlate with distinct disease
phenotypes. We have taken advantage of the latest technologies, which allow for multiplex analysis
from a single sample to better define a cohort with molecular signatures of immune response and
correlate those signatures with virus infections using a custom pan viral DNA microarray. We used
our clinically well defined cohort for serum cytokine and chemokine profiling using a bead based
suspension ELISA for 25 cytokines and chemokines on a Luminex platform in 90 patients and 120
healthy controls; pan custom viral expression microarrays in 40 patients done at two different time
points; profiling of innate immune defects including RNase L function and cytotoxic subset profiling
as well as correlating microbial induced gastrointestinal inflammation chronic immune activation.
Data will be also be presented on a subgroup of patients who developed a defect in functional T
cell subsets characterized by a clonal rearrangement of the T-cell receptor gamma (TCRg). These
patients form a distinct subgroup that is characterized by a significantly increased incidence of the
development of Non-Hodgkins Lymphoma (NHL).
Additional links for Dr Mikovits:
â€¢ http://lib.bioinfo.pl/auth:Mikovits,J
Invest in ME (Charity Nr 1114035)
Page 18
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Volume 2 Issue 1
www.investinme.org
EDUCATIONAL MATERIAL from IiME
IiME International ME/CFS Conference DVDs
Invest in ME have available the full presentations from both of the International ME/CFS Conferences in
London of 2007 and 2006. These professionally filmed and authored DVD sets each consist of four discs,
in Dolby stereo and in PAL (European) or NTSC (USA/Canada) format. Containing 9 Â½ hours (2007 DVD
set) and 6 hours (2006 DVD set) â€“ with all presentations plus interviews with ME presenters and news
stories from TV programmes.
These DVDs have been sold in over 20 countries and are available as educational tools â€“ useful for
healthcare staff (GPs, paediatricians, occupational therapists and others connected with the
treatment of ME), researchers, scientists, educational specialists, media, ME support groups and
people with ME and their carers/parents.
Full details can be found at http://www.investinme.org/InfoCentre%20Education%20Homepage.htm
or via emailing IiME at meconference@investinme.org.
Price Â£15 each (UK), Â£16 (Europe) and Â£17 (USA/Canada/Australia/New Zealand) - including p&p.
IiME International ME/CFS Conference 2008 DVD
We hope to have a DVD of the 2008 conference available for sale in June. The price is still to be
determined but will not be more than the 2007 or 2006 DVDs. Full details via emailing IiME at this
address - meconference@investinme.org.
Quotable Quotes on ME/CFS
This 42 page booklet has been compiled by Margaret
Williams and contains a plethora of quotes from ME
experts and from others relating to ME, ME/CFS, CFS/ME
and CFS. This is an invaluable document for researchers,
healthcare staff, politicians, media, ME support groups
and people with ME.
The booklet will aid those composing letters, performing
research, verifying analysis and for general reference
purposes. Price Â£3.50 + Â£1 postage/packing for UK
delivery (for Europe and USA/Canada/Australia/New
Zealand please email for costs of p&p).
http://tinyurl.com/5kk8b8
Invest in ME (Charity Nr 1114035)
Page 19
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Volume 2 Issue 1
www.investinme.org
International ME/CFS Conference
Agenda
Start Presenter
23rd May 2008
Presentation
08:00 Registration Coffee/tea morning refreshments
09:00 IiME
09:05 Professor Malcolm
Hooper
Welcome to the Conference
Introduction to the IiME International ME/CFS
Conference
09.15 Dr. Leonard Jason Case Definitions of ME/CFS
10:15 Dr. Jonathan Kerr
10:45 Coffee/tea Break
11:05 Dr. Martin Lerner A Twenty Year Journey to Understanding and
Treatment of the Chronic Fatigue Syndrome
Including A Longitudinal Study of Groups A and B
CFS Patients, 2000-2006
12:05 Dr. Julia Newton
12:35 Lunch
13:35 Dr. John Chia
14:35 Dr. Irving Spurr
15:10 Coffee/tea Break
15:30 Dr Jean Monro
Autonomic Dysfunction: Identification of
aetiologically Distinct Subject Groups within
ME/CFS
The Role of Chronic Enteroviruses in CFS/ME
A GPâ€™s experience of Diagnosis and Treatment of
ME/CFS
Case Studies of Diagnosis and Treatments for
ME/CFS
16:00 Dr. Judy Mikovits How Sub Grouping Will Affect Research Strategies
for ME/CFS: Towards a Molecular Definition of
ME/CFS
16:50 Professor Malcolm
Hooper & Speakers
17:30 Adjourn
Invest in ME (Charity Nr 1114035)
Page 20
Summary - and Plenary Session / Open forum /
Questions
Gene Expression in ME/CFS: a means of
Subtyping
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