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Excerpts of the
XMRV-conference in
Oslo on 28/12/2010
Lecture by Dr. Judy Mikovits, Whittemore
Peterson Institute
Dr. Mikovits began by acknowledging several other
famous researchers and telling about her
collaborations with them, including several
researchers at the National Cancer Institute, the
Cleveland Clinic, the SAIC and, of course, the
Whittemore Peterson Institute.
Dr. Mikovits proceeded by explaining how the novel
retrovirus was found in prostate cancer patients in
2006 and 2007, and named XMRV Xenotropic Murine
Leukemia virus-Related Virus.
She showed how the infectious clone was
constructed and sequenced and found to be a novel
human gammaretrovirus.
Dr. Mikovits then showed how ME/CFS patients have
several inflammatory sequelae including antiviral
enzyme dysfunction (RNase L), decreased NK cell
number and function, increase in activated T cells
and increases in inflammatory cytokines/chemokines.
She believes that these dysfunctions might be
explained by an ongoing retroviral infection and
proposed that these patients could be infected with
XMRV.
Dr. Mikovits went through some of the technical
information on how they were able to detect XMRV
proteins and positive antibodies leading up to the
October 9th , 2009 Science article.
She also gave the audience a little insight into newer
detection techniques that are currently being
developed.
Dr. Mikovits showed possible reasons for the
disparity in XMRV detection, including patient
selection in heterogeneous diseases, variation in
methods, possibility of scattered world-wide
distribution (as in HTLV1), higher levels of sequence
diversity, looking for retrovirus in blood, prostate
cancer not being the in vivo reservoirs, and false
positives due to PCR contamination with mouse
cells.
She showed that infectious XMRV and antibodies
were found in samples from UK ME/CFS patients and
in Norwegian patients. The Norwegian study is
ongoing and Dr. Mikovits is cooperating on it with Dr.
Johnsgaard of the Lillestrrm Clinic. She then went on
to explain the finding of 2 strains, XMRV and PMRV,
and the probability that both can be present at the
same time in the same patient.
Dr. Mikovits showed a slide that made it obvious
that the virus has a simpler make-up than HIV and
HTLV1.
Interestingly, the LTR is stimulated by hormones,
proving why the LNCaP cell line is the best choice. It
might also be a possible clue to pathogenesis as
hormones and inflammation might increase the
replication of XMRV.
HTLV1, a complex deltaretrovirus is not present in
Europe or the US, but does exist in many individuals
in other countries and carries a 10% lifetime risk of
developing cancer and inflammatory syndromes.
XMRV is probably more similar to HTLV than to HIV.
HTLV is asymptomatic in the majority of individuals.
Dr. Mikovits ended her talk by showing some
cytokine/chemokine profiles found in adult T cell
lymphoma/leukemia and comparing them to many of
the same findings in patients with XMRV.
ESME in cooperation with Dr. Mette Johnsgaard
Medical Reporter of the ESME Think Tank
````````
Excerpts of the
XMRV-conference in
Oslo on 28/12/2010
Lecturer of Dr. Mette Johnsgaard,
Lillestrom Helseklinikk, Center for
Treatment of Chronic Diseases:
Dr Mette Sophie Johnsgaard opened her speech by
introducing Lillestrrm Helseklinikk, Center for
Treatment of Chronic Diseases, where she is medical
director.
They see approximately 600 patients per month,
most Norwegian patients, but also some Danish and
Swedish patients visit the clinic, and lately patients
have been contacting them also from the Continent.
Today 3 physicians work at Lillestrrm, mainly with
ME/CFS patients.
Dr Johnsgaard showed the audience the impressive
list of her support group. Together with the two
other physicians at the clinic, she has traveled
extensively the last year, visiting several well known
ME/CFS experts in order to learn as much as possible
on diagnosis and treatment in patients with ME/CFS.
This has enabled the doctors to find the best
possible treatment plan for every individual patient.
She continued talking about the patient group in
focus, especially what triggers disease and the
amount of reactivating viruses and chronic infections,
as this is information that can be important for
treatment and also give a better understanding of
the disease.
She also mentioned gastrointestinal disorders
including inflammation, bacterial overgrowth,
parasite, inflammation and food intolerances.
Both the chronic and reactivating infections and the
bowel inflammation and persistent parasite
inflammations are common in other retroviral
disorders, making the XMRV story plausible.
Dr Johnsgaard honestly explained how a normal
Norwegian GP has very little knowledge on
retroviruses; neither HTLV nor HIV is often seen in a
GPs office.
This makes the connection between retrovirus and
ME/CFS difficult to see, even after the positive
studies showed possible connection to the disease.
She told the audience how she was reluctant to send
samples testing for XMRV virus until more was known
on the matter, however, as patients constantly kept
putting pressure on the clinic, they finally decided to
send samples to VIPdx, a CLIA certified laboratory.
The positive samples came as a big surprise to both
doctors and some patients, and the need for
Norwegian research seemed obvious.
She continued explaining how many samples where
positive in cell culture and/or serology, and showed
connections between Karnofsky score and positive
samples. The material is of yet not published.
Dr Johnsgaard showed us a couple of patient
examples.
2 co-workers got sick about the same time with a
hard influenza-like disease. One developed a chronic
neurological pain disorder but no exhaustion, the
other a classical ME/CFS. They are both XMRV
positive.
A patient develops ME/CFS after an accident, but had
bouts of chronic sinusitis and tendinitis years before
the accident. The house proved to have molds and
she could pin point many symptoms having started
as she moved into the house.
After renovating the house, she has experienced a
great improvement on biotoxin therapy as used by
Dr Ritchie Shoemaker, with whom Dr Johnsgaard is in
close contact with. The patient does however also
have positive XMRV.
Here is the conclusion to the Dr.
Johnsgaard's experience at Lillestrrm
helseklinikk so far:
- Many different triggers give the same
disease
- Chronic infections and reactivated
viruses are common and need treatment
- Many patients have gastrointestinal
disorders that can be treated
- Many patients have biotoxin disease that
can be treated
- Clusters of ME/CFS are seen in families
and areas
- Partners do and do not get sick
- There is an overweight of cancer and
autoimmune diseases in the family of
patients with ME/CFS
- Varying effect on treatment protocols
makes it important to have individual, tight
follow up
- Many patients get better after treatment
up to a certain point, pointing to the
possibility of treating secondary effects in
a retroviral infection.
What can be treated to day:
- Chronic / reactivated infections
- Gut inflammation
- Biotoxin disease
- Inflammation
- Immune pathologies, to a certain
degree
It is too soon to try anti retroviral treatment. More
research is needed.
Dr Johnsgaard continued her speech talking about
the ongoing research: "NO-CFS, stage 1, confirmatory
study for the detection of gamma retrovirus related
sequences".
The research is being conducted in cooperation with
the WPI, USA and the San Raffaele Scientific
Institute in Milan, Italy.
She also mentioned several planned research
projects planned for 2011, including research in
biotoxin disease in cooperation with Dr. Ritchie
Shoemaker and bigger international studies for
human gammaretrovirus.
Dr Johnsgaard's speech was constantly pointed back
to the patients, and at this point she talked about
two patients she has been treating.
The first was a young girl who was extremely sick
without any offered treatment nor explanation for her
ME/CFS symptoms.
After one year of treatment she is back to normal
life.
The other, a young boy has been bedridden for years,
mysteriously extremely ill. He is so sick that he
cannot interact with even his parents without it
being a great strain for him. He has told his mother
he plays in the garden with his friends inside his
head. That is all he can manage.
No treatment has had any effect so far, and Dr
Johnsgaard pointed out that the extremely ill
patients are one of the major reasons she feels
research is so important.
He is also one of the reasons why it is so
important to ban blood donations from ME/CFS
patients. If there is the slightest chance that a
transmissible agent can lead to such a debilitating
disease, one should stop any possible route of
transmission.
As a summary Dr Johnsgaard showed off
the following slide:
ME is a serious disease. It reduces life
function more than most other diseases
seen in a GPs office. It is also a great
burden on society.
We know through research that ME/CFS
patients have reactivated viruses and
chronic bacterial infections
We know through research that ME/CFS
patients have immune pathologies
Concerning retrovirus:
We know XMRV is a novel human gamma
retrovirus
We know HTLV is associated with cancer
and inflammatory diseases
We know HIV is associated with severe
immune deficiencies
We believe XMRV is related to certain
types of cancer
We believe XMRV is related to a chronic
immune inflammation
We believe XMRV is only one of several
gamma retroviruses that will be isolated
over the next years, opening up for the
possibility for explaining different degrees
of severity in patients with ME/CFS
We need more research, and for research
we need funding
We need cooperation between
researchers
Relevant research has to benefit patients
without delay
We need an updated patient information
channel
Lillestrrm helseklinikk will continue to treat what is
possible, and to follow up research:
www.lillestromhelseklinikk..no
``````
Excerpts of the
XMRV-conference in
Oslo on 28/12/2010
Lecture by Dr. Judy Mikovits, Whittemore
Peterson Institute
Dr. Mikovits began by acknowledging several other
famous researchers and telling about her
collaborations with them, including several
researchers at the National Cancer Institute, the
Cleveland Clinic, the SAIC and, of course, the
Whittemore Peterson Institute.
Dr. Mikovits proceeded by explaining how the novel
retrovirus was found in prostate cancer patients in
2006 and 2007, and named XMRV Xenotropic Murine
Leukemia virus-Related Virus.
She showed how the infectious clone was
constructed and sequenced and found to be a novel
human gammaretrovirus.
Dr. Mikovits then showed how ME/CFS patients have
several inflammatory sequelae including antiviral
enzyme dysfunction (RNase L), decreased NK cell
number and function, increase in activated T cells
and increases in inflammatory cytokines/chemokines.
She believes that these dysfunctions might be
explained by an ongoing retroviral infection and
proposed that these patients could be infected with
XMRV.
Dr. Mikovits went through some of the technical
information on how they were able to detect XMRV
proteins and positive antibodies leading up to the
October 9th , 2009 Science article.
She also gave the audience a little insight into newer
detection techniques that are currently being
developed.
Dr. Mikovits showed possible reasons for the
disparity in XMRV detection, including patient
selection in heterogeneous diseases, variation in
methods, possibility of scattered world-wide
distribution (as in HTLV1), higher levels of sequence
diversity, looking for retrovirus in blood, prostate
cancer not being the in vivo reservoirs, and false
positives due to PCR contamination with mouse
cells.
She showed that infectious XMRV and antibodies
were found in samples from UK ME/CFS patients and
in Norwegian patients. The Norwegian study is
ongoing and Dr. Mikovits is cooperating on it with Dr.
Johnsgaard of the Lillestrrm Clinic. She then went on
to explain the finding of 2 strains, XMRV and PMRV,
and the probability that both can be present at the
same time in the same patient.
Dr. Mikovits showed a slide that made it obvious
that the virus has a simpler make-up than HIV and
HTLV1.
Interestingly, the LTR is stimulated by hormones,
proving why the LNCaP cell line is the best choice. It
might also be a possible clue to pathogenesis as
hormones and inflammation might increase the
replication of XMRV.
HTLV1, a complex deltaretrovirus is not present in
Europe or the US, but does exist in many individuals
in other countries and carries a 10% lifetime risk of
developing cancer and inflammatory syndromes.
XMRV is probably more similar to HTLV than to HIV.
HTLV is asymptomatic in the majority of individuals.
Dr. Mikovits ended her talk by showing some
cytokine/chemokine profiles found in adult T cell
lymphoma/leukemia and comparing them to many of
the same findings in patients with XMRV.
ESME in cooperation with Dr. Mette Johnsgaard
Medical Reporter of the ESME Think Tank
````````
Excerpts of the
XMRV-conference in
Oslo on 28/12/2010
Lecturer of Dr. Mette Johnsgaard,
Lillestrom Helseklinikk, Center for
Treatment of Chronic Diseases:
Dr Mette Sophie Johnsgaard opened her speech by
introducing Lillestrrm Helseklinikk, Center for
Treatment of Chronic Diseases, where she is medical
director.
They see approximately 600 patients per month,
most Norwegian patients, but also some Danish and
Swedish patients visit the clinic, and lately patients
have been contacting them also from the Continent.
Today 3 physicians work at Lillestrrm, mainly with
ME/CFS patients.
Dr Johnsgaard showed the audience the impressive
list of her support group. Together with the two
other physicians at the clinic, she has traveled
extensively the last year, visiting several well known
ME/CFS experts in order to learn as much as possible
on diagnosis and treatment in patients with ME/CFS.
This has enabled the doctors to find the best
possible treatment plan for every individual patient.
She continued talking about the patient group in
focus, especially what triggers disease and the
amount of reactivating viruses and chronic infections,
as this is information that can be important for
treatment and also give a better understanding of
the disease.
She also mentioned gastrointestinal disorders
including inflammation, bacterial overgrowth,
parasite, inflammation and food intolerances.
Both the chronic and reactivating infections and the
bowel inflammation and persistent parasite
inflammations are common in other retroviral
disorders, making the XMRV story plausible.
Dr Johnsgaard honestly explained how a normal
Norwegian GP has very little knowledge on
retroviruses; neither HTLV nor HIV is often seen in a
GPs office.
This makes the connection between retrovirus and
ME/CFS difficult to see, even after the positive
studies showed possible connection to the disease.
She told the audience how she was reluctant to send
samples testing for XMRV virus until more was known
on the matter, however, as patients constantly kept
putting pressure on the clinic, they finally decided to
send samples to VIPdx, a CLIA certified laboratory.
The positive samples came as a big surprise to both
doctors and some patients, and the need for
Norwegian research seemed obvious.
She continued explaining how many samples where
positive in cell culture and/or serology, and showed
connections between Karnofsky score and positive
samples. The material is of yet not published.
Dr Johnsgaard showed us a couple of patient
examples.
2 co-workers got sick about the same time with a
hard influenza-like disease. One developed a chronic
neurological pain disorder but no exhaustion, the
other a classical ME/CFS. They are both XMRV
positive.
A patient develops ME/CFS after an accident, but had
bouts of chronic sinusitis and tendinitis years before
the accident. The house proved to have molds and
she could pin point many symptoms having started
as she moved into the house.
After renovating the house, she has experienced a
great improvement on biotoxin therapy as used by
Dr Ritchie Shoemaker, with whom Dr Johnsgaard is in
close contact with. The patient does however also
have positive XMRV.
Here is the conclusion to the Dr.
Johnsgaard's experience at Lillestrrm
helseklinikk so far:
- Many different triggers give the same
disease
- Chronic infections and reactivated
viruses are common and need treatment
- Many patients have gastrointestinal
disorders that can be treated
- Many patients have biotoxin disease that
can be treated
- Clusters of ME/CFS are seen in families
and areas
- Partners do and do not get sick
- There is an overweight of cancer and
autoimmune diseases in the family of
patients with ME/CFS
- Varying effect on treatment protocols
makes it important to have individual, tight
follow up
- Many patients get better after treatment
up to a certain point, pointing to the
possibility of treating secondary effects in
a retroviral infection.
What can be treated to day:
- Chronic / reactivated infections
- Gut inflammation
- Biotoxin disease
- Inflammation
- Immune pathologies, to a certain
degree
It is too soon to try anti retroviral treatment. More
research is needed.
Dr Johnsgaard continued her speech talking about
the ongoing research: "NO-CFS, stage 1, confirmatory
study for the detection of gamma retrovirus related
sequences".
The research is being conducted in cooperation with
the WPI, USA and the San Raffaele Scientific
Institute in Milan, Italy.
She also mentioned several planned research
projects planned for 2011, including research in
biotoxin disease in cooperation with Dr. Ritchie
Shoemaker and bigger international studies for
human gammaretrovirus.
Dr Johnsgaard's speech was constantly pointed back
to the patients, and at this point she talked about
two patients she has been treating.
The first was a young girl who was extremely sick
without any offered treatment nor explanation for her
ME/CFS symptoms.
After one year of treatment she is back to normal
life.
The other, a young boy has been bedridden for years,
mysteriously extremely ill. He is so sick that he
cannot interact with even his parents without it
being a great strain for him. He has told his mother
he plays in the garden with his friends inside his
head. That is all he can manage.
No treatment has had any effect so far, and Dr
Johnsgaard pointed out that the extremely ill
patients are one of the major reasons she feels
research is so important.
He is also one of the reasons why it is so
important to ban blood donations from ME/CFS
patients. If there is the slightest chance that a
transmissible agent can lead to such a debilitating
disease, one should stop any possible route of
transmission.
As a summary Dr Johnsgaard showed off
the following slide:
ME is a serious disease. It reduces life
function more than most other diseases
seen in a GPs office. It is also a great
burden on society.
We know through research that ME/CFS
patients have reactivated viruses and
chronic bacterial infections
We know through research that ME/CFS
patients have immune pathologies
Concerning retrovirus:
We know XMRV is a novel human gamma
retrovirus
We know HTLV is associated with cancer
and inflammatory diseases
We know HIV is associated with severe
immune deficiencies
We believe XMRV is related to certain
types of cancer
We believe XMRV is related to a chronic
immune inflammation
We believe XMRV is only one of several
gamma retroviruses that will be isolated
over the next years, opening up for the
possibility for explaining different degrees
of severity in patients with ME/CFS
We need more research, and for research
we need funding
We need cooperation between
researchers
Relevant research has to benefit patients
without delay
We need an updated patient information
channel
Lillestrrm helseklinikk will continue to treat what is
possible, and to follow up research:
www.lillestromhelseklinikk..no
``````
