Re: Fw: Summary of the Oslo XMRV-seminar, November 28th, 2010

[Guest guest]

I suppose it's good for awareness.Unfortunately taking anti virals is generally

useless.

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> From: ESME European Society for ME <post@...>

> Subject: Summary of the Oslo XMRV-seminar, November 28th, 2010

> " ESME European society of ME " <post@...>

> Date: Tuesday, December 14, 2010, 6:11 AM

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> Excerpts of the XMRV-conference in Oslo on 28/12/2010

> Lecture by Dr. Judy Mikovits, Whittemore 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 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.

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> 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.

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> 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. sgaard of the Lillestrøm 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.

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> 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 sgaard †" Medical Reporter of the ESME

Think Tank 

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> Excerpts of the XMRV-conference in Oslo on 28/12/2010

> Lecturer of Dr. Mette sgaard, Lillestrom Helseklinikk, Center for

Treatment of Chronic Diseases:

> Dr Mette Sophie sgaard opened her speech by introducing Lillestrøm

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 Lillestrøm, mainly with ME/CFS patients.

> Dr sgaard 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.

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> 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 sgaard 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 sgaard 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

sgaard is in close contact with. The patient does however also have positive

XMRV.

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> Here is the conclusion to the Dr. sgaard’s experience at Lillestrøm

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 sgaard continued her speech talking about the ongoing research:

“NO-CFS, stage 1, confirmatory study for the detection of gamma retrovirus

related sequencesâ€. 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 sgaard’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 sgaard 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.

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> As a summary Dr sgaard 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 

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> Lillestrøm helseklinikk will continue to treat what is possible, and to

follow up research.

> www.lillestromhelseklinikk..no

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