drstockmann
SunFølg med på TV-programmet NRK Morgennytt i morgen. Programmet sendes på NRK1 mellom 06:30 – 10:00. Norges ME-forenings generalsekretær vil være i studio. Ett av temaene vil være XMRV.
ESME IVWZ
KBO: 0817.905.582
Dr. Mette Johnsgaard of The Lillestrom Health Clinic tested 24 patients and 3 healthy controls for XMRV using the culture test and found that 14 were positive.
Of the negative tests, 11 were then retested with serology tests and 5 more positive results were found, bringing the total to 19 of 27. One of the positive serology samples was from a healthy control.
The Lillestrom Health Clinic has now tested 80 patients and 50 are positive by either culture or serology test – a total of 62%. This is very close to the 67% of positive patient results reported by Mikovits, Lombardi, et al., in Science in Oct. 2009.
The tests were done in cooperation with VIPdx labs in the USA.
More information about these results will be given on the 28th of November in Oslo at the XMRV/MLV seminar with Dr. Judy Mikovits. Details of the seminar can been seen here: http://esme-eu.com/xmrv-mlv-seminar-oslo/category203.html Register by writing to: post@esme-eu.com
The Lillestrom Health Clinic is currently cooperating with many international ME experts in order to share knowledge about testing, treatment and research. Dr. Johnsgaard is also cooperating with international experts who specialize in infectious diseases (Borna virus), retrovirology and biotoxic illnesses (Shoemaker), a probable secondary phenomenon in ME.
In November 2010, the clinic will launch a large international research project on Human Gammaretrovirus and ME.
In Aug. 2010, Dr. Johnsgaard was interviewed by NRK (Norwegian National Broadcasting) where she confirmed the two first positive XMRV patients in Norway. With that interview Dr. Johnsgaard opened the public debate about ME and XMRV in the Norwegian medical and political environment. The same day, Norwegian politicians and doctors reacted positively in a follow-up interview on NRK (see links below)
Virusfunn gir nytt håp for ME-pasienter: http://www.nrk.no/nyheter/norge/1.7257026
Another link with health minister Laila Dåvøy – Regjeringen bør gjøre mer for ME-pasienter : http://www.nrk.no/nyheter/norge/1.7259180
Lillestrom Helseklinikken is situated just outside of Oslo, Norway and specializes in the treatment of ME and other chronic diseases. They have recently begun treating patients from outside of Scandinavia.
Kind regards,
ESME Team
You are kindly invited to an XMRV/MLV seminar to be held on the 28th of
November, 2010 in Oslo, Norway. Come and hear the newest information about
this interesting family of viruses.
The speakers will be:
· Dr Judy Mikovits, Research Director for the Whittemore Peterson
Institute (WPI) for Neuro-Immune Disease, Nevada, USA
· Dr Mette Johnsgaard, Medical Director of Lillestrom Helseklinikk -
Center for the Treatment of Chronic Diseases, Lillestrom, Norway.
In the final hour of the seminar, there will be an extended question/discussion
round. Panel: Dr. Mikovits, Prof. Dr. Saugstad and Dr Johnsgaard. Moderator:
Prof. Dr. Ola Saugstad, Oslo University Hospital, Rikshospitalet
The seminar will be held in English and is open to all types of healthcare
professionals, as well as the public. Patients, please invite your doctor, nurse
or other healthcare providers. Politicians and journalists are also very welcome.
The program:
14:30 – 15:00 Registration, coffee/tea
15:00 – 15:15 Ms. Bieke Verleys, ESME: “The importance of the XMRV story in
general and why research is important for patients”
15:15 – 16:15 Dr. Judy Mikovits: “XMRV and other MLV’s in ME/CFS: Latest
update on testing, results, treatments and research”
16:15 – 16:45 Coffee break
16:45 – 17:30 Dr. Mette Johnsgaard: “Norwegian situation: testing, results,
treatment and research”
17:30 – 17:40 Break: Questions for the panel should be delivered in writing to
Prof. Dr. Saugstad during this time.
17:40 – 19:00 Question/discussion round: Dr. Mikovits, Dr. Johnsgaard, Prof. Dr.
Saugstad,
Place: OlavsGård Quality Hotel, Hvamstubben 11, 2013 Skjetten, Norway
Link to map: http://www.choicehotels.no/choice/en/skjetten-hotel-quality-NO040-en?
tab=0&cid=21351
Date: 28th of November, 2010
Time: 15:00 – 19:00
Cost: 100 NOK (13 Euro) to be paid at the reception desk.
The seminar is being organized by ESME – European Society for ME. To register,
please write to ESME at: post@esme-eu.com and give us your name, country
and occupation. We also ask that you specify if you are a patient or the family
member of a patient.
You will receive a confirmation mail as proof of your registration. Please present
this at the reception desk at the seminar.
The registration deadline is 15/11/2010. Seating is limited, so please register now
to ensure your place.
Kind regards,
ESME team
Her ligger opptaket av webcasten fra 1st International Workshop on XMRV: Q&A Wrap-up Session.
Arkivert i: KDM, Konferanser, M.E., M.E. i media, M.E. på Youtube, M.E.-behandling i Belgia, M.E.-lenker, ME-blogger, XMRV
Hei 
Ja, visste at det kom noke spennande 
http://www.me-behandling.com/forum/viewtopic.php?f=29&t=1318#p10774
og
http://www.hetalternatief.org/XMRV%202010%20737.htm
Dette er frå Frank Twisk si side (nederlender) men ser du nederst på sida, så finn du den engelske teksten. Han har sett opp resultata på studien veldig tydelig, og utheva det som er viktigast.
“RESULTS ( Prof.dr. med. Kenny De Meirleir og co)
The number of CD3+ T cells and CD57+ lymphocytes
was significantly lower
compared to the reference values.
C4a and elastase activity
were significantly higher
in the XMRV positive CFS population.
Soluble CD14
which codes for LPS in the plasma
was significantly higher
at p < 0.001 compared to the reference population.
XMRV positive CFS patients
had significantly higher
serum IL-10, MCP-1 , MIP-1 beta and IL-8 levels.
Serum levels of other cytokines
(IL-12, IL-1 beta, IL-6, TGF-beta and alpha-TNF)
were not statistically different
compared to the reference values.
Other lymphocyte subsets
showed
no difference from the reference in the XMRV positive patients.
Stool lgA and lgG3
were statistically lower
in the XMRV positive patients.
CONCLUSION
The results of this preliminary study in a limited number of subjects
show that XMRV positive CFS patients have
lower than normal levels of lymphocytes and low numbers of CD57+ lymphocyte subtype
as in HIV.
The absolute numbers of CD4+ and CD8+T cells
were not statistically different from the reference values,
but expanding this study to a larger number of patients is necessary
to make solid statements in this regard.
XMRV-positive CFS patients have an activated innate immune system
(elastase activity, increased C4a)
which could be related to microbial translocation
as their sCD14 is significantly higher than expected;
sCD14 strongly correlates with plasma LPS 1.
Low stool IgA (in some of these 16 patients it was undetectable)
also points towards a dysfunctional mucosa-associated lymphomal tissue (MALT)
in XMRV-positive CFS patients.
Furthermore we found that
these patients as a group have lower than normal lgG3 serum levels.
The cytokines IL-8, IL-10, MCP-1 and MIP-1beta are increased
and might constitute a biological signature for the viral infection.
These observations and others
(unpublished data on serum levels of LPS in CFS patients)
provide evidence for
microbial translocation
being part of
the pathophysiology
of XMRV positive patients.”
Mvh Sun
Arkivert i: M.E. i media, XMRV | Stikkord: forskere, M.E., University of Dundee, virus
Chronic fatigue syndrome sufferers cannot donate blood
by Nikki Abela Mercieca
Chronic fatigue syndrome sufferers are unable to donate blood as studies have raised the possibility that the condition may be linked to a virus.
“We have been deferring donors permanently if they have a history of Myalgic Encephalomyelitis (ME). The reason is not only due to the theoretical risk of viral transmission but also due to donor safety,” the medical director at the National Blood Transfusion Services, Alex Aquilina, said.
The health authorities started implementing such a policy earlier this year. Blood banks across the world are increasingly taking the same measures after new research reinforced a link between ME and the virus.
The condition, also known as post-viral fatigue syndrome, displays fatigue as its main symptom but also gives rise to a wide range of other symptoms, which leave patients suffering from different disabilities. The problem with ME, however, is that there is no test to diagnose it and symptoms can vary, which leaves doctors reluctant to diagnose it.
“If a person who recovered from ME gave blood and then developed a recurrence soon after, this could be blamed on the donation. Since it will not reduce the number of donations very much we felt it was wise to make this decision,” Dr Aquilina said, describing ME as a relapsing remitting condition. The measures were taken according to the precautionary principle of blood donation, he said.
“Donors have always been deferred if they do not feel perfectly well, including if they feel tired. Since the possibility of a viral involvement in ME, a permanent deferral has been put in place since early this year,” he said.
Although the cause of ME is not yet known, a 2009 study had linked a virus to the condition. Although the findings do not prove the virus causes ME, the scientists found evidence of a virus, otherwise known as XMRV, in a higher number of ME patients than in healthy blood donors.
Four follow-up studies did not find such association. However, another study published last month, which also did not find the same virus, but established similar gene sequences of XMRV in 87 per cent of ME patients and seven per cent of healthy blood donor controls. This has raised questions about the safety of blood donations in view of the link to the condition.
A number of national blood banks have discouraged or prohibited people diagnosed with ME from donating blood. These include the Canadian Blood Services, the New Zealand Blood Service, the Australian Red Cross Blood Service and the American Association of Blood Banks. In the UK, people with a history of ME will be permanently deferred from donating blood as from November 1.
See page 4 of The Times of Malta
Director of NIH to open XMRV Conference
By XMRV Global Action
Sat Sept 4 7:03pm
Even bigger news on the XMRV/Murine Leukemia Related Virus front: Francis Collins, Director of the National Institutes of Health (overseeing an annual budget of ~$31+ Billion) will be giving the opening workshop at the 1st International XMRV conference.
He will be joined by Stuart LeGrice, head of the Center of Excellence in HIV/AIDS and cancer virology at the National Cancer Institutes, who was famously quoted in the Wall St. Journal last October: “NCI is responding (to XMRV) like it did in the early days of HIV.“
As patient bloggers have been commenting, this suggests the NIH and indeed NCI are taking XMRV/MLV very seriously indeed.
With Francis Collins’ very visible participation at this conference, the speculation (emphasis on speculation) is that one or both of the following might have happened:
• XMRV/MLV’s have been proven (behind the scenes) to cause aggressive familial prostate cancer and/or ME/CFS/Mantle Cell Lymphoma, and possibly other neuro-immune disorders
• XMRV/MLV’s have been confirmed to be transmissible in blood products
Given the early prevalence rates in healthy blood donors of 3-7% cited by Dr Harvey Alter (discoverer of the Hep-C virus), this ultra-high-level attention is perhaps not surprising. Plus there is the element of potential scandal, since ME/CFS patients have been complaining of profound viral symptoms (and dropping dead from viral cardiomyopathies and rare lymphomas) for decades – while being derided as hypochondriacs.
With the personal attention of the NIH director, will research funds will be prioritized to XMRV/MLV research and clinical trials?
The program can be downloaded from here.
Arkivert i: XMRV
Den 7.-8. september avholdes den første internasjonale workshop-en på XMRV ved National Institutes of Health i Bethesda, Maryland, USA. En veldig god og informativ nettside for workshop-en finner du her. Det er stor interesse for denne workshopen og den er allerede overtegnet.
På onsdagen (den 8.) vil det bli avholdt en webcast (sending på Internett) med en spørsmål og svar-runde. Tidspunktet for denne sendingen er kl 17:15 lokaltid i Washington DC, noe som tilsvarer kl 23:15 i Norge. Denne sendingen vil være tilgjengelig som arkivfil etter direktesendingen.
“This Web cast Q&A wrap-up session will touch on the latest developments in the field in order to evaluate the state of our knowledge, address controversies, and develop an understanding between experts that will help direct future research.”
Virus link with chronic fatigue syndrome resurfaces
* 12:47 25 August 2010 by Andy Coghlan
The discovery of mouse virus fragments in cells from people with chronic fatigue syndrome has reinforced earlier claims that they may cause the condition.
The origins and even the existence of chronic fatigue syndrome have been widely debated for many years. Some claim that its symptoms, including cramps, listlessness and lethargy, have psychological causes, but the search for an infectious agent has continued.
The latest findings have revived speculation that mouse viruses may be responsible for the condition – although four earlier studies have failed to find traces of such viruses in samples from patients.
Confusingly, the gene fragments identified in the new study are not from the same strain of mouse virus – the xenotropic murine leukaemia virus-related virus (XMRV) – identified as a possible cause a year ago.
Instead, Shyh-Ching Lo of the Food and Drug Administration in Bethesda, Maryland, and colleagues found that blood samples from 32 of 37 people with chronic fatigue syndrome contained “polytropic” murine leukaemia virus-related fragments, compared with only three of 44 healthy blood donors.
Versatile virus
The crucial distinction is that XMRV won’t infect mouse cells – despite being a variant of a virus that originated in mice – whereas the “polytropic” variant is equally capable of infecting mouse cells and cells from other animals, including humans.
“The message is that murine leukaemia viruses, whether XMRV or polytropic MLVs, are strongly associated with the cases of chronic fatigue syndrome tested by us and the cases tested last year by the Whittemore Peterson Institute [in Reno, Nevada],” says Harvey Alter of the National Institutes of Health in Bethesda, Maryland, and the senior author of the new study.
Alter says that just as there are several viruses that cause similar symptoms of hepatitis, so there may be several MLVs causing chronic fatigue syndrome.
Repetition problem
The other puzzle is why four other studies published over the past year drew a blank when they hunted for traces of MLV-related viruses in blood from patients.
Bill Switzer of the Centers for Disease Control and Prevention, who headed one of the four studies, says that a recent quality-control trial has ruled out differences in the testing procedures as a possible explanation. Several labs, including Lo’s, all received identical samples to test. “All the labs had the same results, so it’s not the assays,” says Switzer.
Another possibility is that mouse viruses vary from place to place. This might explain why no mouse viruses have yet been found in European patients.
Myra McClure of Imperial College London, who headed one of the two British studies that failed to identify the virus, says that Lo and his colleagues could have done two further tests that would have strengthened the evidence that the patients’ cells contained live, infectious viruses.
By growing patients’ cells in the lab alongside healthy cells, Lo’s team could have proved that the virus could cross-infect uninfected neighbouring cells. Also, they could have screened blood for antibodies to the mouse viruses, which also would have shown that the viruses were infectious. “It would have been more reassuring to have those results too,” she says.
Journal reference: Proceedings of the National Academy of Sciences, DOI: DOI: 10.1073/pnas.1006901107
