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Kurze Einführung zur Entdeckung des XMRV - Virus

Sie haben noch nichts vom XMRV-Retroviurs gehört? Dann sind Sie hier richtig: kleine Einführung

Einen Elefanten mit gelbem Rüssel sich vorzustellen, ist nicht schwer. Jedoch kranke und bettlägrige Menschen mit CFS ernst zu nehmen, umso mehr!

In der Schweiz sind es ca. 20'000 Menschen, und immer noch sind die Ärzte rar, die sie ernst nehmen. Wieso das? Es gibt eine klare Beschreibung des Krankheitsbildes, doch immer noch keine medizinische Tests, die klar und bündig sagen, der/die hat CFS.

Das
Unglaubliche kam im Oktober 2009; das Pressecommuniqué vom Whittemore Peterson Institute, USA. Dort konnten sie in 95% der Blutproben von CFS-Patienten Retroviren mit dem Namen XMRV nachweisen. Diese Forschungsergebnisse wurden u.a. im Science, WPI-Institute, Cancer Institute, und vielen anderen veröffentlicht. Ferner wurde eine live Übertragung aus Amerika eines Gesprächs zwischen Forschern, Betroffenen und wichtigen Funktionären aus dem Gesundheitswesen direkt übertragen.

Diese Nachricht muss nun wissenschaftlich durch eine
Doppelstudie belegt werden. In der Universität von Upsala, Schweden hat man damit begonnen und wir erwarten die Resultate bis spätestens diesen Sommer.

Was ist einfach gesagt ein
Retrovirus? Die Retroviren sitzen nicht nur auf der Zelle – wie bei einer normalen viralen Infektion, nein sie nisten sich in die Zelle ein und attackieren auch den Zellkern, bis zur Veränderung der DNA. Bis anhin gab es nur zwei Krankheiten, die durch Retroviren verursacht wurden, nämlich HIV/AIDS und Leukämie.

Ob der XMRV-Virus der Urheber des CFS ist oder nur ein Mitspieler mit anderen Faktoren, auch dies wird erforscht werden müssen. Ob die Medikamente, die bei der Erkrankung AIDS eingesetzt werden, um das Wachstum der Retroviren zu blockieren, auch bei XMRV in Frage kommen, auch damit befassen sich schon heute einige Pharma-Institute.

Zur Folge hat es, dass in
Wien ein Zentrum zur Blutuntersuchung im Aufbau ist, in Deutschland eine Weisung zur Arbeit mit dem XMRV-Virus im Labor herausgegeben wurde, das Europa Parlament neue Anweisung gab, das Robert Koch Institut in Deutschland in Zusammenarbeit mit der Charité eine Studie macht.

Wollen Sie mehr und umfassend über alles was seit Oktober geschehen ist, lesen, empfehlen wir Ihnen, die Zusammenfassung von Regina Clos,
hier und hier.

Zusammenfassend: es braucht Geduld – und es kann sich immer noch herausstellen, dass es schlussendlich nur ein Elefant mit gelbem Rüssel war, der nicht grosse Wirkung auf unsere jetzige Situation hat. Doch sollte sich in der Doppelstudie herausstellen, dass die ersten Ergebnisse sich nochmals bestätigen, dann wird sich die Welt langsam aber sicher ändern!

Wir werden Sie auf diesen Seiten über alles Neue diesbezüglich informieren.
Edit Caption Here

Alle vorhergehenden Monate über das XMRV - Virus

Forschungsstudie des Whittemore Peterson Instituts
Nehmen Sie an der Forschungsstudie teil, die Informationen zu Forschungszwecken nutzt.
Das Whittemore Peterson Institut macht eine Studie mit CFS-Patienten, um die Forschung des XMRV-Virus voranzutreiben. Selbstverständlich sollte man das Formular auf Englisch ausfüllen. Ob zu einem späteren Zeitpunkt Blutproben von Patienten ausserhalb der USA verlangt werden, wissen wir nicht. Wir denken, dass es trotzdem von Nutzen ist, dass CFS-Erkrankte aus der Schweiz daran teilnehmen und ein Zeichen setzen. So kann das Whittemore Peterson Institut eine Datenbank anlegen, die der Forschung zu Gute kommt.
Zum Fragebogen
Edit Caption Here

September 2010 

30. September 2010
An Old Murine Leukemia Virus (MLV) Hand 
(Englisch)

An Excellent Study – Kim McCleary believes her study could end up being one of the definitive ones. As Dr. Bateman noted in one of the CAA’s webinars Dr. Singh is building on past studies and filling in the gaps. She is using fresh, not stored blood and is being extremely careful with blood handling and her test protocols. With 200 healthy controls and hundred and five CFS patients she’s got a very large study going and she is using multiple methods to detect XMRV including qPCR for proviral DNA, RT-PCR, two types of antibody tests and culturing.

A Different Kind of PCR – While she stated she could not see any way the WPI’s or Dr. Alter’s results could be due to contamination, the quantitative real-time PCR she is using makes it impossible for one patient sample to contaminate another. Nested PCR – the type of PCR most researchers have used including the WPI and Dr. Alter is more sensitive and specific but because you have to open ‘the tube’ it’s theoretically possible for contamination to occur. You don’t have to ‘open the tube’ in qPCR – it’s a one-shot process. With all her work on these viruses Dr. Singh stated that she’s created an extremely specific qPCR test for XMRV.

Blog about ME/CFS | Lesen Sie mehr

30. September 2010
Der Romberg-Test und ME/CFS 
(Englisch)

An exploration of the Romberg Test for Balance - Years ago Dr. Cheney introduced the Romberg Stance test to the ME/CFS patient community stating a positive test result indicated that deep brain dysfunction was common. The test did make it into the Canadian Consensus Criteria (in the physical examination section) but is not found in the CDC’s CFS Toolkit (which mentions physical examinations but provides no guidelines at all).

The Romberg test measures how effectively three systems of your body (vision, vestibular input, proprioception) work together to maintain your balance. We orient ourselves in the physical world by examining our spatial environment with our eyes, by using sensory receptors in our joints and muscles (proprioception) to ensure that we are upright and by the vestibular system in the inner ear to determine how to rotate, bend and balance. Two of these systems need to be working well for you to maintain your balance.

Blog about ME/CFS | Lesen Sie mehr

28. September 2010
10 Dinge, die Menschen über diese "Müdigkeit" missverstehen 
(Englisch)

Über die Absurdität des Namens Chronik Fatigue Syndrom und was Müdigkeit für CFS-Patienten wirklich bedeutet.

Here are ten things that are often misunderstood about the "fatigue" of Chronic Fatigue Syndrome.

1. This Fatigue is not the same as tired.
I'm not tired. I run out of energy, but it doesn't make me drowsy. It floods my nervous system with static and it makes me bump into things. It distorts my vision, erases my memory and renders me incapable of speech or understanding, but it doesn't make me tired.

Tired is a sweet curled-up kitten by the fireplace. CFS "fatigue" is a juggernaut dragging me in a free-fall through empty space, while everything I love goes to smash.

2. This Fatigue is not the same as lack of energy.
When CFS "fatigue" hits, it can leave me unable to get up off my face. I may not be able to stand up for more than a minute or two before feeling like I'll fall down.

Then it's time to find a flat surface like a bed and become limp while trying to get enough air, and maybe make the shaking stop.

empohwer.com | Lesen Sie mehr

25. September 2010
Eine weitere Übersicht über den XMRV-Workshop 
(Englisch)

XMRV has been discussed at numerous scientific sessions since its discovery in 2006, but the 1st International XMRV Workshop was the first scientific conference dedicated solely to presentations about the family of gammaretroviruses that includes XMRV and polytropic murine leukemia viruses (MLVs) associated with prostate cancer and chronic fatigue syndrome (CFS). Over the two-day session, 43 new presentations of data were made by groups from around the world following an opening address by NIH Director Dr. Francis Collins. The final question and answer session was webcast and abstracts are available online. Science magazine and NCI Cancer Bulletin provided short follow-up reports, and the organizing committee is preparing a manuscript of the proceedings for publication in Retrovirology, an online, open-access journal. Our report on the conference and a comparison of new data on the prevalence of XMRV and MLVs in samples from CFS patients supplement these reports and provide a focus on the CFS data and key issues raised at the conference.


While the Workshop did not provide satisfying resolution or easy answers, there was considerable optimism among speakers and panelists about the accelerating pace of progress. Most agreed that accord on key issues is likely less than a year away. While that timetable is little comfort to people whose lives have been derailed by any of the conditions linked to this family of retroviruses, this meeting demonstrated that XMRV has rallied scientific interest unmatched in the history of CFS.

19. September 2010
Parlamentarische Anfrage 
(Deutsch)

Einer Gruppe in Österreich ist es gelungen, im Zusammenhang mit CFS-Betreuung und XMRV, eine parlamentarische Anfrage an den österreichischen Gesundheitsminister einzubringen.

der Abgeordneten Dr. Spadiut, Mag. Stadler
Kolleginnen und Kollegen

an den Bundesminister für Gesundheit
betreffend Chronic Fatigue Syndrom (CFS)

Das Chronic Fatigue Syndrom (CFS) ist eine lähmende Erkrankung, von der weltweit schätzungsweise 17 Millionen Menschen betroffen sind. In den USA wird sie auch als Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) und in Großbritannien als Myalgische Enzephalomyelitis (ME) bezeichnet. Die Weltgesundheitsorganisation (WHO) klassifiziert sie als neurologische Erkrankung.

Bei der Untersuchung der mononukleären Zellen des peripheren Blutes (PBMCs) von CFS-Patienten konnte jetzt bei 68 von 101 Patienten (67%) (verglichen mit 8 von 218 (3,7%) bei gesunden Kontrollpersonen) die DNA eines humanen Gammaretrovirus, dem xenotropic murine leukemia virus–related virus (XMRV) identifiziert werden. (Science 23 October 2009: Vol. 326. no. 5952, pp.585 – 589, DOI: 10.1126/science.1179052).
Versuche mit Zellkulturen offenbarten, dass das von Patienten gewonnene XMRV infektiös ist und dass sowohl eine zellassoziierte wie auch eine zellfreie Übertragung des Virus möglich sind.

Österreich | Lesen Sie mehr

19. September 2010
Das neuste von Cort Johnson in der Übersicht 
(Englisch)

Nevada Newsline Interviews WPI Vice President Mike Hillerby and Dr. Vincent Lombardi - After noting that the response from the last radio program was off the charts Nevada Newsline brought Mike Hillerby back. Mike called the number of calls and emails he receives almost frightening given how many desperate and untreated people they indicated are out there.

How it all it got started - Dr. Lombardi explained just how XMRV/CFS connection got started. As with many notable discoveries the process was amazing. Dr. Lombardi was already looking at RNase L (his was the only lab in the US to test for the RNase L defect in ME/CFS) and was interested in prostate cancer and contacted Dr. Silverman. While they were at a prostate cancer meeting they 'threw around' the idea of looking for XMRV in CFS patients - something he felt was a kind of 'pie in the sky' idea at the time given how different the two disorders were. Some time later, a graduate student came into the office asking for something interesting that he would do it for free... at which point, Dr. Lombardi, stating that he'd promised Dr. Silverman he'd get the testing done, gave him the samples....and off they went! Soon after that the samples starting turning up positive. Such were the humble beginnings of this major discovery :).

Direkter Link

Phoenix Rising | Lesen Sie mehr
Nevada Newsline |
Audio Interview
Dr. Jamie Deckoff |
My written testimony to the CFSAC
Dr. Jamie Deckoff |
More random thoughts

18. September 2010
Mehr über das CFS Advisory Committee Meeting am 12. - 14. Oktober 2010 
(Englisch)

CFSAC Meeting Testimony Deadline & Science Day

The Federal CFS Advisory Committee (CFSAC) meeting will be held October 12, 13 & 14th in Washington, DC at the Hubert H. Humphrey Building, 200 Independence Avenue SW. October 12th will be the designated Science Day, with no opportunity for public comment. The 13th and 14th will allow times for public testimonies.

Direkter Link (langsamer Server)

Lannie in the Lymelight | Lesen Sie mehr

14. September 2010
Das neuste von Cort Johnson in der Übersicht 
(Englisch)

An Excellent Study - Both Dr. Vernon and Kim McCleary have spoken of her study in the highest of terms. She is being extremely careful with blood handling and her test protocols and she is using fresh blood. With 200 healthy controls in hundred and five CFS patients it's a very large study and she is using multiple methods to detect it including qPCR for proviral DNA, RT-PCR, two types of antibody tests in the culturing. She was in anyin an andShe is building on past studies and filling in the gaps. She noted, for instance, that the samples in the healthy controls and CFS patient samples in the original Science study were handled in different ways and that while the patients came from across the US all the healthy controls came from Maryland. (In one of those odd coincidence's all of Alter's healthy controls also came from Maryland as well.) This is not to knock the original study; all studies have their weak points but to illustrate that all studies, should, as Dr. Bateman pointed out build in each other. Dr. Singh's patients and controls will come from the same area and the blood storage methods will be identical for both. This will control for differences in blood preparation and geographical variations in viral persistence and in viral sequences. Importantly, with the help of Dr. Bateman, she is also breaking up the patients into three cohorts depending upon severity.

Phoenix Rising | Lesen Sie mehr

14. September 2010
Lot’s of Questions at Int. XMRV Work Shop Q&A…and one BIG Answer? 
(Englisch)

No ‘Flip’ Yet: The Workshop did not, as we hoped, turn out to be the place where the research world flipped from worrying about how to find the virus to figuring out what it does and how it does it. According to one report Dr. Ruscetti said he, at least, was turning his attention from diagnosis to pathogensis but it was clear that many others were not. The Q&A session revealed a hard-nosed bunch of researchers who want to get matters nailed down before they move on. The NCI chiefs response to Dr. Ruscetti’s question about funding (none planned) indicated that the Institute was waiting for the testing issues to get ironed out before it would as well. Indeed, the second really major bit of positive news (see below for the first), thus far, to come out of the Workshop was the creation of a new diagnostic task force under the direction of an ace pathogen detective Dr. Lipkin. XMRV continues to be hung up – at least in the views of many of these researchers – on the horns of the disparate PCR results.
Slow Progress – Dr. Stoye had hoped to have answers by now. With three more negative and three positive studies reported Dr. Coffin stated “we’re still in a zone of chaos where…. we don’t have agreement on almost anything in this. We have to work toward that right now” Interestingly, Dr. Coffin tried to damp down what he appeared to feel were overly exuberant

Blog about ME/CFS | Lesen Sie mehr

14. September 2010
A Time to Act! 
(Englisch)

Ecclesiates says there is a “A time to every purpose under the heaven”. I suggest that our time is now.

ME/CFS has been ignored and kicked to the side of the road for decades. Twenty-five years later – long after it has been shown to afflict at least a million people in the US and inflict billions and billions of economic losses annually in the US – it still receives amongst the lowest amount of funding of any disorder. Chronic illnesses that effect fewer people and cause less damage get hundreds of millions of dollars a year in funding while we get a few million a year…droppings from the NIH’s table.

The message we should all deeply get is that they don’t care about us! The fact that there a million sick people out who are not getting treatment matters little to them. Other things matter much more. The cavalry is not coming to the rescue!

The Possibility and Danger - As a community we may be too confident in the ability of XMRV to transform the field. The uncomfortable question we should be asking ourselves is what if, god forbid, XMRV does not work out? And if it doesn’t how can it still serve us? Has it provided us a possibility that we have not fully taken advantage of? Are we missing an opportunity that we will mightily regret later on? I think it has and we are in danger of missing it.

Men at some time are masters of their fate
— Shakespeare, Julius Caesar
Leverage = Opportunity. For the first time in decades we have some leverage. XMRV has thrust us into the news. ME/CFS is being talked about. NIH officials are actually meeting with patients. We have an opportunity we have not had in decades.

Blog about ME/CFS | Lesen Sie mehr

14. September 2010
Noch eine Zusammenfassung vom Workshop 
(Englisch)

It’s difficult to characterize two days of talks in a few paragraphs, but one thing that resonates is the, at times, testy battle between two camps of scientists. The cohort that believes that mouse retrovirus contamination accounts for the positive XMRV and related murine leukemia viruses studies was pitted against the cohort that believes contamination has been ruled out and that the positive studies show a clear link between this family of retroviruses and Chronic Fatigue Syndrome and prostate cancer. Not surprisingly, the discussions around CFS grew more heated than those around prostate cancer. Dr. Mary Kearney of the National Cancer Institute may be the one to resolve this issue, as she reported on a test that discriminates between mouse retroviruses and XMRV with, she said,100 percent accuracy.

Despite several positive retroviral findings, by the time the Q and A began at the end of the second day, the upbeat mood many felt due to the recently published FDA/NIH/Harvard murine leukemia virus study—which found XMRV-related MLV viruses in 86.5 percent of CFS patients—had morphed into uncertainty. Dr. John Coffin of Tufts University, however, reassured the audience that it takes time to grind the sausage—his oft-used phrase—and that the XMRV findings were, in fact, moving along at a brisk clip.

Mindy Kitei | Lesen Sie mehr

9. September 2010
Transkript der Frage- und Antwortstunde veröffentlicht! 
(Deutsch + Englisch)

Nachfolgend finden alles wichtige vom XMRV-Workshop.

Poster von Dr. de Meierleir:
Dr. DeMeirleir reports the presence of reduced CD3 T-helper cells and CD57 lymphocytes and higher C4a, soluble CD14, serum IL-10, and elastase activity The sample was very small, unfortunately (16 patients) but the findings are intriguing. T helper cells are wiped out in HIV/AIDS and Nancy Klimas appears to be finding reduced cytotoxic killer cells (CD57) in ME/CFS. These are two of the big guns in the adapative immune response - while they were different from controls they were still within reference values; they were not 'shot' as you see in HIV/AIDS. It was good to see increased C4a since it has been implicated in the post-exercise problems in ME/CFS before. Elastase could interfere with a number of things including blood vessels and it has been implicated in ME/CFS as well. Other findings were found. Dr. Mikovits has reportedly identified an immune signature and it will be interesting to see how the two signatures match up. (Thanks to Rich Van Konynenburg for providing the poster).

Bericht von Cort Johnson

9. September 2010
NIH glaubt anscheinend endlich an den XMRV-Virus 
(Englisch)

Major Study - The NIH tagged Anthony Fauci to oversee a major study on XMRV and CFS. The HEAD of the NIAID (National Institute of Allergy and Infectious Diseases), an Institute with a multi-billion dollar budget, and a major figure in immunology with over 800 citations, Fauci is the biggest name yet to be associated with either CFS or XMRV. His appointment indicates the NIH believes XMRV is a hot-button issue they need to get up to speed on. Dr. Mikovits has noted that the NIAID has largely ignored XMRV thus far....they're clearly not ignoring it any longer.

No Friend to ME/CFS - Anthony Fauci, however, has been no friend to ME/CFS - in fact, he's been considered a major problem for years. He appointed Stephen Strauss to head the CFS team in the 1980's and moved for ME/CFS to get kicked out of the Institute ten years ago, an event which lead to years of research declines as the program slowly disintegrated in the backwater that is the little Office for Research on Women's Health. Since then he has been utterly resistant to attempts to increase funding and research funding from the NIAID has decreased. (How much has the ME/CFS community gotten from Fauci - much less than the distance between his fingertips in the photo suggests). His study will include testing samples from different areas of the country at the WPI, FDA and CDC.

Phoenix Rising | Lesen Sie mehr

9. September 2010
Internationaler Workshop über den Erwartungen 
(Englisch)

International XMRV Workshop Exceeding Expectations - In terms of impact on policy the International XMRV Workshop is exceeding expectations. The big news is that the NIH tagged NIAID Chief Anthony Fauci, himself, to oversee a major study on XMRV and CFS. Anthony Fauci is a major, major figure - he is the HEAD of the NIAIDl (National Institute of Allergy and Infectious Diseases) - and his appoinment indicates what a hot-button issue the NIH believes XMRV in. Dr. Mikovits has complained how the NIAID has ignored XMRV thus far....well, they're not ignoring it any longer. By appointing Fauci they are attempting to demonstrate to the world how serious they are about the subject

Anthony Fauci, however, has been no friend to ME/CFS - in fact, he's been considered a major problem for years. He headed the NIAID when ME/CFS was kicked out of the Institute ten years ago, an event which lead to years of research declines as the program slowly disintegrated in the backwater that is the little Office for Research on Women's Health and he has been utterly resistant to attempts to increase funding.

But Anthony Fauci did a very interesting thing when he turned the research project over to Ian Lipkin at Columbia University, an ace pathogen detective, who was already rumored to be studying XMRV in ME/CFS. When asked by Amy Dockser Marcus why the conflicting results thus far he cited different types of patients, sample preparation and methods. His study will include testing samples from different areas of the country at the WPI, FDA and CDC.

Phoenix Rising | Lesen Sie mehr

9. September 2010
Weltklasse Virus-Jäger 
(Englisch)

At the 1st International Workshop on XMRV, which kicked off yesterday at the NIH, one of the most confounding questions was: Why don’t the scientists agree?

Conflicting results from different labs looking for XMRV and other related viruses have been at the heart of a debate that started last year, when researchers reported in Science that they found XMRV in a higher proportion of chronic fatigue syndrome patients than healthy people.

The highest-profile dispute has been between scientists — many of whom are attending the workshop — at different federal agencies. A group of CDC researchers couldn’t find XMRV or related viruses in CFS patients or healthy controls; an FDA/NIH team, meantime, didn’t find XMRV but did find related retroviruses in CFS patients and in some healthy controls. Public health officials were confused by the conflicting findings and initially held up their publication to try to find an explanation.

The Wallstreet Journal | Lesen Sie mehr
Regina Clos, CFS-Aktuell |
Zusammenfassung auf Deutsch

8. September 2010
XMRV Konferenz, Tag 1 
(Englisch)

Head of the NIH Dr. Francis Collins opened the conference with a cautiously optimistic talk. His take on XMRV and related MLVs combined "some skepticism" (largely due to the negative XMRV studies) with "enormous medical importance," if the positive papers win out. As for the FDA/NIH/Harvard paper, Collins said that "differences might matter," referring to that study's findings of four XMRV-related MLVs in CFS patients and controls versus Dr. Judy Mikovits's XMRV finding. Most importantly, he said a NIAID "multi-center study" on XMRV and related MLVs will be done and that he and NIAID Director Tony Fauci had discussed it. Collins closed by saying it was a "very exciting time" and expected "great things" to come out of the discovery.

CFS-Central | Lesen Sie mehr

7. September 2010
Alter Forschungsbericht bestätigt retrovirale Aktivität in CFS 
(Englisch)

Validation…Vindication – We believed that the findings would validate the WPI’s results and, proving, once again that nothing is easy in chronic fatigue syndrome, they both did and they didn’t. They did in the most important sense; the Alter/Lo study (Lo was the principal investigator) confirmed the major finding of the original Science paper- that retroviruses are highly prevalent in people with CFS and are found in much lower levels of the general population. After all the zeros and null findings of the previous studies, the Alter findings were remarkably consistent with the WPI’s original findings (86% of CFS patients vs 68% and 7% of controls vs 4%). The fact that two accomplished researchers using their own samples and their own techniques duplicated the finding of mouse retroviruses in chronic fatigue syndrome was enormously beneficial.

Blog about ME/CFS | Lesen Sie mehr

3. September 2010
Erweiterter Fragenkatalog zu den Studien von Lo und Alter 
(Englisch)

In the days following the August 23, 2010 publication in the Proceedings of the National Academy of Sciences (PNAS) of, “Detection of MLV‐related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors” by Shyh‐Ching Lo, Harvey J. Alter and colleagues at the Food and Drug Administration, National Institutes of Health and Harvard Medical School, we collected frequently asked questions (FAQs). We requested answers from a range of experts familiar with this study, the emerging field of research into XMRV and other murine leukemia retroviruses, blood safety issues and the related media coverage. Here are their replies, in their own words.

2. September 2010
Frage- und Antwortstunde wird übertragen 
(D+E)

Von der Webseite von Phoenix Rising haben wir erfahren, dass am 8. September ab ca. 23.15 Uhr unserer Zeit die Frage- und Antwortstunde des 1. Internationalen CFS-Workshops via Webcast übertragen wird.

Auch die anderen Teile des Workshop werden gefilmt und später auf der selben Webseite publiziert.

The Workshop WEBCAST! - Filfa4 on the Forums pointed out there will be a webcast of the final Q and A session that is billed to last 2 hours! The Q & A sessions are often the most interesting parts of any conference; this one begins on 5:15 EDT on Wednesday, Sept 08th. Check out the link here Rrr on the Forums followed up with the NIH and learned that all portions of the Workshop will be filmed and the presentations will go up, subject to the presenters permission, on the NIH website 2-3 weeks later so it's concievable we could have most of the Workshop available for viewing. Thanks for Filfa4 and Rrr for being alert and getting us this news.:)

2. September 2010
Vorschläge zur Diagnose von ME/CFS und XMRV 
(Deutsch)

Diagnostische Kriterien für XAND
(XMRV-associated neuroimmune disease)
Angenommen, die XMRV-Forschung geht jetzt wirklich voran und es stellt sich heraus, dass XMRV in der Mehrheit der CFS-Fälle an der Wurzel des Übels ist, möchte ich Ihnen hier meine Version eines guten, diagnostischen Vorgehens für CFS oder vielmehr XAND, der Abkürzung für (XMRV-associated neuroimmune disease), vorstellen.

1. Erhebung der Krankengeschichte und körperliche Untersuchung
Als Grundlage aller guten klinischen Medizin steht am Beginn immer eine gründliche Erhebung der Krankengeschichte und eine klinische Untersuchung. Das ist auch der Anfang für eine konstruktive Arzt-Patient-Beziehung. Irgendwann wird das Wissen um wirksame Behandlungsformen in weiteren Kreisen bekannt sein, aber ohne eine gute Beziehung zu Ihrem Arzt können sie nicht durchgeführt werden.

CFS-Aktuell | Lesen Sie mehr

2. September 2010
Neue Studien zu XMRV/MLVs 
(Deutsch)

Hintergrund

XMRV (xenotropic murine leukemia virus-related virus) ist das erste bekannte Beispiel für ein exogenes Gammaretrovirus, das den Menschen infizieren kann. Eine begrenzte Anzahl von Berichten lässt darauf schließen, dass XMRV eigentlich resistent gegenüber vielen der antiviralen Medikamente ist, die in der Behandlung einer HIV-1-Infektion eingesetzt werden, aber dass es empfindlich ist gegenüber einer kleinen Untergruppe dieser Inhibitoren. In der vorliegenden Studie haben wir ein neuartiges Marker-Transfer-Assay eingesetzt, um die Suszeptibilität gegenüber antiviralen Medikamenten von XMRV und HIV-1 direkt und unter identischen Bedingungen im gleichen Wirtszelltypus zu vergleichen.

Ergebnisse

Wir haben die Ergebnisse früherer Studien ausgeweitet, indem wir gezeigt haben, dass XMRV und HIV-1 außer auf AZT und Tenofovir gleichermaßen empfindlich sind auf AZddA (3'-azido-2',3'-dideoxyadenosine), AZddG (3'-azido-2',3'-dideoxyguanosine) und Adefovir. Diese Ergebnisse weisen darauf hin, dass spezielle 3'-azido oder azyklische nukleoside Analoginhibitoren der HIV-1-reversen Transkriptase (RT) in vitro auch eine XMRV-Infektion mit vergleichbarer Effektivität blockieren. Unsere Daten bestätigen, dass XMRV hochresistent gegenüber den nicht-nukleosiden RT-Inhibitoren Nevirapin und Efavirenz und gegenüber Inhibitoren der HIV-1-Protease ist. Außerdem zeigen wir, dass die Integrase-Inhibitoren Raltegravir und Elvitegravir aktiv gegen XMRV sind, wobei die EC50-Werte im nanomolaren Bereich sind. (EC50 bedeutet Effecticve Concentration 50%. Damit ist die Dosis gemeint, die bei 50% einer Versuchspopulation eine definierten Wirkung auslöst, d.Ü.)

CFS-Aktuell | Lesen Sie mehr

2. September 2010
Varianten von Mäuseleukämie-Viren entdeckt 
(Deutsch)

Am 23. August erschien in den Proceedings of the National Academy of Sciences (PNAS) die zunächst zurückgehaltene Studie von Harvey Alter und Shyh-Ching Loa, die die Ergebnisse der Original-Science-Studie von Lombardi/Mikovits zur Prävalenz des XMRV bestätigt.
Am Abend des 23. August 2010 veranstaltete das US-amerikanische National Institute of Health zusammen Vertretern der Food and Drug Administration (FDA) und der Centers for Disease Control (CDC) eine 40-minütige Online-Pressekonferenz über den möglichen Zusammenhang zwischen XMRV und ME/CFS. (Ein Script der Pressekonferenz finden Sie hier.)
Die Ergebnisse der FDA/NIH-Studie von Alter/Lo ergaben, dass 86,5% der Blutproben von ME/CFS-Patienten (32 von 37 Proben) positiv auf drei Varianten des XMRV waren, verglichen mit "nur" 6,8% der gesunden Kontrollgruppe (3 von 44 Proben).
Man hat nicht das XMRV gefunden, von dem in der Original-Science-Studie die Rede ist, sondern Variationen des XMRV, deren genetisches Material zu 96,6% identisch ist. Es handelt sich nicht um ein Virus, sondern um eine ganze Gruppe von Retroviren, sogenannte Murine leukemia viruses (MLVs). Harvey Alter sagte gegenüber CFScentral, dass Viren dazu tendieren, inhomogen zu sein. Sie würden sehr stark mutieren, und das beobachte man auch bei HIV und Hepatitis C.

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2. September 2010
Aktuelles zu XMRV 
(Deutsch)

Liebe Leser,
die Nachrichten über das neue humane Gammaretrovirus und seine Varianten sind so vielfältig und werden jeden Tag mehr, dass cfs-aktuell nur einen kleinen Ausschnitt der wichtigsten Meldungen bieten kann. Bitte arbeiten Sie sich über angegebenen Links selbst weiter vor in das Land einer äußerst spannenden wissenschaftlichen Entdeckung, die ich für die vielversprechendste halte, die in den letzten Jahrzehnten hinsichtlich des ME/CFS bekannt wurde. Viele neue Impulse und Informationen werden sicher aus der für den 8. September 2010 geplanten Tagung zu XMRV erwachsen. Trotz der Vorbereitungsarbeiten zur Tagung des Fatigatio e.V. am 25.-26. September 2010 versuche ich, Sie über das Wichtigste weiter zu informieren.
Regina Clos

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1. September 2010
Programm vom ersten internationalen Workshop über XMRV ist veröffentlicht 
(Englisch)

It's a two day workshop. It starts out basic stuff; where the virus integrates itself into the cell's genome, which types of mice may contain XMRV-like sequences, and then there is a presentation on a 'novel gene product' of XMRV - which means? what - a protein?? In any case it appears to be something new to science which is always interesting.

In the next session there is a talk on animal models, which are animals researchers give XMRV to and then study them. Animal models are critically important to understanding how pathogens function. Its good to see researchers focusing on animal models so early. Dr Bishop will talk on 'Host Restriction Factors' which are factors in our cells that restrict viral replication. These factors may be one reason why XMRV appears to be different in prostate cancer tissues and the blood. Then we get to see VERY INTERESTING LECTURE.

Dr. Villinger talks on why XMRV Induces a Chronic Replicative Infection in Rhesus Macque Tissues and But Not in the Blood". We've been wondering where, if any place, XMRV is replicating? We know it hardly happens in the blood but is there a tissue somewhere (besides the prostate) where its growing away? Dr. Villinger will tell us where in the bodies of these macaques XMRV has found a home. Is it the nervous system? (Wouldn't THAT be exciting/appalling...) How about the lymph nodes? The blood vessels? Thjis could be a really insightful presentation.

The next talk by Dr. Kazak will fit in perfectly here because he will look at different variants in the XPRI receptor that XMRV uses to enter cells. These variants may determine which cells XMRV can get into and cannot. The next day starts out with the prostate cancer series which we will bypass, except to say that Dr. Singh is giving a lecture on pathogenesis. The section on CFS comes next.

Dr. Mikovits and Dr. Ruscetti chair the section and he (not Dr. Mikovits) will lead off with a talk on subject he was hardly aware of until two years ago - chronic fatigue syndrome. Dr. Hanson has the only CFS/XMRV NIH grant yet funded. Its a full ROI grant which means (a) that she must have had some preliminary data and (b) it must have been positive - so here we appear to have the third positive XMRV study to appear. We know she is studying Dr. Bell's pediatric patients (or formerly 'pediatric' patients and her rather complex study wll look at a variety of immunological and other features. (If we'd thought about it we might have realized the NIH would not grant funds for such a complicated study unless they knew the patients tested positive.) One interesting question will be if she has blood samples from 25 years ago from these patients.

Right next to her Dr. Huber will presumably report on her negative study - an interesting juxtaposition indeed. Dr. Lo will report on the Alter/Lo positive finding and then we believe we'll have a second positive study report by none other than Dr. Mikovits herself. This appears to be the Invest in ME/WPI UK study that used an independent lab to replicate the WPI's results. The title of this one is intriguing "the Detection of Infectious XMRV in the blood of ....in the UK". One wonders if the inclusion of the word "infectious' in there could mean anything special about this study? Do they provide new evidence of infectious spread?

The Assay development section will start off by a lecture by a man who's never been able to find any XMRV in patient blood - Dr. Switzer of the CDC. After the Alter/Lo study and the FDA's statement that 'sample preparation' could've played a role in the inability of the CDC to find XMRV this lecture could be interesting. (Dr. Vernon's test tube comments come to mind)... Could Dr. Switzer tell us something surprising here? aka 'we made a mistake?'.

Dr. Bagni will represent the WPI as she explains how to produce an antibody test for XMRV then we'll get good news about the development of XMRV immunoassays for large scale population studies. Finally Dr. Kearney - who may be part of the Blood Working Group will talk on his success in finding XMRV in blood products. (Things are moving forward on the diagnostic front.)

In the last session on Epidemiology the Bannert lecture will indicate to us that he did not find XMRV but he also shows that the bug can infect blood cells - which sounds that he's replicated a key part of the Science paper (!) but still can't find the virus...We'll have another opportunity for another positive study when Dr. Blomberg talks about his search for XMRV in Sweden. Finally it appears that another member of the Blood Working Group will report multi-laboratory evaluations of different XMRV assays.

Dr. De Meirleir is believed to have a poster providing the results of another postive study and the identification of an immmunological signature associated with XMRV infection. At this point it appears there may be at least three positive studies and possibly four.

The 2-day Workshop indicates that Science is marching forward very quickly; indeed at lightspeed compared to what we are used to. If XMRV wins out this could be just the beginning; the medical research establishment (contrary to our experience) in the US, after all, is vast indeed. Months ago, Dr. Klimas reported that retrovirologists were hungry for something new...might we eventually experience something of feeding frenzy in the research community?....To go from doormat to hot ticket would be something indeed.

Programm | Lesen Sie mehr
Kommentar von Cort Johnson, Phoenix Rising | Direkter Link

1. September 2010
NIH veröffentlicht Bericht über die Studie 
(Englisch)

The NIH finally threw its hat in the ring on the new XMRV findings. In the NIH Research Matters section the official NIH release starts off with a bang "New research supports the idea that viruses may play a role in chronic fatigue syndrome (CFS), a debilitating disease that affects millions of people nationwide" What a nice sentence that is; it fits in viruses, a debilitating disease and 'millions of people'; they almost make it sound like we have a major problem here....Did Fauci groan when he saw this? Is he starting to think how he's going to explain how under his direction the NIAID has basically ignored CFS and it's millions of retroviral infected patients for decades? How is he going to explain his paltry budgets over the past 25 years for the millions of ill patients. One fervently hopes that at some point he'll have to. In any case the article illustrates that no matter what happens with XMRV, CFS should now be associated in many people's minds as something that's 'debilitating' and common. Overall its a nice little article.

Kommentar von Cort Johnson

1. September 2010
Opening the Door to a New Era: the WPI Arrives 
(Englisch)

As the Whittemore-Peterson-Institute opens its door on what may be a new era of understanding and treating ME/CFS, it’s good to look at the circumstances that spawned the Institute. It was borne out of hope and possibility, for sure, both of which it has vastly exceeded but it was also borne out of trial.
The new century started off poorly for people with ME/CFS. First the federal CFS research centers closed and then both the NIH and CDC CFS budgets began to crumble. Eventually the CDC’s research program devolved into theories of sexual abuse, allostatic stress and metabolic syndrome while the NIH program, stuck in a little Office with no money and nothing but scores of broken promises, simply stagnated.

Blog about ME/CFS | Lesen Sie mehr

9. September 2010
Dr. Peterson hat sich vor dem Workshop mit NIH-Verantwortlichen getroffen 
(Englisch)

On September 7, 2010, at 11 a.m., at the NIH campus in Bethesda, MD, a group of 9 CFS patients and their families met with Top level NIH officials. To my knowledge, this is the first meeting of its kind in the 27 years since I was first struck down with this illness in 1983.

The meeting was organized by long-time CFS patient Robert Miller. The meeting's CFS participants (patients and family) included: Charlotte, Linda, Sherry, Scott, Marielle, Bobbi, Rivka, Robert and Megan. A wonderful surprise addition to the meeting was Dr. Daniel Peterson, of Incline Village, NV, champion doctor of CFS patients and co-founder of the Whittemore Peterson Institute in Reno, NV.

The meeting was held just prior to the start of the 1st International XMRV Conference sponsored by the NIH. The NIH officials present included:

Michael Gottesman, M.D. Chief of NCI's Laboratory of Cell Biology and Director of the NIH Office of Intramural Research http://www.nih.gov/about/almanac/historical/deputy_directors.htm#gottesman
Paul H Plotz, M.D. Chief, Arthritis and Rheumatism Branch (NIH) http://www.niams.nih.gov/Research/Ongoing_Research/Branch_Lab/report_individual.asp?id=569&Branch_LabID=25&email=plotzp@mail.nih.gov%20&includefile=RAG
Roland Owens, Ph.D. Assistant Director of the NIH Office of Intramural Research and Chief of the Molecular Biology Section in the Laboratory of Molecular and Cellular Biology in the National Institute of Diabetes and Digestive and Kidney Diseases at NIH. http://jgh.hunter.cuny.edu/index.php/component/content/article/6-biographies/95-owens-roland-a-phd.html?directory=18
These are my impressions of the meeting. Any and all mistakes, such as misrepresenting someone's words or sentiments, are all mine. And I welcome any corrections from others.

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