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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

November 2010 

29. November 2010
Dr. Cheney über PCR und Antikörpertests 
(Englisch)


Dr. Cheney Reports - in his latest newsletter - or at least that part of which is available for free - Dr. Cheney reports news on the serology tests emanating from VIP Dx. Earlier Dr. Mikovits noted that antibody tests picked up more positives than PCR tests.

Dr. Cheney noted that 2 out of the three people who tested negative by PCR later tested positive by antibody tests. Overall 83% of his 47 patients have tested positive. He expects the percentage to rise to 90% when all the serology results are in - putting the number right about where Annette Whittemore suggested when XMRV broke. It appears from his numbers that the antibody test may add maybe another 10-15% to the percentage of positives.

Rather startlingly Dr. Cheney reports that 60% of family members without CFS also tested positive but the numbers tested were very low (10 ) and therefore could change dramatically. Nevertheless, if they are ultimately validated, they would indicate that XMRV is quite infectious - not a surprising finding given the mostly anecdotal evidence to date; XMRV appears to be a more robust virus than HIV and may be able to survive in the saliva and semen and cervical fluid.

How odd it is, though, that the positive rates VIP Dx reported in its testing of putative CFS patients - somehow around 50% as I remember- are lower than Dr. Cheney appears to be finding in family members and exposed controls without CFS (but perhaps with other problems)...or maybe it isn't 'CFS' being such a vague category. Dr. Komaroff reported recently that a significant percentage of people diagnosed with CFS by primary care doctors don't appear to have it - thus a certain portion of people that the VIP Dx may not have 'it' whatever it is :). In any case, the high rates of XMRV postive patients in Dr. Cheney's practice vs the lower rates in VIP Dx at large are yet another small but perhaps telling validation of the WPI's initial results because if XMRV is a more or less 'CFS-centric' bug then we would expect higher rates in Dr. Cheney's practice than in other practices that do not focus on CFS.

What we don’t know, from this short excerpt, is what Dr. Cheney or VIP Dx considers a positive antibody result. When you get to the level of clinical testing - a single positive result is never considered determinative - it’s always backed up another positive test. Dr. Singh in her patent application requires two positive antibody tests for a sample to be considered positive. Determining what combination of tests will, in the end, constitute a true positive is a thorny issue, one that the BWG will have to grapple with at some point.


Blood Working Group Meeting - Put it on your calendar - Dec 14th/15 - Dr. Mikovits said the BWG hoped to be complete with Phase II by this meeting. Hopefully they’ll be able to meet this target.

The Group put together a summary of Workshop that included sections on both the positive negative studies and which included this interesting line….” In contrast to the previously reported findings of close genetic relatedness of all XMRVs in patients with CFS and in PC from different geographic regions the amplified gag gene sequences revealed a genetically diverse group of MLV-related viruses” How odd that the more widespread group had less genetic variability than the localized group….It’s another XMRV oddity, for sure, which presumably has something to do with the different testing methodologies.

In any case the BWG appears to have fully incorporated the Alter/Lo and Hansen studies into their protocols - they are now looking for MLV’s -not simply XMRV.

They are, of course, not alone - the Alter/Lo paper shifted the ground on XMRV - Dr. Mikovits Dec 2nd talk in Norway (what a pleasant place to visit in Dec!) will be on ““XMRV and other MLV’s in ME/CFS”.

The BWG’s conclusion was that everything’s is about as clear as mud - but! - we are working on it.. “The science of MLV related viruses in humans is still evolving. While many laboratories have detected MLV-related sequences in prostate cancer samples, others have not. The frequency of positive samples varies widely between laboratories. There is controversy about the detection of MLV-related sequences in CFS with the majority of laboratories failing to detect MLV sequences. There are ongoing studies to determine whether technical issues, such as extraction methods or primers and/or subject selection including clinical criteria and geographic issues might influence the detection of MLV sequences.”

Of course we expect clarity and are disappointed (and worried) and if its not forthcoming. In a recent Newsweek article Dr.. William Schnaffner, an infectious disease specialist, suggested that we should neither expect clarity at this point or be disappointed that it has not appeared ““Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”
That Newsweek Article - is empathetic and well-written and well worth reading. In it Dr. Andrew Mason, after referring to the battle over decades long battle over the cause of ulcers, argues that anti-retroviral trials are the ‘the only way to win this battle’. Dr. Lipkin would not agree stating “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can. But the first order of business is to determine if the association is real.” Dr. Lipkin is clearly intrigued by ME/CFS - he is engaged in two studies - but it took the NIH almost a year to get his study off the ground - hardly a sign that they’ve been working as rapidly as possible. Still, when they did get into gear they did so in big way - hiring one of the top pathogen detectives to lead the search.

Dr. Deckoff Reports - http://treatingxmrv.blogspot.com/ - meanwhile Dr. Deckoff and her daughter continue to slowly improve. It’s not dramatic..it’s slow drips over time that she notices over the months rather than the days. They are charting functionality using the Karnovsky Index and both have pushed past 80 for the first time. One of the surprising benefits for her has been a reduction in peripheral neuropathy (nerve pain) that can be very painful.

Test Results - meanwhile there have been a flurry of test results on the Forums. Several people received positive results by culture and negative results by serology at VIP Dx - rather the opposite of what one might expect at first - but perhaps suggesting a poor immune response to the virus (or an antibody test that needs some improvement). Another person with milder CFS (myself) tested positive by culture (it took a long culture) - suggesting that viral loads were really low and I but had a strong antibody test - which I was told could be protective (which might be why viral loads are so low???). I had gradual onset and Dr. Mikovits noted that others with gradual onset have tested positive. There appear to be several different variations and the science, of course, is still evolving…... One of Dr. Peterson’s patients who tested positive by WPI tested negative by Dr Jay Levy - a virologist who was associated with CFS in the early days.

Cort Johnson | Lesen Sie mehr

25. November 2010
Brust -und Prostatakrebs-Ergebnisse bestätigt. Resultat der Original Sciencestudie bestätigt: XMRV auch im Sperma und anderen Flüssigkeiten 
(Englisch)


The Next Cancer for XMRV? - JMK on the MECFS Forums snuffed out Dr. Singh's XMRV patent application and then XMRV Global Action highlighted the most relevant sections and here we are with what is easily the most exciting news for XMRV since the Science paper was published in October of last year. The patent application states Dr. Singh has found XMRV in 25% of 178 samples from patients with breast cancer - a finding that will surely send a shock through Cancer research community. Tellingly, XMRV was not found in the tissues just surrounding the cancer as originally appeared with prostate cancer - it was found smack dab in the middle of the malignant breast tissues.

Hormones plays a role in many cancers including prostate and some breast cancers...is XMRV, which we know has a hormonal connection, zeroing in on hormone related cancers? Studies change the course of research efforts not patent application but it's a patent application from a respected and careful researcher and you can bet your boots several papers on their way....

Prostate Cancer Clarified - breast cancer wasn't the only cancer to get a big hit. The XMRV prostate cancer connection has been questioned because of the inability, thus far, to find XMRV in the malignant tissues themselves - it's always been found in the tissues just surrounding those tissues but no longer; the application, rather startling, stated that these new immunohistochemistry and antibody results indicate XMRV is overwhelmingly found in the malignant epithelial tissues in prostate cancer patients. If validated, this will, undoubtedly ramp up XMRV cancer research efforts.

Happily the antibody (30%) and immunohistochemistry (27%) results correlated very nicely - thus providing an important check on their validity. The immunohistochemistry staining also revealed a telling pattern of XMR positive cells clustered together - just as you would expect with a virus.

Still an Underestimate - interestingly Dr. Singh believes her tests still underestimate the prevalence of XMRV in prostate cancer because it's found in such a small subset of cells and that a closer examination of the tissues. will most likely lead to increased prevalence rates. Viral load is believed to be very low, in fact, she believes it is "close to the detection limit of the qPCR' assay.

She doesn't appear to have much doubt about the potential virulence of the pathogen, though; her results showed that XMRV presence was a correlated with cancer severity; that is, the more severe the cancer the more likely it was that XMRV was found in it.

More Cancers?/More Tissues? - Findings of other cancers were not detailed but the application does appear to indicate (?) XMRV was found in immune cells in the lymph nodes, the bone marrow and peripheral blood from hematological malignancies as well as the testes. (This is in a section that lists 'embodiments' of the present methods). Hematological malignancies refers to cancers that affect blood, bone marrow and lymph nodes and include such cancers as leukemias and non-Hodgkin's (and other) lymphomas. Non-Hodgkins Lymphomas are reportedly found in 5% percent of Dr. Peterson's Nevada cohort. http://aboutmecfs.org/Conf/IACFSME09WPI.aspx The immune cells in the lymph nodes could be very telling as the lymph nodes are a reservoir for many infections. It seems likely that these results could reflect the autopsy work Dr. Singh has been doing. On the other hand, the application did state that the only other tissue XMRV was found in the 8 prostate cancer patients she autopsied was the testes.

XMRV Clarified - Dr. Singh has gone a long way in refining her techniques to find the virus. First she generated a new infectious clone called pXMRV33 constructed from two overlapping clones. She transfected some cells with her clones and nine weeks later began to detect reverse transcriptase - an enzyme associated with retroviruses. She then took the supernatant (cell free material), dropped some cells in it and then was able to detect retroviral activity in cells - indicating she had an infectious retrovirus on her hands.

Electron Microscopy -looking through an electron microscope she was able to see abundant viral particles that resembled a murine retrovirus.

Antibodies - she was able to find antibodies specific to XMRV by affecting rabbits with it and then doing Western blot tests. She found that (except for the env proteins) the amino acids in the proteins associated with XMRV were very similar (90%) to those in the Moloney murine retrovirus she's been studying for quite some time.

It appears that she has replicated several important aspects of the WPI study and in at least one way has added to it; she has demonstrated that she has an infectious virus, she has created PCR and antibody tests whose results, at least in prostate cancer tissues, correlate with each and her electron microscopy results suggest she has a MLV-like retrovirus. Plus her immunohistochemistry test provides a newway to validate her results.

XMRV In Fluids Dr. Singh has also refined her testing protocols for many of the bodily fluids. The application states that her immunohistochemistry assay, in fact, can be used to detect XMRV in saliva, semen, peritoneal fluid, synovial fluid, prostatic or cervical secretions, blood and serum. It describes a specific method for finding XMR in cervical fluid - and notes that the potential for spread from mother to child via that means.

Semen Findings Validate WPI Findings for Healthy Controls - - The XMRV in semen finding had important implications because XMRV showed up in the semen in exactly the same percentage (7%) of healthy controls as tested positive in the original Science study - a very nice validation of the WPI's original findings. Dr. Mikovits long ago, if I remember correctly, stated XMRV was found in the semen but Dr. Singh is the first researcher, I believe to validate Dr. Mikovits statement. The semen, of course, have significant implications for the possibility of transmission.

Chronic Fatigue Syndrome - The juice seemed to run out a bit when it came to ME/CFS, however. She has definitely made progress; the application states 2 XMRV antibodies have been found in a CFS patient and that most of the 'non-reactive' samples came from the healthy controls. Dr Singh also knows which XMRV antibodies to test for (SU, p15E) and which ones not to test for (CA - found in healthy people as well). We can guess that XMRV showed up more consistently in CFS patients than in the healthy controls - a nice start! - but we don't have any idea of what percentage of people with CFS she found it. It looks like we will have to wait for her paper for that.
DecemberDate for Phase II? - I asked Dr. Mikovits when she expected the Phase II of the Blood Working Groups effort to be complete? She said they hoped it would be complete by the next meeting of the Blood Advisory Groups - which is Dec. 14th
The Race Is On - In her latest blog Amy Dockser Marcus states that researchers are 'racing' to develop tests for XMRV.
Abbot Diagnostics, Gen Probe and Roche Diagnostics are hard at work and Roche says it believes it will have a test for researchers available in months. Gen Probe, on the other hand, is developing a test to detect an early warning XMRV test that can find XMRV after infection but before the immune system starts producing antibodies. The Cleveland Clinic, meanwhile, is developing a test that can find XMRV in the urine.

To get beyond the 'positive specimen controversy' that cropped up when the CDC was unable to find XMRV even in the samples the WPI had stated for positive, researchers at Abbott, Cleveland Clinic (which was part of the original study...) and Emory University are creating positive samples by infecting monkeys with XMRV.

The Antibody Tests Antibody test development is a hot item. Abbott, Cleveland Clinic and Emory together and Dr. Singh, working at ARUP labs, have each developed antibodies to three proteins on the virus. Dr. Bagni at the NCI has developed a test that is deemed positive if it reacts with (yes) three antibodies. (A positive result to an antibody test often requires that a person test positive to more than one antibody).

Cort Johnson | Lesen Sie mehr

22. November 2010
Erschöpft bis auf den Grund 
(Deutsch)

«Es begann im Oktober 2002», sagt Ursula Seiler (Name geändert). Die heute 41-jährige Bernerin stand voll ihm Berufsleben. «Ich hatte einen interessanten Job als Teamleiterin bei einem staatlichen Grossunternehmen.» Neben der Arbeit plante sie gerade ihre nächsten Ferien. Für die junge Frau kam ein banaler Strandurlaub nicht in Frage. «Ich suchte immer das Individuelle, das Abenteuer.» Und dieses Mal wollte sie sich einen alten Traum erfüllen: Australien! Das Flugticket war schon gebucht.

«Doch dann überfiel mich plötzlich eine ungewohnte Erschöpfung.» Ursula Seiler dachte an Überarbeitung, Herbstmüdigkeit, gönnte sich mehr Ruhe. Doch trotz viel Schlaf wich die bleierne Müdigkeit nicht. Ihr Chef gewährte ihr drei Tage Auszeit. Danach fühlte sie sich besser. «Ich ging wieder zur Arbeit, doch schon nach einer Stunde war ich völlig fertig», erzählt Seiler. Sie ging zum Arzt. Dieser machte die üblichen Untersuchungen, fand nichts und empfahl zuerst ein Fitnesstraining. «Die ersten Tage ging das gerade so», so Seiler. Dann kam der Zusammenbruch. «Zur völligen Erschöpfung kamen Schwindel und Schlafstörungen.» Der Arzt überwies sie ans Tiefenauspital, wo umfangreiche Untersuchungen durchgeführt wurden.

22. November 2010
Dr. Enlander über XMRV/MLV 
(Englisch)

The XMRV Buzz -short takes on the world of XMRV – now be appearing regularly on “Bringing the Heat” Blog

Unbroken – the Louis Zamperini and Laura Hillenbrand Story - no it’s not about XMRV but it is about Lauren Hillenbrand and that means CFS. She is a great spokeswoman for CFS and Louis Zamperini was a great vehicle for her next book, seven years in the making and which she says both brought her life and cost her physically.

A Mouse Model for XMRV - And now to one of the more interesting twists – developing a mouse model for an er…mouse derived virus? Of course we now know that XMRV does not appear to be found in the mice much (if at all) either in the wild or in the lab (which does kind of make one wonder how it managed to contaminate the WPI’s samples……if the worry was contamination from lab mice and it’s not actually in lab mice….then how did it???? Never mind)… the key with this study is that researchers have found a mice they can manage to infect XMRV with (it wasn’t easy), and now that they can do that they can make them ill, probe them, dissect them, feed them drugs, whatever….essentially the way is clear for the magnificent animal research establishment to go to town.

Cort Johnson | Lesen Sie mehr

22. November 2010
Kognitive Verhaltenstherapie (CBT) 
(Englisch)

Dr. Friedberg is an intriguing figure; a psychologist questions the effectiveness of CBT and who, as President of the IACFS/ME, has taken the CDC to task for beginning CBT trials yet someone who is also believes that pacing and 'stress management' can pay real dividends for some people with ME/CFS.

In this long interview he talks about the differences he sees between people with ME/CFS and FM, men and women with ME/CFS, the importance, in the absence of a cure of accepting 'half a loaf and creating joy and pleasure, how improved health does not necessarily result in increased activity, why the cognitive in CBT may be over-emphasized, what he has done as a person with CFS that has helped and more. I published the first part of his interview in 2009 but recently I realized, that I 'd never published the second half of it -which was easily the most interesting part, so here is the interview, for the first time, in full. Please note it was done pre-XMRV.

I realize this is not everybody's cup of tea but my guess is that the kinds of practices he refers to probably can be helpful in improving the quality of life of many people with chronic illnesses.

22. November 2010
Lannie's Bericht über "Repeat Exercising Testing" 
(Englisch)

On the Forums this week we are blessed by an intriguing series in which Lannie recounts what she learned while doing Repeat Exercising Testing (the Steven's Protocol) at the Pacific Fatigue Lab. Some may remember the "Cracking the Foundation' newsletter that recounted the PFL's startling findings of a metabolic abnormality unique to ME/CFS that could conceivably underly many of the problems we encounter during exercise.
Lanny first recounts the tests she will take, then her experiences taking them and then finally her test results and what they mean. Thanks to Lannie for giving us a close encounter with one of the most intriguing areas of research in ME/CFS.

21. November 2010
Offene Ampligen-Studie 2011 
(Englisch)

Patients interested in participating in an open-label trial for the experimental ME/CFS drug Ampligen should contact Ali Allen or Kristin Pierce at Dr. Lucinda Bateman's office in Salt Lake City, Utah, for more information. Depending in part upon patient response, Bateman may elect to conduct a trial in 2011. With an open-label trial, all patients receive the investigative drug.

The drug cost will be approximately $6,700 for the first six months, which will include extensive testing to determine eligibility, and $7,200 for each additional six-month period.

CFS Central | Lesen Sie mehr

18. November 2010
Letzte Neuigkeiten 
(Englisch)

No Surprise - news that even our Utah XMRV/MLV expert was finding XMRV more complicated than expected probably should have come as no surprise...broken timelines have been maybe the most consistent thing we've been able to observe with XMRV. Consider these
(*)WPI, with Glaxo Smith Kline reportedly on board, was reported to expect treatment trials to begin within six months of the Science publication. (*)At the CFSAC meeting late last year Dr. Coffin thought we'd have the answer 'within six months'
(*)The antibody tests were promised and promised....but eventually they did arrive (so there's hope :)) (*)The WPI started with one set of methods in the Science paper and then brought forth an improved set about five months later (*)Dr. Singh's study is taking a bit longer than expected because - a PR Forum member was just told - it's more complicated than expected (*)Dr LeGrice and Dr. Glynnis just a month ago thought Phase II would wrap up about 10 days ago....
Who wants to bet on Phase III being wrapped by New Years? XMRV is clearly complicated. It's definitely past time to stop expecting anything to happen on a timeline. All we know for sure is that the results won't be done until they are done - and not a second before.

Cort Johnson | Lesen Sie mehr

18. November 2010
Fragen im österreichischen Nationalrat an den Gesundheitsminister, betreffend CFS 
(Deutsch)

Schriftliche Anfrage der Abgeordneten Dr. Wolfgang Spadiut, Kolleginnen und Kollegen an den Bundesminister für Gesundheit betreffend Chronic Fatigue Syndrom (CFS).

Anfragebeantwortung durch den Bundesminister für Gesundheit Alois Stöger, diplômé zu der schriftlichen Anfrage (6385/J) der Abgeordneten Dr. Wolfgang Spadiut, Kolleginnen und Kollegen an den Bundesminister für Gesundheit betreffend Chronic Fatigue Syndrom (CFS).

17. November 2010
Suzanne Vernon's Take on Two XMRV Studies 
(Englisch)

Dr. Suzanne Vernon, scientific director of the CFIDS Association, recently penned a commentary on three recent XMRV studies. Two of them—the Barnes study in England and the Henrich study in the U.S.—failed to find XMRV. Only the Donaldson study at Baylor College of Medicine in Houston found XMRV, in prostate cancer patients.

Henrich looked at several groups of immunocompromised patients, including those with CFS, HIV, transplants and rheumatoid arthritis. Barnes examined the blood of patients with HIV or hepatitis C.

By email, I asked Vernon to expound on these two XMRV negative studies. Her comments are in green.

CFS Central | Lesen Sie mehr

14. November 2010
Eine CFS-Gutachtergruppe für CFS 
(Englisch)

A Head-Splitter – Of all the problems at the NIH the makeup of the panel that reviews and scores ME/CFS grants – called the CFS SEP – may have been the most head-splittingly frustrating. No subject is guaranteed to raise blood pressure levels more quickly and perhaps, no other group has been more effective at throttling the life out of nascent CFS research efforts. For many researchers the CFS SEP was ground zero for what was wrong with the NIH.


The panel is composed of researchers who review and rate ME/CFS grant applications. A poor score means months of grant preparation is thrown out the window. Ironically the group was formed, well over a decade ago, to provide a home for CFS researchers where they would be insulated from the negative connotations surrounding the disorder at the NIH – it was supposed to make things better; somehow it ended up making things worse.

Cort Johnson | Lesen Sie mehr

14. November 2010
Das neuste der letzten Tage 
(Englisch)

The Patient Community Twists and Turns and the Blood Working Group Remains Mum A month earlier Dr. Glynnis at the CFSAC panel Oct 14th (1:45:28) stated
"We hope we'll be able to have results of this ongoing study by early November and it is our plan certainly to immediately release the results because we think they will be extremely important to the scientific community ....so that the optimal preparations of the samples will be known."

Amy Dockser Marcus's blog in the WSJ stating that Dr. Lipkin, who is reportedly going to use BWG findings for his study, met with federal officials, researchers and advocacy reps to discuss how his study will now proceed, of course, set off a firestorm of speculation. Was the BWG done? Why have a meeting if it wasn't? If it was, why not release the results?

Cort Johnson | Lesen Sie mehr

6. November 2010
Kelvins Erfahrungen mit Ampligen 
(Englisch)

On a whim, after my Ampligen infusion last Thursday I went to the airport, bought a ticket for a 4 hour non-stop flight, and flew to Denver, Colorado! By myself! I then rented a car, drove an hour North, and spent the weekend in beautiful Ft. Collins, enjoying the crisp clean air underneath the majestic Rocky mountains.Yes, this means that I had enough energy and cognitive ability to follow a map to a place I'd never been, check into a hotel, and live at mile-high altitude. Yes, this means that the Ampligen is working better than advertised, and that my health is actually being restored. But it also meant something else of equal importance. Let me explain.

To say I have felt like a horse cooped up in a corral for the past 10 months would not be an exaggeration. As you know, when I moved here to begin the twice-weekly Ampligen infusion protocol, I could barely walk. Because my wife couldn't stay with me full time in this new town, we hired a cook and a maid to help me. That I needed this level of assistance when I started was not over-kill; I literally could not stand long enough to fry myself an egg ten months ago. Apart from going to the clinic every Monday and Thursday to get pricked by Gwen, for the first six months I was pretty much a one-trick pony. Week after week I would live on the couch, leaving my "pen" only to go to the clinic, and occasionally to church on Sunday. Having the helpers was awesome, but I still felt like I was in a modern prison.

Cort Johnson | Lesen Sie mehr

4. November 2010
Behandlung auf die britische Art 
(Englisch)

In 2008 the ME Association conducted what maybe the most comprehensive survey of treatment effectiveness ever done in ME/CFS. Over four months 4,217 people took part, most of them online. It was by no means complete with twenty five treatments or treatment types covered but it did provide a broad overview of treatment effectiveness in the UK. Unfortunately protocols were not a part of the survey.

Duration and Severity: Most people (44%) had had ME/CFS for over ten years and most answered the question “how does the illness affect your current state of health?” by answering moderately (57%) with 28% reporting that it effected their health ‘mildly’-28%, and 15% severely. Asking how ME/CFS affects your ‘current’ state of health was somewhat ambiguous and may account for the surprisingly high percentage of people (almost 30%) who stated it only ‘mildly’ effected their ‘current state of health’ (How does CFS only ‘mildly’ effect ones ‘current state of health’?)

Surprisingly only 28% in the UK reported being told (by their physician?) that their illness was psychological but it was telling that 23% were uncertain whether (their physician?) viewed their illness as psychological or not. To the question “Any mental health diagnosis is a part of your illness?”, on the other hand, 46% and 38% were told that depression and anxiety were ‘major’ problems.

Cort Johnson | Lesen Sie mehr

1. November 2010
Time for Action - auch in Deutschland 
(Deutsch)

Erster Jahrestag der Veröffentlichung der Science-Studie zum Zusammenhang von XMRV und ME/CFS -
und was hat die Bundesregierung getan?
Kommentar und Aufruf von Regina Clos

In den britischen Medien gab es, Zufall oder nicht, zum ersten Jahrestag der Veröffentlichung der Science-Studie am 9. Oktober 2009 zahlreiche Artikel und Berichte über das vom 1. November 2010 verhängte lebenslange Verbot für britische ME/CFS-Patienten, Blut zu spenden.
Nach der offiziellen Verlautbarung wurde dieses Verbot erlassen, um die Gesundheit der Menschen mit ME/CFS zu schützen. NHS Blood and Transplant sagte in einem BBC-Artikel, das Verbot sei "eine Vorsichtsmaßnahme für die Sicherheit der Blutspender, um zu verhindern, dass sich ihr Gesundheitszustand durch eine Blutspende verschlechtert."
Was für eine Verdrehung, was für eine auf den ersten Blick fürsorgliche, auf den zweiten Blick heuchlerische und zynische Behauptung! Das Blutspendeverbot wird begründet mit der Sorge um die Gesundheit von blutspendenden ME/CFS-Patienten!
Seit wann kümmert sich die Regierung Großbritanniens (und auch aller anderen EU-Länder) um das Wohl der ME/CFS-Patienten? Wurden sie nicht jahrzehntelang als psychisch krank, als Hypochonder, Neurastheniker, Simulanten oder Menschen mit einer somatoformen Störung abgestempelt und ignoriert?
Werden sie nicht bis zum heutigen Tag beschuldigt, nur an ihren "falschen Krankheitsüberzeugungen", an "übermäßiger Schonhaltung" und daraus resultierender "Dekonditionierung" zu leiden, sprich, sich alles nur einzubilden, im Internet anzulesen und sich auf die faule Haut zu legen? Und nun will man sie schützen vor der Gefahr des Blutspendens?? Ausgerechnet das??? Wer, bitteschön, der an ME/CFS leidet und täglich ums Überleben kämpft, geht auch noch zum Blutspenden?

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1. November 2010
Interview mit Dr. Wilfried Bieger 
(Deutsch)

Herr Dr. Bieger, Sie haben bei der Fatigatio-Tagung in Dortmund einen Vortrag gehalten – konnten Sie denn selbst auch einige Impulse mitnehmen, insbesondere von den beiden ausländischen Referenten aus den USA?

Für mich war herausragend der Vortrag und auch die Diskussion mit Frau Dr. Mikovits aus den USA über den neuen Retrovirus XMRV, das steht für mich außer Frage.

Der Vortrag von Herrn Prof. Pall war mir schon bekannt, weil ich ihn schon zweimal gehört habe. Für mich persönlich ist das Phänomen der Mitochondriopathie oder der Entstehung von oxidativem Stress und nitrosativen Metaboliten ein Teil des Krankheitsgeschehens und nicht der wesentliche Prozess als solcher.

Für mich steht bei CFS das chronische entzündliche Geschehen im Vordergrund, und eine Folge jeder chronisch entzündlichen Aktivierung ist unter anderem, dass vermehrt oxidative Metaboliten entstehen, die dann auch Teil des pathologischen Geschehens werden. Über die vermehrten oxidativen Metaboliten werden natürlich auch die Mitochondrien etwas in Mitleidenschaft gezogen, so dass, wenn man so will, auch eine Mitochondriopathie als Teil des chronisch-entzündlichen Geschehens auftritt, also, nicht als primärer oder wesentlich relevanter Prozess für sich, sondern als Teilphänomen des gesamten Geschehens.

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1. November 2010
Neues zu XMRV 
(Deutsch)

Die Neuigkeiten rund um die XMRV-Forschung und deren Diskussion und Bewertung in verschiedenen Gremien, Institutionen und Politik sind derzeit so umfangreich, dass hier nur ein kleiner Ausschnitt wiedergegeben werden kann.
Die neue Ausgabe des Retrovirus Bulletins des Virologischen Instituts der Universität Erlangen - hier insbesondere der Artikel von Nicole Fischer (S. 4-7)über XMRV. Dieser Artikel fasst den derzeitigen Stand der Forschung - auch der Negativstudien zusammen und erklärt einige der immunologischen Abläufe bei einer Retrovirus- bzw. XMRV-Infektion. Hier ist ein weiterer Artikel von Nicole Fischer über das humane APOBEC-3-G-Protein, das die XMRV-Infektion signifikant hemmt. Und hier findet sich ein dritter Artikel von ihr.
Die Sitzung des CFS Advisory Committees der US-Regierung im Oktober
Die Gründung der Blood XMRV Scientific Research Working Group
Die Veröffentlichung der Abstracts des 1st Workshop on XMRV vom 7.-8. September 2010 - hier finden sich sehr viele spannende Studien, u.a. die Studie an britischen ME/CFS-Patienten, die Studie an Rhesusaffen, die man mit XMRV infiziert hat, die Autismusstudie und die Snyderman-Studie:
Snyderman-Studie zur antiretroviralen Behandlung von XMRV-positiven Patienten mit Mantelzell-Lymphom und Chronisch Lymphatischer Leukämie
Protokolle von der Rede von Judy Mikovits bei der New Jersey Chronic Fatigue Syndrome Association am 17. Oktober 2010 - darin ist besonders erwähnenswert die Britische XMRV-Studie
und die gerade veröffentlichte norwegische Studie
Zum Zusammenhang von XMRV und Autismus - ein erhellender Bericht eines betroffenen Vaters

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1. November 2010
Fünf Jahre CFS-aktuell - eine Zwischenbilanz 
(Deutsch)

Angesichts dieses zweifelhaften "Jubiläums", das eher kein Anlass zum Feiern ist, sind mir folgende Gedanken gekommen:
In den fünf Jahren seit Beginn dieser Website hat sich wohl noch kaum etwas daran geändert, wie die Patienten von Ärzten, Versicherungen und Sozialbehörden "be"-handelt werden, um nicht zu sagen: misshandelt, aber die Patientenbewegung ist in dieser Zeit sehr viel stärker geworden. Fühlte ich mich vor fünf Jahren noch weitgehend alleine (weshalb ich ja dieses einsame Projekt gestartet habe, um wenigstens irgendetwas zu tun), so sind jetzt viele kluge Menschen zu unserer Bewegung hinzugekommen, und wir kämpfen in einem Netzwerk, das uns stärkt und den Mut nicht verlieren lässt. Das ist eine wunderbare Erfahrung. ABER:
5 Jahre cfs-aktuell, 17 Jahre Fatigatio e.V., ein Jahr Bündnis ME/CFS, viele verlorene Leben und unendliches Leid der Betroffenen und ihrer Familien - wie viele Jahre sollen wir noch kämpfen, bevor sich etwas ändert an unserer Situation?

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1. November 2010
Kommentar zu der Fachtagung des „Fatigatio e.V.“ 
(Deutsch)

Diese Tagung hat gehalten, was sie versprach. Wegweisende Diagnostik und Therapiemöglichkeiten wurden vorgetragen. Das Krankheitsbild der chronischen Erschöpfung (CFS/ME) wurde aus unterschiedlichen Blickwinkeln betrachtet. Trotz unterschiedlichen Aspekten erscheinen alle dennoch miteinander vereinbar zu sein, da durchaus von Kombinationsschädigungen ausgegangen werden muss.

Die biochemische Beschreibung des Stickstoff/Peroxynitrit-Zyklus (NO/ONOO-cycle) spielt nicht nur bei CFS/ME eine Rolle, sondern bei vielen schweren Erkrankungen. Seine Rolle in den verschiedensten Krankheitsgeschehen ist bereits eindeutig in der internationalen medizinischen Literatur belegt und anerkannt. Um den Weg dahin zu bahnen, dass auch CFS/ME auf diesen Zyklus wirklich zurückzuführen ist, wird es in Zukunft wichtig sein, vor allem 3-Nitrotyrosin und TNF-alpha als relativ stabile Marker des nitrosativ-oxydativen Stresses routinemäßig in die Diagnostik mit einzubeziehen. Es bleibt aber dennoch zu überprüfen, ob das tatsächliche Befinden des Erkrankten und diese Laborwerte auch wirklich übereinstimmen.

Sollten sich die Forschungshinweise verdichten, dass bei schwer verlaufendem und fortschreitendem CFS ein Retrovirusbefall bzw. eine anderweitige reaktivierte Infektion vorliegt, wäre eine klare kausale Ursache gefunden, die sicher auch Akzeptanz der Ärzte bewirken würde. Mehrere der Vortragenden wiesen darauf hin, dass zu erwarten ist, dass nicht nur eine Art von Erreger bei allen Patienten gefunden wird, sondern möglicherweise sehr viele unterschiedliche.

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4. November 2010
Behandlung auf die britische Art 
(Englisch)

In 2008 the ME Association conducted what maybe the most comprehensive survey of treatment effectiveness ever done in ME/CFS. Over four months 4,217 people took part, most of them online. It was by no means complete with twenty five treatments or treatment types covered but it did provide a broad overview of treatment effectiveness in the UK. Unfortunately protocols were not a part of the survey.

Duration and Severity: Most people (44%) had had ME/CFS for over ten years and most answered the question “how does the illness affect your current state of health?” by answering moderately (57%) with 28% reporting that it effected their health ‘mildly’-28%, and 15% severely. Asking how ME/CFS affects your ‘current’ state of health was somewhat ambiguous and may account for the surprisingly high percentage of people (almost 30%) who stated it only ‘mildly’ effected their ‘current state of health’ (How does CFS only ‘mildly’ effect ones ‘current state of health’?)

Surprisingly only 28% in the UK reported being told (by their physician?) that their illness was psychological but it was telling that 23% were uncertain whether (their physician?) viewed their illness as psychological or not. To the question “Any mental health diagnosis is a part of your illness?”, on the other hand, 46% and 38% were told that depression and anxiety were ‘major’ problems.

Cort Johnson | Lesen Sie mehr