TIRED.CH

Die praktische Unterstützung für ME/CFS Betroffene

TIRED.CH

Die praktische Unterstützung für ME/CFS Betroffene

tired.ch

    Alles über die ME/CFS Stoffwechselstudie (Naviaux und Hanson)

    5. September 2016 
    Ausführlicher Bericht über die Studie von Robert Naviaux (Anomalien bei Stoffwechselprodukten)
    (English)

    Naviaux's Studie wird als wichtigste und wegweisende Studie zu ME bezeichnet

    Metabolic features of chronic fatigue syndrome. Robert K. Naviauxa,b,c,d,1, Jane C. Naviauxa,e, Kefeng Lia,b, A. Taylor Brighta,b, William A. Alaynicka,b, Lin Wanga,b, Asha Baxterf, Neil Nathanf,2, Wayne Andersonf, and Eric Gordon. www.pnas.org/cgi/doi/10.1073/pnas.1607571113
    Naviaux began the paper touting the advantages he believes metabolomics brings for the analysis and treatment of complex diseases. At the most basic level there’s our genes and the environment and not much else. Throw these two together and you get metabolism and metabolites – the byproducts of cellular function. Measuring these metabolites gives you an snapshot of the cells physiology. Naviaux believes studying the metabolic by-products of our cells provides more biologically relevant information than any other approach and is more cost-effective as well.

    In this study Naviaux, Eric Gordon, Neil Nathan and others examined 612 metabolites from 63 biochemical pathways in the serum of 45 ME/CFS patients (Fukuda / CCC criteria) and 37 age and sex-matched controls.
    Twenty of the 63 biochemical pathways in the ME/CFS were highlighted in ME/CFS. Eighty percent of the metabolites that were abnormal were down-regulated. Nine of the biochemical pathways were altered in both men and women.

    HealthRising

    5. September 2016 
    Ausführlicher Bericht über die Studie von Robert Naviaux (Anomalien bei Stoffwechselprodukten)
    (English)

    Naviaux's Studie wird als wichtigste und wegweisende Studie zu ME bezeichnet

    Metabolic features of chronic fatigue syndrome. Robert K. Naviauxa,b,c,d,1, Jane C. Naviauxa,e, Kefeng Lia,b, A. Taylor Brighta,b, William A. Alaynicka,b, Lin Wanga,b, Asha Baxterf, Neil Nathanf,2, Wayne Andersonf, and Eric Gordon. www.pnas.org/cgi/doi/10.1073/pnas.1607571113
    Naviaux began the paper touting the advantages he believes metabolomics brings for the analysis and treatment of complex diseases. At the most basic level there’s our genes and the environment and not much else. Throw these two together and you get metabolism and metabolites – the byproducts of cellular function. Measuring these metabolites gives you an snapshot of the cells physiology. Naviaux believes studying the metabolic by-products of our cells provides more biologically relevant information than any other approach and is more cost-effective as well.

    In this study Naviaux, Eric Gordon, Neil Nathan and others examined 612 metabolites from 63 biochemical pathways in the serum of 45 ME/CFS patients (Fukuda / CCC criteria) and 37 age and sex-matched controls.
    Twenty of the 63 biochemical pathways in the ME/CFS were highlighted in ME/CFS. Eighty percent of the metabolites that were abnormal were down-regulated. Nine of the biochemical pathways were altered in both men and women.

    HealthRising

    5. September 2016 
    Hanson’s Stoffwechsel ME / CFS-Studie bestätigt Naviaux's Kernaussage
    (English)

    Naviaux noted that the field is moving so quickly that it lacks standardization and this study showed it. The Hanson team used a different kind of mass spectrometer, and handled the samples differently. In fact, the way Hanson was talking, it sounded like everything was done differently in the Hanson study.

    Nevertheless, Hanson's core findings were strikingly similar to Naviaux's. She found an almost across the board reduction in metabolite levels; fully eighty-eight percent of the metabolites in the ME/CFS patients were reduced (compared to 84% in Naviaux's study.)

    Some similar pathways (phospholipids, purines, proline, fatty acid metabolism) showed up and others did not. The dramatic sphingolipid reductions Naviaux found, for instance, did not show up in the Hanson study, and Hanson found several pathways that did not show up in the Naviaux study.

    Hanson suggested that the completely different methods used as well as the different geographic region the patients hailed from could explain the differences found. Whatever the differences found, the core finding of a distinct hypometabolism in chronic fatigue syndrome (ME/CFS) clearly excited Hanson and she stated:
    "The similarities are very promising for metabolomics to give some very useful information about ME/CFS"
    Hanson's metabolomic money is gone, but she's applying for an NIH grant. Scoring a big ROI grant - say $3,000,000 over several years - would, of course, be a major step forward for metabolomic research in ME/CFS.

    HealthRising

    Alles zu den Enthüllungen der PACE CBT / GET-Studie

    5. September 2016 
    Investigativer Reporter vernichtet PACE CBT / GET-Studie: Aufruf für unabhängige Überprüfung
    (English)

    “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”​ Dr. Ronald Davis, Stanford University
    Expensive-health-care
    Was the most expensive ME/CFS study ever built on a house of cards?
    David Tuller has published several long pieces on chronic fatigue syndrome but his piece “TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study” on the UK’s federally funded PACE CBT/GET trial may be the most impactful. The trial with it’s many problems proved to be catnip for this investigative journalist – there was just so much there…
    Tuller’s findings are being published in a three part series on Vincent Raccaniello’s Virology Blog. Parts I and II have been released.
    Part I
    Part II
    Why is the PACE trial worthy of such attention? Because of all the attention it got. The $8,000,000, 600 person plus trial published in 2011 is still surely the biggest most expensive study ever done in ME/CFS. Proponents hoped the trial – and its sister trial the FINE trial – would prove that CBT/GET was the answer to chronic fatigue syndrome. The trials were expected to provide the foundation for the UK government to further broaden it’s commitment to these practices.
    Seven years and two and half million dollars later the 300 patient FINE trial, however, flamed out, producing insignificant effects after one year.

    HealthRising

    5. September 2016 
    Neubewertung der CBT und GET Schlussfolgerungen
    (English)

    In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations.

    The 2014 AHRQ evidence review had originally reported that treatment with CBT and GET improved fatigue, function, global improvements, and employment in ME/CFS patients. This conclusion was based on an analysis that combined studies using any of seven CFS and ME definitions as though they represented the same disease. We highlighted this fatal flaw in our comments on the draft evidence review. The review itself acknowledged that CFS definitions did not require hallmark symptoms of the disease, that no treatment studies used ME/CFS or ME definitions, and that the Oxford definition was so broad that it would include patients with other diseases and should be retired. The 2015 NIH Pathways to Prevention report concurred that Oxford should be retired, stating that it could “impair progress and cause harm.” And yet, the 2014 AHRQ evidence review maintained its conclusion that CBT and GET could benefit some “ME/CFS” patients, based in substantial part on studies that used the Oxford definition.

    Occupy M.E.

    5. September 2016 
    Londoner Gericht ordnet die Veröffentlichung der PACE Studiendaten an
    (English)

    Today’s decision means it’s likely the PACE trial, which ME/CFS patients have long objected to, will be forced release its underlying research data. We believe a review of this data will substantiate the study as invalid, which patients and other researchers have long believed.

    This is an important development in the protracted legal and scientific battle regarding the PACE trial, whose results have caused patient harm. Today’s ruling will secure the release of the PACE trial data so long as the university does not decide to appeal to the Upper Tribunal.

    PACE trial results, published in 2011 by The Lancet, were immediately controversial, concluding that exercise and psychotherapy were the most beneficial treatment regimens for patients with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS). The Solve ME/CFS Initiative and many others have repeatedly called for a full retraction of the PACE trial and critical review of the results, seeing as the PACE treatment approach has been shown by follow-up studies to be at best ineffective and at worst harmful to patients.

    Solve ME/CFSInitiative

    7. September 2016 
    Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt
    Dreiteilige Blogserie der Huffington Post

    (Deutsch)

    Resultate der GET / CBT - Studie von Prof. Peter White widerlegt!

    Resultate der GET / CBT - Studie von Prof. Peter White widerlegt! Es stimmt nicht, dass GET oder CBT zu einer Besserung des Gesundheitszustandes für ME/CFS Patienten führt
    Im dritten Teil der dreiteiligen Blogserie (Studie zum Erschöpfungssyndrom: Wenn die Wissenschaft versagt) der Huffington Post wird auch auf die Bahnbrechende Studie von Prof. Naviaux hingewiesen.

    In einem Interview zur Publikation beatwortete Prof. Naviaux die Frage, ob diese Entdeckung der chemischen Signatur dabei hilft den Mythos, die Erkrankung existiere nicht, sondern nur in den Köpfen der Erkrankten, niederzuschmettern, mit folgenden Worten:
    "Ja! Die chemische Signatur, die wir entdeckten, ist der Beweis dafür, dass CFS eine objektive Stoffwechselstörung ist, die den mitochondrialen Stoffwechsel betrifft, die Immunfunktion, die Magen-Darm-Funktion, das Mikrobiom, das autonome Nervensystem, das neuroendokrine und weitere Gerhirnfunktionen. Diese 7 Systeme sind alle in einem Netzwerk verbunden, welches in ständiger Kommunikation steht."
    Diese Studie wird als wichtigste und wegweisende Studie zu ME bezeichnet.

    HuffingtonPost

    Ein weiterer vierteiliger Artikel zu der GET / CBT Studie in englisch können Sie weiter unten lesen indem Sie auf die jweiligen Links klicken

    7. September 2016 
    Unterzeichnen Sie die Pace Studie Kampagne!
    (Deutsch)

    In Anbetracht der Schwachen und fehlerhaften Methoden, die bei der PACE Studie angewandt wurden, welche behaupten, dass kognitive Verhaltenstherapie (cognitive behavioural therapy – CBT) und stufenweise Aktivierung (graded excersise therapy – GET) zur Gesundung von Patienten mit Myalgischer Enzephalomyelitis (Chronischem Erschöpfungssyndrom) (ME/CFS) führten, rufen wir, die unterzeichneten Patienten, Ärzte, Wissenschaftler, Eltern, Kinder, Familien und Pfleger und Erschöpfungssyndromverbündete (#MEallies)

    – “The Lancet” dazu auf, die Behauptung, die im Leitartikel [1] im Februar 2011 im beigefügten Lancet-Artikel über die PACE Studie [2] dass 30% aller Patienten und in der Tat alle Patienten ihre Gesundheit wiedererlangt haben aufgestellt wurde, zu wiederrufen; und alle Analysen und Aussagen in Hinsicht auf den absurden “Normalbereich” für Erschöpfung und Körperfunktion zu widerrufen.
    – Die psychologische Medizin dazu auf, ihre Behauptung in dieser Fachzeitschrift, das 22% der Patienten, die sich in den kognitiven Verhaltenstherapien- und stufenweise Aktivierungsgruppen befanden, wieder gesund geworden sind, in Anbetracht der Genesungskriterien, die so weit von ihrer Originalform abgeschwächt wurden, dass sie weiterhin keine Erholung durch einen vernünftigen Maßstab darstellen, zu wiederrufen.

    – Die Autoren dieser Studie dazu auf, die Genesungsergebnisse gemäß der festgelegten Analysen des Studienprotokolls [4] zu veröffentlichen und unabhängigen Forschern vollen Zugang zu den Originaldaten zu gewähren (anonymisiert durch die Löschung von Studienidentifizierten und allen anderen Daten, die der Ermittlung überflüssig sind, sowie Alter, Geschlecht oder Ortsangaben). #MEAction verpflichtet sich angemessene Auswertungskosten oder Datenerstellungen zu uebernehmen.
    – Alle Beteiligten dazu auf, die Auffassung der PACE Studie, das Patienten eine normale Körperfunktion erlangt haben, wenn sie eigentlich so schwerbeschädigt wie Patienten mit kongestiver Herzinsuffienz sind, abzulehnen.

    MEACTION

    5. September 2016 
    Endlich, PACE - Studiendaten freigegeben
    (English)

    Endlich wurden die Studiendaten freigegeben. Zwei englischsprachige Artikel behandeln dieses äusserst wichtige Thema für uns ME/CFD Patienten.

    In 2011, results were published for a five-year study conducted to determine what therapies, if any, are effective in treating ME. The PACE trial concluded that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were effective treatments. Almost immediately, ME patients were concerned about the validityof the study methodology and requested additional information. A multi-year legal battle ensued, involving prominent UK institutions. Patients were concerned not only that the study protocols were not sound, but that the results could be harmful to patients.

    Finally, this month, Queen Mary University of London (QMUL) surrendered to last month’s order by a First-Tier Tribunal to release critical data from the PACE trial. This news comes just three days after the publication of an open letter from top scientists and researchers, including SMCI’s own Dr. Zaher Nahle, urging QMUL not to appeal the First-Tier Tribunal’s decision.

    HealthRising

    Solve ME/CFSInitiative

    23. September 2016 
    Erste Ergebnisse der nun veröffentlichten PACE Studie online
    (English)

    Erste Ergebnisse sind nun bekannt geworden. Es sieht tatsächlich so aus als wenn die Studie eine grosse Lüge wäre.

    Data analysis Puts PACE Trial on Slippery Slope to Retraction
    Indeed, there’s been little evidence of the kind of “professional behavior” patients might expect from the medical establishment. Richard Horton, the chief editor of The Lancet, has seemed at times almost unable to contain himself. He rued the million or so dollars he said the UK government had spent responding to irrelevant and vexatious Freedom of Information Act requests. He stated that the fast-tracked study had undergone “endless” rounds of peer review. In his view the people protesting were nothing more than a hostile clique out to destroy good science.

    Horton’s dissembling in a 2011 interview turned out to be breathtaking. Horton suggested that the patient communities ability “to engage in a proper scientific discussion” would be tested by the study. In 2015, however, it was Horton who ignored a letter from 42 researchers and doctors regarding the flaws of the trial.

    Preliminary analysis of newly released PACE trial data confirms initial publication results were unsound – September 21, 2016
    Great news and huge success illustrating the power of ME/CFS patient advocates

    A preliminary re-analysis of the newly released PACE trial data was published today revealing that the initial results of the PACE trial included significantly inflated “recovery” rates, from 4% to 22%, attributed to exercise therapies.

    The PACE trial results, published in 2011 by The Lancet, were immediately controversial, concluding that exercise and psychotherapy were the most beneficial treatment regimens for patients with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS). The Solve ME/CFS Initiative and many others have repeatedly called for a full retraction of the PACE trial and critical review of its results. The PACE treatment approach has been shown by follow-up studies to be ineffective and potentially harmful to patients and yet continues to be cited by doctors and government officials alike.

    HealthRising

    Solve ME/CFSInitiative

    26. März 2017 
    New York Times bestätigt die Lächerlichkeit der Pace Studie
    (English)

    It's not often that you see the words "chronic fatigue syndrome" on the New York Times front page but there they were. The title of Julie Rehmeyer and David Tuller's op-ed piece on the PACE trial, "Getting It Wrong on Chronic Fatigue Syndrome", was highlighted there in bold for about half a day.

    It's not easy to get on the editorial page of the most influential newspaper in the West. Hundreds send submissions in but only a select few get published.

    Getting-Wrong-on-Chronic-Fatigue.jpg I know - I tried. I thought I had a drop-dead, sure to be published article. Submitted when the film Unbroken came out, it was timely, had a hot title, I thought ("Why Laura Hillenbrand Will Never Get Well"), included a great story (Laura's) and provided some juicy facts about the NIH's decades long neglect of over a million Americans. It was a sure winner, I thought…I never heard back.

    So who does get on the opinion pages of the second most read newspaper in the U.S. ? A look at the recent op-eds found that authors, professors, politicians and sometimes world renowned figures populate the NY Times Opinion pages. The op-ed section of the New York Times is clearly where the elite go to communicate their thoughts.

    The reason I checked is that I don't think Julie Rehmeyer and David Tuller, as good as they are, got into the NY Times opinion pages on the strength of their credentials. They got in there on the strength of a story of scientific malfeasance which is still playing out. It's important to note here that the New York Times applies the same rigorous fact-checking they do in their regular articles to the op-ed pages. Nobody gets into the op-ed pages spouting false facts. The presence of the piece in the New York Times tells the world that Rehmeyer's and Tuller's facts check out.

    HealthRising

    New YorkTimes

    Andere interessante Studien

    11. September 2017 
    Gemeinschaftssymposium zur molekularen Basis von ME/CFS an der Universität Standford
    (English)

    My Image

    Der erste Artikel von Cort Johnson gibt einen wunderbaren Überblick über das stattgefundene Symposium.

    Artikel zwei und drei:
    Wie Sie sicherlich schon gehört haben, war das kürzlich stattgefundenes Gemeinschaftssymposium zur molekularen Basis von ME/CFS an der Universität Standford ein Riesenerfolg.

    Die Details des Symposiums können Sie jetzt in zwei Teilen von Raeka Aiyar nachlesen, die das Symposium moderiert hat:

    Ein zusammenfassender Artikel, der ursprünglich auf dem Stanford School of Medicine Blog veröffentlicht wurde.
    Ein detaillierter Bericht auf Storify, der den Ablauf des Symposiums in einem illustrativen, leicht verständlichen Format erzählt. Fotos, Social Media-Highlights, Links und weitere nützliche Ressourcen stehen für diejenige zur Verfügung, die sich intensiver mit dem Thema befassen möchten. Auch gibt es Videos auf YouTube vom ganzen Symposium.
    Leider ist bisher alles nur in englischer Sprache verfügbar.

    Der letzte Link führt Sie zu den Videos 1 bis 12 des Symposiums

    HealthRising


    OpenMedicineFoundation


    OpenMedicineFoundation

    YouTube

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    11. August 2017 
    Grosse Studie an der Stanford Universität macht Hoffnung
    (English)

    My Image

    "Es gab viel Kontroverse und Verwirrung um ME / CFS - auch wenn es eine tatsächliche Krankheit ist. Unsere Ergebnisse zeigen deutlich, dass es sich um eine entzündliche Erkrankung handelt und eine solide Grundlage für einen diagnostischen Bluttest bietet." MARK DAVIS

    There’s nothing like a high-profile study from a major university. For one thing it can get you publication in one of the most prestigious journals around. The  journal the Montoya/Mark Davis study was published in, The Proceedings of the National Academy of the Sciences, is the official publication of the National Academy of Sciences. Its website gets about 21 million hits a month; this study is going to get around.
    Dr. Jose Montoya, the leader of the Stanford Myalgic Encephalomyelitis/Chronic Fatigue (ME/CFS) Initiative  has been talking about this study for years. Now that it’s finally here, it’s making an impact with many media outlets picking it up.
    The results were positive and that was good news indeed. This was one study we really didn’t want to fail.

    SimmaronResearch

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    16. Juli 2017 
    Erste Ergebnisse einer interessanten und vielversprechenden Studie
    (English)

    Frühe Untersuchungsergebnisse geben Hinweise auf radikal verschiedene Immun-Untergruppen im Chronic Fatigue Syndrome (ME/CFS) hin.

    Die Infektions-Gruppe
    C-reaktive Proteinspiegel (CRP) begleiten eine Erschöpfung in etwa dreißig Prozent der ME / CFS-Teilnehmer. Dies deutet darauf hin, dass eine signifikante Anzahl von ME / CFS-Patienten eine zugrunde liegende Infektion haben könnte, die während ihrer schlechten Tage auftaucht.

    Die Autoimmun-Erkrankungen Gruppe?
    Eine Substanz namens fractalkine - die in vielen autoimmunen und entzündlichen Erkrankungen erhöht ist - begleitet mit den Ermüdungsstufen ein anderes Drittel der ME / CFS-Patienten. Fractalkine, dessen Freisetzung auch durch beschädigte Zellen ausgelöst wird, fördert die Produktion von entzündungshemmenden Zytokinen.

    Die Nicht-Immun-Gruppe?
    Im letzten Drittel der Patienten hat Younger noch kein Muster gefunden, was darauf hindeutet, dass die Ermüdungssymptome dieser Gruppe nicht durch das Immunsystem gelenkt werden können. Dies, schlägt Younger vor, könnte eine metabolische oder andere Gruppe sein.

    HealthRising

    14. Dezember 2016 
    Simmaron's Forschungsstiftung verdoppelt Gehirnforschung
    (English)

    A year ago, the Director of the National Institutes of Health announced a renewed commitment to ME/CFS research and the first intramural study of the disease in at least 20 years. The NIH study is designed to replicate Columbia’s findings with deep immunological, neurological and genetic testing. Advisors to the study include Dr. Ian Lipkin of Columbia University, Dr. Elizabeth Unger from the U.S. Centers for Disease Control, and recently Dr. Daniel Peterson.

    A critical design element of the study is the criteria for enrollment, which requires “post-infectious” onset following the example set by Drs. Lipkin, Peterson and other clinicians in the XMRV study 5 years ago. Enrollment of controls has begun, and disease subjects will be enrolled early in 2017. Dr. Peterson and Simmaron are proud to have played a role in the strategic foundation of this unprecedented study.

    CDC Multisite Clinical Assessment of ME/CFS: Simmaron is preparing for Year 5 work on this 7-site collaboration. cdc-logoThe CDC study is the largest study of ME/CFS, collecting data and samples from more than 800 patients and controls selected and diagnosed by top clinical experts in the country. The first manuscript from the study is currently under review for publication.

    Data Analysis of Immune Measures During Treatment: Simmaron is collaborating with CDC to analyze patient data from treatments at Sierra Internal Medicine.

    SimmaronResearch

    26. März 2017 
    Grosser Durchbruch bei Chronique Fatigue Syndrome - Biomarker gefunden?
    (English)

    The media reports have been sizzling! Griffith University, the home of the NCNED group in Australia that produced the study, called it “groundbreaking”. IFL Science lead off with a piece called “People With Chronic Fatigue Have A Defective Channel In Immune System Cells” which stated, “The finding confirms earlier research that CFS is a biological condition, not a psychological one, and opens lines of inquiry for potential treatment options.”

    Even a government official got involved telling the Tech Times
    “This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known – that it is a ‘real’ illness – not a psychological issue,” Leeanne Enoch, the Science Minister of Queensland.

    HealthRising