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    Suche auf cfs-aktuell:

     

    Eine weitere Suchmöglichkeit besteht darin, z.B. bei www.google.de das Suchwort einzugeben und dann nach einem Leerzeichen den Zusatz site:www.cfs-aktuell.de

    Sie erhalten dann alle Seiten auf cfs-aktuell.de, auf denen der gesuchte Begriff vorkommt.

    Artikel des Monats April 2013 Teil 3

     

    Forschungsveröffentlichungen:

    • Valganciclovir-Studie:

    Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers. Watt T, Oberfoell S, Balise R, Lunn MR, Kar AK, Merrihew L, Bhangoo MS, Montoya JG. http://1.usa.gov/RKbtO6


    Abstract

    Valganciclovir has been reported to improve physical and cognitive symptoms in patients with chronic fatigue syndrome (CFS) with elevated human herpesvirus 6 (HHV-6) and Epstein-Barr virus (EBV)
    IgG antibody titers. This study investigated whether antibody titers against HHV-6 and EBV were associated with clinical response to valganciclovir in a subset of CFS patients

    An uncontrolled, unblinded retrospective chart review was performed on 61 CFS patients treated with 900mg valganciclovir daily (55 of whom took an induction dose of 1,800mg daily for the first 3 weeks).

    Antibody titers were considered high if HHV-6 IgG
    $1:320, EBV viral capsid antigen (VCA) IgG $1:640, and EBV early antigen (EA) IgG $1:160.

    Patients self-rated physical and cognitive functioning as a percentage of their functioning prior to illness.

    Patients were categorized as responders if they experienced at least 30% improvement in physical and/or cognitive functioning.

    Thirty-two patients (52%) were categorized as responders. Among these, 19 patients (59%) responded physically and 26 patients (81%) responded cognitively.

    Baseline antibody titers showed no significant association with response.

    After treatment, the average change in physical and cognitive functioning levels for all patients was +19% and +23%, respectively (P<0.0001).

    Longer treatment was associated with improved response (P=0.0002).

    No significant difference was found between responders and non-responders among other variables analyzed.

    Valganciclovir treatment, independent of the baseline antibody titers, was associated with self-rated improvement in physical and cognitive functioning for CFS patients who had positive HHV-6 and/or EBV serologies. Longer valganciclovir treatment correlated with an improved response.

    J. Med. Virol. 84:1967-1974, 2012. © 2012 Wiley
    Periodicals, Inc.

    Copyright © 2012 Wiley Periodicals, Inc.

    PMID: 23080504 [PubMed - in process]

    -

    -----------------------------------

    Eleanor Stein

    http://www.psychiatrictimes.com/print/article/10168/2123915

     

    http://www.biomedcentral.com/1741-7015/11/64/abstract

    Review

    A narrative review on the similarities and dissimilarities between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and sickness behavior

    Gerwyn Morris, George Anderson, Piotr Galecki, Michael Berk and Michael Maes

    ---------------------------------------------

     

     

    https://www.thieme-connect.de/ejournals/abstract/10.1055/s-0032-1327706

    Erschöpfungssyndrome - Eine Diskussion verschiedener Begriffe, Definitionsansätze und klassifikatorischer Konzepte

    Fatigue Syndromes - An Overview of Terminology, Definitions and Classificatory Concepts
    Johanna Dörr1, Urs Nate

    --------------------------------------------

     


     

    Was die FDA macht:

    http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm

    ----------------

    Source: Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology
    Preprint
    Date: January 16, 2013
    URL:
    http://jnnp.bmj.com/content/early/2012/01/15/jnnp-2011-300992.full

    The function of 'functional': a mixed methods investigation
    ----------------------------------------------------------
    Richard A Kanaan(1,*), David Armstrong(2), Simon C Wessely(1)
    1 King's College London, Department of Psychological Medicine,
    Institute of Psychiatry, Weston Education Centre, London, UK
    2 King's College London, Department of General Practice, London,
    UK
    * Correspondence to Dr R Kanaan, Department of Psychological
    Medicine, P062, Weston Education Centre, Institute of
    Psychiatry, London SE5 9RJ, UK;
    richard.kanaan@kcl.ac.uk

    Received 18 July 2011
    Revised 12 October 2011
    Accepted 19 October 2011
    Published Online First 16 January 2012

    Abstract

    Objective
    The term 'functional' has a distinguished history, embodying a number
    of physiological concepts, but has increasingly come to mean
    'hysterical'. The DSM-V working group proposes to use 'functional' as
    the official diagnostic term for medically unexplained neurological
    symptoms (currently known as 'conversion disorder'). This study aimed
    to explore the current neurological meanings of the term and to
    understand its resilience.

    Design
    Mixed methods were used, first interviewing the neurologists in a
    large UK region and then surveying all neurologists in the UK on their
    use of the term.

    Results
    The interviews revealed four dominant uses-'not organic', a physical
    disability, a brain disorder and a psychiatric problem-as well as
    considerable ambiguity. Although there was much dissatisfaction with
    the term, the ambiguity was also seen as useful when engaging with
    patients. The survey confirmed these findings, with a majority
    adhering to a strict interpretation of 'functional' to mean only 'not
    organic', but a minority employing it to mean different things in
    different contexts - and endorsing the view that 'functional' would
    one day be a neurological construct again.

    Conclusions
    'Functional' embodies real divisions in neurologists'
    conceptualisation of unexplained symptoms and, perhaps, between those
    of patients and neurologists: its diversity of meanings allows it to
    be a common term while meaning different things to different people,
    or at different times, and thus conceal some of the conflict in a
    particularly contentious area. This flexibility may help explain the
    term's longevity.

    --------
    (c) 2013 BMJ Publishing Group Ltd.
     

     

    http://www.ncbi.nlm.nih.gov/pubmed/23243408

    Formularbeginn

    J Clin Sleep Med. 2012 Dec 15;8(6):719-28. doi: 10.5664/jcsm.2276.

    Sleep abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: a review.

    Jackson ML, Bruck D.

    Source

    School of Social Sciences and Psychology, Victoria University, Victoria, Australia.

    Abstract

    Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a chronic, disabling illness that affects approximately 0.2% of the population. Non-restorative sleep despite sufficient or extended total sleep time is one of the major clinical diagnostic criteria; however, the underlying cause of this symptom is unknown. This review aims to provide a comprehensive overview of the literature examining sleep in CFS/ME and the issues surrounding the current research findings. Polysomnographic and other objective measures of sleep have observed few differences in sleep parameters between CFS/ME patients and healthy controls, although some discrepancies do exist. This lack of significant objective differences contrasts with the common subjective complaints of disturbed and unrefreshed sleep by CFS/ME patients. The emergence of new, more sensitive techniques that examine the microstructure of sleep are showing promise for detecting differences in sleep between patients and healthy individuals. There is preliminary evidence that alterations in sleep stage transitions and sleep instability, and other physiological mechanisms, such as heart rate variability and altered cortisol profiles, may be evident.Future research investigating the etiology of non-restorative sleep in CFS/ME may also help us to undercover the causes of non-restorative sleep and fatigue in other medical conditions. CITATION: Jackson ML; Bruck D. Sleep abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: a review. J Clin Sleep Med 2012;8(6):719-728.

    PMID:

    23243408

    [PubMed - in process]

    PMCID:

    PMC3501671

    [Available on 2013/6/15]

    ---------------------------------------------

     

    http://www.nova.edu/nim/past-events.html

    http://www.sciencedaily.com/releases/2013/01/130124183448.htm#.URPMiuOhy1k.facebook

    Nancy Klimas, M.D., one of the world’s leading researchers and clinicians in chronic fatigue syndrome/myalgic encepahalomyelitis (CFS/ME), is the director the NSU Institute for Neuro Immune Medicine. "The real loser is not Ampligen, but CFS/ME patients whose daily suffering continues to be unabated," she says. "CFS/ME feels like you've been run over by a truck -- pain, inflammation, utter exhaustion and trouble concentrating." Klimas has been caring for patients with CFS/ME for 26 years now. "It's heartbreaking seeing them struggle and suffer from this serious illness that has been trivialized by science and society. One of the early controversies quickly disproven suggested that CFS/ME is a form of depression. This led to enduring public policies that allowed insurance companies to limit coverage to CFS/ME to either mental health or exercise therapy, neither get to the root cause of CFS/ME," she explains. "CFS/ME researchers, including myself, have seen major advances in our understanding of the biology of CFS/ME. It seems to resemble an illness we know how to treat like multiple sclerosis (MS), chronic viral diseases and autoimmune diseases."

     

    DSM 5 FR-Interview: http://www.fr-online.de/wissenschaft/interview-mit-psychiater-allen-frances--ist-der-geist-erst-aus-der-flasche-,1472788,22273430.html

    http://dxrevisionwatch.com/2013/02/03/icd-11-beta-draft-and-bodily-distress-disorders-per-fink-and-bodily-distress-syndrome-parts-one-and-two/

    http://1boringoldman.com/index.php/2013/03/25/a-tautology-that-serves-no-useful-purpose/ Daraus:

    One thing I learned along the way is that a diagnosis of mental disorder should never be a default diagnosis – a diagnosis made because you can’t find a physical cause for symptoms. Granted, somatic symptoms are a frequent concomitant of psychiatric disorder, but to my mind, if you can’t make a diagnosis of a specific psychiatric disorder, it’s still an open question awaiting further developments. This is one of the places where the descriptive model of psychiatric diagnosis falls in a black hole – and it’s a dangerous black hole. Sure there are people who have somatic symptoms that can’t be explained on the basis of physical illness – all kinds of people. But to call that a psychiatric disorder is playing with fire and gives the referring physician and the psychiatrist some kind of false comfort in having a pigeon hole to put the patient into. But that comfort replaces a vigilance that needs to stay in place.

    I wasn’t in love with the DSM-IV version either, but it at least stayed with symptoms "medically unexplained." The DSM-5 version is actively dangerous, implies something that we do not or cannot know, and creates a unity in a group of patients that doesn’t exist. What’s wrong with saying, "I don’t know why you have these symptoms. The medical physicians can’t find a cause and I can’t find a psychiatric explanation." To add, "therefore you have Somatic Symptom Disorder" seems a tautology that serves no useful purpose, leads to no helpful treatment, and is capable of causing great harm. This is not a diagnosis, it’s a value judgement…

     

    Noch was zu DSM-5: Permission to Repost

    The Times Mental Health

    Psychologists to fight new list of mental illnesses

    http://www.thetimes.co.uk/tto/health/mental-health/article3717853.ece
    Millions of people risk being labelled as mentally ill under new classifications that have prompted calls for a boycott by psychologists.
    Dozens of new disorders have been created in the new Diagnostic and Statistical Manual of Mental Disorders, which is due to be published in May following its first major revision since 1994.
    The new disorders include Generalised Anxiety Disorder, which includes everyday worries; Minor Neurocognitive Disorder, for normal forgetting in old age; and Behavourial Addictions, which turn much of what people enjoy doing into a mental disorder.
    Particular concern has been raised over "somatic symptom disorder", which is defined by "excessive" anxiety about long-term physical illnesses, such as cancer or heart disease.
    Many psychologists fear the changes will "medicalise" the anxiety that people routinely feel as a consequence of getting on with living their lives.
    Today a group of psychologists launch an international campaign urging clinicians to boycott the new DSM until it is subjected to independent review.
    The group, represented by mental health specialists from Britain, America, Canada, Australia and New Zealand, fear that millions of people will be diagnosed with mental illness and prescribed medication and therapy they do not need, while the underlying cause of their anxiety is not dealt with.
    The group is led by Professor Peter Kinderman, head of the Institute of Psychology, Health and Society and the University of Liverpool.
    He said: "My own favourite is 'female orgasmic disorder', which is the temerity to complain about your husband's inability to perform in bed.
    "I'm not making light of the problem, or any other problem. But the issue here might be the husband, not the wife's state of mind. A misdiagnosis can sometimes be dangerous and counter-productive."
    He added: "It is similar with ADHD. Your kid may be diagnosed simply because he is not engaging at school. You should look at the kid, but also look at the school, the classroom, the teacher. They may be other reasons."
    The campaign launch coincides with the publication of stinging criticism of the new DSM by a former chairman of the manual.
    Writing in the British Medical Journal today, Professor Allen Frances said that "fuzzy boundary between psychiatry and general medicine is about the experience a seismic shift".
    Professor Frances, who is based at Duke University, is particularly concerned about the new condition of "somatic symptom disorder". The condition is defined by "excessive" anxiety about long-term physical illnesses. Studies have shown that the DSM criteria applies to 15 per cent of patients with cancer or heart disease and 26 per cent with irritable bowel syndrome.
    "Misapplication of these catch-all criteria, especially in primary care practice, may result in inappropriate diagnoses of mental disorder and inappropriate medical decision making," Professor Frances said.
    DSM is published by the American Psychiatric Association but its language and criteria for the classification of mental disorders are used around the world, including by many practioners in the UK.
     

    -------------------------------------

    Llewellyn King Interview John Chia:

    Hier alle von Llewellyn King: http://www.youtube.com/user/MECFSAlert?feature=watch

    Episode 38: http://www.youtube.com/watch?v=NhU-G0loqtY&list=UUxrPmgVwJ7-gLqZJK_qLeFg

    Episode 39: http://www.youtube.com/watch?v=I44G-tGgLNE&list=UUxrPmgVwJ7-gLqZJK_qLeFg&index=3

    Episode 40  http://www.youtube.com/watch?v=A1h0elEhSO0&feature=player_embedded

    Episode 41 http://www.youtube.com/watch?v=QGRwyrnuDLs

    --------------------------

    Mary Schweitzer vor dem CFSAC Ausschuss: http://slightlyalive.blogspot.de/2012/06/cfsac-testimony-cdc-must-end-use-of.html

    ---------------------

    Scheibenbogenprojekt:


     

    DSM-V und ICD-11

    Suzy Chapman http://dxrevisionwatch.com

    April 22, 2013

    ‘Somatic Symptom Disorder’ in Current Biology, April 22

    http://wp.me/pKrrB-2NG

    The April 22 edition of Current Biology publishes a feature article on
    DSM-5 by science writer, Michael Gross, Ph.D.

    The article includes quotes from Suzy Chapman and Allen Frances on the
    implications for diverse patient groups for the introduction of the new
    Somatic Symptom Disorder into the next edition of the DSM, scheduled for
    release in May.

    The article also mentions the influence of Somatic Symptom Disorder on
    proposals for a new ICD category – Bodily Distress Disorder – being
    field tested for ICD-11 and ICD-11-PHC [1].

    "…Chapman and Frances are concerned that the new definition of SSD will
    also be reflected in ICD-11. ICD-11 is field testing a new category
    Bodily Distress Disorder proposed to replace six or seven existing
    ICD-10 somatoform disorders, which, according to working group reports
    on emerging proposals, mirrors the DSM-5 somatic symptom disorder
    definition, says Chapman."

    The article can be read in full at:

    Current Biology 22 April, 2013 Volume 23, Issue 8
    Copyright 2013 All rights reserved. Current Biology, Volume 23, Issue 8,
    R295-R298, 22 April 2013
    doi:10.1016/j.cub.2013.04.009

    Feature

    Has the manual gone mental?

    Michael Gross

    Full text:
    http://www.cell.com/current-biology/fulltext/S0960-9822(13)00417-X

    PDF: http://download.cell.com/current-biology/pdf/PIIS096098221300417X.pdf


    1 ICD-11 Beta drafting platform: Chapter 5: Bodily Distress Disorder:
    Mild; Moderate; Severe




    Suzy Chapman

    dxrevisionwatch@page1.myzen.co.uk
    http://dxrevisionwatch.com
    @dxrevisionwatch
     

     

    ICC und CCC -
    > Both the Canadian Consensus and International Consensus Criteria are much
    > beloved by patients. Developed from within the ME/CFS community by some of
    > our best doctors and researchers, the two definitions were supposed to
    > pave
    > a way for clean studies containing real MECFS patients.
    >
    > A recent study suggests, alarmingly, that the fix in some ways, could be
    > worse than the cure. Check out this amazing and disturbing finding in
    >
    > Are the Canadian Consensus and International Consensus Criteria Broken?
    > Studies Suggests Both May Select for More Psychiatric Patients here:
    >
    > http://www.cortjohnson.org/blog/2013/04/28/are-the-canadian-consensus-and-international-consensus-criteria-broken-study-suggests-both-may-select-for-more-psychiatric-patients/
    >
     

    Judys Rede bei der FDA - bitte Dokument anfügen Abnormalities

    Below are the two minutes of comments that I was allowed in the FDA meeting
    FDA meeting April 25, 2012..public comments Judy A Mikovits, PhD
    We do not know the cause of multiple sclerosis, parkinsons disease, Alzheimer's disease, lupus, rheumatoid arthritis, cancer or ME/CFS
    All of these serious debilitating diseases have in common abnormalities innate and adaptive immune systems and inflammation in common if not as central components.
     

    We made a handout of just some of these (I read most of the title of the handout) and have it available today
     

    The FDA has just approved Tecifidera ( dimethy fumarate) an immunomodulator and antioxidant for treatment of MS
    The Bright focus and Alzheimer's drug discovery foundations just announced a phase 1 clinical trial of bexarotene , an FDA approved cancer drug which acts on retinoid receptor like vitamin D and Thyroid receptors, known abnormalities in ME/CFS
    In Norway oncologists, Drs Fluge and Mella completed a small clinical trial of the cancer and RA approved drug Rituxan in ME with successful results in 30%
    The Logical next step is do do as was recently done in MS a gene expression profiling study to determine the difference in responders and non responders. We could do similar profiling for Ampligen responders and non responders as we just heard asked by Anita Patton
    Drugs which are FDA approved are safe in humans . Everything has risks. In serious diseases with out treatments, a classification the FDA recently gave ME CFS , the benefits far outweigh the risks.
    The FDA has demonstrated its commitment by holding this unprecedented meeting.
    For the advocacy groups here today, I encourage you to fund clinical trials as these foundations have done and studies profiling responders and non responder to treatments
    .to divide patients that exhibit different levels of disease activity, prognostication and possibly insights into Pathophysiology ( eg...immune responses, transcriptome, proteome, metabolome, microbiome, epigenome erc

    The technology and expertise exist.
    The absence of a causative agent should not leave this field floundering (any longer). It is a new era for ME/CFS treatment.
    Thank you
    Also attached the table..feel free to use this to help

     

    http://www.ncbi.nlm.nih.gov/m/pubmed/23685416/

    Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions.

    Authors

    Morris G, et al. Show all

    Journal

    Neuro Endocrinol Lett. 2013 May 22;34(3):185-199. [Epub ahead of print]

    Affiliation

    Mumbles Head, Pembrey llanelli, UK. dr.michaelmaes@hotmail.com.

    Abstract

    The symptom spectrum of Myalgic Encephalomyelitis (ME) was first detailed in 1959 and later operationalised into a diagnostic protocol (Melvin Ramsey). In 1988 the Holmes case definition coined the term chronic fatigue syndrome (CFS). Fukuda's Centers for Disease Control and Prevention criteria are very heterogeneous and comprise patients with milder symptoms than the Holmes case definition. The CDC Empirical Criteria for CFS lack sensitivity and/or specificity. Other CFS definitions, e.g. the Oxford criteria, delineate people with idiopathic fatigue. Some authors make the clinical CFS diagnosis when slightly increased self-rated fatigue scores are present. In 2011, Carruthers' International Consensus Criteria attempted to restore the focus on selecting people who suffer from ME. Cognitive bias in criteria construction, patient selection, data collection and interpretation has led to the current state of epistemological chaos with ME, CFS, CFS/ME and ME/CFS, and CF being used interchangeably. Moreover, none of the above mentioned classifications meet statistically based criteria for validation. Diagnostic criteria should be based on statistical methods rather than consensus declarations. Ongoing discussions about which case definition to employ miss the point that the criteria did not pass appropriate external validation. In 2012, Maes et al. performed pattern recognition methods and concluded that CFS patients (according to Fukuda's criteria) should be divided into those with CFS or ME, on the basis that people with ME display a worsening of their illness following increases in physical or cognitive activity. Both ME and CFS are complex disorders that share neuro-immune disturbances, which are more severe in ME than in CFS. This paper expands on that strategy and details a range of objective tests, which confirm that a person with ME or CFS has a neuro-immune disease. By means of pattern recognition methods future research should refine the Maes' case definitions for ME and CFS by including well-scaled symptoms, staging characteristics and neuro-immune biomarkers, including immune-inflammatory assays, bioenergetic markers and brain imaging.

    PMID

    23685416 [PubMed - as supplied by publisher]

     

    Contrasting Case Definitions: The ME International Consensus Criteria vs. the Fukuda et al. CFS Criteria

    by Abigail A. Brown et al.
    May 18, 2013

    Editor's Comment: The authors of this study selected a group of 114 patients who met the CDC "Fukuda" case definition and then determined how many of them met the International Consensus (ICC) criteria. The subset that met the ICC criteria were more functionally impaired, and also had higher psychiatric comorbitities.The authors concluded that "based on the present analyses, the ME-ICC criteria appear to select a more functionally impaired and symptomatic group of individuals, with regards to both mental and physical health." While the ICC group had a higher rate of psychiatric diagnoses, it should be kept in mind that any patient presenting with a wide variety of medically unexplained symptoms will automatically receive a psychiatric diagnosis of somatization disorder. Rather than call into question the validity of the ICC, this study may simply point to a fundamental flaw in the nature of psychiatric diagnoses.

    Note: The full article can be accessed from the abstract.

    By Abigail A Brown et al.

    This article contrasts the Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC; Carruthers et al., 2011) with the Fukuda et al. (1994) CFS criteria. Findings indicated that the ME-ICC case definition criteria identified a subset of patients with more functional impairments and physical, mental and cognitive problems than the larger group of patients meeting the Fukuda et al. (1994) criteria. The sample of patients meeting ME-ICC criteria also had significantly greater rates of psychiatric comorbidity. These findings suggest that utilizing the MEICC may identify a more homogenous group of individuals with more severe symptomatology and functional impairment. Implications of the high rates of psychiatric comorbidity found in the ME-ICC sample are discussed.

    Source: North American Journal of Psychology;2013, Vol. 15 Issue 1, p103. March 2013. Brown, Abigail A.; Jason, Leonard A.; Evans, Meredyth A.; Flores, Samantha

    <http://www.prohealth.com/library/print.cfm?libid=18070>
     

     

    http://www.prohealth.com/library/showarticle.cfm?libid=18077 FDA Workshop

     

    Viren und neurodegenerative Erkrankungen: http://www.virologyj.com/content/pdf/1743-422X-10-172.pdf

     

     

     

     

    Mehr Lebensqualität dank Guaifenesin-Therapie!

    Ein Erfahrungsbericht nach einem halben Jahr.

    Von Friederike Cellarius

    Nach einer EBV-Infektion im Jahr 2000 bin ich kontinuierlich erkrankt mit zunehmender Verschlechterung. Nach der üblichen Ärzteodyssee erhielt ich im Jahr 2008 in der Charité endlich die Diagnose ME/CFS. 2009 wurde Fibromyalgie (FMS - Fibromyalgiesyndrom) diagnostiziert, wobei mir damals noch nicht klar war, dass dies nicht nur die Schmerzen meinte, sondern die Erschöpfungssymptomatik und vieles mehr ebenso dazu gehört.

    Um meine Mobilität zu erhalten, hatte ich mir ein E-Bike zugelegt. So schaffte ich auch zuletzt den 1 km ins Büro. Dank verständnisvoller Personalpolitik in der Behörde, mit reduzierter Stundenzahl und einer Liege im Büro war es mir möglich, weiter zu arbeiten. 2012 verschlechterte sich mein Zustand nochmals drastisch. Selbst die 40 m Flur zu meinem Vorgesetzten waren mir häufig zu weit, so kam er eben zu mir. Die Anschaffung eines Rollstuhls im letzten Sommer brachte mir wieder einen etwas größeren Radius, gleichzeitig war dies der Anstoß, nochmals intensiv zu recherchieren, diesmal auch zu Fibromyalgie.

    Und so bin ich auf die Website www.guaifenesin.de gestoßen und war nahezu elektrisiert von den positiven Berichten. Neugierig und hoffnungsfroh habe ich mir das Buch von Dr. Amand „Fibromyalgie“ besorgt und mit zunehmender Überzeugung, die Therapie zu versuchen, gelesen. Glücklicherweise habe ich mich nicht von dem eher reißerischen und wenig sachlichen Untertitel „Die revolutionäre Behandlungsmethode, durch die man vollständig von Beschwerden frei werden kann“ abhalten lassen. Mein Hausarzt, ein Umweltmediziner, der die Therapie bislang nicht kannte, unterstützte mich interessiert bei dem Versuch. Nach intensiver Vorbereitung (s.u. zu Salizylaten) habe ich mir die Tabletten besorgt und in der Nacht vom Reformationstag zu Allerheiligen mit der ersten Dosis begonnen.

    Nach drei Tagen bekam ich heftige Schmerzen. Das Zeichen, ES WIRKT. Es ist schon verrückt, sich über Schmerzen zu freuen, aber das entsprach präzise der Beschreibung in dem Buch. Danach wieder die üblichen Beschwerden. Plötzlich mal eine Stunde, wo ich dachte, irgendetwas ist anders, dann ein halber Tag ohne Schmerzen und mit Energie. Mein Schlaf verbesserte sich deutlich, es gab immer mehr Tage, an denen ich durchschlafen konnte und erholt aufwachte. Nach 8 Wochen eine erste längere Phase von 10 Tagen, an denen es mir sehr gut ging: Ich konnte längere Spaziergänge machen, Treppen steigen, Koffer tragen. Ein befreundeter Arzt in Süddeutschland, der mich zuletzt im September gesehen hatte und damals entsetzt über meinen Zustand war, konnte es kaum glauben, wie gut es mir ging. Sobald er einen FMS-Patienten hat, wird er ihm die Therapie empfehlen. Meine Osteopathin hat festgestellt, dass mein craniosakraler Rhythmus deutlich stärker geworden ist. Mein Hausarzt vermittelt inzwischen seinen FMS-Patienten den Kontakt zu mir, ebenso mein HNO und meine Frauenärztin.

    Wie es der Zufall so will, hat mein Apotheker, dessen Frau auch an FMS erkrankt ist, seine Doktorarbeit über Guaifenesin geschrieben, als schleimlösenden Wirkstoff in Hustenmitteln. Er kennt also das Mittel und konnte mich beruhigen, das Medikament sei nahezu nebenwirkungsfrei. Ich solle mir keine Gedanken machen, es lebenslang einnehmen zu müssen.

    Inzwischen habe ich an einem schönen Wintertag eine Radtour von ca. 15 km gemacht und den Motor nur bei Steigungen eingesetzt. Auch längere Spaziergänge gehören inzwischen wieder zu meinem Alltag. Im Büro nutze ich meine Liege nur in Ausnahmefällen. Wenn ich nach Hause komme, findet der Rest des Tages nicht mehr nur auf dem Sofa statt. Das leidige Anlehnen an Ampeln ist nicht mehr nötig. Die Liste ließe sich beliebig fortsetzen.

    Ich habe immer noch schlechtere Tage mit Schmerzen und weniger Energie, aber die bodenlose Erschöpfung kenne ich nicht mehr. Selbst wenn mein Befinden so bliebe, wäre es unvergleichliches Plus an Lebensqualität. Aber aller Erfahrungen nach, die ich in zwei Internetforen verfolge, wird sich mein Zustand weiter verbessern.

    Im Folgenden habe ich, zugegebenermaßen sehr verkürzt, Ausführungen zu der Therapie zusammengetragen (vertiefende Informationen auf den am Ende genannten Websites):

    Dr. Amand, Endokrinologe und selbst an FMS erkrankt, hat als junger Arzt vor mehr als 40 Jahren Gichtpatienten behandelt. Unter seinen Patienten war auch eine Gruppe mit gichtähnlichen Symptomen, aber ohne die gichttypische erhöhten Harnsäurewerte.

    Mangels Alternativen behandelte er auch diese Gruppe mit Medikamenten, die Harnsäure über die Niere ausscheiden, und auch bei diesen Patienten besserten sich die Beschwerden. Er folgerte, dass bei dieser Gruppe ein anderer Stoff – er vermutete Phosphate – ausgeschieden wurde. Deshalb suchte er nach einem nebenwirkungsärmeren Medikament als die Gichtmittel zur Phosphatausscheidung. So kam er auf das seit 300 Jahren als Schleimlöser bekannte pflanzliche Heilmittel Guaifenesin. Zuerst behandelte er sich selber, dann mehr und mehr Patienten erfolgreich.

    Im Laufe der Behandlungen hat er herausgefunden, dass Salizylate die Ausscheidung von Phosphaten behindern und somit die Wirkung von Guaifenesin blockieren. Deshalb ist es wichtig, diese zu vermeiden. Ähnliches gilt für Menschen mit Hypoglykämie (Unterzuckerung). Manche der Unterzuckerungssymptome sind denen von FMS ähnlich, so dass diese die positive Wirkung von Guaifenesin überlagern. Deshalb empfiehlt er eine kohlenhydratarme Diät, ähnlich der Logi-Diät.

    Seinen Behandlungsansatz entwickelte er empirisch weiter, lange bevor Fibromyalgie 1992 offiziell als Krankheit anerkannt wurde. Schulmediziner durch und durch betont er immer wieder, dass er seine Theorie zur Ursache von Fibromyalgie und zu seiner Therapie nur vermutet und handfeste Forschungsergebnisse fehlen. Gleichwohl kann er allerdings nach der Behandlung von mittlerweile über 10.000 Patienten eine Tatsache vehement behaupten: Guaifenesin wirkt!

     

    ME/CFS und FMS:

    Dr. Amand geht mit vielen anderen Ärzten in den USA davon aus, dass ME/CFS und FMS ein und dieselbe Erkrankung sind. Beiden gemeinsam ist die schwere Erschöpfung. Das Schmerzempfinden ist unterschiedlich (war auch bei mir quasi ausgeblendet). Die weitere Symptomliste ist im Prinzip identisch: nicht erholsamer Schlaf und Schlafstörungen, Muskelsteifigkeit, Reizdarm, sog. Fibronebel, Konzentrationsstörungen, etc., die Symptome decken sich weitgehend mit dem Kanadischen Konsensdokument. Auch macht er vergleichbare Krankheitsauslöser wie Infektionen oder Traumata für den Ausbruch der Erkrankung verantwortlich

    Bei allen Patienten, die mit ME/CFS zu ihm gekommen sind, hat er spürbare Verhärtungen und Verkrampfungen in der Muskulatur festgestellt wie auch bei FMS-Patienten. Seiner Theorie nach ist der Körper aufgrund einer geringgradigen genetischen Stoffwechselstörung nicht in der Lage, Phosphate auszuscheiden, die sich zuerst in den Knochen, dann in der Muskulatur, zuletzt in den Gelenken ablagern. Der Körper versucht sich quasi ständig dagegen zu wehren. So hat er bei Studien einen dauerhaften starken Muskeltonus festgestellt, selbst im Schlaf, bei dem normalerweise die Muskulatur entspannt ist. Kein Wunder, dass das den Körper erschöpft.

    Warum über Guaifenesin nicht weiter geforscht wird, ist schnell verständlich: Es gibt auf Guaifenesin kein Patent, die Behandlung kostet im Monat nicht einmal 5 Euro. Welches Interesse sollte die Pharmaindustrie und die „Gesundheitsindustrie“ an einem heilenden Medikament haben, wenn doch Schmerzmittel, Psychopharmaka und diverse physikalische Therapien fette Gewinne abwerfen, die durch Guaifenesin nur geschmälert werden könnten?

    Unabhängig davon, dass der genaue Wirkmechanismus von Guaifenesin nach wie vor weiter unklar ist, verbreitet sich die Behandlung über Betroffenen-Netzwerke und in Deutschland über einige wenige Ärzte. In den USA ist das Ärztenetzwerk allerdings schon beeindruckend groß. Kein Wunder, denn dort wird seit den 1970-er Jahren mit Guaifenesin behandelt.

    Ausführlich Informationen gibt es auf den drei Webseiten:
    www.guaifenesin.de. Diese Seite ist entwickelt worden von Dora Maier, die als erste die Therapie nach Deutschland gebracht, sie auf eigene Faust ausprobiert und dann aus Überzeugung das Buch von Dr. Amand übersetzt hat. Sie ist mit ihm auch im direkten Kontakt. Hier findet man Informationen zur Behandlung und kann man auch das Buch von Dr. Amand mit dem Titel „Fibromyalgie“ bestellen. Es liest sich wie ein Krimi. Dort sind neben differenzierteren Informationen auch links zu Apotheken, wo man das Mittel bestellen kann. Auf der Seite auch die Übersetzung der Ergebnisse einer Studie.

    www.fibromyalgie-guaifenesin-forum.de und www.contra-dem-schmerz.de , zwei hilfreiche Foren, in denen Betroffene über ihre Erfahrungen berichten.

    Der Einstieg in die Therapie ist etwas aufwändig und anstrengend. Man muss alle Kosmetika und Medikamente auf Salizylate untersuchen. Dafür sollte man sich Zeit nehmen. Glücklicherweise gibt es seit kurzem eine hilfreiche Suchmaschine auf den Foren. Inzwischen bin ich darin sehr sicher, habe meine Produkte gefunden und bin auch mit der Hypoglykämiediät geübt und erfahren. Diese für mich inzwischen marginalen Einschränkungen sind nichts im Vergleich zu den wunderbaren Therapieerfolgen.

    Eine gute Freundin von mir hat zwei Monate später nach mir mit der Therapie begonnen und ist auf gutem Weg. Das wünsche ich ganz vielen, die an ME/CFS und FMS leiden.