CVS/ME: wetenschappelijk onderzoek

Het protocol voor de behandeling aderverkalking (atherosclerose) is op basis van wetenschappelijke publicaties ontwikkeld. Hierbij is gebruik gemaakt van de National Library of Medicine. Daar waar mogelijk werden studies die opgezet zijn volgens het "placebo controlled cross-over" principe gebruikt. Andere vormen die vaak werden gebruik zijn reviews en epidemiologisch onderzoek. Publicaties uit bladen als The Lancet, American Journal of Cardiology, The New England Journal of Medicine etc. hadden de voorkeur.

Alle artikelen en behandelingsprotocollen zijn volgens het zelfzorg principe geschreven. Bij zelfzorg is niet de arts of specialist maar de patiënt verantwoordelijk voor het correct uitvoeren van de behandeling. Toch adviseer ik patiënten om bij gezondheidsklachten eerst een arts te raadplegen. Een juiste diagnose is ook bij een zelfzorgtraject van onschatbare waarde. Als u reeds onder behandeling bent van een arts overleg dan met uw arts voordat u voedingssupplementen gaat gebruiken.

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Wetenschappelijk onderzoek

  1. Friedberg et al., 2000F. Friedberg, L. Dechene, M.J.I. McKenzie and R. Fontanetta , Symptoms patterns in long-duration chronic fatigue syndrome. J. Psychosom. Res. 38 (2000), pp. 383-392.
  2. Fukuda et al., 1994K. Fukuda, S.E. Straus, I. Hickie, M.C. Sharpe, J.G. Dobbins and A. Komaroff , The chronic fatigue syndrome: A comprehensive approach to its definition and study. Ann. Intern. Med. 121 (1994), pp. 953-959.
  3. Hadzi-Pavlovic et al., 2000D. Hadzi-Pavlovic, I.B. Hickie, A.J. Wilson, T.A. Davenport, A.R. Lloyd and D. Wakefield , Screening for prolonged fatigue syndromes: Validation of the SOFA scale. Soc. Psychiatry Psychiatric Epidemiol. 35 10 (2000), pp. 471-479.
  4. Hartz et al., 1998A.J. Hartz, E.M. Kuhn, P.H. Levine and R. London , Characteristics of fatigued persons associated with features of chronic fatigue syndrome. J. Chronic Fatigue Syndrome 4 3 (1998), pp. 71-97.
  5. Holmes, 1991G.P. Holmes , Defining chronic fatigue syndrome. Rev. Infect. Dis. 13 (1991), pp. S53-55.
    Vereniging ME/CVS Huis
    reactie op artikel
    Lia Metz (bestuurslid), Landweg 23, 3833 VA Leusden, ME-Helpdesk 033 - 494710, mail-me-cvs-huis@hetnet.nl
    Volgens mij zien sommige artsen ME als een soort van "vangnetregeling". Als patiënten moe en ziek zijn en er niets te vinden is krijgen ze de diagnose ME. Bovendien denk ik dat het zo is dat een psychiater ME zal diagnosticeren als "psychisch" en een maagdarmspecialist denkt dat hij te maken heeft met een IBS patiënt. Iedere arts kijkt gewoon niet verder dan zijn eigen specialisme en mist daarom het grote geheel. Het zou me niets verbazen als in de toekomst blijkt dat ME meerdere subgroepen bevat met patiënten die allemaal verschillend behandeld moeten worden. Ik vind het goed dat je in je artikel "differentiaal diagnostiek" toepast om uit te sluiten dat er misschien sprake is van een andere ziekte. Van de week meldde zich een moeder bij onze patiëntenvereniging. Haar dochter was al 14 jaar ziek en onlangs als ME patiënte gediagnosticeerd. Ze vroeg me wat ze nu moest doen. Gisteren belt ze me op en verteld me dat haar dochter kanker heeft, niet operabel - terminaal.
  6. Holmes et al., 1988G.P. Holmes, J.E. Kaplan, N.M. Gantz, A.L. Komaroff, L.B. Schonberger, S.S. Strauss et al., Chronic fatigue syndrome: A working case definition. Ann. Intern. Med. 108 (1988), pp. 387-389.
  7. Jason et al., 2000L.A. Jason, C.P. King, R.R. Taylor and C. Kennedy , Defining chronic fatigue syndrome: Methodological challenges. J. Chronic Fatigue Syndrome 7 3 (2000), pp. 17-32.
  8. Jason et al., 1997L.A. Jason, J.A. Richman, F. Friedberg, L. Wagner, R. Taylor and K.M. Jordan , Politics, science, and the emergence of a new disease: The case of chronic fatigue syndrome. Am. Psychol. 52 (1997), pp. S60-S67. Jason et al., 1999L.A. Jason, J.A. Richman, A.W. Rademaker, K.M. Jordan, A.V.
  9. Plioplys, R.R. Taylor et al.Arch. Intern. Med. 159 18 (1999), pp. 2129-2137.
  10. Jason and Taylor, 2002Jason, L.A., Taylor, R.R., 2002. Applying cluster analysis to define a typology of chronic fatigue syndrome in a medically-evaluated random community sample. Psychol and Health (in press).
  11. Jason et al., 1995L.A. Jason, L. Wagner, R. Taylor, M.T. Ropacki, J. Shlaes, J.R. Ferrari et al., Chronic fatigue syndrome:
  12. A new challenge for health care professionals. J. Commun. Psychol. 23 (1995), pp. 143-164.
  13. Kish, 1965L. Kish Survey Sampling, Wiley, NY (1965).
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  15. Nisenbaum et al., 1998R. Nisenbaum, M. Reyes, A.C. Mawle and W.C. Reeves , Factor analysis of unexplained severe fatigue and interrelated symptoms: Overlap with the criteria for chronic fatigue syndrome. Am. J. Epidemiol. 148 1 (1998), pp. 72-77.
    Help ME Circle 27 September 2002
    In the Netherlands the government has subsidized the "CFS" research group of the university Nijmegen for more then twelve years. Probably there was no single checking on this money, because, in contrast with the international agreement, this study group has predominantly used the psychiatric Oxford criteria. This is the cause of a serious lack of knowledge about this illness in this country; the majority of the physicians (GP's and specialists) don't know anything about this neurological disorder.
  16. Poole et al., 2000J. Poole, R. Herrell, S. Ashton, J. Goldberg and D. Buchwald, Results of isoproterenol tilt table testing in monozygotic twins discordant for chronic fatigue syndrome. Arch. Intern. Med. 160 (2000), pp. 3461-3468.
  17. Rowe and Calkins, 1998P.C. Rowe and H. Calkins , Neurally mediated hypotension and chronic fatigue syndrome. Am. J. Med. 105 3A (1998), pp. 15S-21.
  18. Scott and Dinan, 1999L.V. Scott and T.G. Dinan , The neuroendocrinology of chronic fatigue syndrome: Focus on the hypothalamic-pituitary-adrenal axis. Funct. Neurol. 14 1 (1999), pp. 3-11.
  19. Spitzer et al., 1995R.L. Spitzer, J.B.W. Williams, M. Gibbon and M.B. First Structured Clinical Interview for DSM-IV. SCID-NP, Version 2.0 (Non-Patient edition ed.),, American Psychiatric Press, Washington DC (1995).
  20. Stewart et al., 1999J.M. Stewart, M.H. Gewitz, A Weldon and J. Munoz , Patterns of orthostatic intolerance: The orthostatic tachycardia syndrome and adolescent chronic fatigue. J. Pediatr. 135 2 (1999), pp. 218-225.
  21. Stewart and Weldon, 2000J.M. Stewart and A. Weldon , Vascular perturbations in the chronic orthostatic intolerance of the postural orthostatic tachycardia syndrome. J. Appl. Physiol. 89 4 (2000), pp. 1502-1505.
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    Lenoetza (ME patiënt), reactie op dit artikel
    Ik ben het een beetje beu dat men overal steeds over “vermoeidheid” spreekt en vooral over “lichamelijke” vermoeidheid. Als CVS patiënt ervaar ik deze ziekte veel meer als een complete “uitputting”, zowel lichamelijk als mentaal. Het woord “vermoeidheid” is zo misleidend,

    Chronisch Uitputting Syndroom

    zou een betere omschrijving zijn, maar ik begrijp dat er niet veel andere woorden te vinden zijn die CVS kort kunnen omschrijven Je spreekt uitvoerig over de aandoeningen die de diagnose “CVS” uitsluiten, maar je zegt (naar mijn mening) iets té weinig over de symptomen / kenmerken die wél wijzen op CVS. Als één van je doelstellingen van je artikel is : mensen helpen om “zelf” te ontdekken of ze al dan niet CVS hebben, lijkt het toch nodig een uitgebreider klachtenpatroon te beschrijven.
    Lees hele de reactie van Lenoetza en de reacties van anderen op het chronisch vermoeidheidsyndroom Forum.
  23. Streeten et al., 2000D.H.P. Streeten, D. Thomas and D.S. Bell , The roles of orthostatic intolerance, orthostatic tachycardia, and subnormal erythrocyte volume in the pathogenesis of chronic fatigue syndrome. Am. J. Med. Sci. 320 1 (2000), pp. 1-8.
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    Jane ME patiënt, reactie op dit artikel
    M.i. is ME het eindstadium van elke ernstige ziekte of ontregeling. Het betekent dat je de bodem van je lichamelijke en/of geestelijke mogelijkheden hebt bereikt, ONGEACHT DE OORZAAK (die kan dus ook aids of kanker zijn). De dominotheorie is m.i. juist: Onder bepaalde (ongunstige) omstandigheden sleept het ene defect het andere mee en als je jezelf niet kunt of wilt ontzien of als de belager te sterk is, dan raak je tenslotte in de spiraal naar beneden tot het punt waarop je lichaam het opgeeft. Je hebt ook het gevoel dat je zo goed als dood bent, want je bent tot niets meer in staat.
    Als je ME ziet als een eindstadium van ELKE ziekte, dan wordt het verklaarbaar waarom er verschillende subgroepen zijn. Het is dan ook begrijpelijk dat mensen met ME ook FM kunnen hebben en een candida infectie en een schildklieraandoening. Juist door de cummulatie van aandoening ontstaat de fase waarin de vermoeidheid allesoverheersend wordt.
    Lees hele de reactie van Jane en de reacties van anderen op het chronisch vermoeidheidsyndroom Forum.
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