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Belgisk helsejournalist skriver om sine reaksjoner på psykososiale forklaringsmodellen for ME

Hentet fra Support doctors treating CFSs Facebookside:

«Written by : Marc Van Impe – belgian journalist

No imaginary illness

Image of CFS is disastrous for patients

“Over the past fifteen years quite a few misunderstandings deliberately have been spread around te world», writes MARC VAN IMPE. He both explains and suggests why this has happened.

Few diseases create as much controversy as CFS. Care providers, legislators and journalists tend to react irritated when this disease is discussed. Lack of knowledge and a deliberately created false image are the cause.

According to Professor Daniel Blockmans, the two doctors who offer their CFS patients a biomedical approach are ‘quacks’. The scientific world agrees that CFS is a psychosomatic disease, according to the Louvain professor.

However, there is scientific literature to contradict this view at every moment.

Prof. Roald Omdal from Norwegian Stavanger University Hospital, publishes this month inReumathology the latest findings on the biological mechanism of chronic fatigue. He employs a clear distinction between depression and chronic fatigue. CFS is different, Omdal writes, because this is a chronic inflammatory disease. The thesis that CFS is a psychosomatic disorder is radically denied by Omdal.

In last weeks edition of The New Scientist Prof. Thomas Borody of the University of New South Wales, links CFS to a chronic disruption of the intestinal flora, a leaky gut and a chronic inflammation in the brains.

In June last year virologist Johan Weyenbergh of Leuven Rega Institute describes in AIDS that the newly discovered XMRV virus may be the key to develop a treatment for CFS. This summer an international symposium will be organized on this subject.

On January 8, 2008 the Israel Medical Association Journal publishes an article written by professors from the Universities of Padua and Tel Aviv, which reveals the pathogenesis of CFS. Disruption of specific cell receptors are involved. They describe treatment by gammaglobulines.

In 2007 Jonathan Kerr described seven systematic genetic abnormalities in CFS patients in the Journal of Clinical Pathology.

So CFS should be an imaginary disease?

635.000 euro

Two doctors, Francis Coucke an internist,  and Anne Marie Uyttersprot,  a neuropsychiatrist who offer their CFS patients a biomedical treatment are severely punished for this. First they were threatened. Subsequently, on the initiative of health insurer CM a complaint was lodged against the two doctors by the Association of Physicians of Antwerp and Flemish Brabant. This complaint is rejected twice. Then the Intermutualistic Committee submits a complaint with the Administrative Court Department of Medical Evaluation and Control. The two doctors are being accused for prescribing gammaglobulines and parenteral nutrition for no reason. In first instance, the two doctors are sentenced to a huge fine of 635,000 euros. This is followed by a new complaint to the Assocation of East Flanders, who suspenses doctor Coucke for two years.

Over the past fifteen years quite a few misunderstandings have been spread around te World deliberately. The source of all these misunderstandings can be accurately located: it is the school of psychiatrist Simon Wessely, of King’s College in London. This man is not only a psychiatrists but also advisor to the world’s largest insurance holding company, editor of the magazine for Evidence Based Medicine, and the English edition of the ICD 10. Wessely decided on its own,  to change the classification of CFS from a neuro-immunological disease into a psychiatric disorder. On February 11 2004, the British Minister for Health admitted that deception. On several occasions the WHO had pointed out this anomaly and a had required a correction. As the author of this scientific fraud that doctor Simon Wessely was designated. His «impressive research» and his impressive CV appeared to be «built on sand». The British Government responded by makung the CFS records of the NIH inaccessible for the next 70 years. A most peculiar measure.

Finally, on June 9, 2005 the European Commission declared that concerning CFS priority should be given to research into the indicators of this neurodegeneration, neuro-development and non-psychiatric brain disease.

Yet, in its latest statistics RIZIV classified CFS still among mental disorders.

This attitude of the government inflicts patients heavily:

–      private insurers are happy to hide behind the psychological label to avoid having to pay benefits

–      hospitals lock CFS patients in the psychiatric department or reject them all together

–      and controling doctors of RIZIV expel CFS patients arguing they imagine their disability

–      doctors of health insurance companies threaten CFS patients with suspension if they seek advices of the suspended physicians.

–      and charlatans who abuse the despair of the patients can still go undisturbed

–      in our country, everyone who dares to think ‘out of the box’ is first threatend, then punished severely and finally ridiculized.

Cynical

The patients organisations ask for the immediate stop of this malpractice .

The results of the CFS centers led by professor van Houdenhove and professor Blockmans, where only psychotherapy and physiotherapy were given, were unsuccessful. Two official reports have confirmed this. Moreover, many other diseases are missed and remain untreated.

On several occasions patients and the  two accused doctors have asked the RIZIV, i.e. the nationale Health service,  for a discussion. Proposals were made for real research projects. The only answer they got was that patiënts who do not agree always are free to seek justice at the Labour Court. This is utmost cynical if one realizes the financial and lamentable physical condition most CFS patients are finding themselves over time.

Yet on the table of the Director-General of RIZIV is a draft Royal decree that literally states that CFS is maintained by negative cognitions, such as “excessive attention to pain stimuli”, «fear of exercise” and consequently, deconditioning. In this draft biomedical diagnosis and treatment are banned ‘by decree’ by RIZIV.

We do not understand this. Unless it’s all about money. Treatment by a psychologist doesn’t cause any costs for the health insurance fund, because these costs are not repaid. Could that be the reason?»

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5 responses to “Belgisk helsejournalist skriver om sine reaksjoner på psykososiale forklaringsmodellen for ME

  1. Norefall 12.02.11, kl. 11:25

    Bra at noen våkner 🙂 Hadde nok vært mange flere, men det er mye å sette seg inn i.. En lang historie og mange gale hypoteser og mennesker. Få gidder å sette seg inn i noe så komplisert.

    Håper ting kan bli enklere, og at vi kan finne biomarkører. Da deles diagnosen opp, og vi kan starte en «ny historie», med bare en gruppe syke mennesker med samme sykdom ❤

    Bra med slike artikkler 🙂

    • Rutt 12.02.11, kl. 12:19

      Spesielt bra at det kom en slik artikkel i Belgia nå etter all den negative oppmerksomheten. Det er dessverre ikke mange journalister som er så interessert i dette at de er villige til å grave ned i materien, men den som en dag virkelig gjør det vil få en stoooor sak! Det er litt for lettvint å gå for tabloidoverskriftene.

      Når diagnosen blir delt opp etter biomarkører/ikke biomarkører vil det bli en mye enklere situasjon for alle, både pasienter og leger. Kanskje ikke helsemyndigheter og forsikringsselskaper da…

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  3. mhj 12.02.11, kl. 15:32

    hmmm…. jeg trur jeg har blitt blind og kanskje døv også men… kan ikke finne hvor dette står i forskningsrapporten fra Stavanger:

    sitat:
    «Prof. Roald Omdal from Norwegian Stavanger University Hospital, publishes this month inReumathology the latest findings on the biological mechanism of chronic fatigue. He employs a clear distinction between depression and chronic fatigue. CFS is different, Omdal writes, because this is a chronic inflammatory disease. The thesis that CFS is a psychosomatic disorder is radically denied by Omdal.»

    Om jeg ser Stavanger-publikasjonen i sin helhet… vel for det første er denne heller ikke basert på egne forskningsstudier, men en samling av andres forskning. det er en sammstilling hvor en ser på utmattelse i en samling tilstander/sykdommer, hvor en skiller mellom ikke.inflammatoriske kontra inflammatoriske tilstander. de er riktignok enige med seg aselv at depressjon nødvendigvis ikke er hovedårsak til utmattelse, men at det er underforliggende årsaker, som må ettergåes nøyere.

    Likevel ungår de å benytte seg av Ordet ME/CFS og bruker konsekvent ordet CFS. det er liten tvil om at det er ME/CFS som er omtalt i denne publikasjonen.

    Når en ser på referansene som er brukt, vel da er det Fakuda mfl fra 1994, mye wessly og en annen dude…. som i sin forfatteruttalelse fra 2006 sier intet mindre:

    sitat:
    We strongly disagree with Neil Abbot and Vance Spence’s one-sided biomedical point of view. Counting words on biomedical aspects is of no use, since biomedical and psychosocial issues are highly integrated in the reviewed studies. There is overwhelming evidence that a biopsychosocial approach has been more fruitful for patients than a biomedical approach, in chronic fatigue syndrome as well as other chronic diseases. It is true that the outcome of our study was less successful than in other randomised trials, but we showed that inexperienced therapists could be trained to effectively treat patients with chronic fatigue syndrome. In a recent, as yet unpublished, study we found that not only fatigue but also pain reduced significantly after CBT for chronic fatigue syndrome, although no specific intervention was directed at the symptom of pain.
    CBT can still be improved. Knowledge of the mechanisms of improvement in chronic fatigue syndrome will surely contribute to a better outcome. For that reason we are currently doing a study of the process of change during CBT.
    link: http://www.lancet.com/journals/lancet/article/PIIS0140-6736(06)68689-3/fulltext

    CFS blir i denne Stavanger-publikasjonen definert som ikke-inflamatorisk. I tabell 2 står det dette:

    Condition Non-inflammatory
     CFS

    Diagnosis of fatigue: Unexplained fatigue >6 months duration, combined with four or more associated symptoms
    Percentage with fatigue (approx.):
    100

    Confounding factors: Depression, pain, sleep disturbance

    Possible biological explanation:Persistent infection, increased oxidative stress, immune system dysfunction, genetic polymorphism, HPA axis dysfunction, psychological

    Treatment recommendations for fatigue:
    Cognitive behavioural therapy, graded exercise therapy
    ————————————————
    Mulig jeg er pirkete eller kanskje ikke??? Vi har litt for mye forskningslitteratur og ikke minst egne testresultater som viser at dette er en inflammatorisk tilstand. Vi har endret cytokin-profiler, vi har C4 data som indikerer set samme, vi har co-infeksjoner og andre dysfunksjoner. Og med hensyn til VEGF så tenderer vi heller mot for lave verdier… osv osv…….

    Jeg beklager…. det ser ut til at Stavanger har mistet noe på veien…. om de har lite kunnskap om ME/CFS så får de heller utelate å prøve å si noe som helst………. og definitivt ikke bruke samme definisjon på CFS men da utelate å bruke ME feks. og dertil gjøre et utvalg av referanser slik at de kan se på det de er ute etter næmlig utmattelse i tilstand ikke-inflammasjon vs inflammasjon….

    Det mest ironiske i denne publikasjonen er at sykdomsmekanismene er mye av de samme eller har likheter, vel bortsett fra mekanismer som styrer mot Th1 (autoimmunitet) og Th2 (mange innen CFS). Vel mange som har havnet i sekkediagnosen vil etter endt utredning havne i enten eller ende… heterogen gruppe……..

    Nu har ikke jeg lyst å sitte her å forsvare ME/CFS begrepet, mest fordi jeg trur at det vil dukke opp andre diagnoser på oss som endelig har fått adekvat utredning på den måten vi kjenner fra LHK eller KDM….

    …men at det er jakt på markører/indikatorer, både for tilstand og for behandling er det…. og disse ja vil bli viktige…. for hvor en havner og hvordan en responerer på behandlingen….

    😉 har ikke lest korrektur nei….

    😉 en fin-fin helg til blogg-eier og dere andre…….. stoor klæm

    😉 sånn – nu har æ blåst litt ut…. da ble det ettermiddagshvile …..

    • Rutt 12.02.11, kl. 20:43

      Veldig interessante betaktninger mhj!! Takk for at du «rydder opp» i all denne informasjonen, vanskelig å henge med i alle svingene her. Vanskelig å helt få grepet om dette studiet fra Stavanger syntes jeg.. Må sette meg ordentlig ned med det, men det blir ikke i dag… 😉

      Stor klem til deg også! 🙂

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