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Psychologists, wake up! CFS is possibly an infectious disease.

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Nov 3, 2010.

  1. Jemal

    Jemal Senior Member

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    GGZ is the largest branche organisation for mental healthcare in the Netherlands. It is getting a lot of funds from the government and can be considered a semi-governmental institution. It publishes a monthly magazine called Psy. The november issue of Psy features an article about XMRV. The title is: "Psychologists wake up!". The article states that ME/CFS is possibly an infectious disease caused by XMRV. One of the first sentences is: "Psychologists treating ME/CFS with cognitive therapy need to prepare for a new reality." The article mentions some players in the ME/CFS field, like Jos van der Meer (pro CT) and Kenny de Meirleir (pro XMRV).

    The article mentions a study done in 2003 in the Netherlands which found out that ME/CFS patients are seeing psychologists more often than an internist. The article concludes that this seems to be an untenable situation. The concluding sentence is brilliant: "Someone who is infected with a retrovirus has good reasons to say goodbye to the psychologist".

    The article can be found online at:
    http://www.psy.nl/fileadmin/files/psyarchief/Files_2010/Opinie_Psychologen_wakker_worden.pdf
    (entirely in Dutch though).

    I am very happy that the word is now slowly spreading in the Netherlands and even reaching psychologists. I can almost feel the walls crumbling :)
  2. Sasha

    Sasha Fine, thank you

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    That's amazing! For a psychology magazine to publish an article that would actually do it out of business. How refreshing to see someone finally acting against their own vested interests and in the interests of the patients! I wish this would happen in the UK.
  3. eric_s

    eric_s Senior Member

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    It will happen, if things continue this way, and the longer they wait, the harder it will be for them.
    We've been telling them, haven't we?
  4. Wonko

    Wonko Senior Member

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    good567890
  5. Francelle

    Francelle Senior Member

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    Sounds excellent. Expressed with such confidence of change afoot.

    Any chance of a full translation to English as my Dutch is definitely not good!!
  6. Sean

    Sean Senior Member

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    The tide is starting to turn.

    And an English translation would be very much appreciated.
  7. free at last

    free at last Senior Member

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    All we need now is the BWG And sing study, the lipkin study will just be iceing on the cake, but why do i feel its not going to ne that easy ????
    For ever the worryer
  8. wdb

    wdb Admin

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    Google's attempt at an English translation

    Chronic Fatigue Syndrome (CFS) is a possible infectious disease caused by a retrovirus (XMRV). Psychologists ME / CFS patients treated with cognitive behavioral therapy should prepare for a new reality.
    Psychologists: Wake up!

    Until a few years back there were only two families of retroviruses known to infect human beings. The most famous is that of the HIV virus that cause AIDS. The 'xenotroop murine leukemia virus-related' - the so-called XMRV - was joined there in 2006. A year ago, this virus was first found in patients with CFS. This syndrome is associated with a variety of symptoms ranging from chronic fatigue to post-exertional malaise, pain, neurological symptoms and sleep disturbances. Since the discovery of the retrovirus in patients circles there is great excitement in the scientific community. Dutch psychologists seem to be hot or cold of the events. On October 30 In the Netherlands, the first conference held on XMRV, but psychologists mostly conspicuous by their absence, given the number of registrations. Yet it is against the background of recent developments still remarkable that in ME / CFS treatment of first choice is cognitive behavioral therapy, coupled with the gradual building activities (graded exercise therapy 'or get).

    These two therapies are mainly in Britain, Belgium and the Netherlands offer primary treatment for CFS. In these countries, the 'psychological school' for many years the upper hand and a medical treatment for doctors who are regularly targeted by disciplinary boards. Also for political reasons, the psychologists hitherto been the wind. It is advantageous against sick people say they have to behave differently than their medical treatment and to provide benefits. Increasingly under attack in our country in the nineties the basis for this psychotherapeutic approach. The cart was pulled by the UMC St. Radboud Nijmegen, internist with Jos van der Meer as initiator. The core of cognitive behavioral therapy teach people to think differently, which makes them behave differently. People with CFS should maintain their complaints by the thought that their health problems worsen when they are active. Cognitive behavioral therapy would be with ME / CFS therefore not only be aimed at changing a mindset as negative, but must be combined with the gradually increasing activities on a tight schedule (get). This 'combination therapy' in the past decade increasingly come under attack lie. Earliest medical psychologist Ellen Goudsmit already in 2001 in the journal Health News (now gezondNU) why in Nijmegen CFS research participants were screened exclusively on fatigue, while additional complaints were excluded. Were the participants are "average patients? "How many people have declined by the therapy?" Was another question raised Goudsmit. For critics, the impression that the Nijmegen researchers especially people with chronic fatigue in their behavioral studies have included, rather than just people with chronic fatigue syndrome. The positive results were however 'out event "as they were applicable to the syndrome. While people who are not chronically tired the additional complaints which specifically typical of ME / CFS. As post-exertional malaise, pain, neurological symptoms and sleep disturbances. However, this led to research that CBT to get the national standard was in ME / CFS. And worse: the "success" was simultaneously used for ME / CVSpatinten to exclude such a Waouitkering ("you do not have to be sick, you can restore cognitive behavioral therapy). Also, provisions as a wheelchair or stairlift denied because granting strength in the "undue illness behavior. In 2008 it was already out a survey by Nivel that many CFS patients find that they are done by backward CBT and / or nominated last year warned the Belgian neuropsychiatrist Michael Maes for the risks of these therapies. He said it was potentially harmful to many CFS patients because their condition can be aggravated by physical activity. Maes shall rely on its findings from its own practice and literature review. In May this year had been a British remarks echo, after the largest study ever among CFS patients did. Of 906 British ME / CFS patients 'graded exercise therapy' had undergone a 57 percent reported to have become worse. Cognitive behavioral therapy showed more than half have no effect. Both CBT and to get the usual number of patients who reported a strong benefit to have had around three percent.

    Michael Maes is one of the few doctors in the low lands that finger on the sore spot dare to impose. And that's not so strange. Doctors no longer includes engrossed in ME / CVSpatinten. This follows logically from the claimed success of CBT / GET: who sustains illness behavior by bad thoughts, which should change her mind and has no business being a doctor. The result is that the average (family) doctor has a huge knowledge gap. Doctors who do go into the minefield, as Maes and Kenny De Meirleir of the Vrije Universiteit Brussel, are opposed by the medical establishment and risking disciplinary cases. Yet more anti-virals, De Meirleir today a much sought after speaker. For the simple reason that he is a CFS expert with knowledge of the retrovirus XMRV. The disease is now possible to combat including antivirals. Psychologists should, according to De Meirleir prepare for major changes. TNO study in 2003 indicated that ME / CVSpatinten often see a psychologist or an internist. This seems intolerable situation. The future will show which part of the Dutch CFS patients XMRV ultimately prove to be positive. Who is infected with a retrovirus, has good reasons for the psychologist to say goodbye.

    Toine de Graaf, journalist and speaker at the Congress on Nutrition & Psyche 30 October in Utrecht
  9. Jemal

    Jemal Senior Member

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    If I can find the energy I will post a translation when I get home tonight.

    The article doesn't really give any new information, but it does slap cognitive therapy around :D
    It's an opinion piece by the way, but it has been published in their magazine, so that's nice.
  10. Wonko

    Wonko Senior Member

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    thank you for the attempt wdb but is it just me or is googles dutch to english translation producing giiberish today?

    some interesting snippets tho
  11. Jemal

    Jemal Senior Member

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    So if I understand Google Translate correctly, Jos of of More is the initiator of fearless pesticides made possible by disease. And you say this is gibberish? ;)

    Jos of of More is the literal translation of Jos van der Meer... too funny.
  12. Sasha

    Sasha Fine, thank you

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    "Pesticides Fearless"! The "Captains Courageous" of the 21st century!
  13. wdb

    wdb Admin

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    I managed to get a slightly less gibberish translation out of Google, have updated it.
  14. Sean

    Sean Senior Member

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    Might only be an opinion piece, but it at least it is going some way to balance the opinion pieces from the CBT/GET school that flood journals like the BMJ.

    Anybody know who wrote it?
  15. FancyMyBlood

    FancyMyBlood Senior Member

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    Toine de Graaff, a journalist and speaker at that conference.

    I'm unable to translate the whole text, but if some of you have problems comprehend snippets of the gibberish paper just give me a ring and I'll explain it. :)
  16. Wonko

    Wonko Senior Member

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    thanks wdb - my brain didnt BSOD so many times on that version
  17. Jemal

    Jemal Senior Member

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    Ok, here is a rough translation of this article: http://www.psy.nl/fileadmin/files/ps...ker_worden.pdf
    There were some tough sentences to translate, so there will be some inconsistencies. I think I got the spirit of the article right.

    Psychologists wake up!

    Chronic fatigue syndrom (ME/CFS) might be an infectious disease caused by a retrovirus (XMRV). Psychologists who treat ME/CFS patients with cognitive therapy should prepare for a new reality.

    Until a few years ago only two families of retroviruses that can infect humans were known. The most well-known are hiv-viruses, which cause AIDS. Xenotropic Murine Leukemia Virus - so-called XMRV - has joined these families in 2006. The virus was found a year ago in patients with ME/CFS. This syndrome causes all kinds of symptoms, like chronic fatigue, malaise after exertion, pain, neurological complaints and sleeping disorders. Since the discovery of the retrovirus there's a lot of excitement in patients and the scientific world. Dutch psychologists don't seem to react to these events. The first XMRV congress in the Netherlands will take place on the 30th of october, but psychologists are absent.

    Yet against the background of recent developments it becomes more and more curious that the first treatment of choice with ME/CFS is cognitive therapy, in combination with graded excercise therapy (or get). These two therapies are the primary treatment option for ME/CFS, especially in the UK, Belgium and the Netherlands. In these countries the "psychological school" is the top party, while doctors who apply medical treatment are often targets of disciplinary action. Psychologists have had the wind in their sails because of political reasons also. It's more advantageous to tell sick people that they need to behave different than to treat them medically and give them social benefits.

    Increasingly under fire
    The foundation of this psychotherapeutical treatment was made in the nineties. One of the initiators was the internist Jos van der Meer of the UMC St. Radboud hospital in Nijmegen. The core of cognitive behaviour therapy is teaching people to think different and then making them behave different. People with ME/CFS are thought to maintain their symptoms because they think that being more active will make their health problems worse. Cognitive behaviour therapy in ME/CFS should therefore not only be used to change a negative thought pattern, but also be combined with graded activities on a tight schedule (get or graded excerice therapy).

    This combination of treatments has come increasingly under fire in the past decade. Medical psychologist Ellen Goudsmit asked in 2001 in the magazine GezondheidsNieuws why the participants of CFS research in Nijmegen were only screened for fatigue, while other symptoms were left out of the picture. Were participants the average patient? "How many people have deteriorated because of this therapy?" was another question Goudsmit asked.

    Critics hold the impression that the researchers from Nijmegen have only included people with chronic fatigue in their studies, instead of people with chronic fatigue syndrome. Positive research results were presented as if they applied to the syndrome. And yet people who are chronically fatigued do not have the additional symptoms that are so distinct for ME/CFS. Like malaise after extertion, pain, neurological complaints and sleeping disorders.

    And still this research resulted in cognitive behaviour therapy becoming the national standard for treating ME/CFS. Even worse: the "success" was also used to block ME/CFS patients in getting social benefits ("you don't have to be sick, you can get well with cognitive behaviour therapy"). Accomodations like a wheelchair or stair elevator were also denied, because granting these accomodations would only strengthen the patients believe in their sickness.

    A survey in 2008 by Nivel concluded that many ME/CFS patients feel that their condition worsened because of cgt and/or get. Last year Belgian neuropschygologist Michael Maes warned against the risks involved with these therapies. According to him it's potentially harmful for many ME/CFS patients, because their condition can worsen by physical activities. Maes bases this on experiences from his own practice and literature research.

    In may of this year he was echoed by the British, after the largest study ever done in ME/CFS patients. Of 906 British ME/CFS patients who underwent graded excercise therapy, 57% said their condition worsened. Cognitive behaviour therapy had no effect in more than half of these patients. Both with get and cgt about 3% of patients said to have had a lot of benefit.

    Michael Maes is one of a few doctors in the low countries (Netherlands, Belgium and Luxembourg) who dares to put their finger on the sore spot. And that isn't so strange. Doctors don't really get to know ME/CFS patients anymore. This is a logical effect of the claimed success of cognitive behaviour and graded excerice therapy: a person that remains sick because of wrong thoughts, should change those thoughts and shouldn't be visiting a doctor. As a result doctors are facing a knowledge gap. Doctors that do enter the minefield, like Maes and Kenny De Meirleir of the Vrije Universiteit Brussels (Free University Brussels), are being counteracted by the medical establishment and risk disciplinary action.

    More antivirals
    And still De Meirleir is a frequently asked speaker. Because of the simple reason he is a ME/CFS expert with a lot of knowledge of the retrovirus XMRV. The disease might be fought with antivirals. According to De Meirleir psychologists should prepare for radical changes.

    A study done by TNO in 2003 concluded that ME/CFS patients see a psychologist more often than an internist. This looks like an untenable situation. In the future we will know which part of Dutch ME/CFS patients is XMRV positive. Who is infected with a retrovirus has good reasons to say goodbye to the psychologists.

    Toine de Graaf is a journalist and speaker at the Voeding & Psyche congress on 30 october in Utrecht.
  18. alice1

    alice1 Senior Member

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    For a Phy Journal to publish an opinion piece is fantastic!
    Thankyou for the translation Jemal.
  19. Sasha

    Sasha Fine, thank you

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    Yes, thanks, Jemal, that must have taken you a lot of work.

    Wow, she's really telling it like it is, for example: "It's more advantageous to tell sick people that they need to behave different than to treat them medically and give them social benefits." It would be just amazing if we could have a piece like this published in a journal in the UK. I'm very pleased for people in the Netherlands!
  20. Wonko

    Wonko Senior Member

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    many thanks - only needed 2 breaks to read that and followed it - the first attempt had it convinced a reality dysfunction was occuring lol - or that the dutch were accepting random computer generated gibberish as articles

    so thanks - it makes sense now

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