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Dutch study: Need to change illness perception and beliefs

Discussion in 'Latest ME/CFS Research' started by Camilla, Apr 5, 2012.

  1. alex3619

    alex3619 Senior Member

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    Thats a fantastic idea for the company supplying the tarps, or the people who watch over the cost of replacing roofs. Any time they can pass responsibility to a different department its not their problem, and on their books they make a saving. The total cost to the community, to society, to the person, is not their responsibility.

    Partitioned accounting in government can lead to overall severe failure or increased cost, but look good department by department. Somewhere, sometime however, the costs mount up for someone. Look at the current push by ATOS and the UK government to cut disability support. Many will become homeless. Many will commit suicide (hey, thats a saving right there, much cheaper to bury someone than keep them alive). Many will require much more expensive medical care, pushing hospital budgets to breaking. Many will wind up in court (more money) then prison (even more money). The cost of appeals is mounting, and over half win their appeals. Yet the government can say they are saving money, so its a great idea. As long as it looks like they are saving money, the real cost is irrelevant - thats irrational, but thats politics.

    In Australia we recently had a study looking at treating homeless males, it was on the news though I do not know the details. They threw money at getting these men private treatment, fixing their issues, and so on. The outcome? A saving of more than $3000 per person, with an end result of housing for most, and work for many. This despite private medical care at full cost. Its a win-win, but it was achieved by rational targeting of increased funding to solve the problem. Slashing budgets without reason can increase costs if the problem doesn't go away.

    Bye, Alex
    WillowJ, Dolphin and taniaaust1 like this.
  2. oceanblue

    oceanblue Senior Member

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    Major problems with this study

    It's hard to know where to start, really. Here's a quick summary:
    • the model they started off with (based on several previous studies) didn't hold up so they tweaked it, post-hoc, until it fitted their data
    • They didn't show that treatment > changed 'mediators' > changed outcomes ie no cause and effect
    • other models (and other unmeasured mediators) could well also fit the data

    The strength of SEM is that you can test out a theory against experimental data. They did, and their models failed the test (even though they had based their model on several previous studies). So they adjusted the model to fit the data. That's fine, but makes this an 'exploratory' study, not a 'confirmatory' study as billed and means nothing without independent replication.

    If you are going to prove anything causal you have to show a sequence eg CBT changes mediators (eg 'sense of control over symptoms') which then changes outcomes eg fatigue. They didn't do this because they only had before and after measures, with no 'during' ones. But they knew this before they started, so I'm not quite sure why they did start.

    Lastly, while SEM can prove models wrong (as they did here with their original model), it can't prove them right as they could be many different models that fit the data equally well, or better.

    In the Discussion section the authors do acknowledge the significant weaknesses of their work:
    Shame they didn't mention any of this in the abstract.
    PhoenixDown and Dolphin like this.
  3. Jarod

    Jarod Senior Member

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    Hi Alex,

    I think we are on the same page essentially. Your example of the homeless people illustrates my point quite well.

    My sarcastic statement was meant to illustrate exactly what decision any rational decision maker should make 99.9% of the time after roof hail damage.

    Shouldn't be too much to ask of a bunch of PHD's when it comes to a public health emergency? I think the high level committees inside and outside of governemnt are perfectly capable of making these world altering decisions. No doubt they have heard a million times since then they are wrong anyhow.

    There is no excuse for turning ME in to CFS back in 1988 etc.... That's like shredding the tarp and throwing the pieces in the neighbors backyard. :headache:

    They know exactly what they are doing, and never let them forget it.

    The trick is: Never admit any guilt, Lie like hell, and keep burying the truth. Bury it so deep, nobody can ever untangle the mess. Get one meaningful article? Better release 3 more bogus ones. You know the drill

    Jarod.
  4. Spring

    Spring Senior Member

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  5. Spring

    Spring Senior Member

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    Close friend of Bleijenberg and ours of course, Jos van der Meer, who also turned 65 years (april15th) seems not to be going to retire soon. (65 years is the age when you can officially retire in the Netherlands and you will recieve pension money and money from the state)
    He will start a new study on the effects on CGT. He's looking for a researcher.

    http://www.careeredu.eu/index.php?post_id=9871

    Anyone who wants to apply?
    Dolphin and taniaaust1 like this.
  6. oceanblue

    oceanblue Senior Member

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    Thanks. I've posted a translation here, but perhaps you could check/correct?
  7. Min

    Min Senior Member

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    Using CBT to change a person with a neurological illness's belief that they are ill, when they really are ill, reminds me of the ex-gay ministries who use outmoded medical theories and radical religious beliefs to justify trying to alter gay and lesbian peoples' natural sexual orientation. It has as much scientific value.
  8. Don Quichotte

    Don Quichotte Don Quichotte

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    Fatigue caused by a neurological illness is a physiological process which leads to muscles or nerves unable to function repeteatively. It can be very mild (making it hard for you to run a significant distance which you could easily before) or severe (making it hard for you to walk more than a few steps). Along the path from the brain to the final contraction of the muscle, there are numerous highly regulated steps. All can go wrong. Some have been defined and understood and others not yet.

    Fatigue has (inevitable) psycho-social implications only when it significantly interferes with ones ability of lead a normal life. If it effects a professional marathon runner even a very mild disease can have significant psycho-social consequences. obviously, helping him come to terms with the fact that he is not going to be able to run the marathon any more and helping him find what he can do will improve his quality of life and make him feel that he is functioning better, even if there is no effective treatment which could alter the physiological process.

    If we were transferred to a world where everyone could fly and pick up a bus with passengers, we would have psycho-social problems.

    Of course we could be blamed for not trying hard enough, having wrong beliefs regarding our flying abilities and other BS. Avoiding jumping from high buildings would have been considered maladptive behavior.

    Saying that there is no psycho-social response to the illness is ridiculous. Saying that the psycho-social response is the illness is even more ridiculous.

    It's almost as ridiculous as putting an ice-cube on the table, and then coming back an hour later and being unable to understand where the ice-cube has disappeared and why the table is wet.

    Finally coming to the conclusion that there is no way to know what happened to the ice-cube, but at least there is a good way to solve the problem of the table being wet, by wiping it clean.
  9. Spring

    Spring Senior Member

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  10. Snow Leopard

    Snow Leopard Senior Member

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    This is going to form a very long list...
  11. Spring

    Spring Senior Member

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    It's a good thing he's retiring. But I think he has produced more lately to enlarge his legacy.
  12. seanpaul

    seanpaul

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    Debunking Psychosomatic Research

    Hi,

    this is my first posting on this site. Im interested in doing research and writing papers that debunk research such as this CBT study. Ive taken a quick look at this and from what Ive read, the work was carried out by one of their PhD students for his thesis, and the therapists were trained by one of the lead researchers and used his approach - the amount of bias in this work makes it completely useless, however this Dutch Psycho Lobby /Research group refuse to accept a biological cause thesis.

    If anyone has any thoughts on this paper and others - I am looking to write a paper on bias in psychosomatic research, thus any help much appreciated.

    p.s. I am on a different forum called Foggy Friends, I just came on here today, so if anyone wants to verify who I am, I am not a psychiatrist or reporter, Im an ME sufferer / independent researcher.
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  13. Snow Leopard

    Snow Leopard Senior Member

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    The main bias of psychiatrists is they think subjective self reports are everything - a disease only matters if someone complains about symptoms on a questionnaire. You can see how circular this is if the psychiatrists are the ones writing the questionnaire. The quality of the questionnaires used in CFS have been questioned in more than a few studies/reviews, but few others than Lenny Jason actually care about the quality of the questionnaires.
    Dolphin likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    I'm a current victim of Dutch CBT, so have been reading everything I can find from the Nijmegen idiots since my GP first tried to send me to them for treatment. Initially she thought ME was a psychological issue, and now she thinks CBT used for ME is the same as CBT used for coping with disease, rather than being presented as a method of recovery.

    The actual studies done in the past few years are quite interesting themselves ... not so much for the results, but as to how the researchers have interpreted them. More specifically, they did a few studies showing how much better people felt based solely on questionnaires. Then they did an analysis of those studies to explain why actometers showed no objective improvement - this was something of a shock, since the studies being analyzed did not mention of actometers in the abstracts when they were initially published, and don't mention actometers at all after simply stating that they were used.

    This study mentions that the other studies had actometers, and there were no improvements: http://www.ncbi.nlm.nih.gov/pubmed/20047707 ... It also describes the criteria for deciding which ME patients are "passive" compared to the more common "active" ME patients:
    This is noteworthy because they are describing a physical difference with a term, "passive", that refers to a psychological or behavioral trait. The non-physical ascriptions of these differences are made even clearer in their Dutch CBT manual, where the same term is also used extensively.

    Eventually they seem to ascribe improvements to "a change in illness-related cognitions", and there is an implication that an improvement physical activity is irrelevant for ME/CFS patients. I get a little nauseated when trying to follow the twisted logic in this paper.

    Here are the three studies they were reviewing in the above study:
    * http://bjp.rcpsych.org/content/193/4/340.long
    * http://www.ncbi.nlm.nih.gov/pubmed/15585538 (abstract)
    * http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)04198-2/fulltext
    This third one suggests avoiding actual medical care and states that ME is psychological:
    Here's the CBT guide for passive versus active ME patients: http://www.sciencedirect.com/science/article/pii/S1077722906000265 ... I'm certain I've seen the full text free somewhere on the web, probably from a Dutch ME organization.

    And finally, this study by the Nijmegen group discusses how questionnaires aren't accurate compared to actometers: http://www.hqlo.com/content/7/1/29 :thumbsup:
  15. Spring

    Spring Senior Member

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    Jos van de Meer, partner in crime from Bleijenberg in Nijmegen, also retired! Last friday. He held a farewell speach on 'Annoying patients'. That was the title. I dont know about the content, but I guess we were included.
  16. alex3619

    alex3619 Senior Member

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    On "annoying patients" I am not sure if this was in English so I don't know if this is accurate, but in English this can also mean " on how we annoy patients" which is ironic.
  17. Dolphin

    Dolphin Senior Member

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    The full text can be seen in Jan-Frederic Wiborg's PhD thesis: http://dare.ubn.kun.nl/dspace/bitstream/2066/95111/1/95111.pdf .
    Unfortunately, it's locked for printing and copying.
  18. PhoenixDown

    PhoenixDown Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/20502065
    It's hardly safe to pretend a progressive illness that worsens with triggers like exercise, doesn't worsen. Not sure where they got their sample of patients from or what criteria they used. Perhaps a subset of CFS patients don't worsen, but this study draws irresponsible conclusions that everyone with these diseases are not harmed by the belief that symptoms don't worsen.

    Attached Files:

  19. Dolphin

    Dolphin Senior Member

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    If you or anyone is interested, the Heins paper is discussed in this thread: http://forums.phoenixrising.me/index.php?threads/from-nijmegen-new-one.4123/#post-92358
  20. Dolphin

    Dolphin Senior Member

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    Valentijn likes this.

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