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Dutch article about people homebound with CFS

Discussion in 'Latest ME/CFS Research' started by Hope123, Mar 22, 2010.

  1. Hope123

    Hope123 Senior Member

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    Can someone find the full-text of this for me? It's important stuff as so little is studied about homebound CFS but I'm not sure about the authors. (Any Dutch posters?) Thanks.

    Psychiatry Res. 2010 Mar 4. [Epub ahead of print]

    Being homebound with chronic fatigue syndrome: A multidimensional comparison with outpatients.
    Wiborg JF, van der Werf S, Prins JB, Bleijenberg G.

    Expert Centre Chronic Fatigue, Radboud University Nijmegen, Medical Centre, PO Box 9101, 6500 HB Nijmegen, The Netherlands.

    Many patients with chronic fatigue syndrome (CFS) seem to experience periods in which they are homebound due to their symptomatology. Despite a growing body of research about CFS, little is known about patients who no longer feel able to leave their homes. The purpose of the present study was to examine whether homebound patients differ from other CFS patients on illness-specific characteristics. Besides experiencing more impairment in daily functioning than participants of an outpatient intervention study, homebound patients were characterised by extremely high levels of daily fatigue, predominant somatic attributions, and pervasively passive activity patterns. The course of symptomatology was similarly stable in both groups. Our findings suggest that homebound patients form a distinct subgroup of CFS patients who might profit from a treatment approach that is tailored to their specific needs. The exploratory nature of this first systematic investigation of homebound CFS patients is stressed, and suggestions for future research are made. Copyright 2010 Elsevier Ltd. All rights reserved.

    PMID: 20207012 [PubMed - as supplied by publisher]
     
  2. gracenote

    gracenote All shall be well . . .

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    I'd be interested in reading the full article, also.

    The above quotes concern me. It is published in Psychiatry Research. I don't think it will end up being useful to us.
     
  3. Dolphin

    Dolphin Senior Member

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    I'd be interested also. The authors (certainly Bleijenberg and Prins, the other two are students/former students - all 4 are psychologists as far as I know) are "hardline" CBT promoters who think CBT based on GET leads to recovery, and hype it a lot. Bleijenberg is invited to a lot of CDC CFS stuff.
     
  4. _Kim_

    _Kim_ Guest

    I read the full text a few days ago and didn't want to dirty up the Library with garbage like this. But since you all want to see it for yourselves, here ya go.
     
  5. Esther12

    Esther12 Senior Member

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    Thanks Kim.

    That was so dull. This is the sort of CFS paper thats mediocrity makes my brain ache. Academia really does produce a whole lot of tedious rubbish. It's really good to have the full papers available though, in case we see it referenced somewhere and want to check it out.
     
  6. Hope123

    Hope123 Senior Member

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    Thanks, Kim. I know what you mean but we need to see everything, good or bad, in order to clearly assess the situation. Besides, the old rule is keep your friends close but your enemies closer.

    I read the discussion and a quick scan of the figures. By a number of measures (subjective and objective actigraphy), the homebound folks are sicker as expected. It's in the conclusions where things go awry - the researchers make the error of directionality - assuming people think they're sicker and thus decrease activity rather than people knowing they are sicker and decreasing activity in response. Without further examination, you can't make the conclusion they did - in fact, their own data shows that the homebound don't have more psychological issues than people who can attend clinic. (Note the waffling in the discussion section around this!)

    One thing I've learned from years of reading papers is to de-couple the results from the discussion section. Results are supposed to be written so readers can make their own conclusions separate from the authors and compare it to what the authors think.
     
  7. oerganix

    oerganix Senior Member

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    Dutch company Elsevier published a Merck-paid-for fake journal

    "Copyright 2010 Elsevier Ltd. All rights reserved." CONSIDER THE SOURCE...

    Elsevier is probably the biggest publisher of "medical" "literature" in the world. I read elsewhere that they publish 25% of all medical journals. They also publish the Lancet.

    See Wikipedia for more info:
    http://en.wikipedia.org/wiki/Elsevier

    Part of their history:
    "[edit] Fake journals

    At a 2009 court case in Australia where Merck & Co. is being sued by a user of Vioxx, the plaintiff alleged that Merck had paid Elsevier to publish the Australasian Journal of Bone and Joint Medicine, which had the appearance of being a peer-reviewed academic journal but in fact contained only articles favourable to Merck drugs.[27][28][29][30] Merck has described the Australasian Journal of Bone and Joint Medicine as a "complimentary publication", denied claims that articles within it were ghost written by Merck, and stated that the articles were all reprinted from peer-reviewed medical journals.[31]

    In May 2009, Elsevier released a statement by Michael Hansen regarding the Australasian Journal of Bone and Joint Medicine, conceding that these were "sponsored article compilation publications, on behalf of pharmaceutical clients, that were made to look like journals and lacked the proper disclosures." The statement further acknowledges that this "was an unacceptable practice."[32]

    Also in May 2009, The Scientist reports that according to an Elsevier spokesperson, there were five further sponsored publications that "were put out by their Australia office and bore the Excerpta Medica imprint from 2000 to 2005," namely the "Australasian Journal of General Practice, the Australasian Journal of Neurology, the Australasian Journal of Cardiology, the Australasian Journal of Clinical Pharmacy, the Australasian Journal of Cardiovascular Medicine".[33]

    Excerpta Medica is a "strategic medical communications agency" run by Elsevier, according to the imprint's web page.[34]"

    They've also had many editorial boards resign en masse. They've had to stop promoting "arms fairs" as well.
     
    currer likes this.
  8. _Kim_

    _Kim_ Guest

    oerganix, are you suggesting that Psychiatric Research, the journal that this article appeared in, is fake?

    I looked over their author guidelines and to me, this journal looks legit. It is peer-reviewed and expects studies that include human subjects to conform to the same standards as other medical journals.

    FWIW, I have published with Elsevier and found my dealings with them to be professional.
     
  9. Hope123

    Hope123 Senior Member

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    Yeah, I've dealt with Elsevier before and they're well known. Also, Pubmed has criteria for which journals it accepts for indexing. I had a friend who was the editor-in-chief for a medical journal and remembered him telling me the process he went through to get his journal indexed in Pubmed.
     
  10. Dr. Yes

    Dr. Yes Shame on You

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    FWIW, Bleijenberg is a co-author of the Dutch XMRV study. I have seen him referred to in a few places (unflatteringly, of course) as "the Dutch Wessely". He is a pre-eminent member of what some of us lovingly call the 'psychobabble' school.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    This paper is an absolute POS. It would fail an elementary school science fair. One of the many egregious problems is they emphasize that family members should be pushed not to help severely disabled ME patients as this will worsen their illness. Shameful.
     
  12. Dr. Yes

    Dr. Yes Shame on You

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    :tear:
    Thanks for the laugh Maarten - I needed that!

    Not to imply that your life story and Dutch misery are laughs.

    I have heard similar things said not long ago in my country as well. Mostly from a psychologist I knew.

    That reminds me of something.. How can satire ever go 'too far' if all truths are relative, I wonder..

    What a generous man.

    I am sorry you are too ill to escape and seek asylum in another country; I am currently too ill to escape something of an asylum.

    Btw - Do you have any information on Jos van der Meer regarding some public comments he may have made (I believe I read about them somewhere) regarding his disbelief in XMRV and - I think - his certainty that he could prove it did NOT cause CFS prior to beginning his study? Wish I could remember exactly what I had seen to that effect...
     
  13. lansbergen

    lansbergen Senior Member

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    de yes asked :

    Btw - Do you have any information on Jos van der Meer regarding some public comments he may have made (I believe I read about them somewhere) regarding his disbelief in XMRV and - I think - his certainty that he could prove it did NOT cause CFS prior to beginning his study? Wish I could remember exactly what I had seen to that effect...


    He expressed his doubts in the tv show noorderlicht and to a journalist of the newspaper trouw.

    I tried to PM you but your box is full.

    The articels can be found at: http://www.hetalternatief.org/XMRV 2009 592.htm

    kind regards toos
     
  14. Dolphin

    Dolphin Senior Member

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    Jos van der Meer regularly publishes with Gijs Bleijenberg. They are/were based in Nijmegen and together, as was said, are likely the Dutch Wessely School.
     
  15. upnorth

    upnorth

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    frustrating

    How frustrating....I have no interest in reading the article especially when I read the words "somatic manifistations"- how are sore throat, fevers, severe muscle fatigue "somatic"....I wonder if any Dr. would refer to the symptoms in AIDS, MS or the Flu as "somatic manifistations"....it is clear to me from this teminology that it's not an article about a biologic illness.

    Sometimes I just don't understand why we're so stigmatized? Why? In the big scheme of things, of all the illnesses, how did I get stuck with this one?. I know people with all kinds of other illnesses (Lupus, MS, Diabetes) and none suffer from the lack of medical attention and stigmitization as us. On top of it, not one of these people is as disabled as me.....I just don't get it.

    I think of "truth will out". Obviously many of us are quite ill (biologically). When I first got ill, I figured it was only a matter of time until they figured at least some of "it" out......
    So frustrating....especially when I read and hear about the experiences of those in the U.K.
     
  16. oerganix

    oerganix Senior Member

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    No, I'm not saying ALL their publications are fakes, only a few, (ANY is too MANY, IMO) and that they are willing to get in bed with Merck and other BigPharma and the psychobabble school of "illness beliefs". It appears that the owner will do anything for money. It took several years of boycotts and complaints from the editors and other staff at the BMJ and the Lancet, which he (Reed Elsevier) also owns, to get him to stop putting on arms fairs all over the world. Somehow the writers for medical publications thought that helping the sellers of illegal torture equipment, land mines, cluster bombs, etc., was incompatible with promoting health. Whole staffs of some medical journals have quit in protest at heavy handed control over what/who they can publish. Several journals have been disbanded after such a revolt and then reformed under a new name, without the support and control of Reed Elsevier.

    He also owns "Choice Point" a database information service used by Medicare and the British Welfare Board. It has also been accused of electronically "massaging" the data to get Bush elected.

    From Rense: Doctors Poisoned by Medical -Media Monopoly by Dr Len Horowitz: http://www.rense.com/general89/hor.htm
    "Besides corrupting medicine the Reed-Elsevier-ChoicePoint's medi-media-monopoly controls the vast demographic data used by Anglo-American governments and corporations, including the U.S. Federal Census data used to administer Medicaid/Medicare and advance "Health Care Reform."
    [SIZE=+1][/SIZE] [SIZE=+1]In 2006, the company was fined $15 million by the Federal Trade Commission (FTC) for selling data, including confidential social security numbers of 163,000 citizens, to a crime ring according to court records.[/SIZE] [SIZE=+1][/SIZE] [SIZE=+1]Reminiscent of Rockefeller-Third Reich eugenics policies, ChoicePoint collects genetic data used to classify and identify people for law enforcers. Besides supplying British and American "intelligence" organizations, including the FBI and CIA, the private entity conducts background checks for more than half of America's 100 largest companies, including many major retailers, the Bank of America, UnitedHealth Group, and United Parcel Service.[/SIZE] [SIZE=+1][/SIZE] [​IMG][SIZE=+1]"Conflicting interests damagingly taint health science and medicine, " the authors report. Pharmaceutical propaganda facilitates geopolitics and economics most obviously evidenced by the manufactured H1N1 pandemic. In this regard, social conditioning, governmental legislation, and health care policies and purchasing have been profoundly impacted by the 'Pharma-media'."[/SIZE]



    If anyone has access to Medical Veritas, I'd love to read this article:
    [SIZE=+1]LOS ANGELES[/SIZE][SIZE=+1] -- European Council officials investigating vaccine industry corruption and media frights that prompted governments worldwide to over-stock risky H1N1 vaccines and expensive drugs for the unusually mild "2009 swine flu pandemic" have a Special Reportonline in Medical Veritas to consider.[/SIZE] [SIZE=+1][/SIZE] [​IMG][SIZE=+1][/SIZE] [SIZE=+1]"Pharmaganda: A Study of Conflicting Interests," by Editor-in-Chief Dr. Leonard Horowitz, and investigative journalist Sherri Kane, evidences a virtual monopoly by Reed-Elsevier over scientific publications empowered by ChoicePoint, a leading intelligence organization and census data company serving organized crime.[/SIZE] [SIZE=+1][/SIZE] [SIZE=+1]Vast corruption of medicine is administered by persuasion through health science publications according to the authors who indict The Lancet--an esteemed medical journal--and other Reed-Elsevier periodicals for gross conflicting interests.[/SIZE] [SIZE=+1][/SIZE]
     
  17. upnorth

    upnorth

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    Maarten, I have a friend in the UK with M.E., however she's very lucky as it's a mild case. She has to "hide" the fact from employers etc. that's she's ill due to stigmatization. Luckily, she can still work. For many of us that's not the case. If I see certain names on research studies, I don't let myself read them as I get so infuriated. I had no idea the situation was as bad in Holland, although I guess I've read enough "useless" psychological research from there that I should have suspected. I agree with you that politics and economics play a role in the stimitization....Also the fact that there's a good portion of us who are middle aged women. What would it mean for societies to admit that so many of us are truly ill? That's a good point. It's in their best interest to make the issue one of individual motivation/malingering and neurosis (However, don't get me wrong, there are people with psychiatric conditions that are just as ill - perhaps from a biologic cause)....however, we're very often treated as neurotic rather than sick, which is ridiculous.

    The situation in Canada is mixed. General GP's I've seen are often suspect - or at least believe it can't really be that bad when tests come back normal. When I describe my inability to exercise e.g. that it leads to crashes and bedboundness I get a "look" or "sugestion" that perhaps this is anxiety related rather than a physical problem....For the most part I try to avoid any kind of medical care which just angers me. However, like you mentioned, Canada does have a bit better situation than it sounds like Holland or I know than Britain. I was able to get disability (after some work mind you) with just an M.E./cfs and sleep disorder diagnosis. I also have a specialist who was one of the members that wrote the Canadian diagnostic guidelines. While she is a big advocate of pacing for improvement (not a cure), she firmly believes in a biologic cause of the illness and that time and science will eventually elucidate the true cause just as it has with M.S. (which was originally dubbed a form of hysteria!) or AIDS.
     
  18. Dolphin

    Dolphin Senior Member

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    Results table from paper

    [​IMG]
    My first image uploaded - thanks to the instructions meagenda posted elsewhere - fingers crossed it works

    The selection outpatients are the natural course group of patients who took part in the Prins (2001) trial. These were less severely affected at baseline. At follow-up, there was no statistically significant differences between the two groups on any of the measures. Numerically, out of the eight measures, four of the natural course group had improvements, three of the homebound group had improvements and there was one tie - a combined result which does not show a statistically significance difference between the two.

    The discussion seems to completely ignore the fact that those at home did no worse an also that the homebound didn't worsen on any scale.
     
  19. biophile

    biophile Places I'd rather be.

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    Why can't I access forum files?

    Whenever I try to access files uploaded by other forum members (eg the Dutch study currently under discussion), I see this message:

    Any ideas?
     
  20. gracenote

    gracenote All shall be well . . .

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    biopsychobabble,

    This article was posted in the Phoenix Rising Library that is only available to senior members of this forum. It is not an open source article so has not been posted publicly. Since I don't have the URL for the article, I don't know how to get it for you, but maybe someone else can. You only have 91 more posts to go for full access. We will cheer you on as you post.

    So sorry. I wish I could help.
     

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