Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Dutch News: "Recognized or Misunderstood Disease: Suffering is the Same"

Discussion in 'General ME/CFS News' started by Valentijn, May 29, 2015.

  1. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
    This was briefly and positively mentioned in the Dutch morning news on TV, which pretty much everyone sees. The TV coverage only mentioned the bit about the gross disparity in funding and treatment, despite similar severity between the misunderstood and recognized disease. Their source for it was this article:
    http://www.trouw.nl/tr/nl/4516/Gezo...-onbegrepen-ziekte-lijden-is-even-groot.dhtml

    The article is mostly about the impact of CFS, FM, and IBS (misunderstood) versus RA and MS (recognized). It also looks like there were some head-to-head comparisons between CFS and MS, and between FM and RA, due to the similar symptoms, and the quoted research found that the impacts were the same for both diseases in each pair in regards to limitations and interfering with work.

    But the researcher also points out that despite the similar levels of suffering, there is much more money and attention given to the better understood diseases. As a result, doctors find patients with the unexplained diseases to be troublesome and have no treatments for them. She says that CFS patients have more psychological problems than MS patients, but suggests that it is due to lack of recognition and disbelief from the doctors.

    The director of an ME/CFS patient organization was interviewed, and is glad that attention is being brought to the issues, but would prefer that research was investigating the medical cause of the disease.

    The Health Council will be looking into the issues, commissioned by the Dutch House of Representatives following a petition by patients and supporters. That should happen after the summer.

    Then there's a really stupid excerpt about "Barbara" being diagnosed with CFS and being oh so very lucky to get referred to a psychosomatic CBT clinic, where GET saved her! :vomit:
     
    Last edited: May 29, 2015
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
    I looked into the researchers a bit, and they're pretty interesting. They are involved in psychosomatic research, and refer to CFS, FM, and IBS as functional somatic syndromes, but define that merely as being illnesses where the cause is not yet understood. There's no real implication that they consider the disease to actually be psychosomatic. I also don't see any indication that they're using their results as a platform to demand more funding for CBT clinics, unlike what the BPS groups tend to do in the UK when patient services are shown to be inadequate.

    Most of their publications are behind paywalls, but they really don't seem to engage in the usual spin, and they seem to confine their research to actual psychological and social issues, instead of trying to explain the diseases in psychosomatic terms. They also don't seem at all inclined to spin results ... for example, concluding that there's no consistent association between stress and symptoms, instead of bending reality to support the hypothesis, as other Dutch researchers have been known to do :rolleyes:

    At any rate, they aren't a hardline BPS group, and are probably annoying the hell out of the hardline Dutch group :thumbsup:
     
    beaker, Simon, meadowlark and 13 others like this.
  3. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    That is an important point to get across.

    A huge chunk, even the majority, of psychosocial problems we have arise from how the medical system (and hence broader society) treats us.

    They are iatrogenic.

    This is the ugly truth psychiatry and medicine has to deal with. Good to see they are starting to grapple with it.
     
    beaker, meadowlark, Dolphin and 8 others like this.
  4. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    Prof Julia Newton also (robustly - I think) made a similar point in her recent presentation - that any mental health problems seen in ME patients are secondary to dealing with a severely incapacitating disease.
     
    Dolphin, Aurator, L'engle and 6 others like this.
  5. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    What really shits me is that we already know the general outcome of treating humans like this, particularly when imposing double-bind 'choices'. There is nothing unique to ME/CFS in this regard, we are just another in a long line of shabby examples.

    Yet they still keep doing it. :mad:
     
    geraldt52, Mij, jimells and 4 others like this.
  6. alex3619

    alex3619 Senior Member

    Messages:
    12,523
    Likes:
    35,227
    Logan, Queensland, Australia
    If they actually believe that, and treat it that way, and others see what they write in that light, its good thing. That is a lot of ifs though.
     
    WillowJ, Cheshire, Bob and 1 other person like this.
  7. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
    The same story was picked up by nu.nl, a more mainstream publication, but their coverage is based on the trouw.nl coverage. It works better with Google Translate, however, and doesn't include Barbara's fairy tale recovery. http://www.nu.nl/gezondheid/4058122...et-onbekende-ziektes-als-erkende-ziektes.html

    The comments at nu.nl are all sympathetic or neutral, though it's not getting a lot of comments for that site. There are extremely good and well-informed comments on the trouw.nl site now. One mentioned that the quoted researcher, Rosmalen, is involved with http://www.gripopklachten.nl/ .

    The link for doctors ( http://www.gripopklachten.nl/informatie-voor-artsbehandelaar/ ) indicates that they use CBT and address BPS concerns, in an online format. But there's no clarification on the type of CBT used, and they mention the need to refer patients to specialists for some complaints, which is an absolute no-no according to the typical psychobabblers. GET isn't mentioned, and the context in which they refer to CBT doesn't seem to promise a cure or exclude the possibility of pacing. I'm a bit tempted to ask my GP to sign me up just so I can see if it's a quackfest, mildly clueless, or potentially useful for new patients.

    So basically it seems like the researchers in this group have a milder false illness belief than the hardcore psychobabblers, but still think that there's stress, childhood abuse, poor coping, etc involved. But they also seem more willing to suggest an ongoing intermediate physical cause (HPA axis dysfunction resulting from an illness or abuse), and completely unwilling to spin their own results in accordance with an agenda. They also might be another case of researchers who are unable or unwilling to question the conclusions drawn by "authorities": CBT works, psychosomatic diseases exist, etc.

    Nonetheless, with their BPS focus I doubt they'll ever find anything useful or original. But at least they aren't as overtly harmful as the Nijmegen group in the Netherlands.
     
  8. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,615
    Likes:
    12,454
    South Australia
    Isn't James Coyne @Coyneoftherealm currently at University Medical Center Groningen?

    Hmm...
     
  9. Asa

    Asa Senior Member

    Messages:
    175
    Likes:
    526
    Sorry, I'm not up to reading all the text, but I believe Cort Johnson recently wrote about this Dutch info too: http://www.cortjohnson.org/blog/201...jor-diseases-in-medical-world/#comment-650740

    Should it not have been named elsewhere (and for reference), the study is: Functional limitations in functional somatic syndromes and well-defined medical diseases. Results from the general population cohort LifeLines Monica L. Joustra a , Karin A.M. Janssens a, Ute B├╝ltmann b , Judith G.M. Rosmalen. Journal of Psychosomatic Research(2015).

    http://www.sciencedirect.com/science/article/pii/S0022399915004390
     
  10. Clodomir

    Clodomir Where is the sun?

    Messages:
    174
    Likes:
    230
    Belgium
    Hi,

    I just read the article and found the Barbara story so unbelievable:bang-head:....
    I read also the comments and I can add some more informations: In Belgium, we had a GET program, who was abandoned (2012-2013) because it doesn't work (follow the AA comment in deutsch).
    Now the program is back: it is paid by the government and all the hospital can ask money to have a special place, doctors, psychologists, nurses for CFS patient!!!!!
    There is a big difference between the 2 parts of the country: the french part (Wallonia and Brussel) didn't ask any money and don't want to have specialized center, but the flemish well??? Isn't that strange? :woot:
    And the funniest thing is that the french GP's do not know that and still send you to a no more existant center!!!!
    Belgium is a very strange country...;)

    Have a nice day

    Clodomir
     
    Cheshire and Valentijn like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,680
    Likes:
    28,203
    Valentijn and Kati like this.

See more popular forum discussions.

Share This Page