1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Read the round up of the news, w/c 12/02/18. Click here to see.
    Dismiss Notice

Wyller: Incorrect information about CFS

Discussion in 'PsychoSocial ME/CFS News' started by Kalliope, Feb 5, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    295
    Likes Received:
    3,622
    Location:
    Norway
    Before Christmas, the Journal of the Norwegian Psychological Association had two wonderful texts about ME. One was about a family bravely talking about their loss of trust in the health care system after the child authorities several times had looked into their situation. The other text was from a psychologist with long experience with adolescents with ME, acknowledging the young adults as the real experts when it comes to ME.

    Seems this has infuriated prof. Wyller, so today the Journal published a response from him and a student in psychology.

    Feilinformasjon om kronisk utmattelsessyndrom

    google translation: Incorrect information about chronic fatigue syndrome

    They conclude:

    1. Cognitive behavioral therapy is the only form of treatment that has shown a positive effect on CFS / ME. On the other hand, this is a robust discovery, reproduced in several major studies in adults and adolescents, and also with positive effects on objective goals such as school participation (see, among others, White, Goldsmith, Johnson, et al., 2011 and Nijhof, Bleijenberg , Uiterwaal, Kimpen & van der Putte, 2012). No adverse effects of such treatment have been detected (Dougall, Johnson, Goldsmith, et al., 2014), despite what is often argued. We therefore believe that all patients with CFS / ME should be offered cognitive behavioral therapy.

    2. A number of cross-sectional studies show differences in different biological systems (inflammation processes, hormone levels, autonomic nervous activity) in CFS / ME patients and healthy controls, but the differences are generally very modest, and there is an obvious lack of association between biological changes and patient symptoms. Additionally, such group differences do not say much about causal relationships. Often the differences can be explained by other factors, such as activity level and diet differences.

    3. The long-term prognosis at CFS / ME is relatively good, especially in adolescents. A majority becomes clearly better over time, and many become completely healthy (see Norris, Collin, Tilling, et al., 2017). Having a solid perception of individual patient prognosis should obviously be avoided - both with CFS / ME and other diseases. However, entering hope is an obvious task for health professionals. We therefore encourage professionals to familiarize themselves with the newly established Network Recovery Norway, which communicates stories from people who have been completely fresh by CFS / ME.
     
    Last edited: Feb 5, 2018
    Barry, Andy, Rick Sanchez and 5 others like this.
  2. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    788
    Likes Received:
    4,347
    Funny how "scientists" are interested in lies over science.... :emoji_face_palm:
     
  3. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    208
    Likes Received:
    2,256
    My impression is that this "recovery network" exists to promote the Lightning Process with "recovery stories". Because direct advertisement is now prohibited by law.
     
    Barry, Denise, EzzieD and 5 others like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    980
    Likes Received:
    7,351
    I wonder how the co-author is related to him?

    He talks about a contradiction in his piece, but surely his position also fall foul of it? If one recognises the potential problems with bias in information from patient self-reports, why would you then ignore that in the context of nonblnded trials?

    It can be difficult to do a close reading of things via google translate, and maybe there were problems with the pieces he is responding to, but this piece seems very weak.

    "The long-term forecast at CFS / ME is relatively good, especially in adolescents. A majority becomes clearly better over time, and many become completely healthy (see Norris, Collin, Tilling, et al., 2017). Having a solid perception of individual patient prognosis should obviously be avoided - both with CFS / ME and other diseases. However, entering hope is an obvious task for health professionals. We therefore encourage professionals to familiarize themselves with the newly established Network Recovery Norway, which communicates stories from people who have been completely fresh by CFS / ME."

    So the only reference to support "the long-term forecast at CFS / ME is relatively good" is a paper on adolescents (who were never even assessed in person for CFS)?

    LOL at how he moves from saying "Professionals manage objective, research-based knowledge" to promoting the Recovery Network, which actively seeks out and attempts to promote anecdotes only from patients who report recovering with some sort of psychosocial intervention. Wyller is such a joke.
     
    Barry, Atle, EzzieD and 6 others like this.
  5. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    405
    Likes Received:
    3,179
    I would use words like despicable fraud and cruel beyond belief.
     
    Solstice and strategist like this.
  6. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    980
    Likes Received:
    7,351
    I'd edited before posting Sean! When I'm feeling sharp enough I try to think 'is there anything in there which if taken out of context, could be used against us'. It does mean I can come across as rather mild.
     
    Last edited: Feb 6, 2018
    Barry, Trish and Sean like this.
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    295
    Likes Received:
    3,622
    Location:
    Norway
    I wonder if it could be his daughter?
    EDIT: It is his wife - I got confused as she's presented as a student.

    BTW, Wyller and his wife had a text yesterday in Psykologiskno (Scandinavian Psychology - open-access journal) about highly sensitive people.

    Høysensitive kan ha nytte av psykologisk behandling
    Google translation: Highly sensitive can benefit from psychological treatment
    ME is not mentioned but it does say
    Highly sensitive people are at increased risk of various health problems, says Wyller. They have more frequent symptoms of anxiety and depression, but also bodily discomfort, such as chronic pain.

    ... and I wouldn't put it past them to apply that to ME-patients.

    I remember even Naviaux talking about ME-patients in the lecture given at the Stanford symposium last year as a special kind of group - very intelligent, gifted etc. All very flattering, but how does he know that the patients he has met are representative for the whole patient group? And can he not see how problematic it is to describe a whole patient group as having the same personality?
     
    Last edited: Feb 6, 2018
    Andy, Esther12, lycaena and 3 others like this.
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    295
    Likes Received:
    3,622
    Location:
    Norway
    Amen!

    And what planet does he live on when he can state:
    The field has long been dominated by unilateral biomedical thinking
     
    Esther12, Solstice, Atle and 2 others like this.
  9. Denise

    Denise Established Member (Voting Rights)

    Messages:
    57
    Likes Received:
    358
    So "Recovery Network" is limited to people who have had CBT/LP/similar.
    How do they assess what patients had before the "treatment"?
    What is considered recovery?

    The hype about so many patients being highly gifted, sensitive, motivated, Type A, etc. doesn't take into account that it is very likely that to get diagnosed properly (not Fukuda/Oxford,etc) one has to either have a great support system that helps get the patient to the right healthcare professionals or one has to persevere relentlessly (motivation?) to get an accurate diagnosis.
    The estimates of people not diagnosed (84-90%) could easily encompass those who don't have sufficient support and those who are unable to relentlessly persevere to get an accurate diagnosis.



    It might help to point people in the direction of these two recent pieces:
    The Failure of Clinical Guidance for People with ME
    and
    Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
     
    Esther12, Cheshire and Kalliope like this.
  10. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    980
    Likes Received:
    7,351
    Kalliope likes this.

Share This Page