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CBT and GET can no longer be recommended for ME/CFS in Norway

Discussion in 'General ME/CFS News' started by Tulip, Jul 3, 2011.

  1. Camilla

    Camilla

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    Unfortunately the Norwegian Directorate of Health has given in to pressure a bit since these excellent recommendations were made in July. In December, the Directorate updated their website information on ME/CFS:
    http://helsedirektoratet.no/helse-og-omsorgstjenester/cfs-me/Sider/default.aspx

    and here one can see that while the Directorate now recommends ICC (that's a big first!), it has unfortunately backed away a bit from the previous "CBT and GET can not be recommended". Under "Treatment" the text now states that CBT and GET has documented effects in some groups (understood: within the ME/CFS umbrella). This change is most unfortunate, and hopefully the excellent Norwegian patient organizations can lobby for a change back to the more restrictive (and truthful) previous statement.
     
    Wildcat likes this.
  2. Dolphin

    Dolphin Senior Member

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    This paper has some data from Norway:
    see Table 1 (4 of 5). Don't know if it could be of use that it has now been combined with data from other countries (see Table 2).
     
  3. barbc56

    barbc56 Senior Member

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    It's certainly a step in the right direction Yea!!

    That being said, for me. physical therapy, based on my limitations and more of the "envelope" theory, has prevented some deconditioning which any chronic disorder where you are not active can leave you. I also had counseling by a nurse/counselor on how to deal with all this shit, and nary a word about illness beliefs. She works with people with chronic illnesses and I think the fact that she has worked as a nurse and counselor made this so effective for me.

    I live in the US which is more open to these options but it's all relative and depends on your healthcare provider. Mine stresses prevention as well as treatment.

    I read where one person who was bedbound would raise one arm at a time and write the alphabet in the air until she tired. Even little things like this will help but certainly not cure you.

    Barb C. :>)
     
  4. Dolphin

    Dolphin Senior Member

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    I'm afraid I have to disagree: they won't necessarily help. I think the options are: they might help, they might make no difference, or they might make somebody worse.
     
    justinreilly and currer like this.
  5. alex3619

    alex3619 Senior Member

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    Hi Dolphin, and I would like to add: even in the same individual. I have had times when exercise helped, exercise did nothing, and exercise made me worse. The usual result is make me worse, sometimes much worse, but its not universal. During some very good periods I got benefit from exercise. However, every major decline in my health since the 1970s has been associated with exercise. Every one. I have not had any major declines in nearly a decade now, but then I have strictly enforced pacing (well, most of the time) during that period. Typically during times when I could not pace (eg moving house) and my activity went up, my total health declined - but because these times were brief, even if intense, I bounced back in a few weeks.

    Bye, Alex
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    Seems like a huge waste of very little available energy to spend it with silly exercises. I'd find it more useful to do something practical or at least enjoyable, like using that hand to surf the internet, change channels with the TV remote, pet a cat, etc.

    I also don't think doing anything until tired is a good idea. We need to stop well before that.
     
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  7. currer

    currer Senior Member

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    I have always disagreed with "deconditioning" - I was completely bedbound for two years and then recovered rapidly.

    I noticed no deconditioning as I returned to activity. I do not think it is a problem for a previously health young person.
    In fact there is much less muscle wasting from lack of use in ME than in other comparable disorders. This fact has been commented on before and possibly relates to the unique pathology of ME which separates it from the conditions which are being used as deconditioning analogies.

    People who are sick with ME genuinely cannot be active, and the consequences of exceeding their individual capabilities can be severe.

    Deconditioning in a severely ill patient is a threatening and damaging concept, as it can be used to deny them what they most need - rest. We all know of cases where the individual has relapsed severely and sometimes permanently from medically enforced activity based on the "deconditioning" model.
     
  8. snowathlete

    snowathlete

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    GO NORWAY!

    It will be years yet before its removed as a 'treatment' for ME/CFS in the UK though. If ever.
     
  9. Enid

    Enid Senior Member

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    And they do not understand what they claim to "treat" yet until all the science is in. Dodgy to say the least.
     
  10. currer

    currer Senior Member

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    Camilla, this change sounds sinister to me.

    I think the Norwegian government will be put under a lot of political pressure to fall into line on ME.
    I hope this is not the beginning of that.
    Norway is much more independent than most countries, as it is rich, has a high per capita income, did not go under in the last banking crash, and has plenty of its own oil. However, the multinationals are a force there as much as in any other country. Norway really is on its own and I wonder how much they are prepared to sacrifice to stand against the influences that will be brought to bear against them.
     
  11. Camilla

    Camilla

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    currer, like many European countries Norway has a strong psychosocial CBT-GET lobby and there is an ongoing struggle between this group of physicians/researchers (Wyller being the most prominent) and the biomedical school (Baumgarten and others). In June, with the (then) recommendations by the Directorate, we thought the biomedical school had made a huge win, now with the December recommendations it's a step backwards.

    However, the fact that the Directorate recommends ICC (International Consensus Criteria) is promising. It's clear they are torn between the psychosocial lobby and the biomedical folks.
     
  12. Wildcat

    Wildcat Senior Member

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    Hi Camilla,

    is that Bruun Wyller (the same one who promotes Lightning Process (LP), and who recommended Lightning Process to the parents of the youngster who attempted suicide as a result of doing LP)?

    Or is that another 'Wyller'?

    .
     
  13. Camilla

    Camilla

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    That's the one, Vegard Bruun Wyller is his name. He is a pediatrician at Oslo University Hospital and in charge of the ME/CFS pediatric clinic/research unit there. His team focuses on chronic fatigue (but they use the terms CF and ME/CFS interchangeably) and he believes ME/CFS is primarily a stress induced disorder. He does some biomedical research, but he is coming from this physcosocial perspective (although he likes to say that there is no real difference between phsychiatric medicine and somatic medicine).

    He promotes CBT and GET, along with many Norwegian and European colleagues. He also, as you point out, believes Lightning Process can be useful, though I don't think he works with LP himself.

    This camp is in stark contrast with the other ME/CFS center at Oslo University Hospital, localized at Aker and led by Barbara Baumgarten-Austrheim (one of the co-authors of ICC). The Baumgarten center is for ME/CFS patients from the age of 18 and has a biomedical outlook.

    The debate in Norway is intense and ongoing, and I think the ups and downs of the Directorate of Health mirror this polarized situation.
     
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree 100% currer!
     
  15. CBS

    CBS Senior Member

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    Wyller also uses an incredibly loose Dx criteria for adolescent CFS - 3 months of unexplained fatigue. Even so, his data are not consistent with a psychological etiology. He published a paper last year showing clear ADH deficiency in a significant subset of his patients (non-normal distribution of ADH values), which could easily inpact fluid balance and explain many of the cognitive problems he observed.

     
  16. currer

    currer Senior Member

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    Thanks Camilla, for posting the information about the Norwegian situation we need to know more about what goes on in other countries. Your work is much appreciated.
     
  17. Wildcat

    Wildcat Senior Member

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    Thank you very much, Camilla, and CBS, for responding to my question re Bruun Wyller.
     
  18. Vitalic

    Vitalic Senior Member

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    Where does it actually state that CBT/GET can no longer be recommended? All I can see is that the "knowledge review" does not lend support to it, but that is different from it actually being dropped as a medical intervention for ME/CFS. It seems more like an admission that the current evidence base does not indicate that CBT/GET would be an effective treatment - but until that is translated into a change in guidelines or law then it is probably too hasty to celebrate in my opinion.
     

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