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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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From Nijmegen new one

Discussion in 'Latest ME/CFS Research' started by lansbergen, May 24, 2010.

  1. lansbergen

    lansbergen Senior Member

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    http://content.karger.com

    Psychother Psychosom 2010;79:249-256 (DOI: 10.1159/000315130)

    Vol. 79, No. 4, 2010

    Possible Detrimental Effects of Cognitive Behaviour Therapy for Chronic Fatigue Syndrome
    Marianne J. Heinsa, Hans Knoopa, Judith B. Prinsb, Maja Stulemeijerd, Jos W.M. van der Meerc, Gijs Bleijenberga

    aExpert Centre Chronic Fatigue and Departments of
    bMedical Psychology and
    cInternal Medicine, Radboud University Nijmegen Medical Centre, Nijmegen, and
    dViecurie Medical Centre, Venlo, The Netherlands

    Abstract

    Background: Cognitive behaviour therapy (CBT) for chronic fatigue syndrome (CFS) can decrease the level of fatigue and disabilities, but it has been suggested that during therapy some patients experience a deterioration of their symptoms rather than an improvement. The aim of this study is to examine the frequency and severity of symptom deterioration during CBT for CFS. Methods: Data from 3 randomised controlled trials on CBT for CFS were pooled and reanalysed. Symptom deterioration during the trial was rated by patients and measured as deterioration in fatigue, pain, functional impairment and psychological distress. Both the frequency and severity of deterioration in these domains were compared between the patients receiving CBT and those in the control group. Predictors of symptom deterioration were identified by comparing their means in patients with and without an increase in fatigue. Statistically significant predictors were then combined in a logistic regression model. Results: The frequency of symptom deterioration varied from 2 to 12% in patients receiving CBT and from 7 to 17% in the control group. None of the measures showed a significantly higher frequency of symptom deterioration in the CBT group. The severity of deterioration was also comparable in the CBT and in the control group. No predictors of symptom deterioration specific to CBT were found. Conclusion: Patients receiving CBT do not experience more frequent or more severe symptom deterioration than untreated patients. The reported deterioration during CBT seems to reflect the natural variation in symptoms. Thus, CBT is not only a helpful, but also a safe treatment for CFS.

    Copyright 2009 S. Karger AG, Basel
  2. bullybeef

    bullybeef Senior Member

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    North West, England, UK
    They don't mention GET though, do they?! The problem will have here is, CBT is used for many terminal diseases too, so they have an excuse to impose this treatment on pwme.
  3. lansbergen

    lansbergen Senior Member

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    http://www.nkcv.org/

    They write about CBT: De patint kiest een lichamelijke activiteit (meestal lopen of fietsen) die hij (ten minste) 2 maal daags uitvoert. Elke volgende dag breidt hij deze activiteit geleidelijk en systematisch uit.

    The patient chooses a physical activity ( useally walking or cycling) who he carries out at least twice a day.

    Every next day he extends this activity gradual and systematic.
  4. bullybeef

    bullybeef Senior Member

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    So, how can they use CBT disguised as GET???

    The things they will do to prove their point; the mind boggles. When I was first diagnosed, and before I knew the reality of ME etc, I was sent on a GET course.

    I did enjoy the discussions, and it was highly interesting listening to the therapists (I believe there were just physiotherapists) They really believed in everything they were saying. They were so brainwashed, it was frightening. They were like robots, and to be very fair, they were incredibly empathic, almost as though they were handpicked because they were maybe very gullible, or more likely, naive. But when I asked them if ME was progressive, one therapist replied, "Yes!" I was so shocked, I didn't ask what he meant until the following week. He then said, "ME is progressive without treatment!" What treatment? I didn’t how the gumption then to understand the meaning of that question at the time. I took part in the exercise treatment, because, like many of us, I once enjoyed most sports, and always pushed myself to the limit. Needless to say, I didn't respond. I couldn't understand how a 60 year old chap in my group was responding to the exercise, and yet it was making me feel worse.

    After the sessions were rapping up, I asked the therapist if the our course paperwork goes back to our consultants? He simply replied, no! So, where does all that paperwork go to? And why has further treatment ceased? My guess is this:

    They send a random group of newly diagnosed CFS patients on a GET course. During the weeks, the therapists scribble down the ones that respond to the exercise therapy, and those reports are sent back to someone like Wessely. Meanwhile, the therapists leave the reports of the patients whom don’t respond to the treatment blank, or maybe ‘unresponsive‘. The statistics are sent off to show the majority of CFS patients respond to GET, whilst the ones that don’t are sent to the scrapheap, and ignored. Simples.

    My belief is that they [the psychoanalysers) believe that if they can’t cure us, they ignore us. They may even have some belief that we are attention seekers, and if they ignore us, eventually we will give up, and make a miraculous recovery. Whatever happens, we are not part of their plans, and the people that did respond to GET, most likely, didn’t have ME in the first place.
  5. lansbergen

    lansbergen Senior Member

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    They are masters in juggling with words and figures
  6. dsdmom

    dsdmom Senior Member

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    This is what gets me - how exactly do they jump from it not being detrimental to helpful & safe? Oh, it doesn't kill them, therefore it's an amazing therapy and very successful. WTF?
  7. jewel

    jewel Senior Member

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    My thoughts exactly, dsdmom. Now we know the new definition of "helpful."
  8. Dolphin

    Dolphin Senior Member

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    Of course, the big question is whether the patients actually adhered to the programme.

    They reviewed three of their studies earlier this year and on average, there was no change in step count over the controls.

    So we don't know if it is safe if the patients actually did what they were told to do - in other words, we don't really know if the treatment was safe. It's a bit like giving people a drug to take every day but they only take it every few days - we don't know if taking it every day is safe. And even that's not the best example: maybe a better example would be - giving people a drug to take every day but they never take it! It doesn't tell you anything about its safety.

    I'm very interested in this area, as some people will know - I have had some letters published in journals (incl. when they claimed that CBT led to improvements in grey matter volume - they didn't have a CFS control group so I challenged them). I'm hoping a copy will be brought by the stork or will arrive in my inbox. :Retro wink:
  9. Rivotril

    Rivotril Senior Member

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    here the press release on the Nijmegen site, placed today:

    http://www.umcn.nl/OverUMCstRadboud...elingtegenchronischevermoeidheidisveilig.aspx

    Behandeling tegen chronische vermoeidheid is veilig
    De cognitieve gedragstherapie die ingezet wordt tegen het chronisch vermoeidheidssyndroom (CVS) is voor patinten niet schadelijk. Dit blijkt uit een studie van het Kenniscentrum Chronische Vermoeidheid van het UMC St Radboud, gepubliceerd op de website van het wetenschappelijk tijdschrift Psychotherapy and Psychosomatics.

    Zeventig procent van de CVS-patinten heeft baat bij het volgen van een cognitieve gedragstherapie. Zij voelen zich beter en hebben minder last van de vermoeidheid en van beperkingen in het dagelijks functioneren. Sommige patinten genezen zelfs volledig. De overige patinten hebben geen baat bij deze therapie. Een enkeling ervaart zelfs een terugval. Betekent dit laatste, dat cognitieve gedragstherapie voor sommige CVS-patinten schadelijk is?

    Om deze vraag te kunnen beantwoorden deed het Nijmeegs Kenniscentrum Chronische Vermoeidheid van het UMC St Radboud in Nijmegen een groot onderzoek bij meer dan vijfhonderd patinten met CVS. Een deel van hen volgde de cognitieve gedragstherapie, de rest niet. In beide groepen bleken zich patinten te bevinden van wie de toestand verslechterde. Bij patinten die cognitieve gedragstherapie volgden was dat niet vaker het geval dan bij degenen die niet behandeld werden. De terugval houdt dus geen verband met de therapie.

    Het is bekend dat de ernst van het chronisch vermoeidheidssyndroom in de loop der tijd varieert. Dat wil zeggen, bij de patint wisselen slechte en minder slechte perioden elkaar af. Dit kan verklaren waarom sommige patinten, onafhankelijk van de therapie, een terugval van hun ziekte rapporteren.

    De conclusie van de onderzoekers is, dat cognitieve gedragstherapie de patint geen schade berokkent en dat het dus niet alleen een effectieve, maar ook een veilige behandeling bij CVS is.

    Disclaimer 2010 UMC St Radboud, alle rechten voorbehouden.
  10. Rivotril

    Rivotril Senior Member

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    Translated in English:

    Treatment for chronic fatigue is safe

    25 may 2010

    Cognitive behavior therapy which is used against chronic fatigue syndrome (CFS) is not harmful for patients. This According to a study by the Centre Chronic Fatigue of the UMC St Radboud, published on the website of the scientific journal Psychotherapy and Psychosomatic.

    Seventy percent of CFS patients will benefit from attending a cognitive behavioral therapy. They feel better and have less burden of fatigue and limitations in daily functioning. Some people recover even completely. The remaining patients did not benefit from this therapy. A few people even experience a relapse. Does the latter mean, that cognitive behavioral therapy for some CFS is harmful?

    To answer this question, the Nijmegen Centre Chronic Fatigue of the UMC St Radboud in Nijmegen, did a large survey of more than five hundred patients with CFS. Some of them followed the cognitive behavioral therapy, others didnt. In both groups there were patients whose condition deteriorated.
    In patients receiving CBT this was not more often the case than in the patients that were not treated. This means that the decline is not connected with the therapy.

    It is known that the severity of chronic fatigue varies over time. That means a patient exchanges poor and less poor periods. This may explain why some patients, independent of therapy, were reporting a relapse of their disease .

    The conclusion of the researchers is that cognitive behavioral therapy doest harm the patient and that it is not onlyan effective, but also a safe treatment for CFS.


    Disclaimer 2010 UMC St Radboud, all rights reserved.
  11. Rivotril

    Rivotril Senior Member

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    Are they already starting damage control, afraid for later claims for ignoring all biomedical clues and their XMRV denial ?

    What a great science, proving that something is not physically harmful for patients without doing any physical study on them ???!!!!

    And about the value of this kind of research..if they found out that it was harmful..what would they have done then? quit their jobs, quit their business, and telling weasly that he should retire too???

    this is like someone whose entire business, status and money is about selling apples, is going to do a study about how harmful apples are for people!

    you know the answer of the study even before it has even started yet :)
  12. Dolphin

    Dolphin Senior Member

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    Nice analogy.

    Yes. And there may be other data from other studies they decided they wouldn't highlight/use in this study.

    Thanks for the translation.

    As I've said before, their claims that CBT leads to recovery are a joke as the definition of recovery is so bad.
  13. Doogle

    Doogle Senior Member

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    Every time I see this group I discount their conclusions because they have previously redefined CFS as simple fatigue in their CBT studies .

    Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial, Judith B Prins, Gijs Bleijenberg, Ellen Bazelm Philip Spinhoven, Jos W M van der Meer, Lancet 2001; 357: 84147

    "Patients were eligible for the study if they met the US Centers for Disease Control and Prevention criteria for CFS,(Fukada 1994) with the exception of the criterion requiring four of eight additional symptoms to be present."

    Pure manipulation and dishonesty.
  14. PoetInSF

    PoetInSF Senior Member

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    SF
    The treatment in this case is CBT, not GET. And once again it's worth noting that it says absolutely nothing about GET one way or another. The underlying study already showed that CBT was effective and the improvement was not mediated by increased activity. So, the only thing this study says is, when taken together with the other results, the patients showed improvement without adverse effect when given CBT.
  15. PoetInSF

    PoetInSF Senior Member

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    SF
    Let's put this in perspective for the sake of civility discussion going on another thread. When Mikovitz or Peterson gets criticized for what they claim/do, people get bent out of shape. Yet, it goes without fuss when someone calls a valid study a pure manipulation and dishonesty. This goes to the heart of this forums credibility. Is this a neutral place that any criticisms about any study/claim/public figure are allowed? Or, does the civility only applies when it is against viralist agenda?
  16. Dolphin

    Dolphin Senior Member

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    Do you know what the B in CBT stands for? Behaviour (or Behavioural - different people use different terms). The treatment is supposed to change patients' behaviour by getting them to be more active. As has been pointed out to you before and also in this thread, but maybe you are above reading the thread:

    Here's a sample quote if you don't trust translations:

    Where do they prove this happens i.e. where do they prove treatment adherence?

    What the study showed is the patients reported reduced fatigue on questionnaires. The Wiborg review showed the patients weren't any more active and remained at a low level of activity. So the value of the self-reported improvements (which might simply be conditioned responses to please a CBT therapist) is very questionnable.
  17. Dolphin

    Dolphin Senior Member

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    Yes, this is very frustrating. This often gets quoted in reviews, meta-analyses, etc as being on Fukuda patients.
  18. _Kim_

    _Kim_ Guest

    I thought you said DORK and so I showed up with article in hand.

    I put a copy in the Library: Heins 2010 - Possible Detrimental Effects of CBT for CFS
  19. shrewsbury

    shrewsbury member

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  20. lansbergen

    lansbergen Senior Member

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    In the paper under introduction they say: During CBT, patients are encouraged to gradually increase their daily activity.

    Also to be taken in consideration.

    On their website they write: Patinten die bezig zijn met een beroepsprocedure rond het verkrijgen van een uitkering of voorziening komen pas in aanmerking voor CGT als deze procedure is afgerond. Patinten bij wie andere problematiek in sterke mate aanwezig is, kan bijvoorbeeld geadviseerd worden eerst voor deze problematiek behandeling te zoeken.

    Patients engaged in an appeal procedure of obtaining a benefit or facility will not qualify for CGT until this procedure is completed.

    Patients who have other problems to a considerable extent could be advised to first seek treatment for this problems.

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