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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The central role of cognitive processes in the perpetuation of chronic fatigue syndrome Knoop: 2010

Discussion in 'Latest ME/CFS Research' started by lansbergen, Mar 29, 2010.

  1. lansbergen

    lansbergen Senior Member

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    http://www.jpsychores.com/article/PIIS0022399910000632

    Last edited by a moderator: Jun 9, 2014
  2. lansbergen

    lansbergen Senior Member

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    http://www.ziezon.nl/uploadedFiles/147.pdf

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  3. Dr. Yes

    Dr. Yes Shame on You

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    From the first study:

    By whom? A group of rogue psychiatrists?

    It is not classified as such by the WHO nor, for that matter, in the DSM. So basically they decided to redefine a (physical) medical illness that already has its own classification the way THEY decided to, based on no scientific evidence, or even reasoning, whatsoever. And then based their study and conclusions on that made-up premise.

    That pretty much sums up the state of psych lobby "science".
    Wildcat, mango, justy and 1 other person like this.
  4. dancer

    dancer Senior Member

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    ARGH!!!! This is so maddening.
    I was a ballet teacher/choreographer/dancer for twenty years. I LOVED the feeling of healthy fatigue... I didn't fear it or "perceive it to be negative." I loved exertion. Now I'm sick, and exertion (sometimes very little) makes me SICKER.

    It does not make me "anxious" or "worried" about "feeling tired."

    Dr. Yes, I also noticed that phrase "considered to be one of the functional somatic syndromes" and thought the same thing. Considered by whom? GRRR!
    Wildcat, Sidereal, WillowJ and 3 others like this.
  5. Dolphin

    Dolphin Senior Member

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    They ignore the fact that their own studies showed they didn't increase activity levels. They might decrease self-reported fatigue but the reduced disabilities they refer to again is self-reported so is disputable. CBT programmes often involve a lot of rest periods so the bit of benefit patients get from them might be from the rest periods, better pacing of activities (even though this isn't necessarily the explicit aim) rather than the other means generally claimed.
    Kati and Wildcat like this.
  6. biophile

    biophile Places I'd rather be.

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    Not only do they ignore the possible implications of their own research regarding activity levels, but they twist it to support the alleged role of "cognitive processes"/distortions. All they have done is influence subjective reports of fatigue by convincing patients they aren't really fatigued, and it does not seem to bother them that their patients are just as disabled as before (unless their cohort are "high functioning" patients who did not start out with much disability in the first place?). The irony of course is, remaining significantly disabled while believing you've recovered, sounds like a cognitive distortion in its own right, a disconnect from reality.
    ahimsa and Sidereal like this.
  7. biophile

    biophile Places I'd rather be.

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    Maarten, I also noticed how just like the phrases "multi-disciplined" and "integrative approach", the word "multifactorial" is used differently by biomedical proponents and biopsychosocialists. The former group list several biological aspects and sometimes a psychological component. The latter group usually just list a bunch of different psychosocial, cognitive and behavioural attributes along with their "biological" consequences (eg deconditioning).

    Nijmegen (Knoop et al) state "fatigue is perceived as something negative", "CFS is seen as an illness that is difficult to influence" and (dysfunctional) "beliefs about activity and fatigue" as if these are all unreasonable conclusions by patients. No mention whatsoever of any biological factors/components in the abstract. They do not appear to acknowledge or understand the existence of post-exertional symptom exacerbation either. I have little faith in the perspective of anyone who claims exertional symptoms are a "dysfunctional belief" or a merely consequence of misinterpreting ordinary signs of deconditioning. Even the questionable "chronic stress" model of CFS is more respectable than that.

    Although Wessely is often seen as the pinnacle of the biopsychosocial approach, he may not necessary be the most hardcore proponent and there are plenty of others who would be willing to pick up the slack even if the entire UK school retired from CFS. We may be witnessing a split of biopsychosocial schools where some will become even more extremist about patient delusions while others will incorporate more biological factors.
    WillowJ and ukxmrv like this.
  8. Esther12

    Esther12 Senior Member

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    Just some notes/thoughts on this.
    http://www.jpsychores.com/article/PIIS0022399910000632


    Yeah, thanks for that understanding. It was awesome.

    I'm not sure if there's much difference between 'understanding' that lacks a good empirical foundation and quackery.

    Awww man. That 'finding' is remarkable. Great news people - we can 'recover' without getting any better!

    This group also claimed that their CBT for cancer fatigue helped people by increasing their activity levels in the special time when activity levels were not being measured, as a way of avoiding the problem that their own data showed no increase in activity levels: http://forums.phoenixrising.me/inde...fatigue-cbt-actometers-bleijenberg-etc.24838/

    They're getting pretty close to saying 'our treatments are effective because of response bias affecting how patients report their symptoms' here. The fact is that there is evidence that patients with CFS do suffer from reduced levels of activity and fitness... if your treatments lead to them 'recovering', they need to be able to lead to increases in patients fitness and activity levels, in the same way that truly effective treatments would also lead to fewer patients claiming disability benefits or being unable to work.

    CBT and GET can be used to manipulate how patients fill in questionnaires at the end of non-blinded trials - I guess that could be counted as reducing 'disability'.

    I discussed the Fry and Martin paper here: http://forums.phoenixrising.me/inde...rental-expectations-of-their-childs-iq.22629/

    They actually found that the actometers did report a difference in activity levels between those with CFS and those without, but that the actometers counted both groups as having spent more time being active than the groups did. It seemed to me quite possible that this indicated that the actometers had a different view as to what 'activity' was compared to the people being tested, rather than this being evidence of a cognitive distortion. (To me, the study seemed weak, and I would not feel comfortable claiming that it showed anything):

    Ugh. They're just building on (neurobiological) sand. If they were comparing CFS patients to patients who suffered from chronic fatigue that was not a result of cognitive processes, maybe that would be interesting.

    Those loopy patients believing that 'fatigue' s something negative. How dysfunctional. How strange that some patients seem to see CFS as an illness with a substantial impact on life that is difficult to influence, when the evidence indicates that... hold on?!

    Also, they've gone back to dysfunctional cognitive processes that have a negative affect upon levels of activity... but earlier they were busy explaining why their effective treatments can lead to 'recovery' without increasing activity levels. They were so convincing at the time.

    What is their definition of 'fatigue' which means that it is not a negative thing that reduces people's ability to be active and perform?

    I really thought that they were going to say 'but it has of course an important basis in truth'.

    That unpublished study is presumably this one: http://forums.phoenixrising.me/inde...o-cfs-can-the-cbt-model-provide-the-map.5418/

    At the time (when I'd not read much CFS research) I said:

    I thought I'd also quote the Lloyd Hickie et al 2006 Post-infective and chronic fatigue syndromes:

    With psychosocial CFS research, it keeps getting more and more ridiculous as you become aware of the papers that they cite to try to support their claims.
    Last edited by a moderator: Jun 9, 2014
    Wildcat, Sidereal, WillowJ and 6 others like this.
  9. A.B.

    A.B. Senior Member

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    So what they're saying is their CBT placebo only works* when patients expect it to work. That's some outstanding discovery.

    * works is defined as better rating on a fatigue questionnaire.
    Wildcat, Valentijn and Cheshire like this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Makes one wonder if these psychobabblers read what they actually write because it all sounds like a big load of crap, really??
    Wildcat, WillowJ and SilverbladeTE like this.
  11. SDSue

    SDSue Florida

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    Good grief. I'd love to see these people dismantled at a public debate. Put 'em up against the top researchers in the field and let them defend their argument against clinical findings such as PETs, 2 day CPET with genetic expression data, etc etc etc.

    They are ruining lives by perpetuating lies and myths. I wonder if the blood-letters and trephiners of yore fought as hard for their job security when proven wrong.

    I'll add them to my (lengthy) list of those who owe us a public apology.
    Sidereal, mango, Valentijn and 6 others like this.
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I'd rather see them sent to a bloody gulag, with a ball and chain tied to their testicles :p
    heapsreal and Wildcat like this.
  13. Sean

    Sean Senior Member

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    He he he…

    They really are tying themselves up in increasingly ludicrous and self-strangling cognitive knots to avoid facing the appalling truth about their precious pet theory, and its consequences for patients.

    "It is difficult to get a man to understand something, when his salary depends upon his not understanding it!"

    His salary, or power, status, ego, etc.

    http://en.wikiquote.org/wiki/Upton_Sinclair

    --------------

    Silverblade, you are getting soft in your old age. I would attach a rabid doberman to the other end of the chain. :woot:
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  14. chipmunk1

    chipmunk1 Senior Member

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    what a load of horsecrap. They are more in need of treatment than we are. I almost feel sorry for them.


    What's next the CBT cancer cure? If you die it's because you didn't want to live enough..

    Oh what a genius insight. Who would have thought that? Do you need a Phd to draw such brilliant conclusions?

    Fatigue is seen as something that reduces the ability to perform?

    Oh really, having a brain disease affects cognitive processes? Brilliant!

    How come? We all should be fatigued. It's cool. Everyone should experience it.

    Reading and comprehension is not the same thing.

    I suspect they read (at least sometimes). I doubt they understand the nonsense they're writing.
    At least i hope for them that they don't otherwise we would have to assume they are even more deranged than we thought.
    Last edited: Jun 9, 2014
  15. Aileen

    Aileen Senior Member

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    No silly, you aren't really dead, you just think you are!! And all your grieving friends and family? How about family group CBT to get rid of those "faulty death beliefs". Curing the world's problems are so simple. o_O

    Frightening how a bunch of patients with brain fog can think more clearly than these people! :eek:
  16. alex3619

    alex3619 Senior Member

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    Were the psychobabblers right about tuberculosis?

    Diabetes?

    Multiple sclerosis?

    Rheumatoid arthritis?

    Lupus?

    Gastric ulcers?

    NO.

    Yet somehow they are right about CFS, ME, FM, MCS, IBS ... the list goes on. Despite hard evidence they are wrong.

    To diagnose a functional somatic disorder, though now this seems to be different under DSM-V, you need to have no physical cause that can explain the symptoms. Yet we have exactly that in ME and strictly defined CFS. So in a flash of reason and evidence yet another of their claims is shown to be wrong.


    When have they ever been proven to be right? NEVER. They just claim it, again and again, ad nauseum.

    Yet I got a comment translated from Danish on Co-Cure recently, here is one claim that cracks me up:

    http://www.dagensmedicin.dk/opinion/debat/stig-gerdes-er-med-til-at-optrappe-konflikter/
    http://translate.google.com/transla...stig-gerdes-er-med-til-at-optrappe-konflikter
    ... and ...

    This is classic!

    I have never seen so many logical fallacies and unsubstantiable claims made in one document since the PACE trial was first published. This will be in my book, should I ever get to write it, broken down and analyzed line by line.

    You get the impression there are thousands of papers substantiating their claims. I mean, its published in major journals! It must be true! In other places I have seen comments to the effect that critics don't understand the literature, that thousands of papers support their positions.

    I have one question for them: NAME ONE!?

    If they are ever game to name one, then the fun begins ... I would be very interested to read one that is actually good science, and which is replicated independently, and has substantive objective evidence etc. In the meantime if they are game enough to name one, we can easily disprove their claim.
    Last edited: Jun 9, 2014
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  17. Cheshire

    Cheshire Senior Member

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    These are also worrying:

    I would be pleased to have Karina's parents opinion about that statement...

    Ethical lessons given by Per Fink are priceless...

    What a great proof of denial!! No man is more blind than the man who refuses to see...

    And the usual mourn: these bad patient activist (nearly terrorists) that are driving our poor patients in the wrong direction, patients are afraid of the stigma attached to mental illness (and not because CBT doesn't cure them)
    Wildcat, SDSue and alex3619 like this.
  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Alex
    the fact is, if these scumbags had been born in a different country, they'd be cutting infant girls genitals off to keep them "pure for their own good"
    Same crap.
  19. WillowJ

    WillowJ Senior Member

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    Got to wonder if the publishing journals actually read the papers.

    Really?
    And then even though they are "recovered" they revert to inactivity because.... um..... ?????
    Broken model here.
    Dolphin, Wildcat, heapsreal and 2 others like this.
  20. Snow Leopard

    Snow Leopard Senior Member

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    The central role of double speak in publishing an opinion paper in the field of CFS...
    biophile likes this.

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