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Functional somatic syndromes may be either “polysyndromic” or “monosyndromic” - Peter Denton White

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 3, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    The non-scientific rationale is that functional somatic disorder is defined as involving a variety of physical complaints without known cause. It's really just a definition. And the definition for CFS overlaps somewhat. So some non-scientists take this as proof that symptoms of CFS can be taken as evidence for having a psychosomatic disorder.

    But to sum up the entirety of the BPS model for ME, and perhaps psychosomatic medicine as well, I present this quote:
     
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  2. PhoenixDown

    PhoenixDown Senior Member

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    What about getting ideas in to people's heads that these patients are irrationally scared of exercise and that no damage comes to them from exercise? What about getting ideas in to people's heads that these patient's symptoms are generated by unhappyness, fulfilment, or deluded beliefs? That's why people care.

    What effective treatment would that be? What about the down side of using these labels? Would changing the label prevent this research?

    What gets on my tits, are people who keep up this tired old charade of pretending labels can't harm the way we treat each other.
     
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  3. SilverbladeTE

    SilverbladeTE Senior Member

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    in other word
    THEY ARE MAKING SHIT UP!
    omfg...
     
  4. peggy-sue

    peggy-sue

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    BPS = British Psychololgical Society, not "biopsychosocial".
    (what is "biopsychosocial" anyway - a new kind of washing powder?)
     
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  5. Simon

    Simon

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    Building on sand (again)
    It lookd to me like the two studies Peter White cites in his editorial and are either very or substantially flawed - which makes his intepretation of them rather irrelevant. There were 2 studies [quotes from Peter White's editorial]:

    Study 1: Clustering of FSS
    So, they recrutied a bunch of people online and relied solely on self-report: most reported they didn't have a current FSS... "GAME OVER".
    But, while I'm here: why didn't they also ask participants if they also had physical illnesses? Perhaps said FSS are actually misdiagnosed physical illnesses, and there may be a correlation with other physical illnesses. Such a question would, at least, provide some kind of reference point for the levels of additional FSS.

    Study 2: Retrospective study of previous FSS in women with Interstitial Cystisis
    This looks like a more substantial study, though again looked only at other presumed FSS and not at any correlation with other physical illnesses. From our prespective, it says nothing about CFS either.

    Studies not done
    Surely, when dealing with something as vague and ill-defined as FSS, what's needed are detailed studies trying to understand what is going on in any specific FSS, teasing out any sub-groups?

    Many, many physical illnesses have a broad range of symptoms (eg pain, fatigue, concentration problems)- which is precisely why CFS is so hard to diagnose - as are many chronic illnesses.

    Relying on questionnaires to look for similarities between presumed FSS, with little or no medical examination to verify the details strikes me as looking at the problem from the wrong end of the telescope. Contrast this with Ian Lipkin's approach of painstakingly assembling a large and carefully defined group of CFS patients and matched controls, then looking in detail at the pathophysiology. He might draw a blank, but from such robust work it will probably be possible to draw some robust conclusions. Which is a very different scenario to this kind of rather meaningless speculation about FSS.
     
  6. Sean

    Sean Senior Member

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    Then why are they so damn certain about their precious conclusions?

    'Common sense' is nothing more than contemporary collective ignorance and prejudice.
     
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  7. alex3619

    alex3619 Senior Member

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    "Common sense", to me, is a rhetorical device to appeal to general understanding. Its like someone is asking: is there anything obviously wrong with this? No. Then it must be right, that's common sense.

    This is of course a well hidden fallacy.

    Another other issue is an appeal to intuition, although this is mostly just restating my first point. Most of the brain and its functions is intuitive. The rational part of the brain is superimposed on that. When an appeal is made to common sense, I think its often an appeal to intuitive understanding. Its an attempt to bypass reason, either deliberately or just because they didn't use reason to form a better argument.

    That intuitive understanding is subject to experience. When the public has had decades of information thrown at them on psychiatric illnesses, "all in your head" and other issues, and when the preponderance of media outlets in the UK (for UK audiences) is pro-psychogenic and portreying disability claimants as scavengers, then common sense is to believe psychogenic and other claims. Intuition is uncritical experience. Its not reason.

    Bye, Alex
     
  8. Firestormm

    Firestormm Guest

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    Thanks Simon. Does not White's comment (shown again below) point to future study direction that will indeed 'tease out any sub-groups'?

    I would suggest that - whilst it has taken an inordinate amount of time and effort and money - White and others might finally be getting this message of a need to move beyond collectively grouping clusters of symptoms and over-relying on determining what's what from a subjective point of view.

    If for example, Newton's work and that of the other investigators who received funding from the MRC last year, reveal sub-groups based on physiological evidence, that indicate specific tests and future drug developments or refine the way in which current treatments are rather arbitrarily applied - then White and colleagues will indeed be in agreement (less likely to overly criticise).

    To what extent the past reliance on the assessment of and grouping of common symptoms was necessary is obviously subject to much debate. But perhaps 'these people' are finally getting it and the future is more encouraging now?
     
  9. Valentijn

    Valentijn Activity Level: 3

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    And while that is certainly possible, past experience shows that psych groups conducting biological CFS research generally either take steps to make sure few ME patients are included, or they attribute biological abnormalities to psychiatric or behavioral factors.

    I think the odds are quite low that any BPS researcher will do a 180 and contradict their sweeping statements of somatization and behavioral problems. Too much ego involved, especially since their previous generalizations had no evidence base, but were based on their assumptions about us. They'll look like nasty idiots if/when those assumptions are disproven.
     
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  10. taniaaust1

    taniaaust1

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    While trying to find a forum White may of recruited from for his study.. I noticed CFS being mentioned as a functional stomatic syndrome in the first thread I looked at

    I dont know if anyone feels like doing some advocacy..but I feel that some is needed at the following site (thou the post is a month old) in the following thread as an old scientific publication has been put up which says

    and goes on to say
    http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=7863
    Hopefully someone has enough energy to sign up there and post on that thread that CFS isnt at all known as a functional somatic syndrome at all and the author of that study was wrong. Also in the replies there one has posted​


    Maybe someone feels like pming him about what abnormal tests they now have due to our suspected "psychogenic" condition etc. Does psychogenic conditions give low blood pressure to most of a certain patient group?​

    If we targeted such sites to do ME/CFS advocacy too.. I wonder how many would suddenly realise that they actually do have CFS? I know many can go into denial at having a very real illness..my sister has done that. I bet there is some people at those sites.. helping some to think their illness whether CFS or another.. is just functional somatic syndrome..​
     
  11. Valentijn

    Valentijn Activity Level: 3

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    I doubt it would do much good. They believe that they have psychosomatic pain, and if they're on that forum then they probably believe anything with unknown etiological cause is psychosomatic. It's also highly unlikely that a challenge to their belief system would be allowed to remain - the description of the site explicitly states that
    Anything challenging that would likely be deleted.


     
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    yes, blame the victim what a lovely age old story that is being used still: women deserve to be raped for showing flesh, immigrants deserve driven out for stealing jobs...ME patients make themselves ill by thinking they are ill and not accepting our Godly powers of Bullshit Vodoo psychiatry Uber-Telepathy That Can Make them Right, Turn Them Straight and away from their Queer Ungodliness of Non-Acceptance! Praise be to Freud!
    *bunch of psychs sprinkle the Holy Incense of bovine merde and rattle the collection tin* :rolleyes:
    yadda yadda...small minded, evil,
    SCUMBAGS!

    Candygram for Mr White, Wessely et al!
    http://www.sophiaandme.org.uk/legal/l1.jpg
     
  13. Simon

    Simon

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    I wish this were true, but have my doubts.

    It's worth noting that tracking down biomarkers in ANY disease in incredibly challenging and to date no one has managed it in CFS. The work done by psychiatrists to date has been small-scale and unconvinving. For instance, lower levels of urinary cortisol have been found in a couple of studies but a another paper by the same authors again found lower free urinary cortisol levels, but noted this wasn't corroborated by correspondingly lower levels of cortisol metabolites.There was no follow-up of this lack of corroboration. And no studies have even tried to show if the changes are specific to CFS or just general markers of ill-health.

    So if you are going to track down pathophysiological changes specific to CFS - a huge challenge - then I think it's really helpful to have researchers whose heart is in itand who have a strong track record in biomedical research. But I'd be delighted to be proved wrong on this.
     
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  14. taniaaust1

    taniaaust1

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    One thou has been found (or maybe even two) .. thing is that research was ignored thou it can distinguish ME/CFS people from healthies.
     
  15. alex3619

    alex3619 Senior Member

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    I am reasonably sure CFS and possibly even ME will have no diagnostic biomarkers. This is because they are probably not one illness. I strongly suspect we will get diagnostic biomarker subgroups. In this sense if Peter White is serious then its the right way to go. I just doubt that psychiatrists are the best to investigate biomarkers, just as they have failed to meet gold standard research requirements in exercise physiology for a decade now.
     
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  16. Simon

    Simon

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    Have any been independently validated? Only ones I'm aware of have been small studies and crucially set the key healthy/CFS thresholds post-hoc, after sight of the data and to maximise effectiveness for their particular sample. And that doesn't make a biomarker. Closest I'm aware of is reduced NK cell cytotoxicity in CFS patients vs healthy controls, but this was only a bioabnormality, with substantial overlap between patients and controls.
     
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  17. Firestormm

    Firestormm Guest

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    I am not going to disagree with you here Val, but I will say that in my own (and others') experience, ME or CFS has traditionally been treated largely through the administration of one (or as in my case several) antidepressants (and of course the CBT and GET and Activity Management and symptomatic treatments).

    If 'these psychiatrists' through their own endeavours to sub-categorise and explore biological abnormalities can at the very very least improve upon the general meme of 'got ME have a general anti-depressant' then that would be progress. That said I am of course aware that anti-depressants generally possess far more properties that being an aide to depression.

    My point I suppose - in this thread - is this. If you regard recent reported comments from the notable few psychiatrists etc. attracted to our condition as being even slightly reflective of 'change' then I think as we see more evidence produced of these biological reasons for our symptoms and/or (long shot) overall condition - these notables will back them.

    Even if you (not you personally) are not 100% in agreement with the MRC funding allocations for example, you must surely acknowledge a change in direction and that this funding (in whole or in part) could result in the support of more than one biological cause for more than one symptom. We may even see specific targeted treatment of the pharmacological variety resulting from these studies.

    Throw MRC initiatives together with all the private research taking place around the globe - and - dare I say it? Yes I think I will: The future has never looked more positive. And like Ampligen I would be more than willing to eat my shorts should this not prove to be so.*

    (*I bet against the approval from the committee and so my shorts are still intact - though this is unfortunate of course for those who were hoping the company's evidence would prove convincing. Still there's always the February meeting and even then of course the case is not closed.).
     
  18. Valentijn

    Valentijn Activity Level: 3

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    Sure. Let's take a look at a very recent Wessely study to see how it usually goes when psychs conduct biomedical research. The following excerpts are from Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522 :
    They do not question the "pop an antidepressant and have some CBT" theory. If CBT doesn't work and there's a correlation with a physiological characteristic, they find a way to tie it in with their pre-existing theory. The accuracy of the theory is never challenged, nor its general applicability.

    I don't see that ever changing. To be perfectly honest, I think there could be 100% incontrovertible proof of solely physiological causation and perpetuation of all ME/CFS symptoms, and they'd still find a way to conclude CBT is an essential part of the cure.
     
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  19. alex3619

    alex3619 Senior Member

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    There were comments to that effect Valentijn in White's Biopsychosocial Medicine with respect to peptic ulcers. While they are associated with Helicobacter pylori, apparently, something must still sustain the damage. It seems that back in, what?, 2005 or so, they still did not accept H. pylori as the sole cause. There must always be cofactors. Indeed there are additional issues, as I blogged about on this topic, and some of them are social factors which influence risk of pathogen spread, but this does not alter causation.
     
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  20. Dolphin

    Dolphin Senior Member

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    I don't think Peter White is that serious about properly subgrouping in CFS. His attitude is one treatment for all with CFS (graded exercise therapy). Subgrouping in my mind should be more meaningful. An example of his subgrouping was to have obese and non-obese CFS patients - not proper subgrouping of CFS.

    He has argued against FSS. But I think that's at least partly but possibly mainly because he doesn't want to have to deal with other symptoms. For example, in the Barts service submission (where he's based and it looked like he wrote it - he certainly would have had to approve it), they argued that bowel symptoms weren't part of ME. Similarly fatigue has to be the main symptom to see him (some people have more pain).
     
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