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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. Dolphin

    Dolphin Senior Member

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    (Not a recommendation)

    Free full text: http://www.jpsychores.com/article/S0022-3999(12)00282-6/fulltext


  2. Dolphin

    Dolphin Senior Member

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    This editorial refers to quite a lot of CFS papers, most or all of which I question. I don't feel inclined to go into each individually (i.e. why I have problems with them) at the moment.
    -----------
    This could be said to be the main point of the editorial:
    I find this very debatable. There could just as easily be a biological explanation for the symptoms. Uncontrolled diabetes, for example, can result in a range of bodily symptoms being affected.
    Bob, Sean and Valentijn like this.
  3. Marco

    Marco Old blackguard

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    Ah yes - multiple symptoms :

    (a) “The occurrence of multiple symptoms affecting different organ systems strongly suggests that one is hopelessly out of ones depth and unable to provide the patient with an easy and pat answer. Thankfully a psychiatric catch-all 'functional somatic syndromes' exists in which one can park difficult patients without interfering with ones golfing schedule.”

    Source : The slackers guide to medicine.

    (b) “A mitochondrial disease should be considered in the event of dysfunction of more than 2 organ systems or processes with high energy requirements”

    Source : 27. Smits BW, Smeitink JA, van Engelen BG. [Mitochondrial diseases; thinking beyond organ specialism necessary]. Ned Tijdschr Geneeskd 2008;152:2275-81.

    ;)
    biophile, GracieJ, Sea and 6 others like this.
  4. Firestormm

    Firestormm Senior Member

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  5. alex3619

    alex3619 Senior Member

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    Understanding the relevance of biomarkers to symptoms they categorize as FSS is important - both to supporting their ideas, and to disproving them. FSS cannot be taken seriously unless they can prove that the undoubted physical problems have mediating chemistry linking them to the brain. They then have the unenviable task of showing this chemistry is derived from some kind of mental disorder, even if they hide that by making dubious statements about how wrong cartesian dualism is. (I think its wrong too, but I don't believe in mental disorders, there are only brain disorders unless they can show the existence of mind as a distinct entity as a starting point for further investigation.)

    Another issue is this. If a person has a huge range of symptoms such that the qualify for several postulated FSS subtypes, is this indicative of simultaneous multiple functional somatic syndromes, or a failure to diagnose properly in the first place? Certainly its possible that this means multiple FSSs, but its far more likely in my view that they simply do not understand the patient's pathophysiology. That pathophysiology exists, it can be studied, but I think they will find that the FSSs they are studying disappear like a mirage as we get closer to understanding the biochemistry and pathohysiology of these disorders. All of a sudden appeals to mental explanations will become patently unnecessary, although I think we are at that point now and they just refuse to see it.

    There is no objective evidence that FSSs even exist. It is far more likely that diseases like IBS, ME and MCS are either real diseases, composites of real diseases, or spectrums of disease, than that FSSs exist. Some of those diseases may of course be brain diseases, and some with those diseases might have comorbid brain diseases, but those are other issues.

    Bye, Alex
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  6. Firestormm

    Firestormm Senior Member

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    Oh I expect they will argue with you Alex that FSSs are real diseases especially if the resultant research unearths evidence that they agree with. This 'mediating chemistry' you mention is to me the same thing as 'biomedical' evidence. And even if the categorisation of FSSs is considered to be mental; then if the treatment works - who cares? Yeah ok they might be fairly accused of trying to cram too many syndromes into too small a box - but if the research results in evidence and more effective treatment - again - who cares? All this faffing around with names is what gets on my tits. And anyway, I thought the DSM thingy wasn't including CFS as a somatic condition? Pretty sure they weren't anyway.
  7. user9876

    user9876 Senior Member

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    From the peice that firestormm bolded my thought was that with the failures of PACE and growing biological evidence they were giving up. But I read on and they are trying to say that the mental trauma could cause such biomarkers and I assume that they will conclude there for it does. The problem is they haven't managed to describe a disease that is triggered by severe psychological trauma - so it seems like a strange reasearch route. This just leaves me to think that they really believe their sickness beliefs hypothesis and are desparately searching
  8. user9876

    user9876 Senior Member

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    I quite like the idea of lumping and then separating according to large feature sets. Sometimes natural clasifications can be unhelpful because they look at what is affected rather than how. For example, I've heard talk that cancer should not be classified by the organ it effects but by the abnormalities in the cancer cells as this would help with choices of the right chemo therapy. I can see the same being true of an auto immune disease where the immune system cycle being effected may be more important that the organ being attacked.

    Bit complicated bit of be thinking about overlapping diseases and disease sequences below:

    Take a mechanism M which could cause a set of observable symptoms S and hence at a point that someone has the diesase they have some subset of symptoms E. Now the course of the disease may change hence E varies with time, at times when the disease is in remission then the active symptom set may be small and when the disease is bad it may be large. There may also be other disease mechanims M' which cause other potential sets of symptoms S' and the intersection between S and S' could be quite larges.

    Now if you describe a FSS in terms of the exhibited symptoms at any point (E) and label E as a disease F. Then as E fluctuates you get different symptoms so at time i you get Ei leading to a disease label Fi and then at time j you may have Ej which leads to an alternative label Fj.

    Hence if there is a disease mechanism that causes fluctuating symtoms and you use disease labels according to those symptoms then you may believe people get a sucession of different FSS diseases.

    Where there are different mechanisms with overlapping possible symptom sets and people get some subset (E) then at different times people with different disease mechanisms may appear to have common symptom sets (as observable).

    Hence we need to look not only at symptoms as are easily observerd but at the underlying biomarkers. But perhaps clustering won't be sufficient at least without taking account of temporal fluctuations.
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  9. Valentijn

    Valentijn Activity Level: 3

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    I haven't read much by White, but the sort of reasoning you refer to is quite typical of what I've seen in Wessely's biological research. There are two sorts of studies I've seen that are particularly problematic.

    In the first type people with psychiatric disorder are excluded - by the researchers' definitions, this would exclude most people with physical (somatic) symptoms. So you typically get very weak results showing not much of anything due to selecting fatigue patients with ME patients largely excluded.
    In the second type, psychiatric questionnaires relying on physical symptoms to make psychiatric diagnoses are used. If a biological abnormality is found, the possible relation of this abnormality to psychological or behavioral issues is discussed. If the result is different compared to depressed patients, then the conclusion is that the abnormality is a result of psychiatric issues, backed up by the results of the questionnaires that equate multi-system illness with psychiatric disorder. If the abnormality cannot be explained by psychiatric test results, a way is still found to conclude that it's probably secondary to non-biological causes.
    So it's pretty easy for them to find a way to avoid attributing any biological abnormalities in ME to being ultimately dependent upon biological factors. They can exclude the ME patients and find nothing in the fatigue patients, or blame abnormalities on behavioral or psychological factors. The fact that they are conducting biological studies is probably not a good sign - it usually isn't.
  10. Valentijn

    Valentijn Activity Level: 3

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    Sure they have. To the BPS school, the "disease" is fatigue. Any other symptoms are interpreted as evidence of somatizing or deconditioning.
  11. alex3619

    alex3619 Senior Member

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    Which is kind of what I was getting at. You have to understand the mechanisms to be sure of a disease category. So far as I am concerned I see cancer nomenclature changing over time ... less about "lung" cancer, more about which genes are abnormal. In this we also agree.

    Names are not important. The understanding behind the name is very important because that drives the research direction and what is discovered.

    ME can have very variable symptom sets, over time, in the same patient, I think as a result of homeostatic changes ... but thats a long debate I don't want to have here, its way off topic. However if you define by simple symptomatic clusters, then an ME patient could be expected to have several different psychiatric disorders over time, all because they look at superficial things and not underlying issues.

    Their treatments also don't work. Case closed unless they can come up with something better.

    Faith healers have lots of people recover too. So do various "healers" with various ideas on how to heal. They can cite a case here, a case there. With Laetrile, a cure for cancer, they had hundreds of cures. When the journalists went back a year later every cured patient was dead ... of cancer. Citing cures is indicative of something to be investigated, anecdotal claims do have that much value. However when they fail abysmally like in every study testing CBT/GET for CFS that uses objective markers, and quite a few that don't, the only conclusion that can be drawn is: null hypothesis demonstrated. Hence the name of my book.

    The results from CBT/GET for CFS are a fart in the dark compared to the winds of change coming from things like Rituximab and antivirals: presuming of course that these treatments can be repeatedly validated and tested in proper studies. Its the science that counts. The science so far on CBT/GET is very clear: no cure here, move on.

    Bye, Alex
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  12. alex3619

    alex3619 Senior Member

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    I have been debating on this issue for many months now. Its spread all over my posts and blogs. CBT/GET doesn't work for ME nor CFS. They have never been able to prove these FSSs exist, ever. They argue for an FSS interpretation but the theory is too nebulous to be tested.

    Biomedical evidence, biomarkers, must exist. You have one alternative to this: magic. Are they invoking magic?

    So they have to find those biomarkers. Then they have to show that there is no other alternative to mental causation. They have to track the biological abnormalities, which are massively documented in the literature, back to the brain and thought patterns within the brain. I say to them: good luck, you are going to need it by the supertanker.

    What will most likely happen, what is happening, is that the biochemistry will fold together and an entirely physical explanation will emerge. Sure in some this might involve a brain disorder, I cannot rule that out.

    There is a word for mind over matter: magic. There is a word for magic: superstition. There are words for superstition, including "myth" and even "fetish" (look it up). They spin a nice story, they just don't have any evidence that is more than vaguely suggestive. Sure they amass mountains of vaguely suggestive data ... all of which can have other interpretations. Then they assert there are no alternative explanations. My reply: MS, diabetes, RA, peptic ulcers, Lupus, etc.

    A belief in FSS can be one of two things given the data. For those who think its an hypothetical unproven diagnostic category with dubious value and needs lots more research, ok, they may claim an appropriate medical or scientific view. For those who act as though it is real, sell it as real, create public intervention on the basis it is real: this is cult-like thinking, and its trying to spread through government and pursuasive rhetoric. Show me the data! There is only rhetoric and data that can have many interpretations. There is no science that I can see, only what Karl Popper and others call nonscience.

    Now the use of CBT/GET does have many trappings of modern science. Yet they know the pitfalls. They continue to prefer to use subjective and potentially very biased measures rather than objective ones - though I am hoping adopting biomarkers might change that. Some adherents make unsubstantiated hyperbolic claims, even in medical journals. There is a name for science that has no hard data supporting it, has no validated theory, is untestable, is spread by rhetoric and unproven assertions of sweeping recoveries that the science cannot substantiate despite unblinded RCTs, looks vaguely like good science but misses the mark, and is propagated by spin and politics. The most favourable interpretation of that is pseudoscience, but there is another one I am looking at too.

    Please keep in mind that pseudosciences like alchemy and astrology were once considered hard science. Many credible scientists pursued them. Then things changed, and now no scientist worthy of the name gives credibility to either alchemy or astrology. I think this is happening to psychosomatic medicine, where "think" in this sense really means its how I interpret the accumulation of evidence. Whereas once they had a good premise, and there are still threads of good ideas here or there, most of it is a web of superstition. I don't know what the shelf life of pseudoscience is, but psychosomatic medicine as its currently practiced is definitely past its best before date, and getting closer to its use by date.

    Bye, Alex
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  13. Firestormm

    Firestormm Senior Member

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    Not just your BPS school though is it, Val? I mean I'm transcribing Prof. Newton's presentation from November and that's entitled 'Standing up for Fatigue'. It's all about what might be causing fatigue and how drugs could treat the autonomic dysfunction. Indeed, they are working towards a drug that will then be trialled.

    Edit:
  14. Valentijn

    Valentijn Activity Level: 3

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    BPS = biopsychosocial, though "bioPSYCHO(social) might be a more accurate representation. How is Newton part of that? And if not, what is the relevance of your statements? I thought the topic was some BPS psychiatrists talking about biomedical research.
  15. alex3619

    alex3619 Senior Member

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    Newton's work is at least based on verifiable physiological changes, has a postulated mechanism, and is capable of being tested (at least with drugs) using double blinded RCTs. Thats gold standard stuff, a very far cry from research based on psychosomatic medicine. I hope she gets fantastic results even if its only for a subset.
  16. Firestormm

    Firestormm Senior Member

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    You see Newton is saying at this stage in her research that there are at least two distinct groups. One whose muscles do not respond well at all to certain types of 'exercise' and one that can but if it is built up slowly. What her research is showing is that at some point it should be possible to identify those who will benefit only from tailored 'activity management' i.e. those for whom 'exercise' is not currently an option.

    This tailoring would be geared to the muscle response to exercise (and the overproduction and failure to absorb the acid). She was saying about how in her clinic 'tilt-table' exercise can be something to use in this regard - beginning with 1 second and building up - for now but that in the future it is hoped that specific drugs (i.e. not symptomatic drugs but ones aimed specifically at a cause and following clinical trials) can be produced that will enable not a return to pre-illness levels but a better ability to engage with rehabilitation-based exercise.

    Such drugs are available now but only in research. She mentions one but (as I think I said) said it was rather like using a sledgehammer to crack a nut. Activity Management should only be considered once a person's non-aerobic threshold had been assessed - she was saying - and then any 'exercise' would only be started below this level.

    Anyway. I'm almost finished with the transcript now so you'll be able to see for yourselves. It is rather good and encouraging I think. And there's more to it that what I have said above of course - far more. Just have to get my mate Simon to pdf. it for me and then I'll post it on Sunday or Monday I suspect. Consultant appointment tomorrow - joy of joys! :)
  17. alex3619

    alex3619 Senior Member

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    Firestormm, this advice for those who might respond is basically what Pacific Labs suggests, as does Klimas. That aerobic threshold is the big issue - above it we do damage to ourselves, and in many of us its very very low.

    The Lights are also finding two response groups.

    I wish a whole lot of researchers could get together and find out if their different response groups match to two clearly separable subgroups.

    Thank you for working on the transcript. :)
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  18. SilverbladeTE

    SilverbladeTE Senior Member

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    Wonder how such tripe would go down if one replaced all these "Three Letter Acronyms" with..Jew...Gypsy...Non-White...hm?
    What, did any of you think this has anything to do with rational science or aiding the sick?
    it's all about reinforcing personal beliefs and bias against "inferior people" to support the so-called "researchers" "superiority", by using pseudo-science, and well should know where the hell that leads to in such cases as the abuse of power.

    Just go back and read the ludicrous tripe the Eugenicists, phrenologists and others spouted as "science".
    And as I've oftennoted, the witch hunt madness
    "Malleus maleficarum, a novel approach to detecting ye wytches by Peter White Esquire, with due and syncere gratitudes to His Majesty and his open purse. Thys booke supported by Homebase, all your wytch bonfire supplyes at cut raytes!" :p

    Think I'll go tinker up a Cyrogenic system, get frozen, come back in a century see if these brain-turds have been condemned to the "fiction" and "crime" sections.... :alien:
  19. Marco

    Marco Old blackguard

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    A BIG CASH PRIZE (well actually major kudos and a big virtual hug) to the first person who unearths the original scientific rationale for this notion that the greater the number of symptoms the more likely you are dealing with a 'functional somatic disorder' ***

    *** Opinions, rhetorical devices, unsupported theorizing or theories that can't be falsified don't count I'm afraid!
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  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Hm,
    "The patient describes severe gastric pains, , bloating, bloody stools, dizziness...we think his subsequent death was a result of his own refusal to follow our mental health protocols, and the large hole was self inflicted!
    all this proving our statement that the more the symptoms, the more it's likely to be psychosomatic
    PS, when is our cheque due from UNUM for saving them many check ups?"
    :p

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