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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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SOMATISATION, DEPRESSION AND ME

Discussion in 'Action Alerts and Advocacy' started by Marco, Feb 10, 2012.

  1. Marco

    Marco Old blackguard

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    The point I was hoping to make is that it is entirely possible to develop models that may adequately explain all the symptoms of ME/CFS and other 'medically unexplained diseases/syndromes' and off the top of my head Maes, Broderick, Klimas, Jason, Myhill and our own RichvanK have attempted just this.

    The problem is that the medical profession (or perhaps more accurately the authorities that regulate the medical profession) has been unreceptive, preferring instead to off -load 'difficult' patients to the BPS crowd without even requiring a plausible model from them beyond vague references to 'childhood trauma' or 'coping mechanisms'.

    What I'd hoped to show in starting this thread was that the last thing that a diagnosis of psychosomatic entails is evidence.
     
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  2. czecher

    czecher

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    I can only respond to this post as someone who is in the midst of trying to obtain LTD coverage through my plan at work. The denial letters state that there is no objective evidence, only subjective evidence, of problems that would affect my ability to work. I have felt during the last 5 years that my problems were a result of my body's poor ability to produce, or use energy produced inefficiently; ( i.e. a mitochondrial problem). Yet, my family doctor and the rheumatologist I was referred to, keep focusing on my depression, instead of my other symptoms. It is very frustrating, as I worked in a lab setting, where I am all too aware that medicine does not have the answers to everything. I prefer to believe that a measurable abnormality will be developed at some point for CFS/ME patients. Until then, I/we will be subjected to the humiliation of sitting in our doctor's office, only to once again be told that nothing abnormal can be found in the tests they have run, and therefore it must be somatic/depression related.
     
  3. Enid

    Enid Senior Member

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    Marco @ 21 - yes of course.
     
  4. alex3619

    alex3619 Senior Member

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    Hi Marco, as I have said before the current models, and known physiology, probably explain nearly all symptoms. The BPS crowd are interested in one: fatigue. Even at explaining that they fail. Even at treating that they fail.

    I think models that do adequately explain us, symptomatically, already exist. They are also merging. In time there will be no place for the BPS proponents to hide: their theories will be shown totally inadequate. The problem is that it is taking too long, millions are being harmed while we wait. This is not acceptable.

    The big problem we have, despite multiple theories of causality, is that causation is not proven for any of them. The second problem is there is no accepted diagnostic tests, though quite a few are being worked on.

    The multidimensional mapping was in the context of all psychosomatic illnesses, not just ME. It was, so far as I was concerned, also in the context of all the data, not just fatigue. The BPS crowd want to claim a whole lot of illnesses are the same. I am not even convinced all ME patients have the same thing.

    czecher, the problem as I see it is that there are currently many abnormal findings. These however are usually tests carried out by research labs or specialist labs, which therefore are not covered by insurance. In the UK many of these tests are denied to CFS and ME patients under NICE guidelines. To compound this, if you have the tests you will probably get hit by one of two responses. The first is: I don't know what this test means, its irrelevant. The second is: this is a non-standard test. We do not recognize it.

    Non-standard tests are winning disability for people in the USA but I don't know how many of them have had to go to court. Natural killer cell dysfuntion implies an aquired immune deficit (this refers both to cytotoxic capacity and bright cell to dim cell ratio). Mitochondrial dysfunction implies brain and heart dysfunctions. Repeat exercise testing showing markedly reduced capacity on repeat testing implies that effort cannot ever be sustained. High levels of serum LPS implies immunological compromise. High levels of oxidative stress imply multisystem problems. The list goes on and on. We even have a test now that is 92% diagnostic for females, but most doctors wont know it exists, and many who do don't know where to send a patient to be tested. (Tip: if you are near Harvard University, go ask Komaroff.) A list of demonstrated nutrient deficiencies includes: vitamin E, Co-enzyme Q10, L-carnitine, potassium. If you expand that to important biochemicals there are many more, including glutathione. If you add those that are probably sub-optimal it becomes a very long list.

    The problem is not that there are not physical abnormalities that are considered pathological in other disorders in which they occur: there are but for some reason they are not considered pathological in ME or CFS. The problem is that no definitive theory has been accepted that explains them. We are presumed guilty until proven innocent: we are presumed well till we can be proven ill.

    Bye, Alex
     
  5. Enid

    Enid Senior Member

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    alex - there are no "models" - gee I wish I had a science instead of arts training - I am ill over ten years at least, and still fall down though hopefully do not pass out again. Sick of models when one presents to the ignorant medical profession (awaiting the big call up to the reality of this illness) - the suffering they have willingly embraced from pseudo science.
     
  6. alex3619

    alex3619 Senior Member

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    Hi Enid, models of oxidative stress, mitochondrial dysfunction, and immunological dysfunction exist. The Methylation explanations are a model. A model does not mean it is proven, accepted or even real however. To do that takes a lot of science over a lot of time, then a lot of explaining in this case to doctors who don't have much interest. We will also have to convince media, government, regulators, insurance companies and pharmaceutical companies. Its a long road.

    Other models include that of persistent viral infection, or distorted immunological function. These are not so well integrated with each other yet, and many are directly competing with each other I think. For example, it is not easy to reconcile a pathological model with an autoimmune model, this requires a lot of research. Neurological models I have not discussed here, but they overlap with metabolic and pathogen models fairly well, they are just not well developed as integrated models just yet. It will happen.

    Treating patients based on a viral model for example can achieve results I think are an order of magnitude better than CBT/GET. Over three times as many patients respond, with over three times the degree of response. Thats a whole order of magnitude. Yet these people are operating within standard science, they are careful, and the research advances methodically though without adequate budgets.

    The Myhil or Pall protocols for example are based on a model of mitochondrial dysfunction or nitrosative and oxidative stress respectively. They have overlap, and together overlap with the methylation model.

    To me a model is a collection of hypotheses that interact to explain a wider set of data than a simple hypothesis covers. We are seeing one or more larger models emerge I think, and I suspect it will partly explain many more so-called unexplained syndromes than just CFS or ME. What is needed over time is a better integration of metabolic models and immunological models. That is where the models are weak currently. This takes time. Meanwhile the BPS "model" that includes CBT/GET is harming many people and costing society large sums of money without delivering cures. That is why I want to challenge them.

    Psychosomatic medicine however has historically been called non-science (Karl Popper). Doctors are still taught about psychosomatic illnesses including hysteria. I have never seen evidence that any of these are real. Sure we can see examples of mass panic ... but mass hysteria? Hysteria is argued, I think (and I could be wrong) as a kind of entrenched outcome of mass panic, just as post traumatic stress is an outcome of trauma. I still see no compelling reason to believe in mass hysteria, nor any psychosomatic illness in the modern sense. There is no compelling reason to believe that our thoughts generate physical illnesses in this way. I do agree though that some "mental" illnesses, which I suspect are really brain disorders, do lead to physical symptoms, and this includes depression and anxiety. The older idea of psychosomatic was simply that physical illnesses have a mental component, its about how we think, how we feel, how we react when ill. This can have medical consequences, and I think is still valid. The modern causal interpretation of psychosomatic is what I object to. They have no objective marker, never had. There is no way to objectively test it. Its not science.

    Just to clarify my position, in the case of PTSD I consider it purely organic in causation. Sure there are psychological strategies to assist coping, and they may help a lot, but so far as I am concerned the underlying problem is physical. There are also probably psychological strategies that make PTSD worse. Embracing biological explanations does not preclude the utility of psychological methods, it just means that there is no pressing reason to consider the psychology causal, so the psychology can never be presented as curative of itself without really really good evidence.

    Bye, Alex
     
  7. Dolphin

    Dolphin Senior Member

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    The report has this discussion. I'm guessing you may have French as you're living in France. I'll also include the material in Dutch for those who understand that.
    Dutch:

    The reports are very interesting to read. One probably doesn't have to read a lot of the text as there is so much data in the tables. It's the biggest thing in French I've ever read. I'm not sure I'd be inclined to read full papers in French as it would be tiring - but with this, once I'd read the tables, I had an idea what the text was likely to say making it easier to read.
     
  8. Marco

    Marco Old blackguard

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    Thanks for that Dolphin.

    I'll give you a fairly accurate translation tomorrow.

    Cheers

    Marco
     
  9. Snow Leopard

    Snow Leopard Senior Member

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    Do you have a reference for this? :Retro smile:
     
  10. alex3619

    alex3619 Senior Member

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    Hi Snow Leopard, I have read the comment on Popper several times lately but I do not recall where. I will take a note of where and when I read it and let you know. These quotes come from academic papers and books, so although I am not 100% sure of reliability, I think it likely. Indeed, I have two interesting references on confirmation bias if you are interested:

    http://www.scribd.com/doc/73420955/...iatrists-Stick-to-Wrong-Preliminary-Diagnoses
    http://dspace.library.drexel.edu/bitstream/1860/1164/1/Parmley_Meagan.pdf

    The first shows how common confirmation bias is during diagnosis in clinical practice using an experimental trial. The second is similar but is a PhD thesis and not an experimental trial.

    The point about Popper, which is alluded to in the early part of Meagan (which I am only on to page 28) is that the psychosomatic doctrine is unfalsifiable. The main tenets could be falsified, but secondary principles redefine contrary data to reinterpret it as either irrelevant or actually confirming the psychsomatic hypothesis. This makes it unfalsifiable, which is what Popper means by non-science.

    I will have a look around and see if I can get a better reference.

    Bye, Alex

    PS Run a search using "karl popper unfalsifiable non-science psychosomatic" and you will get a lot of hits. Some of these sources are dodgy however.

    e.g. http://www.psychologistanywhereanyt...logists/psychologist_famous_sigmund_freud.htm

    "Finally, Freud's theories are often criticized for not being real science. This objection was raised most famously by Karl Popper, who claimed that all proper scientific theories must be potentially falsifiable. Popper argued that no experiment or observation could ever falsify Freud's theories of psychology (e.g. someone who denies having an Oedipal complex is interpreted as repressing it), and thus they could not be considered scientific."

    One of the many references that came up cites this, but I have not read the original:
    Popper, K. (1953). Science : Conjectures and Refutations. Lecture at Peterhouse, Cambridge.

    Here is the paper, but I have not read it yet, I hope to read it soon:
    http://emilkirkegaard.dk/en/wp-content/uploads/Karl-Popper-SCIENCE-CONJECTURES-AND-REFUTATIONS.pdf
     
  11. Marco

    Marco Old blackguard

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    Here's the translated discussion of the data from the Belgian rehabilitation clinics.

    Pretty much what we would have expected :

    ********************

    The results of psychiatric interviews (percentages of (adult) patients for whom each diagnosis is recorded) are shown in Table 32 on page 118. We note that there are sometimes large differences between centers, particularly with regard to the following diagnoses :

    'Somatization disorder / undifferentiated somatoform disorder' (mean 42%: range 1-89%);

    'Depressive disorders' (mean 13%: range 0-33%);

    'generalized anxiety disorder' (mean 6%: range 0-26%).

    The psychiatrists from the centres think that the large differences between centers result mainly from reporting biases (differences between patients in the extent to which they do or do not report certain complaints or symptoms) and /or interpretation biases (ideological differences) between the centre psychiatrists regarding certain diagnoses which depend on the observed symptoms).

    The literature also reveals significant differences in the prevalence of comorbidity in the case of CFS. In a study by Prins et al (2005), they found:

    current depressive disorder in 19% of those examined and 37% lifetime occurance,

    current anxiety disorders (13%) and anxiety disorders lifetime (20%),

    PTSD (Post traumatic Stress Disorder) current (0%) / lifetime (1%),

    somatization disorder current (5%), other current somatoform disorders (8%) / lifetime (8%).


    In other studies of psychiatric comorbidity in CFS, we found, however, many more psychiatric conditions recorded, such as that by Wessely et al (1998)

    : current depression (> 50%) and somatization disorder (20%).


    The largest differences between the centers appear to be for the confirmation of a diagnosis of 'somatization disorder / undifferentiated somatoform disorder' (a variance between centers from 1 to 89% of patients in whom this diagnosis was recorded).

    With regard to the complaints (symptoms) presented, the diagnosis 'undifferentiated somatoform disorder' corresponds more or less with the diagnosis of CFS (fatigue (and possibly other symptoms) lasting at least six months for which no organic cause or clear pathophysiological mechanism were detected). Also according to the description of this diagnosis (undifferentiated somatoform disorder), there must be a link to identifiable psychosocial factors that preceded the model (cardinal) symptoms which are considered etiologically important in causing this condition.

    The diagnostic description, therefore, reflects a 'psychogenic' concept (in the sense that stress factors are considered of primary etiologic significance). The differences between the centers regarding the recording of this diagnosis reflects, in an sense, the psychiatrists' uncertainties regarding the etiopathogenesis of CFS (opposing biological or psychogenic concepts). The whole category of somatoform disorders in DSM-IV is currently questioned because of its pronounced dual character.

    Some psychiatric conditions are exclusion criteria for a diagnosis of CFS. Based on the survey of the rehabilitation program, no patient was excluded on the basis of such conditions (accounting for the symptoms of CFS). These patients had probably already been filtered out by the GP who sent the patient, the center based on the standardized referral form, or by the resident centre doctor on the basis of prior consultation with patients referred to the center (13 cases).

    *********************

    Apolgies for any errors.
     
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  12. Sean

    Sean Senior Member

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    Thanks for this, Marco. Good thread all round.

    If a 1-89% variation in diagnostic rates isn't a massive red flag about the unreliability of a somatisation diagnosis, I don't know what is.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    I took the "4-dimensional questionnaire of Terluin" when getting diagnosed (among other tests), which scored for distress, depression, anxiety, and somatization. The 16 questions indicating somatization include: dizziness/light-headed, painful muscles, fainting, neck pain, back pain, excessive perspiration, palpitations, headache, abdominal bloating, vision oddities, shortness of breath, stomach problems, stomach pain, tingling fingers, chest pressure, and chest pain.

    In this validation study, patients with "definite somatization" scored a mean of 10.4 (SD 5.9) (Table 11). I scored 12/32 based on ME symptoms. Someone having a heart attack would probably score much higher, as would other people with various medical conditions.

    Which seems to indicate that diagnosing somatization is indeed a load of bullocks, especially when doctors try to quantify it with questionnaires. No one would give that questionnaire to someone with an actual diagnosis of a "real" illness ... it's just for letting doctors confirm their suspicions (based on a lack of observed clinical signs) that the patient isn't sick.

    It doesn't say whether someone is sick, or whether they're somatizing. The only thing that questionnaire indicates is whether or not the patient claims she is experiencing symptoms.
     
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  14. Dolphin

    Dolphin Senior Member

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    Interesting.
    I always like to read the questions on a questionnaire myself if it is being discussed in a paper (after a while one remembers the sort of questions asked e.g. with the SF-36).
    A lot of discussions in the ME/CFS literature are very academic in the sense that they just talk about the numbers associated with a questionnaire with people just accepting results from questionnaires at face value without wondering whether they might be problematic in ME/CFS.
     
  15. Marco

    Marco Old blackguard

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    Hi Valentjin

    I was going to suggest that it might be useful to start a thread (or group) examining the various psychometric (and other) instruments commonly used in describing ME/CFS patients.

    While I'm perfectly open to our neurological illness (if that's what it is) resulting in various mood related symptoms I also feel we sometimes just accept it when high rates of depression, anxiety, somatising etc are reported as co-morbid or the primary diagnosis.

    The limitations of SF36 and the Chalder fatigue scale have been extensively discussed on the PACE thread to which we could add the Hospital Anxiety and Depression Scale (HADS) and Beck Depression Inventory. I'm afraid I'm not familiar with Terluin.

    I've had a quick look at HADS which is designed as a rapid screening tool to assess anxiety and depression in hospital patients who might benefit from liaison psychiatry intervention.

    The 14 item questionnaire is intended to measure only the two factors of anxiety and depression and exclude items which relate to somatic symptoms (which would obviously confound results for medically ill patients).

    Reviews of the use of HADS suggest that it is adequate for its purpose but was found in a number of uses (i.e. with certain illnesses) to measure more than two factors - usually three. Anxiety, depression and a 'somatic' element. It has been suggested that HADS should be superseded in the light of these findings.

    I've found two reviews of the use of HADS in a ME/CFS population by the same authors. The first review concluded that HADS was not 'fit for purpose' (my summary). The second review extended the first and concluded that a more conservative conclusion was warranted. But suggested caution in its use and interpretation in ME/CFS populations.

    I may, if time permits, write this up properly with references.
     
  16. Dolphin

    Dolphin Senior Member

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    That'd be interesting (ok, I imagine not everyone would find the topic of interest! But I would).
     
  17. PhoenixDown

    PhoenixDown Senior Member

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    Can I have some links to those studies please (primary sources). It's no good me bringing that up in a debate if I can't back it up then I'm gonna look like a fool.
     
  18. alex3619

    alex3619 Senior Member

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    Hi, PhoenixDown, this was Lerner's research. There are only two working strongly in this area: Lerner and Montoya. I will have a look and add references if I have time, as a PS to this post. Bye, Alex


    http://aboutmecfs.org.violet.arvixe.com/Int/Lerner.aspx
    Up to 75% respond, some up to full recovery, but more were just mostly recovered. This article is from here originally, but I don't have time to search for the original. It was by Cort.

    http://www.treatmentcenterforcfs.co...e-on-the-management-of-glandular-fever-IM.pdf

    http://www.co-cure.org/Lerner.pdf
     
  19. Marco

    Marco Old blackguard

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    I'd be game in due course.

    Not at the moment though as I'm currently dealing with the aftermath of a number of burst water pipes.:Retro mad:

    In the meantime I posted the following comments regarding the Back Depression Inventory on one of the front page articles :



    "I have no idea how exactly you would go about disaggregating the symptoms of depression or anxiety as a discrete illness or co-morbid condition from those understandable feelings arising from chronic illlness or depression and anxiety arising from an inflammatory milieu as in heart failure, COPD or indeed ME/CFS (the cytokine theory of depression).

    The problem is compounded by instruments like the commonly used Beck Depression Inventory (BDI) that was presumably developed to discriminate cases of depression from healthy controls, not depression as a discrete illness (if there is such a thing) from the symptoms of depression in the chronically ill.

    The fact is the BDI includes items that refer to physical somatic symptoms and functional/societal deficits as well as those relating to negative affect. For example :


    .

    A quick look at the BDI shows how easy it would be to score highly on the depression scale due to physical symptoms and incapacity/doubts about future capacity while remaining resolutely not depressed. Even the one item likely to unambiguously point to depression (suicidal ideation) only scores the same as for the other items :

    http://www.mydrrachel.com/docs/BeckD...nInventory.pdf

    Personally, I now just tend to ignore any studies that suggest elevated levels of 'depression' or 'anxiety' as for the reasons above I just consider them additional symptoms and otherwise meaningless.
     
  20. Dolphin

    Dolphin Senior Member

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    Sorry to hear that.

    Thanks for info on BDI.
    Link didn't work but gave enough info to find it: http://www.mydrrachel.com/docs/BeckDepressionInventory.pdf

    I started a separate thread for posting the text of questionnaires (info could/would also be quoted be quoted if a particular questionnaire is discussed in the thread you had in mind):
    Questionnaire questions - post links or text (ideally scoring info if have it)
    http://forums.phoenixrising.me/show...nks-or-text-(ideally-scoring-info-if-have-it)
     

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