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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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Dimensions of pure chronic fatigue: psychophysical, cognitive and biological correlates in the CFS

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 2, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    It does mean physical, but the BPS types will often use it to indicate the same thing as "psychosomatic". So they'll describe certain conditions as being somatic, but it'll just be the ones which they believe are psychosomatic. They tend not to use it to describe cancer or MS, for example :p

    I think it also gets misunderstood and misused by normal doctors and others, probably due to seeing it misused by BPS types. Or basically they hear "somatic" and make the association with "psychosomatic".
     
  2. Bob

    Bob

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    I've never seen them use the word in isolation, to refer to a psychosomatic illness. (But I may have missed something?)
    It's always inserted into a longer phrase or word, such as 'functional somatic disorder', or 'somatic symptom disorder' or 'psychosomatic' etc.
    These phrases and words mean the opposite of somatic i.e. they refer to a non-organic ('functional') illness.
     
  3. alex3619

    alex3619 Senior Member

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    I do wonder if they realize that CFS (particularly ME and not idiopathic chronic fatigue) is close to being fully described with physical causation. Hence I wonder if they are staking yet more ground, claiming the physical now rather than claiming that it must be physically unexplained?

    In the case of ME just about everything now has a proximate physical cause. PEM? Energy crash and cytokines. Cognitive dysfunctions? Correlate with specific patterns of what looks like brain inflammation. Syncope? Orthostatic intolerance. Tachycardia? POTS. There are lots more known problems of course, but this alone is enough to cover maybe 95% of symptoms. Where in the rest is psychobabble going to hide?
     
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  4. lansbergen

    lansbergen Senior Member

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    So for them CFS is pure idopathic fatique.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Sphincters? :p
     
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  6. vamah

    vamah Senior Member

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    I think it is actually "fucktard", but your version in more polite.
     
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  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Well I was trying to be polite ;)
     
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  8. WillowJ

    WillowJ Senior Member

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    regarding the use of "somatic", it does mean "bodily", but I have seen it used where the context implies "functional".

    Because they ran tests (12 whole tests! or perhaps 20 standard screening tests! more standard tests if indicated, but no tests from recent research for the diseases considered "functional", of course), the symptoms are then said to be investigated, but the investigations turned up zilch. Thus, fill in the dots, implied to be non-organic in nature
     
    Last edited: Jun 4, 2014
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  9. Bob

    Bob

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    I've had a look at the paper.
    For a 'fatigue' study, run by psychiatrists and sleep specialists, it could be much worse.
    If all psychiatry-led fatigue/CFS studies were like this, I think we wouldn't be in quite such a bad situation as we are.
    I think it may be an honest attempt at investigative research into idiopathic fatigue, labelled as CFS.

    For this study, they equate CFS to unexplained debilitating chronic daytime fatigue that meets the Fukuda criteria. (Their view is that CFS is a subset of unexplained chronic 'fatigue'. i.e. CFS is idiopathic chronic fatigue that meets the Fukuda criteria.)
    So they are looking at chronic fatigue, not ME. (i.e. there's no mention of post-exertional exascerbation or any other symptoms other than fatigue.)

    They recuited using Fukuda, and they also excluded psychiatric conditions that they say could explain the fatigue (e.g. major depression, psychotic disorders and bipolar disorders.) It isn't clear how rigorous they've been at excluding other psychiatric conditions (and I'm not sure if they've excluded co-morbid depression.)

    A central theme of the study is that they've made a good effort to recruit a relatively narrow cohort of fatigue patients, by excluding patients with daytime sleepiness, sleep disorders, and potential sleep-related causes of fatigue. When they use the term 'pure' chronic fatigue, they are refering to their considerable efforts to exclude sleep-related causes of fatigue and daytime sleepiness.

    They have gone to some lengths to distinguishing between daytime fatigue and daytime sleepiness, and to exclude any potential sleep-related pathology, by excluding patients with sleep disorders, and who experience sleep disruption and lifestyles that may induce daytime sleepiness. They've gone to some lengths, even using a "full-night polysomnographic (PSG) recording" to exclude patients whose sleep patterns may cause fatigue or daytime sleepiness.

    They have excluded "interfering primary sleep disorders" and also lifestyles that may cause fatigue, such as excessive caffeine consumption and people working night shifts.

    Further exclusions were as follows: "Subjects presenting with any formally known somatic or mental condition that could etiologically explain or significantly interfere with fatigue or sleep (e.g., oncologic conditions, autoimmune affection, infectious disease, metabolic or hormonal disorder, insomnia, major depression, psychotic disorder, bipolar disorder); a body mass index higher than 28; an alcohol consumption higher than 2 units per day; substance abuse or addiction; excessive caffeine consumption (>3 units per day) were therefore excluded from the present study."

    The cohorts seem to be tertiary care referals, so perhaps severely affected, but I'm not certain about that.

    The hypothesis for the study is as follows:
    "We hypothesize (1) that attention or cognitive impairment profiles, psychomotor performances, inflammatory and immune activation will differ from healthy non-fatigued controls and (2) that different clinical dimensions in pure chronic fatigue patients are associated to each other and related to clinical symptom intensity."

    "...the main objective of the present study was to improve the description of associated dimensions in chronic pathological fatigue regarding cognitive impairment, attention capacities, psychomotor performances or muscular effort power and to investigate the respective relationships between these dimensions in a clinical model of chronic fatigue, namely CFS."

    So they are looking at various objectively measurable dimensions that can potentially be used to assess and diagnose CFS. (e.g. cognitive tests, psychomotor performance assessments, muscular effort and cytokine levels.)

    Overall, I found the study pretty boring, although they seem to have carried out quite rigorous sleep pattern monitoring, and also objective cognitive tests, objective psychomotor testing, and objective physical fatigability. So they seem to be making an attempt to objectively assess CFS patients. There were differences in the results (between patients and healthy controls) but the diffferences don't seem particularly startling to me. These results may well be useful, and objective testing surely moves us in the right direction, but I can't see how the results would make a massive difference to us. But perhaps I might have missed the potential significance of some of the results.


    Cytokines

    However, there are some startling and exciting results for the immune biomarkers (i.e. cytokine) readings.
    Look at the IL-8 results in the table that @Sidereal has posted in this thread.
    These are undeniably stunning results.
    The levels of IL-8 in patients is more than 221 times higher than that in healthy controls. (19,056 vs 86.) (And the p value is 0.000 which is very impressive. i.e. it means that these results are not likely to come about by chance.)

    And it's not just the average levels that are significant in this study, but it's also that the levels of IL-8 correlated with levels of fatigue. (Although exact results for this aren't given.)

    So this is a potential biomarker for this particular CFS cohort, that may indicate not only CFS, but also severity of fatigue in CFS.

    It seems like quite a stunning finding.

    Psychiatrists put that in your pipe, and smoke it!

    The differences in some of the other markers are also startling, and consistent (they say) with previous studies.

    In the discussion section, they have this to say in relation to these results, which is surely progress for the field of psychiatry:
    "Although their exact role in etiopathogenesis remains controversial and not fully understood, modifications of intercellular communications due to a potentially hyperactive immune reactivity or response might play a crucial role in the maintenance of daytime fatigue in these patients."

    Re IL-1b, they say that their findings are consistent with previous studies: "Likewise in our study, pro-inflammatory IL-1b has previously shown higher levels in CFS."

    For IL-6, they say that their study is consistent with other studies that show that IL-6 levels are not significantly different between patients and healthy controls.

    For the other cytokines, apart from IL-8, (i.e. IL-10, TNF-α, IFN-γ) they say that results from various studies are inconsistent.

    Re IL-8, they have this to say:
    "The chemoattractant IL-8 has previously been mentioned as one of the best potential illness marker in CFS (Broderick et al. 2012) and it has also been shown to be significantly increased in fibromyalgia (Wang et al. 2009), a psychosomatic condition that presents similarities and clinical symptom overlap with CFS. In our sample, IL-8 levels were also significantly increased in CFS patients and solely IL-8 showed a positive correlation to daytime fatigue symptom intensity on the FSS."

    At the end of the discussion they do seem a little dismissive about the significance and potential use of the immune markers findings, and they are more keen on using some of the other measures to assess CFS, but nevertheless, for psychiatrists, I don't think we can complain too much.

    They say:
    "Until now, there is no consensus of how we could represent or demonstrate a clinical condition’s state that is essentially linked to perception and may fluctuate over a time span. However, our study also showed that a physical assessment of fatigue can be significantly related to global sensations of fatigue and even predict symptom intensity as assessed by structured scales like the FSS in clinical conditions as CFS.

    "With respect to the biological findings in immune activity as displayed by cytokine levels here, it remains however unclear if specific cytokines are consistent markers or mediators of fatigue sensations in general.

    "Despite IL-8 showing a strong correlation to perceived fatigue intensity in our sample, these biological assessments should be expanded to other models of chronic daytime fatigue to increase our understanding of their respective roles in global fatigue sensations. Although showing promising and rather consistent results, the more sophisticated and cost-intensive biological measures, like cytokine expression assessments, might currently still be limited to research purposes.

    "In conclusion, we propose that objective measurements of fatigue should therewith be multidimensional and contain assessments of mental and physical fatigue and rather focus on fatigability (kinetic and dynamic aspects of fatigue) and that future studies should explore the ‘time on task effects’ (Pattyn et al. 2008) to come up with a proposal of structured chronic fatigue assessments which can be routinely available and used in daily clinical practice."



    With regards to the sleep aspect of the study, they conlude:
    "Hence, with respect to potential treatment attitudes, we propose that co-morbid or overlapping excessive daytime sleepiness should always be excluded in patients presenting with a main complaint of idiopathic chronic daytime fatigue whether corresponding to CDC criteria of CFS or not."
     
    Last edited: Jun 4, 2014
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  10. Bob

    Bob

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    These were the psychometric and objective tests that they used...

    Psychometric scales:
    - Fatigue Severity Scale
    - Sleep questionnaires
    - The Epworth Sleepiness Scale
    - Pittsburgh sleep quality index
    - Hospital Anxiety and Depression (HAD) Scale
    - Visual Analogue Scales (VAS-F and VAS-S).

    Objective Tests

    Sleep monitoring
    - All patients and controls were recorded for two consecutive nights of polysomnography (PSG) with MSLT s (Krupp et al. 1989) on the day following the first night of PSG.

    Psychomotor assessment:
    - Psychomotor vigilance task (PVT) (measures the rapidity to respond to the start of a chronometer by pressing the space bar when it starts)
    - The finger tapping test (FTT) ("considered a reliable indicator of execution motor speed")
    - Symbol span or digit symbol substitution test (DSST) ("assesses sustained attention, speed of response, and visual scanning" "This test requires converting a list of symbols into numbers by referring to a code line.")
    - Zazzo’s cancellation task (ZCT) ("measures the velocity of crossing out a target symbol among a list of 1,000 symbols written down on a sheet of paper containing 40 lines of 25 targets.")

    Physical fatigability
    - Measures of muscular hand grip (HG) strength


    For the objective tests, above, (other than the sleep studies) there were differences between patients and controls for the "symbol span or digit symbol substitution test", the "psychomotor vigilance task", one set of results for the Zazzo’s cancellation task, and some results for the hand grip assessments.
     
    Last edited: Jun 4, 2014
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  11. Bob

    Bob

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    These are all the terms that include the word 'somatic', that I'm aware of, that mean the opposite of somatic:

    Functional somatic disorder
    Functional somatic syndrome
    Somatic Symptom Disorder


    And then there are similar terms that are derived from 'somatic':

    Psychosomatic illness.
    Somatization disorder (and somatisation of mental illness/anxiety.)
    Somatoform disorder
     
  12. WillowJ

    WillowJ Senior Member

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    although in this paper you also quoted these particular authors as saying:

    and there it's used the same as "medical" or "physiological" would be in other papers. (though I still think "mental" or "psychiatric" diseases are genrally not different in kind, but that's a different objection altogether)
     
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  13. WillowJ

    WillowJ Senior Member

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    thanks for all the quotes from the paper, @Bob

    I always have to wonder what diseases they end up with when they rigorously rule out sleep problems. CFS is known to have various sleep disorders, including Fukuda-CFS cohorts generally do. Including "primary" ones like apnea and narcolepsy. Not sure if they would consider constant awakenings/Alpha wave intrusion, upper airway resistance syndrome, and such things as primary.

    Still a biomarker for fatigue (whatever the cause) is potentially useful for a lot of people. I would like to see it tested in various diseases and see how broad it is. That would be really cool.

    I would like to see someone split ME research from fatigue-as-a-symptom research, fund both, and carry on with both (just under appropriate names). Pain-as-a-symptom research would be good, too, but it also needs to be separated from the various specific diseases it piggybacks on.

    Of course, either way they would have to be careful once we start to have ways to measure symptoms, to know that there may be other mechanisms we don't know about yet. Ooops, no pain meds for you, or no assistive devices for you, you don't have this biomarker.... um, bad idea.
     
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  14. Bob

    Bob

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    Good points @WillowJ.

    It seems sensible to carry out fatigue research, if only it were done honestly and with good scientific intention. Studying fatigue and attempting to narrow down and refine cohorts seems like a good use of resources. It's the conflation of fatigue with CFS and ME, along with the over-promotion of psychological theories and the corrupt promotion psychological 'treatments' and 'cures' that is the problem. This paper seems like an honest attempt to investigate fatigue as an unknown quantity. The use of the word 'psychosomatic' is unfortunate, but the bulk of the paper involves a fairly intelligent discussion and exploration of fatigue. The conflation of fatigue with CFS in this paper is also disappointing, but I think the CDC's pathetic CFS criteria carries much of the responsibility for that in this paper.
     
    Last edited: Jun 5, 2014
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  15. Jonathan Edwards

    Jonathan Edwards Board Member

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    I haven't been able to get hold of the full article. I cannot find it through my college resource in the May, June or July editions of the journal. I would like to look at it in detail.

    As an aside, I think some people are being a bit hard. Some poor Belgian has spent a lot of time measuring cytokines in a disease and now she finds the patients hurling obscenities at her because her translation is not that good. For all I know psochosomatique in Belgian French means 'affecting both mental and physical states', which nobody with brain fog is likely to disagree with I guess. She might decide to try another disease next time.
     
  16. Esther12

    Esther12 Senior Member

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    @Jonathan Edwards

    I agree, but also think that it's unsurprising that this is a touchy area for a lot of patients. Given the history here, and the fact that many people cannot gain easy access to the full paper, it's not that surprising that some patients don't give the benefit of the doubt to an abstract that asserts CFS is a psychosomatic condition without clarification. Some of the words used by researchers can have real political power that they do not always seem to properly appreciate.
     
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  17. Valentijn

    Valentijn Activity Level: 3

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    In another article involving the primary author (Daniel Neu), they state:
    There's also quite a bit of citing to research which psychologizes and overstates the effects of psychological treatments. And a heavy emphasis on CF(S) patients' "(mis)perceptions" of symptoms.

    They have also reduced CFS to being simply "fatigue", which badly mischaracterizes and minimalizes the disease. This is exactly what the blatantly psychosomatic groups in England and the Netherlands do, and is usually a very bad sign.

    The current study under discussion can be partially viewed at http://link.springer.com/article/10.1007/s00421-014-2910-1#page-1 . On page 2 they state:
    The Bhui paper which they refer to is fully available at http://www.biomedcentral.com/1741-7015/9/26/ , and they conclude:
    Paul Linkowski, one of the current authors, also co-authored "Chronic fatigue syndrome: psychiatric perspectives", which isn't online in English or French, but does have an English abstract:
    All in all, they seem to know exactly what "psychosomatic" means in English, and they are using it intentionally to mean an illness where physical symptoms are caused by psychological factors. There are many researchers who express such a belief, even in the face of biological abnormalities. In these cases it seems like an ingrained assumption that can't be challenged any more than the religion of a true believer. Some will try to avoid finding contradictory biological information, but others will seek it out and acknowledge it while still in a completely psychosomatic framework.

    The current group seems both completely entrenched in the psychosomatic view, and accepting of biological abnormalities, even causative ones. They appear to be resolving the apparent contradiction by seeking out the biological cause of psychosomatic illness. Basically they are convinced that CFS is psychosomatic, but believe there might be something biological which is creating a psychological disorder which causes us to imagine our physical symptoms.

    It's irrational, but that happens a lot with ME/CFS research. With CFS newbie researchers who stumble upon biological abnormalities, they usually differ in that they don't have a strong psychosomatic belief, but they rely upon the authoritative statements of "experts" without closely examining the basis of those statements. So again we often see a list of biological abnormalities found, followed by the statement that ME/CFS is a psychological disorder, and little or no attempt to reconcile the obvious divergence.

    Another possibility is that journal reviewers or supervisory academics (in the case of theses) require such a statement to have their own beliefs acknowledged.

    These aren't the worst sort of ME/CFS papers - they often find something useful. But the outrageously illogical conclusions make them an easy target for ridicule. The really bad papers get it much worse from us :p
     
    Last edited: Jun 14, 2014
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  18. Jonathan Edwards

    Jonathan Edwards Board Member

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    It may not be surprising, Esther, but is it sensible? Let's imagine our Belgian scientist is a 32 year old post doc who only has half a salary because the boss cannot get a proper fellowship salary for her. She has tried to publish this in four journals, all of them rejecting it and now at last she gets it in a journal nobody knows much about but at least shows some interest. She works on ME because her sister's boyfriend has it and she thinks it's worth living in a tiny flat on half a salary to do something interesting. She would like to have kids but her boyfriend is out of work and she is desperate to get a permanent job. She follows PR because she is interested in what people think and what she gets is swear words just because she put in a word that she thinks is uncontroversial. And this is a paper that, forgetting that one word, is sufficiently eye catching scientifically for Bob to flag it up for me on another thread. If the data can be confirmed this is exactly the sort of work we are all desperately hoping to see in the journals. It might mean that we have a marker that will allow us to do some decent trials. Why don't we talk about that?

    OK I made all that up. But nobody has a duty to do research on any disease in the 'free market' society we live in. People work in science because it interests them. They find themselves in a hire and fire situation where they have to do work on whatever they can get grants on - if they are lucky to get grants. I gave up at 60 because I could never get the grants to pay my staff properly, despite having published one of the most cited papers in the last decade. I am now sufficiently interested in ME (maybe partly because a friend's son has it) to go back to the lab, unpaid. I have spent the last week drawing up diagrams to try to get a better idea of what mediators might be involved, after meeting some really impressive ME researchers last month at IiME. I need to see this paper but can't so far.

    Maybe I'm just saying that if somebody finally shows signs of opening the door best not keep kicking it with your left foot! They might shut it again.
     
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  19. Cheshire

    Cheshire Senior Member

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    The use of "psychosomatique" in french is a bit ambiguous. For a few people, it effectively deals with the interaction between mind and body. My previous GP told me that to a certain extend, all diseases are psychosomatic. I don't know if he really meant it or if he wanted me to swallow the pill. But for most of the doctors, it clearly means "there's nothing wrong with you, you've got a psychiatric disorder".
    French spoken in Belgium is not very different from that spoken in France, so I guess it means the same.
     
  20. Jonathan Edwards

    Jonathan Edwards Board Member

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    Dear Valentijn,
    The only bit in your post that seems to me to indicate what the authors here actually think, now, is the bit
    'Mainstream views still often consider it as an undetected primary sleep disorder or as the psychosomatic expression of a related anxiety or depression syndrome.'
    Which rather suggests they wouldn't agree - normally 'still often consider' is used to indicate something you think may be out of date.And clearly they have used 'psychosomatic' because that is how the literature 'nosologically defines it'. When I wrote my paper on the reason why rheumatoid arthritis ought to respond to rituximab it was rejected and a very eminent immunology friend said to me 'oh well of course you can't expect to come in with such an aggressively new theory all at once and expect those people to publish it'. So I sent it to his journal and he published it.

    OK so maybe the first author is a guy called Dan and maybe he works in a psychiatry department. But if he is saying 'still often consider...' is this the right time to put a boot in?

    I will see if I can access the paper on that URL. Otherwise back to my diagrams. I was thinking maybe IgM and the IL-17a ... mm.
     

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