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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. Jonathan Edwards

    Jonathan Edwards Board Member

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    Thanks Cheshire,
    That suggestion of mine was obviously wrong. But it looks from Valentijn's stuff that this was a case of 'let's not upset the journal reviewers, we will intone the mantra and get this published so that people can see the data'. The alternative is usually academic suicide and not much use to patients.
    leela, rosie26, WillowJ and 5 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    The ridicule is still appropriate - if the journal or other parties required it to be inserted, then they earned in fair and square. And if it's what the authors actually believe despite their own evidence to the contrary, then it's what they deserve.

    When an author is forced to add a statement they don't agree with, it would be nice if they offered an explicit explanation somewhere. Though admittedly that isn't always a practical option.

    It's all so much easier when authors have written non-journal published solo opinion pieces, and/or made semi-private statements to government agencies that later get revealed, a la Simon Wessely :D Saves us the effort of trying to decode the various terminologies and contradictions they put out publicly!
    Wildcat likes this.
  3. Cheshire

    Cheshire Senior Member

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    I wouldn't say "obviously wrong", as I said, it can be used in the meaning you pointed to. I think the use of words and their deep meaning is a real issue in those diseases with unclear etiology and physiopathology, that's why we can sometimes get easily upset.
  4. Esther12

    Esther12 Senior Member

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    I pretty much agree, and may entirely depending upon what is meant by 'sensible' - a word I've come to rather take against recently... It's often not 'sensible' for those in positions of weakness to react against those who have power over them, even if they have been poorly treated. Best to be concerned with what is honest and accurate than concerned about the consequences imo, or else much of the population could end up in grovelling passivity. I had said that that I thought it would be best to be cautious about interpreting their use of the word 'psychosomatic' here, and I've myself not read this paper myself, so can't really comment too much on this case though.

    I think people should try to only make informed and reasonable criticisms of other people's work, but I also think that it's best to not be too concerned about hurting the feelings of more powerful sections of society just because that's more likely to cause one problems in the future. It seems that some researchers are willing to misrepresent the evidence in a way which harms patients without being too concerned about our feelings!

    Even for just this abstract, we could easily imagine ways in which claiming CFS is psychosomatic could affect the judgements of those with authority over CFS patients in a way which makes their lives more difficult. Personally, I think we've got bigger things to worry about, but the real political power researchers have over patients (particularly for a condition like CFS), does mean that a few stray words from them can have much more impact than a load of patients being angry on an internet forum.
    rosie26, Leopardtail, WillowJ and 2 others like this.
  5. A.B.

    A.B. Senior Member

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    If psychosomatic simply means "symptoms involving the brain and body", why are there no special words to indicate "symptoms involving the gut and the body" or the like?

    I think psychosomatic is still code for "psychological problems converted into physical symptoms", it's just that Freud has been discredited so they can't openly say that.

    Furthermore, why are treatments for psychosomatic illness mental treatments? CBT/GET is about challenging false illness beliefs, not treating both the body and the mind. CBT/GET proponents are generally against pharmacological treatment.

    If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck (even if it has a label that says chicken).
    Last edited: Jun 14, 2014
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  6. Marco

    Marco Old blackguard

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    Realpolitik aside, these IL8 findings do appear to be a bit of an outlier as I don't recall significantly elevated IL8 as being a consistent finding and 'spot' cytokine assays are notoriously unreliable.

    But, these aren't the only Benelux researchers associating IL8 with 'fatigue'. This

    http://www.jneuroinflammation.com/content/pdf/1742-2094-9-205.pdf (full text)

    paper associates IL1-b stimulated IL8 production with severe fatigue in military personnel post-deployment with the longtitudinal design suggesting that it is reactivity to IL1-b (in vitro) rather than overall levels that determine fatigue levels and that this reactivity is 'acquired'.

    'Fatigue' of course is not just a peripheral physiological problem but also a central/behavioural one so no surprise then that IL1-b also promotes IL8 production by CNS microglia :

    http://www.jimmunol.org/content/160/4/1944.abstract
  7. Jonathan Edwards

    Jonathan Edwards Board Member

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    Don't get me wrong Esther, I have been hurting the feelings of powerful sections of society all my life, despite it costing me an arm and a leg in salary upgrade. Anything that calls itself cognitive behavioural therapy must be as phoney as King Charles 1sts hairdo. It is just that reading the abstract and snippets again and again I cannot find any good reason to think that Dan in the sleep lab is the bogeyman portrayed. What worries me is that if it looks like a duck to a PWME even if it has four legs and says bow-wow, a PWME will call it a duck. If something stinks by all means shout it from the rooftops, but make sure it stinks first. Has any of us except Bob actually managed to read this yet?
    rosie26 and Marco like this.
  8. Jonathan Edwards

    Jonathan Edwards Board Member

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    That all figures Marco. If only one could get a handle on what is going to be consistent here... Maybe some acquired immune cofactor (??antibody) sensitises myeloid cells to IL-8 production. We were discussing last week that it would make sense for a circulating factor other than cytokine to promote local cytokine production to induce symptoms - explaining the paucity of changes in circulating cytokines. But then we seem to have some circulating IL-8 in this one? Wish I could find the paper. Bob?
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  9. Esther12

    Esther12 Senior Member

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    Yeah, it could well be people were too critical because of misinterpreting the abstract, and I was worried about that myself. Just because there have been problems in the past doesn't mean that we should jump to assuming the worst. I think that the history of unreasonable views and prejudices around CFS, and the often underhand way in which they are expressed, can lead to a degree of paranoia. Also though, I've had a few experiences in the past where I thought other patients were being paranoid and unreasonable, and later came to realise that it was actually that I was ill-informed and naive! There are problems with CFS research that I would not have believed possible a decade ago (perhaps indicating the lazy trust in the processes of science of an outsider).
    Valentijn and Cheshire like this.
  10. Valentijn

    Valentijn Activity Level: 3

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    http://cvi.asm.org/content/12/1/52.full (higher - sudden onset)
    http://www.biomedcentral.com/content/pdf/1479-5876-7-96.pdf (lower)
    http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8986.2010.00978.x/abstract (higher after exertion with more symptoms, normal prior to exertion)
    http://cvi.asm.org/content/17/4/582.full (no significant difference during the night)
    http://iv.iiarjournals.org/content/25/3/307.full (higher)

    So it soundss like severity of symptoms, recent exertion, and/or sudden onset might be factors in ME/CFS patients having elevated IL-8 compared to controls.
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  11. Valentijn

    Valentijn Activity Level: 3

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    I'd think it's safest to assume that "psychosomatic" means "psychosomatic" until shown otherwise :p
    Wildcat likes this.
  12. A.B.

    A.B. Senior Member

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    Is there any connection between this finding of elevated IL-8, the German EBV findings, and recent research implicating B-cell?
  13. user9876

    user9876 Senior Member

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    I was wondering if there is a wide variety of measurement results because of the different ways they are taken. Light http://www.ncbi.nlm.nih.gov/pubmed/20230500 reported that cytokines change after activity (if I have understood the abstract correctly). So I was wondering if some results are taken after subjects have effectively done some exercise in getting to the hospital for testing and then a wait where as others are done in more accessible places. I know, for example, some hospitals in cities have little close parking so I was wondering if these types of factors could come into play. Thus would more regular testing over time (and home based) be useful?
    Valentijn likes this.
  14. natasa778

    natasa778 Senior Member

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    Wondering if these earlier findings could add anything to the discussion

    Cytokine expression profiles of immune imbalance in post-mononucleosis chronic fatigue

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  15. WillowJ

    WillowJ Senior Member

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    I think some of the comments in this thread related to the state of the literature in general (some of mine did, anyway), which is possibly unfair to the authors of this paper.

    Still, it's difficult for us patients not to see every word in every paper as a battle in a propaganda war. Probably because we live the situation constantly. I had not previously considered that putting some of the "zombie science" wording in a paper might lead to better publication prospects, and I'm glad you explained this.
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  16. Marco

    Marco Old blackguard

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    Looks like there might be more consistency in these findings than I'd previously thought.

    The Production of Interleukin-8 Is Increased in Plasma and Peripheral Blood Mononuclear Cells of Patients with Fatigue
    Matthew Sorenson1*, Leonard Jason2, Athena Lerch2, Nicole Porter2, Jonna Peterson3, Herbert Mathews4

    http://file.scirp.org/Html/7-2400110_17756.htm
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  17. natasa778

    natasa778 Senior Member

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    This is also quite interesting:
    Spinal Fluid Abnormalities in Patients with Chronic Fatigue Syndrome

    Klimas et al. found LOWER IL-8 in spinal fluid in their study if I remember correctly? I also came across another study by Broderick using a wider cohort of idiopathic ME, where IL-8 in blood was found to be lower than controls. I cannot find those studies again now, but wondering if they accounted for types of onset in their cohorts. (btw IL-8 seems to be grossly elevated in patients with all types of acute and chronic viral infections, from hepatitis to HIV and HTLV, both in blood and spinal fluids).

    Another thing worth investigating apart from type on onset might be the levels of il-8 relative to illness duration - not sure if IL-8 was part of the picture in Lipkin's recent findings, where levels of certain cytokines/immune pathways were shown to change in patients who have been ill for more than 3 years.
    Last edited: Jun 15, 2014
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  18. alex3619

    alex3619 Senior Member

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    As I said earlier, to really analyze a paper requires the paper and not the abstract. That doesn't mean we wont have grounds to criticize it, we might, but it means we will be doing so on accurate information ... and we might just be pleasantly surprised.

    Having said that, the casual use of "psychosomatic" is always a red flag to me. Its a signal to watch something closely.
    WillowJ and Valentijn like this.
  19. user9876

    user9876 Senior Member

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    Academics have to publish and sometimes it is easier when using the language used by their peers particularly the language used by journal editors and reviewers. Some may use such language as its common place in the literature without thinking about the semantics. In a different field I've noticed that younger European researchers whose English is not great tend to fall back on stock phrases in an attempt to get the style right. Personally I couldn't even contemplate writing anything in a foreign language.

    They seem to have set up an interesting experiment which would also suggest they don't agree with the psychosomatic label.
    WillowJ and Bob like this.
  20. Leopardtail

    Leopardtail Senior Member

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    I appreciate the point you are trying to make here Johnathon. There are I think two things in play here:
    1. the psychiatric lobby has been less than honest in their research using a wide variety of methods that at best could be called 'bad science' at worst 'designing the research to prove them correct'.
    2. there is a fundamental lack of democracy in that most of us cannot access the research without paying a substantial fee. When hundreds of very similar papers are involved that creates a fundamental "dark rooms" culture under which point 1 above is operating.
    In short the level of scientific rigour is far too low. Improve that and people will trust the research as per diabetes.

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