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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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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    I don't get too excited when PDW says CFS or other conditions aren't "all in the mind". He accepts there can be abnormal test results which he puts down (mainly) to deconditioning.
    biophile likes this.
  2. Esther12

    Esther12 Senior Member

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    I'm pretty sure that the piece of his that he cited has been discussed on here to, and was not impressive. I don't think it supports his point in the way many readers would expect.
  3. Firestormm

    Firestormm Guest

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    I was reminded earlier about the use of the phrase sub-phenotypes - used above by White. Used also by the MRC when they recently extended the original funding:
    Interestingly, that detail from the MRC was also accompanied by other more positive news as I am sure you will remember better than I. Combined I do feel it served as something of a turning point e.g.
    and
    The latter quote has I noticed been used by IiME as part of their promotion for this years 8th conference. I am wondering, hoping, if we are seeing a case of finally singing from the same hymn sheet.

    Of course White I understand is a member of the MRC Expert Group so you might say he is already onboard. Then again you might not.

    It is reasonable to suggest that in the paper you began this thread with White wasn't talking exclusively about ME/CFS at all and I am stretching things rather a bit.
  4. Dolphin

    Dolphin Senior Member

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    The MRC could have changed.
    I haven't seen evidence that Peter White has changed from his position of recommending graded exercise therapy for all or the other "hardline" positions exposed in his submission on the draft NICE guidelines: http://bit.ly/AcWj0V
    Peter White has done bits of biological research in the past.
  5. PhoenixDown

    PhoenixDown Senior Member

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    Mirror Images cover 1b.jpg
    That place is like a creepy mirror universe version of our forum, where everything is opposite but parallel. Perhaps in the mirror universe Alex's avatar is Chunk from the Goonies instead of Einstein.
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    hehe classic pic/meme/refference ;)
    "Mirror Spock" rules! :p

    that's (other forum) what happens when you bow down and be a "sheeple" to these maniacal sods.

  7. PhoenixDown

    PhoenixDown Senior Member

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    In the mirror universe the mirror Tania holds up signs saying:

    Mirror Tania.png

    and SilverbladeTE is a mild mannered Scotsman who praises notorious psychiatrists.
    SilverbladeTE and biophile like this.
  8. alex3619

    alex3619 Senior Member

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    Satire is a powerful political tool. ;)

    In a few months I hope to start a thread or threads that either contain just satire, or contain press releases on psychobabble but rewritten to be strictly factual, as explicitly factual as we can make it. Lets expose the spin. There is some really good satire out there that we can post links to as well.
    Valentijn likes this.
  9. biophile

    biophile Places I'd rather be.

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    White says FSSs "are probably the most useful description of a group of conditions presenting with physical symptoms and disability for which medicine cannot find presently a convincing explanation". White wants to merge neurology and psychiatry together as a single discipline. IIRC it is often implied that the word functional is neutral on cause, but most neurologists and psychiatrists would define functional as non-organic, which is not in fact a neutral placeholder. So what happens when biomedical science does eventually find a convincing explanation for so-called FSSs?

    As Alex said, medicine started out with almost everything being medically unexplained. The etiology of MS itself is still not established, but symptoms are explained (demyelination, white matter lesions, immune-mediated). We need an accepted equivalent for CFS, in which the symptoms can be explained even if the etiology cannot. There must be biological abnormalities in CFS which correlate with or even explain symptoms. AFAIK, a picture is already emerging from the research despite the heterogeneity, although I am not in good enough shape right now to properly outline what that is.

    Whether or not the biological abnormalities in CFS are "organic" or "psycho>somatic" or "functional" or somewhere inbetween is another story, sooner or later this will become more obvious when the nature of the abnormalities is better established. I doubt there is a strict division between organic damage and functional disturbances in biological function, but I know where I am placing my bets on the spectrum, and those bets are not on many of White's views.

    I can appreciate the consideration of psychosocial factors outside or in integrative addition to a reductionist biomedical model eg BIO-psycho-social, but biomedical science still has so much promise to improve the health of humanity. I believe that in this century we are going to start seeing many major chronic diseases (including psychiatric diagnoses) being much better treated or even cured while the FSS/MUPS issue will be elucidated enough to make the current ideas look as crude as Freud's era does now. The progress is mostly going to come more from advanced biological research than increased consideration of psychosocial factors (which to be fair can still have significant importance).

    Has anyone even seen White write a single paper on CFS which incorporates the findings of researchers with a more biomedical perspective of CFS, such as the Lights, Pacific Labs, and Klimas etc? White mentions "sleep–wake circadian rhythms, nocturnal sleep architecture, autonomic nervous system, hypothalamic–pituitary–adrenal axis, cytokine distributions, and central nervous system sensitisation", but these are usually framed by White and colleagues as functional and arising from or mainly perpetuated by cognitive and behavioural factors. If anyone can currently get White to state that FSSs are probably caused and perpetuated top-down by unknown biomedical factors more than top-down cognitive-behavioural factors, then I will eat a corked hat on Youtube (figuratively speaking).

    Moving the FSS debate beyond "all in the mind" is about as impressive as moving 21st century medicine beyond the four humours and vitalism: so what? Deconditioning (White's seemingly favourite explanation for PEM in CFS), and the physiological effects of mental states etc are not "all in the mind" either. I would like to see White and others move beyond the assumption that the critical reaction to their work is based on misinterpretations of it as "all in the mind". LOL Alex for comparing psychosomatic medicine to alchemy and astrology; if alchemy and astrology helped give birth to chemistry and astronomy respectively, it will be interesting to see what psychosomatic medicine will become?

  10. alex3619

    alex3619 Senior Member

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    biophile, the more valuable hypotheses buried in psychosomatic medicine will probably find a new home. They have to because the old home is being demolished. I would like to give them a hand with the movers, while at the same time cheer the wrecking ball.
    Valentijn and biophile like this.
  11. taniaaust1

    taniaaust1 Senior Member

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    There was a mito dysfunction one years ago in which they could distinguish control group from the ME/CFS one fairly accurately and which they also could tell from the test results, in what severity group the patients were in. I dont think it was thou independently validated . Too many of the very interesting studies havent been followed up by others.

    edit.. I just found the study I was refering to http://www.ijcem.com/files/IJCEM812001.pdf
  12. Firestormm

    Firestormm Guest

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    Here's briefly and in general terms what I think is going to happen. Sub-categorisation (phenotyping) will occur based largely on the results from research such as that of Newton and others. What I don't see happening as a result of any of this is that 'ME' will emerge as a distinct condition from the 'pot' of patients with a diagnosis.

    What will happen is that within the pot of diagnosed patients - especially at the severe end and with regard to actual clinical delivery - is a greater tailoring of any treatments prescribed or tests recommended. What do I mean?

    Well, take muscles. Within the 'pot' those who have most problems with acid production and retention and for whom exercise is either impossible or comes with problems presently defined as PEM - will receive specific identification and specific treatment. This would then enable them to have a more tailored 'rehabilitation' programme.

    I think 'rehabilitation' and the principles of CBT for that matter are too ingrained as clinical practices now for us to see them withdrawn as recommendations for CFS/ME.

    Similar to the muscle work, POTS and autonomic dysfunction (including cognitive difficulties) will also see specific identification/testing of those in the severe category and/or for whom these symptoms are of most concern. Specific treatment in this regard is a reasonable hope and will enable people to again undertake a programme of 'rehabilitation' should such a need be identified.

    The same thing will happen for those who are identified as having 'inflammation' problems - although specific treatment for this may be harder to come by (my knowledge of this is rather scant but based on personal experience of encephalitis there was no prescribed treatment that I can remember and I am not aware that anything exists now - perhaps it does for the most severe presentation I don't know).

    And for sleep dysfunction. Patients will be identified and the most severe will have testing and specific treatment - should research develop and then have a treatment approved.

    Not all treatments or more tailored 'rehabilitative' or management approaches will be appropriate for everyone in the 'pot' but it is perhaps likely that for some - maybe those in the 'severe' category - they will be. It will comprise a continuing personalisation at the clinical delivery level.

    In diseases like MS and Parkinson's, Rheumatoid Arthritis and even Osteoarthritis, more is know about the mechanisms leading to the symptoms but not of the cause themselves. However this hasn't stopped research from continuing in terms of trying to discover more about what causes some people to develop the condition, and why some who do develop it, suffer more from some of the symptoms and not so much from others.

    Treatments are tailored for these patients also but 'rehabilitation' is applied similarly, and graded exercise as well as the principles of CBT are applied as part of that delivery as and when considered appropriate or indeed asked for by the patients themselves.

    Of course the end goal is to try and understand what causes our various degrees of disability and more about what triggers it and why it so often is reported as fluctuating. But I think discovering an aetiology is a long shot and than in the meantime learning more about the development of specific symptoms and perhaps targeting more effective treatments for them will be something reasonable to ask of science and medicine.

    If the relieving of particularly disabling symptoms can allow people to engage better with 'life' and enable a return to some greater participation in e.g. work then this is something I would certainly be very supportive of - no matter who delivers the treatment or the science behind it.

    But a return to pre-illness states for all those of us with this diagnosis is not something I think is a reasonable expectation although if new treatments are delivered quickly enough in the future it might help prevent progression to the chronic stage.
  13. Firestormm

    Firestormm Guest

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    To Val, an interesting and perhaps more realistic interpretation of CBT for CFS/ME The language is perhaps more conducive to a position from where we both might be coming from I thought:

    Guideline thread: http://forums.phoenixrising.me/inde...ow-as-of-31-dec-2012-on-guidelines-gov.21213/
    biophile likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    The problem is that the same researchers that have done some really low-quality research into ME are some of the ones applying the same principles to other diseases. Lots of physical symptoms = more psychiatric problems on bad questionnaires, and thus provides an opening for therapy aimed at fixing problems that might not actually exist, and potentially doing harm in the process.

    Are there groups other than the ME BPS bunch using GET and ME-style CBT on those other diseases?
  15. user9876

    user9876 Senior Member

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    Academics often bend their language to what the research councils say so that they can apply for new grants. Many seem to end up doing much the same work just using different language.
  16. Firestormm

    Firestormm Guest

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    Yes. But your definition of 'ME-style' CBT is not my experience of applied clinical practice. And we've had that debate several times over so I won't go there.

    The principles of CBT and Graded Exercise are embedded in the psyche of healthcare, Val. It should be personalised, tailored and delivered to patients only when considered appropriate. I do not believe this to be the scary treatment that some would infer that it is.

    However, when no other treatment is offered I can wholly appreciate that both are lacking. If either or both are tried and found to be of little or no use - then at least the patient has tried. And that's no different to trying a drug and finding it doesn't reach the parts such a drug is intended to meet.

    When I hear CBT and GET sold as 'cures' or sold unrealistically, I really do despair, Val. In that I think we are on the same lines. Any therapy or treatment that is delivered to a patient unrealistically should not be condoned. That practitioner should be pulled from patient care and subjected to a re-education and/or water-cannon.

    If a patient with our diagnosis can better learn to realistically manage the condition through the intervention of those who use the principles of Graded Exercise/Activity Management and/or CBT then I think that deserves our support. But like drugs the proof is in the eating.

    There is no single approach or delivery or drug that we all can take and feel our symptoms have improved or that holistically we feel better able to get on with life - but I do believe that drugs and therapies should be made available generally in order that healthcare practitioners and patients can work together to 'pick and mix'.

    My 'suck it and see' approach to my condition and the various treatments offered to me over 15 years remains the best advice I could possibly give to others. In order to see if you are able to gain something from whatever you might be recommended you have to try it yourself.

    If through engagement with patients and better education we can help to ensure that healthcare practitioners are more informed about the condition and the patients who live with it from a holistic point of view and symptomatically - we might see less of the 'horror' stories appearing on forums etc.

    Even if better treatments do come from the research currently being developed, I repeat, I do not expect CBT and GET and Activity Management to disappear from NICE. Rather new treatments for specific and defined symptoms that may not be applicable to all patients (probably wont) - will be seen as a compliment to the current approaches.

    Those approaches will be refined. I have no doubt about that. As more understanding (through science) becomes known the approaches to delivery of CBT/GET/Activity Management will change and I hope a far more personalised delivery will come about - most especially for those in the severe category.
  17. user9876

    user9876 Senior Member

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    Many years ago Garisson Cottrell did a satirical take on cognitive science by looking at dogs and hence dognitive science. A journal even had a humour section so he could publish it.
    ftp://ftp.cs.ucsd.edu/pub/guru/Dog-abstracts/

    Maybe some medical journals need a humour section!
    Valentijn likes this.
  18. alex3619

    alex3619 Senior Member

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    Oh, a little bit like this perhaps? http://forums.phoenixrising.me/index.php?entries/the-doggy-treat-model-of-why-it-is-so.830/

    Satire can reach people that other methods cannot.

    A medical humour section! Gosh no, it would make them look too much like Readers Digest! ;)
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    *sings, with apologies ot Tony Basil*
    :alien:

    original
  20. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    The theme song for our plight? :p

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