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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Please post here if you're a medic who thinks CFS is primarily psychological!

Discussion in 'General ME/CFS News' started by Esther12, Mar 26, 2010.

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  1. Koan

    Koan Be the change.

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    Marvelous post, Mr. Kite. I don't know that you and I would interpret postmodernism similarly - nor do I know that we would not - but you have outlined the current problem in a way I have longed to be able to do.

    Bravo, Sir!
     
  2. starryeyes

    starryeyes Senior Member

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    Brenda - this isn't happening to us because some people in the world are atheists.
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Esther, I understand your goal was with pure intent. I am sorry some have attributed malicious motives to you. It is this extremism and extra-sensitivity, even statements of wanting others to experience harm, that has just added fuel to the psycho doctors.

    Reasoning and debate on evidence came up against bitterness from suffering. Logic vs feelings, as was explained before.

    I for one prefer the reasoning debate.

    There is plenty of evidence of biological abnormalities in CFS:
    low cortisol
    Light's study results with abnormal gene reactions to exercise
    Kerr's study showing abnormal gene reactions
    High cytokines
    Low and deformed Natural Killer Cells
    Sympathetic nervous system stuck in on, not enough parasympathetic system
    Sleep stage abnormalities, not enough stage 3 and 4
    White dots on brain scans
    Mitochondria abnormalities
    Too much lactate in the brain
    Latent viruses reactivated
    Higher incidence of Sjorgen's, MVP, POTS, OI, etc.

    And this is just off the top of my head.

    All of these studies have been published. There are not claims made on T.V.

    The problem is that today's doctors follow the mind-body connection. I agree with a mind-body connection. But the problem is what is the first cause? Since emotions and thoughts affect the body, then the psycho doctors can take all the biological evidence and claim it is the result, not the cause. They can say the cause starts with the mind.

    I do not believe this. I believe the first cause is biological: either retrovirus or central nervous system dysfunction because it was weak at birth- likely genetics but possibly environmental factor when a child.

    So Klimas, WPI and the like are going upstream in the biology to see what the first cause is.
    The Wesseley's and Whites are going upstream in the mind to see if they can find the first cause.

    I say they both are factors, but the first cause and much of the factors contributing to the chronic disease state are biological dysfunction.

    So I see the point of the issue being raised. I would have enjoyed it if you could have gotten a psycho doctor to participate, but I would be extremely shocked such a doctor would jump in this hostile environment, for what point? What good would it do them? From their perspective, we are all borderline delusional. You can't reason with the unreasonable, in their minds.

    Same evidence can be turned either way.

    So we just have to wait until more evidence comes forward. Take comfort you all, it may be coming real soon.

    Tina
     
  4. Sing

    Sing Senior Member

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    More Appreciations

    Thank you, Esther, for responding to my post above. Your point of view and interest have not disturbed me at all. I think I see your purpose and feel it IS constructive.

    Mark, I like your further thoughts about getting these leaders-in-the-field on record in answering a set of questions we generate, but in another context than this forum. (I also really appreciate your praise for what I'd added in my post, as I was venturing into a new angle on the whole discussion.)

    Gerwyn, I think you are accurate in thinking "the psychos" have already made themselves clear in the public record as to what they think. I also liked your idea that the problem is not that having such a discussion with them would be "letting the wolf into the sheep pen" as it would be "letting in a wolf in sheep's clothing."

    Brenda, Mr. Kite and Koan all are moving the thinking here into a further realm of consideration, trying to critique it from a larger view. This is interesting to me, as well.

    Tina, you've brought it all together, for me. I am agreeing with you.

    Sing
     
  5. Mithriel

    Mithriel Senior Member

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    The psychological point of view is just plain wrong. No debate needed no opinions. It is as inaccurate as the idea that malaria is caused by bad air.

    Their idea that the mind causes illness has been tested, tested, tested and shown wrong every time. Charcot's performers were epileptic, hysterical paralysis is MS, Parkinson's disease, the list goes on.

    Illness did not happen when we evolved thought. All animals, all plants, all bacteria get infections. There are probably viruses that have viruses. Parasites have evolved with us and are very efficient.

    We can't think ourselves a new leg.

    Behavioural interventions can help some diseases of perception - I am not anti psychiatry or even psychology. Phobias respond well and even counselling to help us cope with devastated lives could help us, but our thoughts cannot cause our disease.

    Mithriel
     
  6. Koan

    Koan Be the change.

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    This is my swan song on this thread. Mithriel has said everything that needs saying!

    Peace out,
    Koan
     
  7. Esther12

    Esther12 Senior Member

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    One problem with e-mailing off questions like Cort’s, is that I think that it would be difficult for us to get a clear understanding of their answers without some sort of ongoing discussion. It could still be worth trying to put something like this together, but I don’t think it would be able to provide the depth of understanding that a real discussion would (not that we’re likely to get that).

    I was never actually interested in having a debate here - I was more interested in trying to learn about their views and why they think they're justified. Hopefully we'd be able to explain our concerns in greater detail, and see how the psychologisers respond - but I think that they have such little respect for us that it would be difficult to engage in any real debate. I don't think they'd be remotely interested in doing so. As none have responded, maybe they’re not interested in presenting their ideas here either (or maybe they’ve self-censored out of deference to some member’s concerns?)

    I've got to say - on a TV debate, I think Wessely would beat most CFS advocates. He is a good communicator, and very capable at presenting that likable academic bright-but-self-depreciating air that makes people instinctively trust him and what he's saying. A short-ish TV debate would suit him perfectly.

    I think I agree.

    I don’t think I agree with some of this.

    I think that some of the blurring of the distinctions between psychological and physical illness in CFS is a rather dishonest attempt to back away from earlier claims about the psychological nature of CFS. I also think that there isn’t a clear cut division between organic and psychological illnesses. That doesn’t mean that there is no division, or that these terms have become meaningless, but it’s undeniable that our minds affect and are driven by our brains and that our brains have other organic affects upon our bodies. I don’t think this is necessarily a post-modern concept either (other than in the sense that our understanding of the way our brains operate has taken off in the latter half of the twentieth century).

    I’m quite keen to ask them the definition of every word they use!

    ? Modernism was more of a secularising movement than a Christian one. As was the Enlightenment before, and Post-Modernism after.

    I agree that a clear understanding of CFS will not necessarily remove all the problems we face, but it would still be nice to have.

    I disagree with this. I think Wessely has adopted some post-Modernist understandings of medicine, though not the caution that I would have expected to go along with them. I think that his is sceptical of the scientific processes ability to understand CFS, and that helps justify his own pragmatic emphasis upon rehabilitation over continued biological research.

    Thanks Tina. I agree with a lot of what you say and it seems likely to me that the first cause for CFS is biological too. Hopeful some of the work you mentioned will lead on to a greater understand of the condition soon.

    Isn’t it nice that this thread has turned sweet? Ta Sing.

    If it was that clear cut I don’t think we’d be in such a mess.

    There has been a long history of serious illness being treated as psychological conditions in order for the medical community to move responsibility onto their patients. That this re-occurring problem never seems to lead to any medical professional being held accountable, and that so little work has been done trying to understand and resolve what seems to be an institutional prejudice certainly serves to further undermine any trust we could have in those who want to claim CFS is a primarily psychological condition – especially given their history of mistakes specific to CFS and the apparent weakness of the evidence they have to support their claims.

    But it’s not the same as saying we can think ourselves a new leg. It is an understanding of CFS which still has a lot of supporters and influence, and it’s something I’d really like to talk over with one of those supporters.
     
  8. Gerwyn

    Gerwyn Guest

    postmodernism is nothing but a label of convenience.There is no objective relationship between a linguistic term and what it attempts to describepostmodernism only exits as a phillosphical perspective which should not be confused with reality.
     
  9. Marco

    Marco Old blackguard

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    Near Cognac, France
    Postmodernism.

    Postmodernism is the new modern - or the new ancient.

    Hate the term. Too often used by vaccuous media luvvies to add pseudo-intellectual weight without really understanding what it means. But the term has cropped up here before, usually when any mind-body issues are being discussed.

    But while we're on the subject; assuming that modernism refers to the scientific process beginning with the enlightenment, in contrast to the preceding eras of faith and superstition, then 'modern' medicine could be conceived as considering the mind and body as similar but seperate machines. Post-modernism can be seen as a rejection of this mechanistic reductionist view and a return to older holistic approaches to illness and health.

    I think not. Recent approaches to understanding the mind and cognition have shown that the 'mind' or cognition is not restricted to the central, peripheral and autonomic nervous systems, but that 'cognition' is distributed throughout the body down to the cellular level. Gut feelings literally precede the intellectual experience of emotions.

    It is not 'post-modernist' scepticism that has arrived at this knowledge but the 'modernist' scientific method. Slightly ironic however that the scientific method has taken 500 years to come around to the thinking of empirically derived ancient philosophies that neither distinguished between mind and body or matter and energy (vis quantum physics).

    Enough lay philosophy. ME/CFS feels physical to me. While I am fully open to the possibility that psychological factors can help precipitate and maintain illness I also believe that there is an organic illness there. I do not believe that psychological factors can explain the range and depth of symptoms. I do feel there are certain tools we can use to cope better with the illness but I've yet to be convinced any psychological or meditative approach can cure it.

    Likewise I'm open to the possibility that, even if XMRV or other pathogen is found to be IT, there may be (possibly even must be) other interacting factors that explain why some develop ME/CFS and some don't. Part or all of these factors may be psychological.

    I don't think its because of any 'modernist/post-modernist' issues that we can't have a rational debate with the psych lobby. I think its simply because psychologists and psychiatrists think as psychologists and psychiatrists and will try to hypothesise a psychological explanation where there is enough room left to do so. Unfortunately with ME/CFS, the evidence is so varied, diffuse and probably not widely enough dissemminated that it allows the psych lobby to join in. Its often said that the psych lobby don't mess with cancer or other proven organic diseases. True, they don't/can't propose that cancer is psychological but check the number of papers on psychological factors that predispose to illness and help or hinder remission and recovery.

    I can see where Esther is coming from to an extent. I recognise a little of her approach in myself. Personally I find it hard to ignore hypocrisy, cant, sloppy thinking or downright lies in any form and also dislike any form of censorship that stifles debate. This sometimes blinds me to the sensitivities of others and often makes me debate a point of detail to the detriment of broader strategic issues. Sometimes it leads to an overextension of ones 'personal space' to the extent that any perceived deviation from 'the truth' is taken personally. Unfortunately we live in a far from ideal world and while such a principled black and white approach is necessary and useful, sometimes its not.

    In short, I don't believe there is scope for a worthwhile debate with the psych lobby while there remain the opportunity for them to suggest that the 'cause' of ME/CFS is psychological, and probably not even when a pathogen is found, as, after all, the aim is rehabilitaton. As for Esther's personal (and quite legitimate) curiosity, if she had the time and inclination, she could consider the extent to which the reputable documented physiological findings could be caused by psychological factors. This isn't trite or an attempted brush off. Stress, especially long-term, can have quite profound physiological effects and taken to the extreme, as in the case of spawning salmon, kills - hence dubbing cortisol the 'killer hormone'.

    Might be an interesting intellectual exercise while we wait for the definitive smoking gun.
     
  10. free at last

    free at last Senior Member

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    Hi Esther and all

    No the evidence may not be as clear cut as we belive, ( but then again others will argue infact it is )
    But i certainly noticed the reaction of the media and even doctors when the first wpi science paper came out, Disbelief was there reaction, how could this be true, you mean these folks are actually really sick, its not just all in there minds. You could see there reactions were WOW, WOW, and WOW again. But of course it was tempered by, we still need to have this confirmed comments.

    I could see a clear and distinct change in attitudes with this evidence. But after a few failed attempts to look for the virus, in a couple of suspect studys, ( possibly one good one ) Hey back to work as normal in the morning. Just pathetic, it really is. Of course Scientific evidence is the only way to beat this stranglehold the Goverment and ( puppet shrinks in there pockets ) have on you all, its more conveniant for them, its cheaper, Do you really belive your going to change all that by converting a couple of middle of the road Shrinks into seeing things our way lol.

    The die hards, the ones with the real power over medical research adviseing to the goverment are not going to change there minds unless its forced on them by such undeniable Scientific evidence, that they choke on there toast and coffee in the morning when they read WPI finds UK patients have it too. In the morning paper

    Of course they will say its contamination or some other excuse to get ther beliefs back on track. But hey they still choked on there toast for a second there didnt they.

    If that evidence arises, Scientists like Kerr might jump back on board, others would surely follow. They would really want to know what the heck is going on at this point, would they not.

    I posted a comment awhile ago about how many positive UK patients have tested positive in this country that any of you know about, (If im mistaken i apologize) But didnt get one single response to that question. Why do you think i asked that question ? Because if its proven the WPI is not making any kind of seriouse errors, ( which is going to happen sooner or later if there not ? ) then we know those 2 uk studys are flawed. And basically even with a 15 positive count, kind of somewhat proves it doesnt it. We should be telling the media this info, getting them on our side the way the other half does. But do we, No we just go silent with the information we do have to help fight back against this attitude.


    Who rose to the bait on that one loL. As far as i can see, for all your super intelligence on this forum, ( and im not even in the same intelligence camp as most on here ) seems like your all debating over the little nity grittys here.

    When infact you could be going for the throat. Its just plain weird if you ask me.

    I dont mind if im seen as a trouble maker, or millitant, or stupid ,or not completely clued up, or whatever. But i know id rather let my heart speak the truth, than a thousand clever words and arguments getting you all absolutley no where.

    We have so much proof, and its growing, use that as best we can, you can all debate untill next week if ya like. But i know youll still be doing it next year, if the judy Ms dont prove there point.

    But you might have a couple of on the fence Shrinks with ya at this point saying, YOU KNOW WHAT THEY GOT A POINT jOHN lol.

    Good luck guys it just breaks my heart seeing you all go round and round and round, Shall i go on.

    We should be writing petitions to the goverment ( forgive me if some already have ) and trying to get law suits to bring those responsible to hearing for the shamefull sectioning of SOPHIA MIRZA who apparently had her cause of death stated as ME on her certificate ( again forgive me if some have tried ) But im new here, I dont really know what has been happening in great detail, so if im wrong then im sorry ok.

    But i bring this Girls name up here, and silence. Ok maybe im like the black sheep or something and its a subtle way of saying, sorry we dont appreciate emotional millitant angry negative types with questionable understanding of the subject on our beloved forum. I probably wont be around here to long, either ill getr kicked off, ( which hurts me even more thinking that ) or ill get used to my words being lets say overlooked. Good luck everyone think you need to use what you have to fight back. and i dont think its emailing a couple of shrinks. really i dont. who knows maybe your right. I may not be as ill as i once was, but my mind is still seeing the wrongs being done 15 years later, and i hate it, its wrong, always has been, always will be. Somebody else is going to die soon. It sickens me. Sod it ill write to the health minister myself about Sophia, Dont care if its ignored. Proffessor hooper i like him. great chap. I like being emotional it cuts through the crap, But leaves me looking a little unstable i suppose. tough do doos on me i guess. to post or not to post this is the thought. been here berfore GRIN please try not to hate me, i might just have paid my dues as much as the next person
     
  11. Sing

    Sing Senior Member

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    Are you kidding, free at last? I loved the passion and truthfulness of your post. Go ahead; you're entitled to your point of view!

    Sing
     
  12. Lily

    Lily *Believe*

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    I loved it too, and PMed my sentiments:D
     
  13. Koan

    Koan Be the change.

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    Looks like this swan is still singing: Me three, FreeAtLast!

    Peace out,
    Koan




    PS: There is, not surprisingly, no consensus here on just what postmodernism is. Doesn't matter. Just saying.
     
  14. JPV

    JPV Senior Member

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    So... how about them Dodgers?
     
  15. Lily

    Lily *Believe*

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    LOL, JPV. Wanna make a pact to stop looking at this thread? I will if you will:D

    No offense, but your avatar is scary to me:worried:. I'm becoming somewhat desensitized though as time goes by;)
     
  16. laura

    laura Senior Member

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    thoughts from a psychotherapist

    I am coming to this discussion a little late, but I wanted to add my two cents.

    I am a PWC and a licensed psychotherapist. I am not an expert in the CBT research as it relates to CFS although I am familiar with it.

    I just want to share my experience.

    Confession: As a psychotherapist, and as a spiritual person, I believe very strongly in the mind-body-spirit connection. I am very aware of the effect that my mental/emotional/spiritual states of being have upon my physical health.

    BUT: It can be overstated. There is some research to prove positive thinking can help with colds, and possibly heart diseases. And we all know about the placebo effect. However, there is a lot of research that shows it has minimal effect on a number of other diseases, such as various cancers. There is an article in the recent issue of the magazine Psychotherapy Networker that highlights the lack of substantial scientific evidence for the entire "field" of positive psychology.

    I don't blame people who have a strong negative reaction to CBT. I do believe CBT was initially considered for CFS because of a belief CFS has a psychological foundation. CBT is not a medical intervention for physical illness, it is a psychological theory, with associated interventions, for psychological distress. CBT is currently the "in" theory in the psychology research world because the interventions are highly structured and concrete, which makes them easy to research. And governmental agencies concerned with mental health love to pay for research and applied techniques that are structured and concrete.

    So underlying the research around CBT and CFS is the belief that there is a psychological element to CFS. The belief would be that by using CBT, patients can change their thoughts (and behaviors), to be more positive --"realistic," in CBT language and thereby eliminate the supposedly psychosomatic symptoms.

    Confession: Rightly or wrongly, I believe that anyone who is 100% cured by something like the amygdala training, which to my understanding is simply a re-packaging of already known psycho-spiritual techniques, never had CFS.

    Personally, being so mind-body oriented, I did not believe my diagnosis of CFS for a full 6 months afterwards. I figured the doctor was just trying to get me out of the office, because the blood work was inconclusive. I told myself, I'm just not eating right. I'm not exercising right (!), I need to take care of myself, be good to myself, reduce my stress load, etc. etc. I tried all kinds of psycho-spiritual healing techniques.

    It was only after all of that failed to cure me, combined with receiving a good talking-to by a caring friend, that I began to consider that maybe I did indeed have a physical illness.

    Truly, it would be so much easier if all this were psychological! Then I could control it, as there are many therapies that address emotional issues. Instead, I have a chronic physical illness for which there is no cure.

    I want to be clear that I do believe there is a place for CBT, the amygdala training, and other therapies that address the mental/emotional/spiritual aspect of living with a chronic illness. For myself, I know that maintaining attention on my psycho-spiritual health has helped me to better live with the CFS, helping me to function despite my symptoms, reducing stress, improving mood, and (on a good day!) helping me to find meaning in the challenge of living with a chronic physical illness.


    I wish for all of us that we not only survive but thrive, despite the CFS. And that a cure is found, soon!

    Laura
     
  17. Dr. Yes

    Dr. Yes Shame on You

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    Bert, scary?? Bert's not scary.

    Now Peter Cushing.. he was a bit scary.

    Ooh, I just had a great idea for a new avatar! But it's not as sexy as the current one. Nor cute like the one before. So just bear in mind that whatever you may see there soon, I am in reality sexy AND cute.

    Thank you.


    ETA - hey, looks like you cut in front of me in line, Laura! I don't usually stand for that. But your post actually has good points (not to mention a point, period). Impressive!
     
  18. Lily

    Lily *Believe*

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    Yes, I KNOW Burt shouldn't be scary....lol...I guess it has something to do with context. Can't wait to see your next avatar, Dr Yes!!

    ETA: You know, I find that doll of Suzy's a little creepy too.......OH NO!!!! Maybe I had a traumatic childhood that I don't remember!!!!! OH NO!!!NO!!!!NO!!!!! Maybe childhood trauma IS the reason for my CFS!!!!!!!!!!!! OHHHHHHHHHHH

    SHOOT. ME. NOW.!!!!!!!

    lolololol....
     
  19. starryeyes

    starryeyes Senior Member

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    okay Dr. Yes, but it better be as good. :)

    I loved the Peter Cushing avatar. I didn't know who he was and I thought he really was JPV until my hubby said we couldn't put him in the video because he's copyrighted. I keep hoping you'll go back to that Avatar. He fits your personality better JPV and makes everything you say seem cooler. lol :)
     
  20. _Kim_

    _Kim_ Guest

    ...as verified by this scientifically validated instrument.
     
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