Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 It seems to me that a big part of the problem in regards to perceptions about the amygdala retraining is the entrenched idea about " psychological treatments. " IE: " I have a physiological illness. This treatment implies it's all in my head. Therefore, this treatment is wrong, and should be panned. " I'm sorry...but this is simplistic and self-defeating. Considering the merits of treatments must be a case-by-case thing, not reactively lumping them into a basket labelled " psychological " at the first hint of language you are suspicious about. This is a fixed, defensive mindset which means anything in this realm is instantly derided. It is akin to not listening to someone's ideas because they are of different political/religious persuasion, rather than having an open mind and engaging with what they say. Surely the only criteria that matters is how effective a treatment is. Surely the only way you can seriously critique a treatment is through having actually engaged with it. Seriously- can anyone deny that the " wired but tired " phenomena, coupled with things like disturbed sleep, inability to handle stress, anxiety and sensitivity to noise, light, odours, and chemicals, to name just a few symptoms, is a common theme for CFS sufferers? How may people who have tried meditation or relaxation exercises report that they are helpful? To be helped by something that acts powerfully to soothe the central nervous system, thereby helping the whole gamut of symptoms, does NOT make a condition any less real, or any less physiological. On the other side of the ledger, how many people who slam something like CBT have actually tried a professionally administered CBT programme? I must add here, instantly, that (just in my opinion) I suspect CBT is only going to be of limited use to a limited number of people, and probably only then in terms of helping with outlook and coping with a chronic illness. My point is more that people stand back and slam things based on superficial ideological notions, rather than really looking into them and/or trying them. As for this whole physiological/psychological false dichotomy: I'm sorry, but people need to banish the notion that " psychological " interventions can't help with physiological illnesses. I am stating without a shadow of a doubt that CFS has a fundamental, physiological basis. I am also positive that huge improvements can be made by addressing brian/central nervous system dysregulation, and that this could, conceivably, be achieved in all sorts of ways. Deciding that the amygdala is the particular culprit might be arbitrary and purely theoretical, but that's of little relevance. The programme is still geared to be a circuit-breaker to adress a hyper-sensitive CNS, no matter what brain structure you want to point the finger at. Operating at a purely conscious level with practical advice about thought patterns (say CBT) is unsophisticated and will probably be of little use to most (in my opinion) but there is so much more out there. Re the potential power of such treatments. I read a fascinating story about a Sydney hospital that introduced a properly run meditation programme. One patient (a 20 yr old male) that attended had previously suffered from viral encephalitis (ie viral infection of brain tissue), leading to severe, recurrent epileptic fits. {Epilepsy is a clinically well-recognised complication of brain infection} Prior to attending, he was suffering up to three seizures per day, a state of affairs which was obviously destroying his life. After diligently applying the meditation techniques he was taught at the clinic, he improved to the extent that he had not had a seizure for a month when the article was written, and his whole outlook re the future had been transformed. Would anybody argue that severe epilepsy, caused by a viral infection of the brain, is anything other than the most physiological of illnesses? I'd suggest that post-viral, hyper-stimulation of the brain (in this case epilepsy) is extremely relevant to many of us. (It's noteworthy, if you're into drugs, that many CFS sufferers get relief with anti-convulsants such as Neurontin, Lamictal etc) I'm getting off my pulpit now. I think that these types of treatments are far more worthy of consideration than the mind-numbing array of vitamins, nutritional supplements etc that propose to cleanse, detoxify, transmogrify or defeat the hordes of mysterious bacteria, viruses or parasites that (apparently) CFS sufferers are cursed with. Where is the reactive scorn and derision when people post the lists of these treatments they are dutifully pursuing, without a shred of evidence?? . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 " " <stephano@...> wrote: > > It seems to me that a big part of the problem in regards to perceptions about the amygdala retraining is the entrenched idea about " psychological treatments. " > > IE: " I have a physiological illness. This treatment implies it's all in my head. Therefore, this treatment is wrong, and should be panned. " > I'm sorry...but this is simplistic and self-defeating. Considering the merits of treatments must be a case-by-case thing, not reactively lumping them into a basket labelled " psychological " at the first hint of language you are suspicious about. > > This is a fixed, defensive mindset which means anything in this realm is instantly derided. It is akin to not listening to someone's ideas because they are of different political/religious persuasion, rather than having an open mind and engaging with what they say. > Surely the only criteria that matters is how effective a treatment is. Surely the only way you can seriously critique a treatment is through having actually engaged with it. > Aren't you being a bit overly defensive? All I said was that if mental intervention is proven to be effective, it means that mental intervention is proven to be effective. That speaks for itself. And that means that the people who have been insisting for all these years that CFSers need some mental intervention are vindicated. They tried so hard, and CFSers were so stubborn, but they kept trying to tell us to change our attitudes - I guess they deserve a really big apology. " No evidence " for the viral and bacterial infections that CFSers claim to be cursed with? Are you claiming that the evidence showing viral and bacterial infections doesn't really exist? That's news to me, but wonders never cease. If ME/CFS proves to be an illness that has no viral and bacterial infections and is effectively addressed with mental interventions, would you still categorize it as a physical illness? Don't you think it would be a bit embarrassing, after all the treatments, the research, the findings of immunological abnormalities, to learn that this illness is more effectively treated by changing one's aberrant mental " fight or flight " over-response? (The fact that some people don't have it and that others can change it to a " correct " mental response indicates that is aberrant) Still, we must keep an open mind and move forward, regardless of the consequences. Nobody wants to stay entrenched in old thinking. But won't it be sad to learn that all the people on the memorial lists, and those who have lost their jobs, ruined their lives... might have avoided it all by changing their minds? A real shocker! And won't it be a surprise?, for all those people who fought so hard to get SSDI to find out that it is going to stop, because their proven treatment is at hand, and hopefully they won't be too stubborn about accepting it, because failure to comply and get better is an indication that they aren't cooperating with the therapy. I suppose it won't do any good to tell the judge that this kind of mental retraining treatment is wrong for them, as that would be simplistic and self defeating, wouldn't it? To paraphrase Cpt. Farragut, " Damn the torpids, full speed ahead! " - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Wrote: ....................... >Aren't you being a bit overly defensive? >All I said was that if mental intervention is proven to be >effective, it means that mental intervention is proven to be >effective. That speaks for itself. Actually I was answering a range of negative responses towards the Ashok Gupta programme, not just yours. You'll note quite a few people have commented on the programme. > " No evidence " for the viral and bacterial infections that CFSers >claim to be cursed with? >Are you claiming that the evidence showing viral and bacterial >infections doesn't really exist? >That's news to me, but wonders never cease. Perhaps if you focussed a little more on actually reading and understanding posts rather than on seeing how glib/cynical you could make your responses, you'd see that I was talking about whether an infection is ongoing or not. Of course infection is implicated in triggering CFS; the debate surrounds whether continued symptoms means there is still an infection, or whether the initial insult has caused neurological/CNS dyregulation which could trigger immune responses such as sort throats, inflammation, enlarged lymph nodes etc. For example- I know someone with these type of " infection-type " symptoms prominent in her CFS who was amazed to see they were eliminated with an anti-convulsant.(IE- A central nervous system depressant) >If ME/CFS proves to be an illness that has no viral and bacterial >infections and is effectively addressed with mental interventions, >would you still categorize it as a physical illness? Again- Did you actually read what I wrote? My points concerning this question are crystal clear. By all means disagree, but there's not much point in continuing if you're not actually addressing what I said. >Don't you think it would be a bit embarrassing, after all the >treatments, the research, the findings of immunological >abnormalities, to learn that this illness is more effectively treated >by changing one's aberrant mental " fight or flight " over-response? >(The fact that some people don't have it and that others can change >it to a " correct " mental response indicates that is aberrant) >Still, we must keep an open mind and move forward, regardless of the >consequences. Nobody wants to stay entrenched in old thinking. >But won't it be sad to learn that all the people on the memorial >lists, and those who have lost their jobs, ruined their lives... >might have avoided it all by changing their minds? >A real shocker! >And won't it be a surprise?, for all those people who fought so hard >to get SSDI to find out that it is going to stop, because their >proven treatment is at hand, and hopefully they won't be too stubborn >about accepting it, because failure to comply and get better is an >indication that they aren't cooperating with the therapy. >I suppose it won't do any good to tell the judge that this kind of >mental retraining treatment is wrong for them, as that would be >simplistic and self defeating, wouldn't it? I wonder why you feel the need to incorporate a constantly mocking tone? It's a bit childish and undermines any legitimate points you might otherwise make. This, coupled with the fact that you completely fail to actually address the points I was making makes any dialogue seem a bit pointless. At any rate, I'll try again. I have already put forward an argument for the range of test anomalies that people (including me) have. I am saying, in my opinion, there is a good chance they are a " downstream " phenomenon, and the primary problem is a central, neurological one. I was quite explicit about stating CFS is an illness with a physiological basis. My point was that sophisticated treatments aimed at addressing neurological dysregulation could be very effective. If you choose to interpret that perjoratively and simplistically as people just needing to " change their minds " then that's your prerogative....but it's lazy and it totally misrepresents what I am saying. Try a bit harder. I specifically pointed out that I thought CBT was unsophisticated and unlikely to do much beyond helping with coping tactics and outlook. I then gave an example of what something else, a diligantly applied meditation programme, working beyond the conscious mind, had achieved. My whole point, and again I think it was very clear, was that you can't just lump all these types of treatments into one " psychological " basket with all the negative connotations that go with it. It has to be case by case. If a Wessely tells you to " just think positive and exercise more " then he is an idiot. If someone else says there's a physiological problem involving an over-sensitised central nervous system and I think my programme can help by addressing that with techniques involving such things as meditation, hypnosis, etc etc, then I would say it's worthy of consideration. At the very least, I think that concept of the illness mechanism has a lot of validity for a lot of people, irrespective of how effective the treatment turns out to be. Certainly, other researchers such as Goldstein and Cheney have conceptualised the illness in these terms. Please feel free to disagree, but please do so by actually addressing the specific things I'm saying. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 I find it interesting that the various " health insurance " companies often are not willing to pay for basic testing for the various viruses, (at least that is what a Cigna document I saw yesterday said) but that if a person paid for them on their own and they showed definitively that someone had something that then they would treat it. I think their reluctance is a function of the cost and possibility that a patient would have to take ten or fifteen tests before perhaps finding the right virus or infection or whatever. (given that doctors often refuse to listen to what the pateint says about probable causes) and that SIMPLY BUNDLING ALL OF THE BLOOD TESTS TOGETHER with one blood draw for the whole shebang, would solve a LOT of that problem. Instead, perhaps they steer the patient to psychiatrists hoping that the patient will just give up, go away and die. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 `Based in New York, Dr Diamond is a founding member of The Royal College of Psychiatrists. In an extract from his recent book (Facets of a Diamond 2003) in the October 2003 issue of the journal “What Doctors Don’t Tell Youâ€, Diamond says “I am no longer a psychiatrist. I renounce it because I believe cruelty is at the core of the profession (and) I believe that there is something inherent in the profession that tends to bring out any cruelty lurking within. I have long wondered why this profession --- which ought to be so compassionate – has, it seems to me, turned its back on humanityâ€. I am thinking that some psychiatrists have chosen this profession because of their narcissism.Some narcissists who enjoy seeing weakness of others,like playing with others and who are cruel are unconsciously preferring this profession.It is a best place for a narcissist to obtain his/her `narcissistic supply`. Psychiatry is a profession which requires a lot of love. These narcissists lack love.Narcissists many times are not aware of their problems so I think every student who wishes to study psychiatry should be allowed there after taking a personality disorder test.Someone who is going to treat behavioral disorders need to be free of those disorders at least to a certain extend.When narcissists are eliminated from this profession it may turn towards humanity. ps: don't know Wessely. I am talking in general. bw Nil Re: The CFS sufferer's psychology concerning " psychological " . I find it interesting that the various " health insurance " companies often are not willing to pay for basic testing for the various viruses, (at least that is what a Cigna document I saw yesterday said) but that if a person paid for them on their own and they showed definitively that someone had something that then they would treat it. I think their reluctance is a function of the cost and possibility that a patient would have to take ten or fifteen tests before perhaps finding the right virus or infection or whatever. (given that doctors often refuse to listen to what the pateint says about probable causes) and that SIMPLY BUNDLING ALL OF THE BLOOD TESTS TOGETHER with one blood draw for the whole shebang, would solve a LOT of that problem. Instead, perhaps they steer the patient to psychiatrists hoping that the patient will just give up, go away and die. This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 " " <stephano@...> wrote: > Perhaps if you focussed a little more on actually reading and understanding posts rather than on seeing how glib/cynical you could make your responses, you'd see that I was talking about whether an infection is ongoing or not. Of course infection is implicated in triggering CFS; the debate surrounds whether continued symptoms means there is still an infection, or whether the initial insult has caused neurological/CNS dyregulation which could trigger immune responses such as sort throats, inflammation, enlarged lymph nodes etc. For example- I know someone with these type of " infection-type " symptoms prominent in her CFS who was amazed to see they were eliminated with an anti-convulsant.(IE- A central nervous system depressant) > Quote: " Somehow, any intervention that has any perceived 'psychological' elements isinstantly deemed to be useless, false and heretic by the zealots. How on earth can you know this? How can you be certain? Certaintly is based on a mindset, namely, " I have a physical illness, so what good are treatments that intervene in a psychological way going to be. " But....... this is fallacious, because the physical/psychological distinction is equally fallacious. Gupta's programme is just another intervention. The only way it should be judged is whether it is helpful/effective or not. Concepts of psychological v physical are totally arbitrary and of no use to anyone. " _______________________________________________________________ Yes, I read your words and they are quite clear. Your concept is that the original trigger may be gone - and the ongoing problems are an inappropriate psychological " over-reaction " . That's is the Wessely school paradigm. They use stories of recovery by psychological interventions as evidence that until all the scientific ducks are in a row, they have every right to " Help " people on the basis of " evidence based medicine " . Those of us who, in Dr Cheney's words " Have no detectable mood disorder " think that money and effort expended in this direction does not address our needs. We believe that if some people don't have the mental maladaptive behaviors that " retraining " is aimed at, this therapy is misdirected at a comorbid psychological condition, but not at the core of CFS itself. We believe that the mere existence of people who lack these maladaptive behaviors is evidence enough that they are not inherent to the physical illness. The Wessely school has been " keeping it's foot in the door " by saying that " mind/body " connections cannot be separated for purposes of research and treatment. I would say that by subscribing to the notion that the physical trigger might be gone - but that the illness is now " fight-or flight- adrenal-depletion " from a maladaptive mental state, you are booting people right THROUGH the door - into the mental clinic. Because no matter how much you insist that this is a physical illness that is kept ongoing by psychological responses - the mental clinic is where you get the corrective therapy relevant to aberrant pychological responses. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 >Surely the only criteria that matters is how effective a treatment is. Surely the only way you can seriously critique a >treatment is through having actually engaged with it. , How many lives would we need to try all therapies that have been dreamt up by the various doctors, psychologists, psychiatrists, naturopaths, homeopaths etc ? I'll only try what I have assessed as having a chance of working, can't try all and every therapy without at least having made a good educated guess at what appears to be at play, and AFAIC CBT or other psychological interventions just don't make enough sense to waste time, effort and money on. Antibiotics and antiprotozoans have saved my life not meditating not vitamins Nelly The CFS sufferer's psychology concerning " psychological " . It seems to me that a big part of the problem in regards to perceptions about the amygdala retraining is the entrenched idea about " psychological treatments. " IE: " I have a physiological illness. This treatment implies it's all in my head. Therefore, this treatment is wrong, and should be panned. " I'm sorry...but this is simplistic and self-defeating. Considering the merits of treatments must be a case-by-case thing, not reactively lumping them into a basket labelled " psychological " at the first hint of language you are suspicious about. This is a fixed, defensive mindset which means anything in this realm is instantly derided. It is akin to not listening to someone's ideas because they are of different political/religious persuasion, rather than having an open mind and engaging with what they say. Surely the only criteria that matters is how effective a treatment is. Surely the only way you can seriously critique a treatment is through having actually engaged with it. Seriously- can anyone deny that the " wired but tired " phenomena, coupled with things like disturbed sleep, inability to handle stress, anxiety and sensitivity to noise, light, odours, and chemicals, to name just a few symptoms, is a common theme for CFS sufferers? How may people who have tried meditation or relaxation exercises report that they are helpful? To be helped by something that acts powerfully to soothe the central nervous system, thereby helping the whole gamut of symptoms, does NOT make a condition any less real, or any less physiological. On the other side of the ledger, how many people who slam something like CBT have actually tried a professionally administered CBT programme? I must add here, instantly, that (just in my opinion) I suspect CBT is only going to be of limited use to a limited number of people, and probably only then in terms of helping with outlook and coping with a chronic illness. My point is more that people stand back and slam things based on superficial ideological notions, rather than really looking into them and/or trying them. As for this whole physiological/psychological false dichotomy: I'm sorry, but people need to banish the notion that " psychological " interventions can't help with physiological illnesses. I am stating without a shadow of a doubt that CFS has a fundamental, physiological basis. I am also positive that huge improvements can be made by addressing brian/central nervous system dysregulation, and that this could, conceivably, be achieved in all sorts of ways. Deciding that the amygdala is the particular culprit might be arbitrary and purely theoretical, but that's of little relevance. The programme is still geared to be a circuit-breaker to adress a hyper-sensitive CNS, no matter what brain structure you want to point the finger at. Operating at a purely conscious level with practical advice about thought patterns (say CBT) is unsophisticated and will probably be of little use to most (in my opinion) but there is so much more out there. Re the potential power of such treatments. I read a fascinating story about a Sydney hospital that introduced a properly run meditation programme. One patient (a 20 yr old male) that attended had previously suffered from viral encephalitis (ie viral infection of brain tissue), leading to severe, recurrent epileptic fits. {Epilepsy is a clinically well-recognised complication of brain infection} Prior to attending, he was suffering up to three seizures per day, a state of affairs which was obviously destroying his life. After diligently applying the meditation techniques he was taught at the clinic, he improved to the extent that he had not had a seizure for a month when the article was written, and his whole outlook re the future had been transformed. Would anybody argue that severe epilepsy, caused by a viral infection of the brain, is anything other than the most physiological of illnesses? I'd suggest that post-viral, hyper-stimulation of the brain (in this case epilepsy) is extremely relevant to many of us. (It's noteworthy, if you're into drugs, that many CFS sufferers get relief with anti-convulsants such as Neurontin, Lamictal etc) I'm getting off my pulpit now. I think that these types of treatments are far more worthy of consideration than the mind-numbing array of vitamins, nutritional supplements etc that propose to cleanse, detoxify, transmogrify or defeat the hordes of mysterious bacteria, viruses or parasites that (apparently) CFS sufferers are cursed with. Where is the reactive scorn and derision when people post the lists of these treatments they are dutifully pursuing, without a shred of evidence?? . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 This is completely true. i have read that ALL serial killers are narcissists. Nobody else would do things like that. They have no conscience but they also are incredibly good at hiding this. narcissists are attracted in disproportionate numbers to professions that elicit respect and awe in others. Politics, law, the clergy, and many others have more narcissists than normal, its thought, but its hard to estimate their numbers because they NEVER seek professional help. I have personal experience with narcissists and its not something that I would wish on anybody. They define evil. Don't ever turn your back on them, they will stab you in it. Really, they leave a trail of broken lives and dreams behind them. They can't feel. Promises mean nothing to them. They see compassion in others as a weakness to be exploited. They are the people who can and will NEVER admit that they are wrong. Some of the leaders of the worst disasters in history have been narcissists. they typically had terrible childhoods with distant and abusive parents. That period from age five to age seven or eight is a crucial time for personality development and most narcissists have been deprived of love and security at that crucial time. thats why early childhood education is so important. fascism is a sort of narcissistic end state, really all totalistic organizations are run by narcissists. Others would call them 'cults'. Cults will bring ruin on all in them and others rather than allow themselves to be exposed. Sometimes nations can be engaged in cultlike behavior too. When their reality distortion fields fail, they fail catastrophically. Never love somebody who can't love you back. On Jan 14, 2008 11:09 AM, Nil <yildiz22@...> wrote: > > `Based in New York, Dr Diamond is a founding member of The Royal > College of Psychiatrists. In an extract from his recent book (Facets of a > Diamond 2003) in the October 2003 issue of the journal " What Doctors Don't > Tell You " , Diamond says " I am no longer a psychiatrist. I renounce it > because I believe cruelty is at the core of the profession (and) I believe > that there is something inherent in the profession that tends to bring out > any cruelty lurking within. I have long wondered why this profession --- > which ought to be so compassionate – has, it seems to me, turned its back on > humanity " . > > I am thinking that some psychiatrists have chosen this profession because > of their narcissism.Some narcissists who enjoy seeing weakness of > others,like playing with others and who are cruel are unconsciously > preferring this profession.It is a best place for a narcissist to obtain > his/her `narcissistic supply`. Psychiatry is a profession which requires a > lot of love. These narcissists lack love.Narcissists many times are not > aware of their problems so I think every student who wishes to study > psychiatry should be allowed there after taking a personality disorder > test.Someone who is going to treat behavioral disorders need to be free of > those disorders at least to a certain extend.When narcissists are eliminated > from this profession it may turn towards humanity. > > ps: don't know Wessely. I am talking in general. > > bw > > Nil > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Spoken like someone who has lived it. Amen. I truly know and agree with what you are saying. - Khaly LiveSimply <quackadillian@...> wrote: This is completely true. i have read that ALL serial killers are narcissists. Nobody else would do things like that. They have no conscience but they also are incredibly good at hiding this. narcissists are attracted in disproportionate numbers to professions that elicit respect and awe in others. Politics, law, the clergy, and many others have more narcissists than normal, its thought, but its hard to estimate their numbers because they NEVER seek professional help. I have personal experience with narcissists and its not something that I would wish on anybody. They define evil. Don't ever turn your back on them, they will stab you in it. Really, they leave a trail of broken lives and dreams behind them. They can't feel. Promises mean nothing to them. They see compassion in others as a weakness to be exploited. They are the people who can and will NEVER admit that they are wrong. Some of the leaders of the worst disasters in history have been narcissists. they typically had terrible childhoods with distant and abusive parents. That period from age five to age seven or eight is a crucial time for personality development and most narcissists have been deprived of love and security at that crucial time. thats why early childhood education is so important. fascism is a sort of narcissistic end state, really all totalistic organizations are run by narcissists. Others would call them 'cults'. Cults will bring ruin on all in them and others rather than allow themselves to be exposed. Sometimes nations can be engaged in cultlike behavior too. When their reality distortion fields fail, they fail catastrophically. Never love somebody who can't love you back. On Jan 14, 2008 11:09 AM, Nil wrote: > > `Based in New York, Dr Diamond is a founding member of The Royal > College of Psychiatrists. In an extract from his recent book (Facets of a > Diamond 2003) in the October 2003 issue of the journal " What Doctors Don't > Tell You " , Diamond says " I am no longer a psychiatrist. I renounce it > because I believe cruelty is at the core of the profession (and) I believe > that there is something inherent in the profession that tends to bring out > any cruelty lurking within. I have long wondered why this profession --- > which ought to be so compassionate – has, it seems to me, turned its back on > humanity " . > > I am thinking that some psychiatrists have chosen this profession because > of their narcissism.Some narcissists who enjoy seeing weakness of > others,like playing with others and who are cruel are unconsciously > preferring this profession.It is a best place for a narcissist to obtain > his/her `narcissistic supply`. Psychiatry is a profession which requires a > lot of love. These narcissists lack love.Narcissists many times are not > aware of their problems so I think every student who wishes to study > psychiatry should be allowed there after taking a personality disorder > test.Someone who is going to treat behavioral disorders need to be free of > those disorders at least to a certain extend.When narcissists are eliminated > from this profession it may turn towards humanity. > > ps: don't know Wessely. I am talking in general. > > bw > > Nil > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 I concur with your point that the results are what matters. I also beleive that there is no dichotomy of mind and body. IMHO CFS is an illness with real physical effects/stronghods. However I for one will not let any treatment that shows promise go untried. Stress makes me worse, because it creates NO. Why am trying Gupta's protocol? I believe that Dr. Pall is on to something with his theory. I believe that Gupta's goal of reducing an overstimulated CNS might farther reduce NO production and its sequale. I see Dr. Pall's and Gupta's treatment as complementary. Attacking the problem of excess NO by suplements that cancel them (Dr. Pall) and by protocols that may reduce its excesive production by calming the CNS. All just a belief based on my understanding of Dr. Pall book. I only try protocols based on a benefit/cost ratio after I determine that at least a few have been greatly helped. Dr. Pall and Gupta both claimed to be in 100% remision for years. I think that is GREAT. Someone is getting 100% better!!!!! For more that a decasde I NEVER heard of such things (PWC for 15 years) I want to be next in the 100% remission for years club! I just need to put the time and get past lesson one of Gupta's! > > It seems to me that a big part of the problem in regards to perceptions about the amygdala retraining is the entrenched idea about " psychological treatments. " > > IE: " I have a physiological illness. This treatment implies it's all in my head. Therefore, this treatment is wrong, and should be panned. " > I'm sorry...but this is simplistic and self-defeating. Considering the merits of treatments must be a case-by-case thing, not reactively lumping them into a basket labelled " psychological " at the first hint of language you are suspicious about. > > This is a fixed, defensive mindset which means anything in this realm is instantly derided. It is akin to not listening to someone's ideas because they are of different political/religious persuasion, rather than having an open mind and engaging with what they say. > Surely the only criteria that matters is how effective a treatment is. Surely the only way you can seriously critique a treatment is through having actually engaged with it. > > Seriously- can anyone deny that the " wired but tired " phenomena, coupled with things like disturbed sleep, inability to handle stress, anxiety and sensitivity to noise, light, odours, and chemicals, to name just a few symptoms, is a common theme for CFS sufferers? How may people who have tried meditation or relaxation exercises report that they are helpful? To be helped by something that acts powerfully to soothe the central nervous system, thereby helping the whole gamut of symptoms, does NOT make a condition any less real, or any less physiological. > > On the other side of the ledger, how many people who slam something like CBT have actually tried a professionally administered CBT programme? I must add here, instantly, that (just in my opinion) I suspect CBT is only going to be of limited use to a limited number of people, and probably only then in terms of helping with outlook and coping with a chronic illness. My point is more that people stand back and slam things based on superficial ideological notions, rather than really looking into them and/or trying them. > > As for this whole physiological/psychological false dichotomy: I'm sorry, but people need to banish the notion that " psychological " interventions can't help with physiological illnesses. I am stating without a shadow of a doubt that CFS has a fundamental, physiological basis. I am also positive that huge improvements can be made by addressing brian/central nervous system dysregulation, and that this could, conceivably, be achieved in all sorts of ways. Deciding that the amygdala is the particular culprit might be arbitrary and purely theoretical, but that's of little relevance. The programme is still geared to be a circuit-breaker to adress a hyper-sensitive CNS, no matter what brain structure you want to point the finger at. Operating at a purely conscious level with practical advice about thought patterns (say CBT) is unsophisticated and will probably be of little use to most (in my opinion) but there is so much more out there. > > Re the potential power of such treatments. I read a fascinating story about a Sydney hospital that introduced a properly run meditation programme. One patient (a 20 yr old male) that attended had previously suffered from viral encephalitis (ie viral infection of brain tissue), leading to severe, recurrent epileptic fits. {Epilepsy is a clinically well-recognised complication of brain infection} > > Prior to attending, he was suffering up to three seizures per day, a state of affairs which was obviously destroying his life. After diligently applying the meditation techniques he was taught at the clinic, he improved to the extent that he had not had a seizure for a month when the article was written, and his whole outlook re the future had been transformed. Would anybody argue that severe epilepsy, caused by a viral infection of the brain, is anything other than the most physiological of illnesses? I'd suggest that post- viral, hyper-stimulation of the brain (in this case epilepsy) is extremely relevant to many of us. (It's noteworthy, if you're into drugs, that many CFS sufferers get relief with anti-convulsants such as Neurontin, Lamictal etc) > > I'm getting off my pulpit now. > I think that these types of treatments are far more worthy of consideration than the mind-numbing array of vitamins, nutritional supplements etc that propose to cleanse, detoxify, transmogrify or defeat the hordes of mysterious bacteria, viruses or parasites that (apparently) CFS sufferers are cursed with. Where is the reactive scorn and derision when people post the lists of these treatments they are dutifully pursuing, without a shred of evidence?? > > . > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 wrote: >Your concept is that the original trigger may be gone - and the >ongoing problems are an inappropriate psychological " over-reaction " . >That's is the Wessely school paradigm. >They use stories of recovery by psychological interventions as >evidence that until all the scientific ducks are in a row, they have >every right to " Help " people on the basis of " evidence based >medicine " . ............................ I really think we need to be clear about this. I'm sorry, but to equate what I'm saying with the Wesseley school stuff is patently wrong. Wesseley et al (as I understand it) talk about utterly ridiculous things such as some sort of secondary gain from illness, 'mistaken' beliefs about physical illness etc. They basically say CFS sufferers perpetuate their illness through attitudes which are at odds with reality. EG We are supposedly unreasonably fearful of exercise so should do graded exercise etc etc. Hence the term undeserving sick....we think we are sick, but we are " really " not. CBT should push us out of our maladaptive beliefs and behaviours, thus allowing us to get on with life. How you can lump that (nonsense) in with what I'm saying baffles me. I am another sufferer, like all the rest of the list. I know it's real and I know it destroys lives. I don't need to ask anyone else about it...I can just look at the eleven plus years that I've already lost. " Inappropriate psychological over-reaction " as you put it, completely misrepresents what I am saying. Try " dysregulated neurological function " or " dysregulated central nervous system function " instead. This may or may not be a result of initial infection....and the suppressant effect disturbed CNS has on the immune system may make people more and more susceptible to future infection. As an aside- This central dysregulation can directly cause anxiety etc. You seem to have an iron-cast definition of this symptom as " psychological. " I'm telling you, with 100% certaintly, that physiological illnesses can include " psychological " symptoms as part of the illness. Not just 'reactive' and not just 'co-morbid'. If you don't believe that then you need to do some research. .......................................................... >Those of us who, in Dr Cheney's words " Have no detectable mood >disorder " think that money and effort expended in this direction does >not address our needs. We believe that if some people don't have the >mental maladaptive behaviors that " retraining " is aimed at, this >therapy is misdirected at a comorbid psychological condition, but not >at the core of CFS itself. >We believe that the mere existence of people who lack these >maladaptive behaviors is evidence enough that they are not inherent >to the physical illness. .............................................. I'm glad you brought up Cheney. The following is from an article detailing Cheney's thoughts on the condition a few years ago: ............. In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked " injury, " represents the position of CFIDS patients. This puts us in the red " Neurotoxic " zone. When we shift toward seizure, we often experience " sensory overload. " It's as if our brain's " radar " is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely " wired. " The " wired " feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity. From http://www.immunesupport.com/library/showarticle.cfm?ID=3154 ........... Again- it's not about " mental maladaptive behaviours " ! It's about a brain that, like any other part of the body, can become dysregulated/damaged. The stuff I am talking about is sourced, in part, from Cheney! And- fair enough- If you don't have any of the over-firing/dysregulated CNS type symptoms then I can totally understand why you might doubt what I'm saying has any worth. However, these type of symptoms are consistently reported and consistently defined in CFS literature. ........................ >The Wessely school has been " keeping it's foot in the door " by >saying that " mind/body " connections cannot be separated for purposes >of research and treatment. >I would say that by subscribing to the notion that the physical >trigger might be gone - but that the illness is now " fight-or flight- >adrenal-depletion " from a maladaptive mental state, you are booting >people right THROUGH the door - into the mental clinic. >Because no matter how much you insist that this is a physical illness >that is kept ongoing by psychological responses - the mental clinic >is where you get the corrective therapy relevant to aberrant >pychological responses. .................................. I am definitely not saying that the physical trigger is gone, but conceivably that it has changed. EG- Virus + being extremely busy/physically active etc might be initial trigger, then resultant damage/dysregulation to brain/CNS might perpetuate illness. I am NOT saying it's a physical illness that's kept going by psychological responses. Those are your words. You keep trying to apply them to what I am saying and I keep telling you they are misrepresenting what I am saying. You can't just apply Wessely to what I'm saying because it's convenient! It also happens to be totally wrong. Maybe we have to agree to disagree. All the best, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Nelly wrote: ............................ >, >How many lives would we need to try all therapies that have been dreamt up by the >various doctors, psychologists, psychiatrists, naturopaths, homeopaths etc ? >I'll only try what I have assessed as having a chance of working, can't try all and every >therapy without at least having made a good educated guess at what appears to be at >play, and AFAIC CBT or other psychological interventions just don't make enough >sense to waste time, effort and money on. >Antibiotics and antiprotozoans have saved my life not meditating not vitamins .............................. Fair enough. I would never discredit anyone's decisions or individual circumstances. I (personally) agree that CBT is of very limited worth. My point was more about not lumping everything with perceived " psychological " elements into the same basket, in terms of whether they could be effective. Treatments that might come under this banner vary greatly. EG- Wessely and Gupta's approaches might both be ascribed " psychological " status....but they are poles apart. Gupta is explicit in his beliefs about the physiological nature of the condition. Glad you have found something that has helped . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 " " <stephano@...> wrote: > > wrote: > > > >Your concept is that the original trigger may be gone - and the > >ongoing problems are an inappropriate psychological " over- reaction " . > >That's is the Wessely school paradigm. > >They use stories of recovery by psychological interventions as > >evidence that until all the scientific ducks are in a row, they have > >every right to " Help " people on the basis of " evidence based > >medicine " . > ........................... > > I really think we need to be clear about this. I'm sorry, but to equate what I'm saying with the Wesseley school stuff is patently wrong. Wesseley et al (as I understand it) talk about utterly ridiculous things such as some sort of secondary gain from illness, 'mistaken' beliefs about physical illness etc. They basically say CFS sufferers perpetuate their illness through attitudes which are at odds with reality. EG We are supposedly unreasonably fearful of exercise so should do graded exercise etc etc. Hence the term undeserving sick....we think we are sick, but we are " really " not. CBT should push us out of our maladaptive beliefs and behaviours, thus allowing us to get on with life. > > How you can lump that (nonsense) in with what I'm saying baffles me. > Because you just said it AGAIN. Perhaps you need to do a bit more research, to see that Wessely agrees that some minor illness or infection " triggered " your maladaptive " fight or flight " response, but that it is surely your own over-fixation on these symptoms which is at odds with reality. That if you lacked this inappropriate " fear " response when a stressful thought strikes, you would not overstimulate your immune system and recover like any normal person. Unbelievable. You condemn Professor Wessely's views and then reiterate that they are correct, over and over. How can I not lump you in with that nonsense when you repeat it? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 When lab animals are innoculated with pathogens, are their illness manifestations dependent upon their " mind/body " response? That is, the way each animal perceives their illness? Is the main obstacle to a test-animals abilty to take advantage of the mind/body " retraining " that it is extremely difficult to get them to understand the method. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 wrote: ........................... >Perhaps you need to do a bit more research, to see that Wessely agrees that some minor illness or infection " triggered " your maladaptive " fight or flight " response, but that it is surely your own over-fixation on these symptoms which is at odds with reality. That if you lacked this inappropriate " fear " response when a stressful thought strikes, you would not overstimulate your immune system and recover like any normal person. Unbelievable. You condemn Professor Wessely's views and then reiterate that they are correct, over and over. >How can I not lump you in with that nonsense when you repeat it? ................................... There's nothing to be achieved by repeating myself. You are interpreting what I'm saying in a way which simply distorts my meaning, or correlates with your particular distinction between psychological and physiological. I don't share that view, as I have clearly explained...so we are basically not communicating. If you're maintaining what I'm saying is as per Wessely, how can you choose to ignore the large differences between what I'm saying and Wessely's 'blame the victim' approach? The reason people with CFS have to be extremely careful with exercise (for example) is because we know how destructive it can be if we overdo it. I know what it's like to spend days in bed after overdoing it. There's nothing in the sufferer's attitude that is at odds with reality, as you point out Wessely argues. So- Intolerance to exercise and post-exertional malaise is an undeniable fact. It's not a distorted attitude or unreasonable fear that is the problem. Our attitude is in line with reality. The problem (if this theory is right) is a result of a dysfunctional brain/central nervous system which, because they directly affect all bodily systems, means your whole system is stuffed. EG- You might be respiring anaerobically instead of aerobically (meaning massive lactic acid production) and/or whatever other physiological exercise-related processes are affected. Now...if you are maintaining that this can ONLY be categorised as " psychological " ,...because it's the brain that is affected (which leads to everything else)..... then I disagree 100% and there is no point in us discussing it. I just wish you could be clear and say this, if that's what you mean. No amount of CBT (in my opinion) is going to change my exercise tolerance. However, I have been able to improve my exercise tolerance (and other symptoms) with a Goldstein drug which suppressed the overactice/oversensitive CNS. It wasn't sustainable, because it went too far, (the side-effects outweighed the gains) but the point is it really worked for a period of time. Also, some of the benefits lasted long after I came off the drug. Meditation and yoga have helped in the same way. I see the Gupta stuff in the same light. Hopefully, it is something that can help to address central dysregulation. It's not going to do anything to change my " attitude " , which will always remain positive and in line with doing as much as I can within whatever limitations the illness imposes. I really can't say any more. I'm just repeating myself in different ways. Cheers, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 , I hope you know I despise Wessely and all like him. I want nothing I do or say to aid them and their kind (includes Reeves and much/all of CDC). I have followed this thread sporadically, but with interest. I pose the following question, as a way to try and weed through the various ideas. What if we were at the stage where we knew about H. Pylori, or some organism yet unknown, but no effective drug was available. If specific techniques to reduce stress, or better handle it, improved the condition, would it be invalid to apply them? Would it be valid to even think about them or try them? Would it still be feeding the " stress causes ulcers " theory to try these techniques? (This is not to say I know anything about this technique in particular or related techniques. Gupta's published work seems to be one article in " Medical Hypotheses " , so there isn't the kind of support, other than the reports of fellow sufferers here, one might hope for. Certainly enough time must always be allowed to weed out placebo effects.) On Jan 17, 2008 12:25 PM, erikmoldwarrior <erikmoldwarrior@...> wrote: > *And amazing that we just went through this same debacle with > the " Stress causes Ulcers " dogma, versus " Ulcers(H Pylori infection) > causes chronic inflammation which makes ulcer sufferers THINK that > their stress was causative. > So in the end, it was ulcers that caused the stress(intolerance) > > But for a hundred years, we had people who would fight you to the > death saying that reducing stress made their ulcers better, so there > could be no doubt that stress causes ulcers. > > Nope - other way around. > - > * > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 " bob niederman " <bobn1955@...> wrote: > I pose the following question, as a way to try and weed through the various > ideas. > > What if we were at the stage where we knew about H. Pylori, or some organism yet unknown, but no effective drug was available. > > If specific techniques to reduce stress, or better handle it, improved the condition, would it be invalid to apply them? Would it be valid to even think about them or try them? Would it still be feeding the " stress causes ulcers " theory to try these techniques? > Of course people should, if they see the need (which not all CFSers do), and as can be seen in my old messages, I say that people should do whatever they can that helps, and refer back to a time before acyclovir - when people were trying to " cure herpes " by making themsleves more serene than Buddhist monks. Sure - it helped reduce flare ups, and is a worthy thing to try. No amount of stress can " cause " a herpes infection. It can only mediate something that is there to be exacerbated. Unless one is ONLY talking about 'causing a flareup " , the word " cause " is inappropriate. But we are in the situation of the ulcer-sufferers of years ago who heard the rumors that they cleared up with antibiotics. We would like doctors to rethink their attributions and stress associations - and seize upon this clue that shows the illness is not what they think it is. One can see that doctors initiate this kind of " reconsideration " on their own. Their minds don't work that way. The difficulty Barry Marshall and Robin Warren had in trying to get their Nobel Prize winning hypothesis to even be examined was a story in itself - and reveals a lot about the mental processes of the medical mindset. Saying " I don't care what anybody thinks. My ulcers got better when I reduced stress. This is solid evidence that the mind controls the body and that there is no dividing line between physical and psychological " is not going to get doctors, or anybody else, to reconsider their entrenched beliefs. If anything, this type of wording reinforces their dogma even further. It helps them to ignore that tiny little clue that children who weren't under any " stress " could suddenly acquire ulcers for no apparent reason. Sure the child is " acting out " and seems more stressed - probably even says so, but that sudden acquisition of stress intolerance clearly delineates the " dividing line " between mind and body - because that body didn't have those problems until the illness hit. You know, it's really funny that the mindbodyists have virtually everything backwards. Among other things they got completely reversed, they say that their mental control techniques represent a new way of looking at illness that demolishes the old entrenched beliefs. But wait.., when you look over the history of medicine, weren't just about ALL of the " psychologized " until proven not so? Again and again, it is the " old entrenched belief " that the illness was " in the mind " which was the dogma that got demolished. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 wrote: .............................. >Wessely abandoned saying that there were no physical components INHERENT to the illness years ago. (The initial notion being that hypochondriac CFSers just seized on anything they could use as an excuse) The evidence for immune abnormalities forced him to change his story. So he switched to saying that it is your individual inability to handle stress that makes the difference between someone who recovers - and someone who suffers from chronic fatiguing somatization disorder. And that analogy with exercise intolerance is a good one. We had instant-overnight " post-illness " induced exercise intolerance and told doctors that this was the RESULT of the illness. They switched completely around backwards in their minds and said that DECONDITIONING led to the exercise intolerance. This is the incontrovertible " backwardsness " of doctorthink. We say " Illness caused exercise intolerance " (overnight), and doctors say " Exercise intolerance causes the illness (deconditioning) " We say " Illness causes emotional lability (induced an altered susceptibility) " and doctors say " Emotional lability causes the illness (The abnornalSusceptibility induced fight or flight " somatization " ) It is upon these " fine points " that determines what kind of illness CFS is. Whenever you " step over the line " of asserting that psychological factors are CAUSATIVE, or the driving force in CFS, you are putting aberrant mental responses " in the driver seat " and indulging in doctorthink. Getting it completely backwards! Those of us who had these problems arise after that flu-like illness make one seemingly " insignificant " substitution and express it somewhat differenly. We would say that emotional susceptibility is the RESULT of CFS, and that therefore, " CFS " is the driving force in any alteration of stress tolerance. And amazing that we just went through this same debacle with the " Stress causes Ulcers " dogma, versus " Ulcers(H Pylori infection) causes chronic inflammation which makes ulcer sufferers THINK that their stress was causative. So in the end, it was ulcers that caused the stress(intolerance) But for a hundred years, we had people who would fight you to the death saying that reducing stress made their ulcers better, so there could be no doubt that stress causes ulcers. >Nope - other way around. .......................................... Ok. Life is too short. I like communicating with people about different theories on CFS....but this is all about continually clarifying what I'm saying, so that you can keep criticising what I'm not saying. Was your favourite part of " Alice in Wonderland " the Mad Hatter's Tea party by any chance? Over and out. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 " " <stephano@...> wrote: > Ok. Life is too short. I like communicating with people about different theories on CFS....but this is all about continually clarifying what I'm saying, so that you can keep criticising what I'm not saying. > > Was your favourite part of " Alice in Wonderland " the Mad Hatter's Tea party by any chance? > Over and out. > > S. ----------------------------------------- , What I am criticising is the way you disagreed with the way the Canadian Guidelines were " loathe " to move mood disorders from strictly a " reaction to the illness " position into the " causative " modality, and did this on your own by saying that the distinction is " fallacious " . Whenever you say the illness is physical, but can also be caused by psychological factors - you say " Of course it's REAL - physiological underpinnings " and then conflictingly say this is just semantics and a false dichotomy. When you dismissed all the physical effects as being " downstream " and therefore irrelevant - without actually saying it, you only left one thing " upstream " . Your fundamental mindset is further laid bare by your assertions that the CFS community is " defensive " and " desperate " to prove to prove they have a physical illness. What if they DO have a physical illness? Shouldn't they want to prove it? Doesn't it make sense that this puts you on the other side of the fence from everyone who wants to prove they have a physical illness? The great thing about these lists is that you can always dredge up the original quotes to show what you are talking about. (unless the thread gets deleted for being too political). - " " <stephano@...> wrote: I have thick folders of research and medical tests, compiled over the years in my ceaseless attempt to beat this thing, many of which show physiological anomalies. I spent so many years chasing my tail, whether it was trying to address high blood lactate levels, high mycoplasma levels, immune anomalies, liver function anomalies, parasites, leaky gut, imbalanced gut bacteria or urine tests showing fibrillar/non-fibrillar catabolism, anomalies in the shape of red blood cells, elevated potassium excretion, circadian rhythm/ DHEA and cortisol anomalies, food allergies, hypoperfusion on brainscans....just off the top of my head. The list goes on and on, and the list of attempted treatments and associated expense even more so. What I have realised is that all this stuff is " downstream " and, essentially, irrelevant. If systems controlling bodily regulation and homeostasis are damaged or rendered dysfunctional, then it is reasonable to expect that any and all symptoms can result, with accompanying tests results. People say they are " sure " there is still some virus, for example.....but the immune system is just another one of the interlinked systems that can be dysregulated, leading to an immune response that we take, with 100% surety, to be reflective of a continued infection. Why does it have to mean that? As useful as the Canadian guidelines may be, they are loathe to include mood disorder as anything other than something " reactive. " IE- Depression or anxiety as a " reaction " to having a disorder that wrecks your life. In fact, mood disorder in CFS is often part and parcel of the illness in primary terms. It's not necessarily " reactive " and it's not necessarily " co-morbid. " It's often just another CFS symptom. Other neurological illnesses, such as Parkinson's and Multiple sclerosis, also cause disturbed mood due to to the mechanism of the illness. Again, this false dichotomy exists because the CFS community is so defensive and desperate to prove it's a " real, physical illness. " For god's sake ....of course it's REAL and of course it has physiological underpinnings....but so do many conditions, including many so called " psychiatric " illnesses. Semantics, semantics, semantics. Somehow, any intervention that has any perceived 'psychological' elements is instantly deemed to be useless, false and heretic by the zealots. How on earth can you know this? How can you be certain? Certaintly is based on a mindset, namely, " I have a physical illness, so what good are treatments that intervene in a psychological way going to be. " But....... this is fallacious, because the physical/psychological distinction is equally fallacious. Gupta's programme is just another intervention. The only way it should be judged is whether it is helpful/effective or not. Concepts of psychological v physical are totally arbitrary and of no use to anyone. . Quote Link to comment Share on other sites More sharing options...
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