Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 I'm really not concerned with what Dr. Wessely does or does not think by the way- he's not my lodestone - I dont bend one or another depending on what he says. I would think that if you looked closely at this issue that you would realize that anyone, after years of distress and frustration (not to mention isolation) is probably not dealing as optimally with this disease as they might. I dont know what Wessely says - I dont make it my business to keep with that - but I doubt, given the only moderate effects of CBT that he would say it cures CFS. That seems to be the consensus. Maybe thats too fine a point? You put this in an either/or position. I think its neither. I'll bet Amygdala retraining helps and you just dont know to do with that statement - it doesnt fit in your psychology/physiology paradigm. That makes things difficult. erikmoldwarrior <erikmoldwarrior@...> wrote: > > That because I think you're drawing an inappropriate distinction between psychology and physiology. Theres no reason that something that effects say the autonomic nervous system pathways in the brain shouldn't also effect the emotional centers of the brain as well. These two areas are located very close to each other. _______________________________________________________ Professor Wessely couldn't have said it better. -E _______________________________________________________ > > You didnt get into CFS because you thought the wrong way or behaved the wrong way. You got into CFS problem because something caused damage to your brain which effected many different aspects of your body and your mind; from exercising to thinking to emoting as well. > ________________________________________________________ The Wessely concept is that no matter whether maladaptive behaviors led you to get CFS, it is your own maladaptive behaviors that prevent you from recovering. If this therapy helps you, it would confirm that the theory is accurate - in your case. -E ________________________________________________________ > Curing is another matter. Can thinking in certain ways change the way the brain operates? Can it heal brain damage? I really dont know. Nor do I know if Amygdala Retraining is curative. I would be surprised at that but I wouldnt be surprised if it helps and thats pretty good in itself. _________________________________________________________ If some people naturally posses the properly mentally healthy LACK of maladaptive behaviors which allow them to recover without " amygdala training " , while it may not be your fault that you don't have this mechanism, it would still mean that mental health intervention is appropriate and necessary to your condition. -E __________________________________________________________ > > I doubt that anyone who actually gets cured of this would really care if its 'psychological' or not. __________________________________________________________ Probably not, but it would still confirm that this was indeed a psychological illness, and that " Change your attitude " and " AIYH " actually constituted " helpful " and " CORRECT " advice, rather that being the " abuse " it was thought to be. It would also mean that it was those CFSers who believed that their illness was purely physiological who were the stubborn and closeminded mistaken ones, who needed to have their error forcefully conveyed to them. - --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 No I'm saying that with regards to my experience with CFS I really dont give a hoot about what Dr. Wessely says. My experience is that some of these techniques have helped me in the past. I'm not going to deny because of what some british psychologist believes or doesnt believe. I would also note that these techniques have also increased immune functioning in AIDS and helped people with kidney disease and other 'normal' diseases. I dont see why they wouldnt work in CFS - a disease which is so difficult on so many different levels. As I said 's study just showed that all sorts of mindfulness techniques including CBT did provide modest benefits in CFS. You can put this in the terms of whether CFS patients 'require' this kind of help or you can simply say that it can benefit CFS patients. I think the later is a bit less loaded. By constantly framing this subject in terms of Wessely you're turning it into a personality issue rather than arguing it on its merits. --- erikmoldwarrior <erikmoldwarrior@...> wrote: > Cort, are you saying that you really aren't aware of > Professor > Wessely's concepts - and reached similar conclusions > independently? > > Basically Professor Wessely claims is that CFSers > have a maladaptive > mental process that hinders recovery - and need some > kind of > behavioral intervention to overcome their own self > destructive > behavioral patterns. > It's not even a matter of " curing CFS " , but just > whether CFSers do, > in fact, require this kind of help to improve their > condition, even > if they are not aware they need this help - and need > a bit of a shove > in that direction. As in perhaps, making such > counseling a > requirement before receiving benefits of any kind. > > I certainly DO know what to do with assertions that > amygdala > retraining actually does help: treat it as evidence > that Professor > Wessely's concepts were accurate, and that he may > have been right all > along. > > No matter what I may think of it, if you can > actually exercise > successful mental control over a physiological > condition, then you > are successfully exercising mental control over a > physiological > condition. > > Which is precisely what the " AIYH " ers have been > saying CFSers should > do, in order to help themselves. > - > > > cort johnson <cortttt@...> wrote: > > > > I'm really not concerned with what Dr. Wessely > does or does not > think by the way- he's not my lodestone - I dont > bend one or another > depending on what he says. > > > > I would think that if you looked closely at this > issue that you > would realize that anyone, after years of distress > and frustration > (not to mention isolation) is probably not dealing > as optimally with > this disease as they might. I dont know what Wessely > says - I dont > make it my business to keep with that - but I doubt, > given the only > moderate effects of CBT that he would say it cures > CFS. That seems to > be the consensus. > > > > Maybe thats too fine a point? You put this in an > either/or > position. I think its neither. I'll bet Amygdala > retraining helps and > you just dont know to do with that statement - it > doesnt fit in your > psychology/physiology paradigm. That makes things > difficult. > > > > > > erikmoldwarrior <erikmoldwarrior@...> wrote: > > > > > > > > > > > > That because I think you're drawing an > inappropriate distinction > > between psychology and physiology. Theres no > reason that something > > that effects say the autonomic nervous system > pathways in the brain > > shouldn't also effect the emotional centers of the > brain as well. > > These two areas are located very close to each > other. > > > _______________________________________________________ > > > > Professor Wessely couldn't have said it better. -E > > > _______________________________________________________ > > > > > > > You didnt get into CFS because you thought the > wrong way or > > behaved the wrong way. You got into CFS problem > because something > > caused damage to your brain which effected many > different aspects > of > > your body and your mind; from exercising to > thinking to emoting as > > well. > > > > > > ________________________________________________________ > > > > The Wessely concept is that no matter whether > maladaptive behaviors > > led you to get CFS, it is your own maladaptive > behaviors that > prevent > > you from recovering. If this therapy helps you, it > would confirm > > that the theory is accurate - in your case. -E > > > ________________________________________________________ > > > > Curing is another matter. Can thinking in > certain ways change the > > way the brain operates? Can it heal brain damage? > I really dont > know. > > Nor do I know if Amygdala Retraining is curative. > I would be > > surprised at that but I wouldnt be surprised if it > helps and thats > > pretty good in itself. > > > _________________________________________________________ > > > > If some people naturally posses the properly > mentally healthy LACK > > of maladaptive behaviors which allow them to > recover > > without " amygdala training " , while it may not be > your fault that > you > > don't have this mechanism, it would still mean > that mental health > > intervention is appropriate and necessary to your > condition. -E > > > __________________________________________________________ > > > > > > > I doubt that anyone who actually gets cured of > this would really > > care if its 'psychological' or not. > > > > > __________________________________________________________ > > > > Probably not, but it would still confirm that this > was indeed a > > psychological illness, and that " Change your > attitude " and " AIYH " > > actually constituted " helpful " and " CORRECT " > advice, rather that > > being the " abuse " it was thought to be. > > > > It would also mean that it was those CFSers who > believed that their > > illness was purely physiological who were the > stubborn and > > closeminded mistaken ones, who needed to have > their error > forcefully > > conveyed to them. > > - > > > > > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find them > fast with > Search. > > > > [Non-text portions of this message have been > removed] > > > > > ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Professor Wessely's concepts are what is driving the current trend overseas, and here, towards directing CFSers to the psychiatrists for treatment, AND for discounting viable medical testing as " unneccessary " . If this works for you, you have a different illness than I do. Unfortunately, they have lumped us all together and we all have to jump through the same hoops. So advocating Wessely or any ideology that supports him is frankly going to end up denying me proper medical analysis. You want to have the right to your opinion. But as long as we are lumped together, your opinion ends up trumping my health needs. I really wish we could get a divorce! lol erikmoldwarrior <erikmoldwarrior@...> wrote: cort johnson wrote: > > No I'm saying that with regards to my experience with > CFS I really dont give a hoot about what Dr. Wessely > says. My experience is that some of these techniques > have helped me in the past. I'm not going to deny > because of what some british psychologist believes or > doesnt believe. > > I would also note that these techniques have also > increased immune functioning in AIDS and helped people > with kidney disease and other 'normal' diseases. I > dont see why they wouldnt work in CFS - a disease > which is so difficult on so many different levels. > > As I said 's study just showed that all sorts of > mindfulness techniques including CBT did provide > modest benefits in CFS. > > You can put this in the terms of whether CFS patients > 'require' this kind of help or you can simply say that > it can benefit CFS patients. I think the later is a > bit less loaded. > > By constantly framing this subject in terms of Wessely > you're turning it into a personality issue rather than > arguing it on its merits. > Cort, Can if be that you are really unaware that Professor Wessely's concepts are shaping the fundamental treatment of ME/CFS? I would say that by treating Professor Wessely's influence as if he were irrelevant, you are the one who is trying to turn an international policy into a mere " personality " issue. But I suppose since you appear to be in fundamental agreement, you would not perceive this as any kind of problem for ME/CFS sufferers. And in fact, feel that this view of ME/CFS is perfectly correct and appropriate. - 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 11, 2008 Report Share Posted January 11, 2008 http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm Khaly Castle <khalyal@...> wrote: Professor Wessely's concepts are what is driving the current trend overseas, and here, towards directing CFSers to the psychiatrists for treatment, AND for discounting viable medical testing as " unneccessary " . If this works for you, you have a different illness than I do. Unfortunately, they have lumped us all together and we all have to jump through the same hoops. So advocating Wessely or any ideology that supports him is frankly going to end up denying me proper medical analysis. You want to have the right to your opinion. But as long as we are lumped together, your opinion ends up trumping my health needs. I really wish we could get a divorce! lol erikmoldwarrior wrote: cort johnson wrote: > > No I'm saying that with regards to my experience with > CFS I really dont give a hoot about what Dr. Wessely > says. My experience is that some of these techniques > have helped me in the past. I'm not going to deny > because of what some british psychologist believes or > doesnt believe. > > I would also note that these techniques have also > increased immune functioning in AIDS and helped people > with kidney disease and other 'normal' diseases. I > dont see why they wouldnt work in CFS - a disease > which is so difficult on so many different levels. > > As I said 's study just showed that all sorts of > mindfulness techniques including CBT did provide > modest benefits in CFS. > > You can put this in the terms of whether CFS patients > 'require' this kind of help or you can simply say that > it can benefit CFS patients. I think the later is a > bit less loaded. > > By constantly framing this subject in terms of Wessely > you're turning it into a personality issue rather than > arguing it on its merits. > Cort, Can if be that you are really unaware that Professor Wessely's concepts are shaping the fundamental treatment of ME/CFS? I would say that by treating Professor Wessely's influence as if he were irrelevant, you are the one who is trying to turn an international policy into a mere " personality " issue. But I suppose since you appear to be in fundamental agreement, you would not perceive this as any kind of problem for ME/CFS sufferers. And in fact, feel that this view of ME/CFS is perfectly correct and appropriate. - 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 11, 2008 Report Share Posted January 11, 2008 I agree. After more than 20 years of this, I am really tired of being told it's all in my head. Khaly Castle wrote: > > Professor Wessely's concepts are what is driving the current trend > overseas, and here, towards directing CFSers to the psychiatrists for > treatment, AND for discounting viable medical testing as > " unneccessary " . If this works for you, you have a different illness > than I do. Unfortunately, they have lumped us all together and we all > have to jump through the same hoops. So advocating Wessely or any > ideology that supports him is frankly going to end up denying me > proper medical analysis. You want to have the right to your opinion. > But as long as we are lumped together, your opinion ends up trumping > my health needs. I really wish we could get a divorce! lol > > erikmoldwarrior <erikmoldwarrior@... > <mailto:erikmoldwarrior%40earthlink.net>> wrote: cort johnson wrote: > > > > No I'm saying that with regards to my experience with > > CFS I really dont give a hoot about what Dr. Wessely > > says. My experience is that some of these techniques > > have helped me in the past. I'm not going to deny > > because of what some british psychologist believes or > > doesnt believe. > > > > I would also note that these techniques have also > > increased immune functioning in AIDS and helped people > > with kidney disease and other 'normal' diseases. I > > dont see why they wouldnt work in CFS - a disease > > which is so difficult on so many different levels. > > > > As I said 's study just showed that all sorts of > > mindfulness techniques including CBT did provide > > modest benefits in CFS. > > > > You can put this in the terms of whether CFS patients > > 'require' this kind of help or you can simply say that > > it can benefit CFS patients. I think the later is a > > bit less loaded. > > > > By constantly framing this subject in terms of Wessely > > you're turning it into a personality issue rather than > > arguing it on its merits. > > > > Cort, Can if be that you are really unaware that Professor Wessely's > concepts are shaping the fundamental treatment of ME/CFS? > > I would say that by treating Professor Wessely's influence as if he > were irrelevant, you are the one who is trying to turn an > international policy into a mere " personality " issue. > But I suppose since you appear to be in fundamental agreement, you > would not perceive this as any kind of problem for ME/CFS sufferers. > And in fact, feel that this view of ME/CFS is perfectly correct and > appropriate. > - > > 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 11, 2008 Report Share Posted January 11, 2008 Cort wrote: .................................................... That because I think you're drawing an inappropriate distinction between psychology and physiology. Theres no reason that something that effects say the autonomic nervous system pathways in the brain shouldn't also effect the emotional centers of the brain as well. These two areas are located very close to each other. You didnt get into CFS because you thought the wrong way or behaved the wrong way. You got into CFS problem because something caused damage to your brain which effected many different aspects of your body and your mind; from exercising to thinking to emoting as well. Curing is another matter. Can thinking in certain ways change the way the brain operates? Can it heal brain damage? I really dont know. Nor do I know if Amygdala Retraining is curative. I would be surprised at that but I wouldnt be surprised if it helps and thats pretty good in itself. I doubt that anyone who actually gets cured of this would really care if its 'psychological' or not. ................................................. I would like to say I agree 100% with what Cort says. I am in my 12th year of this illness and I can say, categorically, that since I began to understand it as a dyregulated/hypersensitised brain/CNS and experimented accordingly, both with medications (as per Jay Goldstein's ideas) and things like yoga and meditation, my condition has improved significantly. (This has been over the past 2-3 years) This is NOT to say it is a " psychological condition " or " all in your head. " I remain baffled at the dogma shown by some people on this list who seem to need to cling desperately to this utterly false dichotomy of 'psychological versus physiological.' Get over it! Get over the semantics. 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. . It's no different to saying antibiotics are making me better, therefore I must have a bacteruial infection, despite no evidence of it. Antibiotics could make someone feel better for any number of reasons, one of which (just as an example) is their effects at a neurological level. (And no, I'm not talking about the placebo effect here.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 There is a mechanism that is increasingly well understood called neurogenesis, basically the creation of neural connections, which is blocked by both extreme psychological stress hormones and toxins. If that process of neurogeneis is stopped, people develop depression, they start having memory problems, their bodies start changing in many ways, some irreversible, if the stress goes on long enough. They started discovering this in World War I when some British and French soldiers basically lost their minds in the trenches and ended up being executed for 'cowardice in the face of enemy fire' because they were sick and couldn't fight (and so they in a sense 'refused' to attack the enemy) They couldn't walk, had a strange shuffling gait. They had to be tied to the poles in front of the firing squad. We now know that to be caused by neurotoxins. Our own bodies make some neurotoxins sometimes. The execution of innocent men to frighten others in their resolve to fight causes a particular kind of uncontrollable stress that is also caused by the threat of losing all one holds dear. Its a historical fact that armies do certainly carry out military executions for cowardice. However, selecting individuals at random and executing them as a punishment for the sins of the whole group causes much more stress and I think that there are parallels in mold illness. In a sense, those unwilling or unable to afford the 'safe' environments are punished so that the safe environments 'value' is increased through fear. Otherwise if it was too safe it might not be held to be worth what people are willing to pay for it. The function of looking the other way is in a sense to scare the 'overly' economical. Perhaps this is why so many people who can't afford them have been willing to take out loans in order to get out of rental housing and into housing they own? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 After reading the literature extensively I dont where you get the idea that Wessely's ideas are driving the research. Thats just not the case. There is a substantial amount of research focused on CBT and graded exercise but most of the research into CFS is focused on physiology. Check out Pubmed. Its even true in the UK with the difference being the govt only supports behavioral research. That research is showing the CBT and other therapies for the most part present modest gains. It should lose strength of its own accord - that is after all how science works. But dont throw the baby out with the bathwater; it does show modest gains for many CFS patients. Until you try behavioral therapies and find they dont work for you then you cant say what kind of illness you have relative to what I have. I doubt that you've tried. Theres also abundant anecdotal evidence that meditation ,relaxation exercises etc. are helpful. I dont think my opinion has much to do with the course that CFS research takes! --- " retractap@... " <retractap@...> wrote: > I agree. After more than 20 years of this, I am > really tired of being > told it's all in my head. > > Khaly Castle wrote: > > > > Professor Wessely's concepts are what is driving > the current trend > > overseas, and here, towards directing CFSers to > the psychiatrists for > > treatment, AND for discounting viable medical > testing as > > " unneccessary " . If this works for you, you have a > different illness > > than I do. Unfortunately, they have lumped us all > together and we all > > have to jump through the same hoops. So advocating > Wessely or any > > ideology that supports him is frankly going to end > up denying me > > proper medical analysis. You want to have the > right to your opinion. > > But as long as we are lumped together, your > opinion ends up trumping > > my health needs. I really wish we could get a > divorce! lol > > > > erikmoldwarrior <erikmoldwarrior@... > > <mailto:erikmoldwarrior%40earthlink.net>> wrote: > cort johnson wrote: > > > > > > No I'm saying that with regards to my experience > with > > > CFS I really dont give a hoot about what Dr. > Wessely > > > says. My experience is that some of these > techniques > > > have helped me in the past. I'm not going to > deny > > > because of what some british psychologist > believes or > > > doesnt believe. > > > > > > I would also note that these techniques have > also > > > increased immune functioning in AIDS and helped > people > > > with kidney disease and other 'normal' diseases. > I > > > dont see why they wouldnt work in CFS - a > disease > > > which is so difficult on so many different > levels. > > > > > > As I said 's study just showed that all > sorts of > > > mindfulness techniques including CBT did provide > > > modest benefits in CFS. > > > > > > You can put this in the terms of whether CFS > patients > > > 'require' this kind of help or you can simply > say that > > > it can benefit CFS patients. I think the later > is a > > > bit less loaded. > > > > > > By constantly framing this subject in terms of > Wessely > > > you're turning it into a personality issue > rather than > > > arguing it on its merits. > > > > > > > Cort, Can if be that you are really unaware that > Professor Wessely's > > concepts are shaping the fundamental treatment of > ME/CFS? > > > > I would say that by treating Professor Wessely's > influence as if he > > were irrelevant, you are the one who is trying to > turn an > > international policy into a mere " personality " > issue. > > But I suppose since you appear to be in > fundamental agreement, you > > would not perceive this as any kind of problem for > ME/CFS sufferers. > > And in fact, feel that this view of ME/CFS is > perfectly correct and > > appropriate. > > - > > > > 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 There is a > substantial amount of research focused on CBT and > graded exercise but most of the research into CFS is > focused on physiology. Check out Pubmed. Its even true > in the UK with the difference being the govt only > supports behavioral research. > > That research is showing the CBT and other therapies > for the most part present modest gains. It should lose > strength of its own accord - that is after all how > science works. In the Netherlands, the govt supports only behavioral research also. The Nijmegen research-group claims that 70% of the patiënts with CFS gets cured with CGT. In Belgium the standard is also CGT; in both countries you are 'forced' to take CGT upon being diagnosed with CFS. If it doesn't cure you, they conclude that you dón't want to get better. Just last week, another university hospital in Amsterdam revealed their plans to open up a clinic for medically unexplained illnesses, among them CFS. Their treatments: all psychiatric/psychological. So the psychological treatments only gain in popularity over here and I wouldn't be surprised if that spreads to the US and other nations. Quote Link to comment Share on other sites More sharing options...
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