Thank you Laura. Well said.
Please post here if you're a medic who thinks CFS is primarily psychological!
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laura - thank you so for such an honest, articluate post. I agree with everything you say, but don't bring the same authority that you do by being a licensed psychotherapist. I'd love to have your post as an introductory caveat to any materials presented anywhere on CBT.
okay Dr. Yes, but it better be as good. 
I loved the Peter Cushing avatar. I didn't know who he was and I thought he really was JPV until my hubby said we couldn't put him in the video because he's patented. I keep hoping you'll go back to that Avatar. He fits your personality better JPV and makes everything you say seem cooler. lol
I loved the Peter Cushing avatar. I didn't know who he was and I thought he really was JPV until my hubby said we couldn't put him in the video because he's patented. I keep hoping you'll go back to that Avatar. He fits your personality better JPV and makes everything you say seem cooler. lol
thank you for the compliment!
I'm glad I was able to clearly articulate my thoughts, I think a lot of us feel strongly about this issue...
Laura
I'm glad I was able to clearly articulate my thoughts, I think a lot of us feel strongly about this issue...
Laura
Thank you, Laura, from me too.
I am trying to work well with my thoughts and feelings--that is, mind--every day, and also in relation to the realm of Spirit, which for me is very real. These efforts are key to my "quality of life" and its course. But I am absolutely certain that this problem is a physical one. It is with me every day, without relapses. The only variations on the physical side have to do with diet, rest, exertion, etc., as we discuss and share in much detail here, but my baseline is that I am hooked, anchored to a physical problem. Like a dog on a chain, or with an invisible fence, I can imagine myself free of limits only when I stay within them, but put my nose over the line and Wham! I'm down--
Sing
I am trying to work well with my thoughts and feelings--that is, mind--every day, and also in relation to the realm of Spirit, which for me is very real. These efforts are key to my "quality of life" and its course. But I am absolutely certain that this problem is a physical one. It is with me every day, without relapses. The only variations on the physical side have to do with diet, rest, exertion, etc., as we discuss and share in much detail here, but my baseline is that I am hooked, anchored to a physical problem. Like a dog on a chain, or with an invisible fence, I can imagine myself free of limits only when I stay within them, but put my nose over the line and Wham! I'm down--
Sing
Yay! I love that new pic for your avatar JPV.
what an apt analogy. It so feels like a chain...
Laura
ps i'm gone for two days, so i don't mean to be rude if i don't write again for a little while!
Laura
ps i'm gone for two days, so i don't mean to be rude if i don't write again for a little while!
Wow: for a discussion that nobody was interested in having about a proposal nobody was interested in following up, this one's sure ticking along nicely...
I may be speaking too soon, but I'm so glad we're all still managing to get along. Thought we might lose someone for a brief moment there. I've also enjoyed the directions the thread's taken lately, the postmodernism stuff was wonderful. And Laura's view from a psychologist's point of view was just the sort of thing I was hoping might come out.
I seem to have a real need to come to terms with some kind of issue about the whole CBT business, and I think it comes down to this: where exactly can I/we draw the line of what's OK and what's out of order in the CBT world and in psychology in general? I've heard it said before that there are now some new wave CBT-for-CFS proponents who are genuinely committed to CFS as physical, and who offer CBT in a different way that doesn't seek to programme us with dangerous ideas like GET, but I just don't know whether I could ever trust myself into the hands of such a person after the sort of deception I've witnessed in those training videos. Most if not all of us seem to understand that mind/body techniques can be helpful to some extent in helping to manage our situation - but to go to an actual therapist I would need to know that that person really does 'get' CFS, and I can't trust what any of them say because the wolves do indeed dress up as sheep.
Perhaps, then, part of my interest in all this was to explore how somebody in the UK with ME/CFS who feels a need for some kind of supportive talk therapy might safely find such therapy without the risk of being led down a very dark and potentially life-threatening alley by a devious professional liar backed up by a spurious theory that justifies lying to patients. Surely many of us have needs in this area - coping with the traumas imposed by the system's treatment of us for one - and I imagine some of the lurkers out there are more uncertain about things than the members in here and could use some guidance.
So I wonder how can we sort the wheat from the chaff? In the past, my answer was to pay privately for loads of unhelpful therapies until eventually I found a wonderful Shiatsu practitioner who kept me alive for a few years. At the moment, I deal with it by writing off all of psychology and accepting that this is yet another service I can't access because I can't afford to take the risk, and because my time's too precious to waste. Hmm...come to think of it, actually nowadays I deal with it by getting my Group Therapy right here, on this forum, and I don't have those needs any more. But we can't hope to get the entire global ME/CFS community active on this forum...can we?...
I may be speaking too soon, but I'm so glad we're all still managing to get along. Thought we might lose someone for a brief moment there. I've also enjoyed the directions the thread's taken lately, the postmodernism stuff was wonderful. And Laura's view from a psychologist's point of view was just the sort of thing I was hoping might come out.
I seem to have a real need to come to terms with some kind of issue about the whole CBT business, and I think it comes down to this: where exactly can I/we draw the line of what's OK and what's out of order in the CBT world and in psychology in general? I've heard it said before that there are now some new wave CBT-for-CFS proponents who are genuinely committed to CFS as physical, and who offer CBT in a different way that doesn't seek to programme us with dangerous ideas like GET, but I just don't know whether I could ever trust myself into the hands of such a person after the sort of deception I've witnessed in those training videos. Most if not all of us seem to understand that mind/body techniques can be helpful to some extent in helping to manage our situation - but to go to an actual therapist I would need to know that that person really does 'get' CFS, and I can't trust what any of them say because the wolves do indeed dress up as sheep.
Perhaps, then, part of my interest in all this was to explore how somebody in the UK with ME/CFS who feels a need for some kind of supportive talk therapy might safely find such therapy without the risk of being led down a very dark and potentially life-threatening alley by a devious professional liar backed up by a spurious theory that justifies lying to patients. Surely many of us have needs in this area - coping with the traumas imposed by the system's treatment of us for one - and I imagine some of the lurkers out there are more uncertain about things than the members in here and could use some guidance.
So I wonder how can we sort the wheat from the chaff? In the past, my answer was to pay privately for loads of unhelpful therapies until eventually I found a wonderful Shiatsu practitioner who kept me alive for a few years. At the moment, I deal with it by writing off all of psychology and accepting that this is yet another service I can't access because I can't afford to take the risk, and because my time's too precious to waste. Hmm...come to think of it, actually nowadays I deal with it by getting my Group Therapy right here, on this forum, and I don't have those needs any more. But we can't hope to get the entire global ME/CFS community active on this forum...can we?...
Hi again free at last.
Sorry to hear that free at last. Don't take it personal. There's so much information and so many posts flying past all the time that not every question gets answered. Keep plugging away, just ask the question again. Also note, that information is in the archive somewhere (maybe not the latest state of play but I think there was a thread on it once - "XMRV positive in the UK" or something like that?). Take some time to explore the old threads, use the search function, and you may find your answers that way also. Perhaps nobody knows the definitive answer right now and that's why nobody answered. Creating a thread with a question can be a prominent way to ask it, and if there isn't already a thread on that subject, there should be and you could create it. I'd have thought the "UK XMRV Testing" thread would have info too.
Anyway, aside from that general advice, I can answer your question in a vague sense: Plenty Enough! Unofficially, 10/20 by one study. At least 2 or 3 public declarations by forum members here, and some discussions a few months ago if my memory is serving me well. Stand up to correct me someone? I'm curious myself to know the latest score. Anyway: Plenty to confirm that whatever the WPI is finding and whatever it means, it's just as true here as it is over the pond. Not peer-reviewed and published, of course, if you think that actually counts for much in our world, but plenty good enough for me.
Quite right, and indeed by making some extremely reasonable assumptions, one can then calculate from this info the percentage chance that the test used in the UK studies was actually a test capable of finding whatever it was that the WPI found. When you do that, there are lots of zeros after the decimal point.
Hmm...getting the media on our side...
Easier said than done, methinks. If you (rightly) don't think it's possible to convince the psychs, then by the same token, the Guardian's a non-starter, unless your strategy involves discrediting Wessely's mate who runs the show there. And with our most natural ally nobbled, that particular battle ain't easy. Waiting a few months for the forthcoming studies they can't ignore seems a reasonable pragmatic plan. Remember, there hasn't been a serious study yet, most of the currently-ongoing follow-up studies that were actually properly announced back in Oct/Nov have timescales to report results round about the summer I believe; there could be one any time now of course. So that would seem a natural time for a media blitz, and being prepared to react swiftly at that time seems right to me.
There's a perfectly valid place for what sometimes seems like an endless talking shop, IMO. Remember that even though we're hashing over old ground all the time, these threads are often in the nature of a chat amongst friends, and in real life we do repeat ourselves round and round and over and over apparently going nowhere and it doesn't mean that conversation between human's is a stupid and pointless thing. There are always people, inside and outside the forum, who are learning something from it. I learned a lot the last couple of days, not about the debate itself particularly, but about how many people's emotional reactions on this subject differ subtly from my own even though we completely agree, for example.
That said, you do have a very valid point. Anyone remember Holmsey? He would have agreed 100% with this. He wanted to see less chat and more action, and I think it may be a genuine problem we have, it's very hard to turn an open thread into something that actually has an outcome and a 'deliverable'. And yes we are perhaps guilty of indulging ourselves, talking to much and not acting enough, I accept that I probably am, at the moment. Clearly these are your concerns: my advice here is: frequent the Campaigning section, where all kinds of stuff goes on, do take a role in nudging us towards practical expressions of what we talk about, but please also do allow us to have conversations here as well, and be sensitive that people have a right to use the forum for the purposes they need at that point in time, and just talking is a valid thing to do as well.
No worries, apology accepted, since yes people here indeed do loads of that sort of stuff. People who are on this thread, and people who decided to ignore it. One mistake I made early doors was to assume that what actually happens visibly here is the whole of the outcomes. But actually, people here use material and information found here for the own more private projects, many work and campaign for/with other organisations, and the visible outcomes here are just a fraction of the productivity that flows from this site.
Consider this, everyone who thinks this thread is a waste of time: this is all searchable material that you can lift and edit and tweak and if you find a strong case or a snippet of a good bit of rhetoric here in support of your views, then you can adapt that and use that in your campaigning. Who's to say which of it is completely useless? Who's to say nobody out there happens to read and learn something? What effect does all this content have on google results for common search terms, and thus for campaigning puposes? Don't assume all this achieves nothing.
I'm sorry if you're feeling overlooked. Emotional militant angry negative types are more than welcome here in my experience. (As is pretty much any type as far as I'm concerned). Be patient and I'm sure you'll feel a connection here.
And please don't get kicked off! Pretty much all you have to do is not launch into a nasty personal attack on another forum member (stick to the argument, don't hound the person making it), not go round deliberately causing gratuitous offence, and as you know, pause and reflect for a few seconds before hitting submit if your emotions are running high. Since you seem to pretty much agree with near enough everyone here so far, that shouldn't be too hard.
I saw that idea as one small part of a larger picture and a means of generating a useful resource; I thought the basic idea could go in interesting directions. But I can understand why almost nobody saw it as a high priority project, and fair enough. From the way I look at the big picture, I'm still not completely convinced, but who knows? Maybe you and the rest of the forum are right.
Anyway, take it easy free at last, it looks to me that there's plenty room for you to fit right in here.
Sorry to hear that free at last. Don't take it personal. There's so much information and so many posts flying past all the time that not every question gets answered. Keep plugging away, just ask the question again. Also note, that information is in the archive somewhere (maybe not the latest state of play but I think there was a thread on it once - "XMRV positive in the UK" or something like that?). Take some time to explore the old threads, use the search function, and you may find your answers that way also. Perhaps nobody knows the definitive answer right now and that's why nobody answered. Creating a thread with a question can be a prominent way to ask it, and if there isn't already a thread on that subject, there should be and you could create it. I'd have thought the "UK XMRV Testing" thread would have info too.
Anyway, aside from that general advice, I can answer your question in a vague sense: Plenty Enough! Unofficially, 10/20 by one study. At least 2 or 3 public declarations by forum members here, and some discussions a few months ago if my memory is serving me well. Stand up to correct me someone? I'm curious myself to know the latest score. Anyway: Plenty to confirm that whatever the WPI is finding and whatever it means, it's just as true here as it is over the pond. Not peer-reviewed and published, of course, if you think that actually counts for much in our world, but plenty good enough for me.
Quite right, and indeed by making some extremely reasonable assumptions, one can then calculate from this info the percentage chance that the test used in the UK studies was actually a test capable of finding whatever it was that the WPI found. When you do that, there are lots of zeros after the decimal point.
Hmm...getting the media on our side...
Easier said than done, methinks. If you (rightly) don't think it's possible to convince the psychs, then by the same token, the Guardian's a non-starter, unless your strategy involves discrediting Wessely's mate who runs the show there. And with our most natural ally nobbled, that particular battle ain't easy. Waiting a few months for the forthcoming studies they can't ignore seems a reasonable pragmatic plan. Remember, there hasn't been a serious study yet, most of the currently-ongoing follow-up studies that were actually properly announced back in Oct/Nov have timescales to report results round about the summer I believe; there could be one any time now of course. So that would seem a natural time for a media blitz, and being prepared to react swiftly at that time seems right to me.
There's a perfectly valid place for what sometimes seems like an endless talking shop, IMO. Remember that even though we're hashing over old ground all the time, these threads are often in the nature of a chat amongst friends, and in real life we do repeat ourselves round and round and over and over apparently going nowhere and it doesn't mean that conversation between human's is a stupid and pointless thing. There are always people, inside and outside the forum, who are learning something from it. I learned a lot the last couple of days, not about the debate itself particularly, but about how many people's emotional reactions on this subject differ subtly from my own even though we completely agree, for example.
That said, you do have a very valid point. Anyone remember Holmsey? He would have agreed 100% with this. He wanted to see less chat and more action, and I think it may be a genuine problem we have, it's very hard to turn an open thread into something that actually has an outcome and a 'deliverable'. And yes we are perhaps guilty of indulging ourselves, talking to much and not acting enough, I accept that I probably am, at the moment. Clearly these are your concerns: my advice here is: frequent the Campaigning section, where all kinds of stuff goes on, do take a role in nudging us towards practical expressions of what we talk about, but please also do allow us to have conversations here as well, and be sensitive that people have a right to use the forum for the purposes they need at that point in time, and just talking is a valid thing to do as well.
No worries, apology accepted, since yes people here indeed do loads of that sort of stuff. People who are on this thread, and people who decided to ignore it. One mistake I made early doors was to assume that what actually happens visibly here is the whole of the outcomes. But actually, people here use material and information found here for the own more private projects, many work and campaign for/with other organisations, and the visible outcomes here are just a fraction of the productivity that flows from this site.
Consider this, everyone who thinks this thread is a waste of time: this is all searchable material that you can lift and edit and tweak and if you find a strong case or a snippet of a good bit of rhetoric here in support of your views, then you can adapt that and use that in your campaigning. Who's to say which of it is completely useless? Who's to say nobody out there happens to read and learn something? What effect does all this content have on google results for common search terms, and thus for campaigning puposes? Don't assume all this achieves nothing.
I'm sorry if you're feeling overlooked. Emotional militant angry negative types are more than welcome here in my experience. (As is pretty much any type as far as I'm concerned). Be patient and I'm sure you'll feel a connection here.
And please don't get kicked off! Pretty much all you have to do is not launch into a nasty personal attack on another forum member (stick to the argument, don't hound the person making it), not go round deliberately causing gratuitous offence, and as you know, pause and reflect for a few seconds before hitting submit if your emotions are running high. Since you seem to pretty much agree with near enough everyone here so far, that shouldn't be too hard.
I saw that idea as one small part of a larger picture and a means of generating a useful resource; I thought the basic idea could go in interesting directions. But I can understand why almost nobody saw it as a high priority project, and fair enough. From the way I look at the big picture, I'm still not completely convinced, but who knows? Maybe you and the rest of the forum are right.
Anyway, take it easy free at last, it looks to me that there's plenty room for you to fit right in here.
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Hi Mark thanks for that very detailed, and very well considered reply. I must admit youve gave me a lot to think about there, I cant help but come away from that thinking yes, maybe i am being a little shortsighted on some of the points im raising there, you have helped me look at it from a new direction. I still think most of the points i made are valid, But can see that your response is pretty valid too. And the reasons why sometimes things can appear ( from a newcomers perspective ) a certain way, when infact theres more to it than that.
I think your experiance of the members, and of the forum itself is showing me that maybe i need to look a little harder, or dig a little deeper before i assume many things. But you know Mark i never had a voice 15 years ago, as a young man bewildered and ill, with all the negativety that surrounds this illnes, doctors, psychaitrists, lack of real medical help ( we expect the nhs to save us dont we ) and when they didnt i felt personally, on a very deep level. let down.
And i still see a lot of that continuing today ( although things have improved a lot ) so all that energy that i didnt have then, and anger and emotion built up over the years, is probably erupting like a volcanoe on this group.
I realize you are all in the same boat i was, and should be treated as such, and considered as such. I did for a while there feel like my views were being overlooked, ignored if you will. Which kind of felt painful because, i was drawn to this forum more than any other that i ever occassionly clicked on.
Kind of felt a kinship that i have never had the luxury of feeling before. With so many people saying things that i had thought for years, but never having ( or for some reason ) the inclination to join in and be counted or heard
I learned to be overlooked by doctors ect, the public perception ect. But from others that are supposed to be feeling similar things, and going through similar things as i did , well that just felt real painful you know.
So easy when one feels like that, to see so many negative things, and be blinkered by the good thats also happening. But you have made me feel that yes i think i do have to look a little harder. And i certainly understand for many that kinship, freindship, is all they might want right now from the members here.
They may not have the strength, or the luxary of fight, that i now am blessed with. And just need support, I need to consider that more before i become too judgmental. Because thats the very thing ive accused society of doing to me. to all of us. with the this paradox of a illness called ME.
But i may from time to time slip up a bit im afraid, I am a very passionate person by nature, and often jump in feet first with my heart telling me what i think ( feel ) needs to be said.
I still think thats a good quality. But may on occassion make me a little shortsited in the pursuit of truth and justice, and our right to be treated as human beings with a disease. Not a belittling excuse of a condition that is often thrust upon us from those that are really ( and maybe never will ) have reason to look at things from a unbiased position.
Its hard though isnt it. because we are all biased are we not. But just sit different sides of the biased fence, And i justify that by my own self righteouse belieafs, i make no excuses for that im afraid. But i do clearly see the problems you all have spent a long time trying to resolve.
If only i could see some light, and some humanity, and consideration, and just a little bit of a open mind from some mental health proffesionals. That it might help me bury my distaste for a lot of those biased, closed minded, poor excuses of health careres. who call themselves Psychatrists.
Maybe, just maybe this idea here is a good one, but untill i see the positive. its like why bother you know, weve been there before.
Almost feels like they should be making the first move, not us. cant help but feel its us who has been thrown away like a piece of confused rubbish. and hurt the most, not them.
I know this, i didnt see jans post about the panorama petition before i weighed in on here. on refelection i feel guilty of ignorance myself now. I signed it. i really hope more sign that petition. I understand some may not be able to afford donations to causes, but signing something like a petition just costs consideration. I know we can all afford consideration, you see there i go again lol. But its important those small steps, if we cant help ourselves, what right do we have to ask others to help us please sign it folks. i cant belive its not brimming with replys not good. Might hang around the forum. feel more like i want to be here today. Thanks for the nice words on pm. Mark you know i think you can teach me alot
infact i reckon most can here, just need to listen harder i think.
I think your experiance of the members, and of the forum itself is showing me that maybe i need to look a little harder, or dig a little deeper before i assume many things. But you know Mark i never had a voice 15 years ago, as a young man bewildered and ill, with all the negativety that surrounds this illnes, doctors, psychaitrists, lack of real medical help ( we expect the nhs to save us dont we ) and when they didnt i felt personally, on a very deep level. let down.
And i still see a lot of that continuing today ( although things have improved a lot ) so all that energy that i didnt have then, and anger and emotion built up over the years, is probably erupting like a volcanoe on this group.
I realize you are all in the same boat i was, and should be treated as such, and considered as such. I did for a while there feel like my views were being overlooked, ignored if you will. Which kind of felt painful because, i was drawn to this forum more than any other that i ever occassionly clicked on.
Kind of felt a kinship that i have never had the luxury of feeling before. With so many people saying things that i had thought for years, but never having ( or for some reason ) the inclination to join in and be counted or heard
I learned to be overlooked by doctors ect, the public perception ect. But from others that are supposed to be feeling similar things, and going through similar things as i did , well that just felt real painful you know.
So easy when one feels like that, to see so many negative things, and be blinkered by the good thats also happening. But you have made me feel that yes i think i do have to look a little harder. And i certainly understand for many that kinship, freindship, is all they might want right now from the members here.
They may not have the strength, or the luxary of fight, that i now am blessed with. And just need support, I need to consider that more before i become too judgmental. Because thats the very thing ive accused society of doing to me. to all of us. with the this paradox of a illness called ME.
But i may from time to time slip up a bit im afraid, I am a very passionate person by nature, and often jump in feet first with my heart telling me what i think ( feel ) needs to be said.
I still think thats a good quality. But may on occassion make me a little shortsited in the pursuit of truth and justice, and our right to be treated as human beings with a disease. Not a belittling excuse of a condition that is often thrust upon us from those that are really ( and maybe never will ) have reason to look at things from a unbiased position.
Its hard though isnt it. because we are all biased are we not. But just sit different sides of the biased fence, And i justify that by my own self righteouse belieafs, i make no excuses for that im afraid. But i do clearly see the problems you all have spent a long time trying to resolve.
If only i could see some light, and some humanity, and consideration, and just a little bit of a open mind from some mental health proffesionals. That it might help me bury my distaste for a lot of those biased, closed minded, poor excuses of health careres. who call themselves Psychatrists.
Maybe, just maybe this idea here is a good one, but untill i see the positive. its like why bother you know, weve been there before.
Almost feels like they should be making the first move, not us. cant help but feel its us who has been thrown away like a piece of confused rubbish. and hurt the most, not them.
I know this, i didnt see jans post about the panorama petition before i weighed in on here. on refelection i feel guilty of ignorance myself now. I signed it. i really hope more sign that petition. I understand some may not be able to afford donations to causes, but signing something like a petition just costs consideration. I know we can all afford consideration, you see there i go again lol. But its important those small steps, if we cant help ourselves, what right do we have to ask others to help us please sign it folks. i cant belive its not brimming with replys not good. Might hang around the forum. feel more like i want to be here today. Thanks for the nice words on pm. Mark you know i think you can teach me alot
infact i reckon most can here, just need to listen harder i think.
No worries, free at last.
You are continuing to give me a lot to think about as well. I think all the points you made were valid, and whereas you're a newcomer here, I'm the newcomer in a wider sense because until the XMRV announcement I was barely aware of any of the politics of it - I didn't, and don't, know if I have CFS, IBS, MCS, or something else, and all I found from my web searches was a confusing mass of information that I wasn't up to processing, so I largely took the approach of becoming my own doctor, experimenting myself to try to figure out how I work now, and not trusting anything I read, anywhere, because it seemed obvious that nobody really knew. It would have been different if I'd been diagnosed, but the only diagnosis I could get was MCS, and by the time I cottoned on to ME/CFS I concluded it was a diagnosis that couldn't help me and might harm me, so I never went there. I feel quite lucky about that decision now actually, who knows what I might have gone through, I would have potentially been an incredibly vulnerable person if I'd been packed off to the shrinks.
So I freely admit that I'm quite ignorant of the history and background experiences of those that have been involved in the politics - although on other levels I had figured out a huge amount for myself, and I'm constantly being amazed at finding that all my long-standing pet theories, political attitudes and general thinking about my illness is not "just me" but is absolutely common knowledge within the community. It gives me a unique kind of certainty about a lot of things, because it's too much of a co-incidence that my own conclusions and attitudes are the same as those of the patient community as a whole. And at the same time I keep coming across glaring gaps in my knowledge of certain situations - just like the subject of this thread, where I'm coming from first principles at ideas that the community has already discovered do not work. It's a huge learning curve for me, and I'm rapidly learning when to trust what people are saying (which doesn't come naturally to me, I like to learn things for myself), while at the same time trying to preserve the advantages of coming to all this afresh.
Landing on this forum, finding a unique kinship, suddenly finding this incredible experience of actually being heard and understood for the first time in decades, without wanting to be blase, that's all standard stuff! :Retro smile: I believe a unique kind of psychological healing process then begins for many, at least it has for me. Just to warn you, I think another common pattern is to get carried away in the excitement and try to do too much here at the expense of one's life in the real world, which is of course a big danger in any virtual arena. I suspect the emotions stirred up for many are so powerful that they are potentially harmful if you let yourself get too carried away, and the sheer quantity of what's suddenly available to members here can sometimes be overwhelming. So Pacing is more important than ever...
We all slip up and cross lines from time to time, and one of my concerns here is to do what I can to ensure that everyone here can continue to remain on the forum and discuss the difficult and painful issues without things degenerating into a dispute which ends up with us losing somebody.
There's a post from Laura earlier on this thread (#120) that might fit the bill re: your wish to hear the voice of a sane psychologist - not a psychiatrist I know, but maybe it fits the bill. Like I said earlier, this thread has made me too feel again my desire to find some good in that whole discipline, I don't like the way that one School has undermined my whole faith in the subject, I know it's a human tendency to throw the baby out with the bathwater and I'm rather prone to do that myself.
Yeah of course they should be making the first moves, but I was never talking about reconciliation with the Wessely School anyway, I agree that's ridiculous, there can be no forgiveness there without an apology which, surely, will never come. Although I am perhaps unusual in thinking that for own well-being we can in some sense try to understand how a few innocuous misunderstandings of philosophy, in combination with a certain type of personality, can lead people who see themselves as valiant healers to inflict all kinds of indignities and abuses. I'm quite open to the idea that they might just be plain evil, but since one can never look inside another's head I suspect it's healthier for me personally to proceed from an assumption that at least some of them are of the "sincere but misguided" variety.
TIP:
If you want to publicise something like the Panorama petition, set up a signature advertising and linking to it, and all your old posts will then carry that advert.
Amongst everything that's going on, I hadn't actually noticed that myself, so thanks for that.
I think the fundamental point you are making is are absolutely right, as a forum we do sometimes seem to get carried away with all kinds of distractions here and need constant reminding to do the simple but important things like that petition:
http://www.forums.aboutmecfs.org/showthread.php?3851
I guess maybe the Panorama thread has been slow because many of our US-based friends may not quite realise how fundamentally important the Panorama thing could be for UK public opinion and thereby for all of us, so maybe you can help explain the significance.
For example, nothing is more distracting than this, which I nevertheless heartily recommend to all:
http://www.forums.aboutmecfs.org/showthread.php?2642
So I look forward to you hassling us all to sign stuff and write letters for a long time to come - or, at least, until the day when we are all free at last!
You are continuing to give me a lot to think about as well. I think all the points you made were valid, and whereas you're a newcomer here, I'm the newcomer in a wider sense because until the XMRV announcement I was barely aware of any of the politics of it - I didn't, and don't, know if I have CFS, IBS, MCS, or something else, and all I found from my web searches was a confusing mass of information that I wasn't up to processing, so I largely took the approach of becoming my own doctor, experimenting myself to try to figure out how I work now, and not trusting anything I read, anywhere, because it seemed obvious that nobody really knew. It would have been different if I'd been diagnosed, but the only diagnosis I could get was MCS, and by the time I cottoned on to ME/CFS I concluded it was a diagnosis that couldn't help me and might harm me, so I never went there. I feel quite lucky about that decision now actually, who knows what I might have gone through, I would have potentially been an incredibly vulnerable person if I'd been packed off to the shrinks.
So I freely admit that I'm quite ignorant of the history and background experiences of those that have been involved in the politics - although on other levels I had figured out a huge amount for myself, and I'm constantly being amazed at finding that all my long-standing pet theories, political attitudes and general thinking about my illness is not "just me" but is absolutely common knowledge within the community. It gives me a unique kind of certainty about a lot of things, because it's too much of a co-incidence that my own conclusions and attitudes are the same as those of the patient community as a whole. And at the same time I keep coming across glaring gaps in my knowledge of certain situations - just like the subject of this thread, where I'm coming from first principles at ideas that the community has already discovered do not work. It's a huge learning curve for me, and I'm rapidly learning when to trust what people are saying (which doesn't come naturally to me, I like to learn things for myself), while at the same time trying to preserve the advantages of coming to all this afresh.
Landing on this forum, finding a unique kinship, suddenly finding this incredible experience of actually being heard and understood for the first time in decades, without wanting to be blase, that's all standard stuff! :Retro smile: I believe a unique kind of psychological healing process then begins for many, at least it has for me. Just to warn you, I think another common pattern is to get carried away in the excitement and try to do too much here at the expense of one's life in the real world, which is of course a big danger in any virtual arena. I suspect the emotions stirred up for many are so powerful that they are potentially harmful if you let yourself get too carried away, and the sheer quantity of what's suddenly available to members here can sometimes be overwhelming. So Pacing is more important than ever...
We all slip up and cross lines from time to time, and one of my concerns here is to do what I can to ensure that everyone here can continue to remain on the forum and discuss the difficult and painful issues without things degenerating into a dispute which ends up with us losing somebody.
There's a post from Laura earlier on this thread (#120) that might fit the bill re: your wish to hear the voice of a sane psychologist - not a psychiatrist I know, but maybe it fits the bill. Like I said earlier, this thread has made me too feel again my desire to find some good in that whole discipline, I don't like the way that one School has undermined my whole faith in the subject, I know it's a human tendency to throw the baby out with the bathwater and I'm rather prone to do that myself.
Yeah of course they should be making the first moves, but I was never talking about reconciliation with the Wessely School anyway, I agree that's ridiculous, there can be no forgiveness there without an apology which, surely, will never come. Although I am perhaps unusual in thinking that for own well-being we can in some sense try to understand how a few innocuous misunderstandings of philosophy, in combination with a certain type of personality, can lead people who see themselves as valiant healers to inflict all kinds of indignities and abuses. I'm quite open to the idea that they might just be plain evil, but since one can never look inside another's head I suspect it's healthier for me personally to proceed from an assumption that at least some of them are of the "sincere but misguided" variety.
TIP:
If you want to publicise something like the Panorama petition, set up a signature advertising and linking to it, and all your old posts will then carry that advert.
Amongst everything that's going on, I hadn't actually noticed that myself, so thanks for that.
I think the fundamental point you are making is are absolutely right, as a forum we do sometimes seem to get carried away with all kinds of distractions here and need constant reminding to do the simple but important things like that petition:
http://www.forums.aboutmecfs.org/showthread.php?3851
I guess maybe the Panorama thread has been slow because many of our US-based friends may not quite realise how fundamentally important the Panorama thing could be for UK public opinion and thereby for all of us, so maybe you can help explain the significance.
For example, nothing is more distracting than this, which I nevertheless heartily recommend to all:
http://www.forums.aboutmecfs.org/showthread.php?2642
So I look forward to you hassling us all to sign stuff and write letters for a long time to come - or, at least, until the day when we are all free at last!
Thanks to everyone who contributed to this thread, and in ways I'd love to be can't just now. Great to see the way it developed, with some very thoughtful and stimulating contributions.
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Thanks again for the consideration of that reply. I think Adam needs to be the forums press agent hes clearly qualified for the task, what a great journalist. Hes skills and insight are just Top notch lol.
That was a great light hearted moment there, really made me laugh, Even wessley might see the funny irony in that great play, wouldnt that be a coming together of minds, even just for a nano second. Before the boxing gloves go back on lol. AHH whats that i hear:Retro mad: Ahh DING DING. Now the buggers gonna get it. No delusions just think ive got special powers gonna knock your block off he he. Just a joke, ill let my mind and truth do the boxing
That was a great light hearted moment there, really made me laugh, Even wessley might see the funny irony in that great play, wouldnt that be a coming together of minds, even just for a nano second. Before the boxing gloves go back on lol. AHH whats that i hear:Retro mad: Ahh DING DING. Now the buggers gonna get it. No delusions just think ive got special powers gonna knock your block off he he. Just a joke, ill let my mind and truth do the boxing
Do you and do any others here think Lymphoma or brain cancer might be psychological too?
With it seeming that a number of healthy people have XMRV infections without having CFS (if the WPI's figure's are right) then there probably are other factors involved. If XMRV panned out, I'd be pretty surprised if there was a significant behavioural/psychological component to CFS, but it's still possible.
re the rest of this thread - it seems mark has engineered a gentle compromise, and I have nothing more to add - unless a psychologiser does decide to join us! Actually: it would be good if someone could let me know of a better label than 'psychologiser', or if we could create one. Is there a concise term that the psychologisers use for their own approach to CFS? Not that I know of.
re the rest of this thread - it seems mark has engineered a gentle compromise, and I have nothing more to add - unless a psychologiser does decide to join us! Actually: it would be good if someone could let me know of a better label than 'psychologiser', or if we could create one. Is there a concise term that the psychologisers use for their own approach to CFS? Not that I know of.
It's called "One Size Fits All"
Esther, hope this helps:
That would be The Psychologisers, Psycholobby, or Pseudoscience.
Yes, it's called CBT/GET.
Yes, it's called CBT/GET.
To expand on their approach to treatment of ME/CFS:
It's called One-Size-Fits-All
It's called One-Size-Fits-All
I agree with Angela Kennedy et al, that the very idea of this thread is to put it mildly, an incredibly bad idea. Who gave "Esther" the right to be spokesperson for this forum in how it interacts (or doesn't) with the people who've done so much harm to sufferers over the decades? Watch the Frontline on ME programme (may still be on Youtube) to see how "satisfying" and for whom, a "debate" about the legitimacy of ME actually is -- if many arguments on comments pages, rapid responses and blogs aren't evidence enough. Some of us remember "MEssage UK" where Vincent Deary was outed. Though it's extraordinary for any of "them" to leave the comfort zones and i think he probably learned from that!
This sort of thing may only confirm ideas people have about Esther's agenda and her "well, I'm not really interested and in fact quite bored by this discussion but I'll argue the toss over GET for ten pages with you" type postings.
This sort of thing may only confirm ideas people have about Esther's agenda and her "well, I'm not really interested and in fact quite bored by this discussion but I'll argue the toss over GET for ten pages with you" type postings.
For me it sounds like inviting Adolf Eichmann to discuss Final Solution with Holocaust survivors. :worried:
I apologize for not being able to find a less emotion-laden analogy. Nevertheless, I hope that in the future there will be some "Simon Wiesenthals" hunting down all the "Simon Wesselys"
I apologize for not being able to find a less emotion-laden analogy. Nevertheless, I hope that in the future there will be some "Simon Wiesenthals" hunting down all the "Simon Wesselys"
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