Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 In a message dated 8/2/00 2:18:16 AM Central Daylight Time, egroups writes: << Only ONE came back to thank Jesus.... 90+% of recovered people put this experience totally behind them and out of their mind. A small percentage may stay around for a while to try to help others.... I would deem CFIDS as being a potential near-living death experience -- they enjoy the possibility of a new life greatly and want to get on with it... >> Let's really think about this for a minute. If I (or any of you) had recovered two years ago, what would we have to contribute? The treatments are changing so fast (like whey), that what helped folks recover a few years ago may be obsolete. Not to mention the fact that regardless of what one does, 'recovery' may be spontaneous irrespective of treatments. I know Ken will disagree with this statement, but it very well may be true. It may just take several years for a person's immune system to fight the offending pathogen. Somebody just posted about Europeans whose bodies 'evolved' to fight the plague. So, my point is, what would a normal person (non-celeb) who recovered three years ago spontaneously have to add to help us? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 I hate to say it, but I kind of agree with Mike's statement below. It seems like every " recovered " person I have seen or heard of with CFIDS followed a different treatment protocol, and it leaves me feeling confused and lost about the whole situation. I often wonder if people don't just attribute recovery to whatever they were doing at the time (yeast free diet, juice fasts, UltraClear, etc.). I think recovery narratives are useful, but only if used responsibly. I tried to get one mostly recovered writer with CFIDS to write a piece about her recovery for my book, Stricken, but she said she didn't want people to feel blamed for not getting better, that she recognized she wasn't special, just lucky. This was the most responsible response I have heard from a recovered person. Pretty much every other recovered person I have seen has tried to sell me a product of some kind after I have talked to them for five minutes (the products are never the same ones). I DO believe in hope, and I think it is essential. However, I have been sick for eight years and I have seen lots of trends come and go, including on this very list. A bunch of people using one product, then switching to another, then switching to another. I would like us all to get better. But I think it's important not to be overtaken with missionary zeal about the whole thing. I re-read an article recently about long-term survivors of HIV and AIDS. I had read it in the early 90's, before the protease inhibitors existed, and I was living in San Francisco, where AIDS was killing everyone. I helped a therapist do research on long-term surivors. In the article, the long-term survivors talked about what helped them. They all cited different things. The only thing that was consistent was that they all said " hope. " I re-read it, and it seemed to make them look particularly special because they felt hope. I thought to myself, what person with AIDS WOULDN'T hope to get better? And then I thought, doesn't this - in a way - blame those who don't get better, who in fact die, by saying they are without hope? I think within those kinds of statements is the insidious thread of prejudice that keeps solid research from being done to begin with. We are all desperate for a cure. A million people would buy a book of recovery stories. I just say, if it's done, as Mike says below, make sure it is done in a way that isn't just trendy - i.e. about trends of today that don't hold up tomorrow. Peggy << Let's really think about this for a minute. If I (or any of you) had recovered two years ago, what would we have to contribute? The treatments are changing so fast (like whey), that what helped folks recover a few years ago may be obsolete. Not to mention the fact that regardless of what one does, 'recovery' may be spontaneous irrespective of treatments. I know Ken will disagree with this statement, but it very well may be true. It may just take several years for a person's immune system to fight the offending pathogen. Somebody just posted about Europeans whose bodies 'evolved' to fight the plague. So, my point is, what would a normal person (non-celeb) who recovered three years ago spontaneously have to add to help us? Mike >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 What if what is really needed is a purely scientific approach much like any type of protocol testing that is correctly done. You document, you document and then again, you document. At first, you have chaos, because you are receiving all kinds of different information that seems to have no correlation. Slowly, you see patterns emerge, strengthen and endure. That's what should be in the book about CFS/FM... Patterns of/for Success. Inspiration is hope given to another. Perhaps instead of interviews, pointed, fact finding questionaires and later some follow-up questions where necessary, and then some additional phone calls may need to be made to a select few. That would start a " paper-trail " that would be hard to dispute if done correctly. These are just some thoughts.... because we'd need a viable list of " cured " , " fully functioning " individuals who'd formerly suffered from CFS/ME. If such material could be gathered in an independent, non-slanted way, then it could be decided the best forum for presentation. Perhaps selecting and writing about several real people's experiences that best fit catagories of success that emerge from the samplings-- would be all that was needed. Then again, perhaps writing composites become the way to go, then again, perhaps another as yet unknown venue is preferable to present the info gleaned. Again, just some thoughts of how I would do it if I was writing it and I wanted to present a really complete work. Ruth In a message dated 8/2/2000 8:38:10 PM Central Daylight Time, Peggomatic@... writes: > I hate to say it, but I kind of agree with Mike's statement below. It seems > like every " recovered " person I have seen or heard of with CFIDS followed a > different treatment protocol, and it leaves me feeling confused and lost > about the whole situation. I often wonder if people don't just attribute > recovery to whatever they were doing at the time (yeast free diet, juice > fasts, UltraClear, etc.). I think recovery narratives are useful, but only > if used responsibly. I tried to get one mostly recovered writer with CFIDS > to write a piece about her recovery for my book, Stricken, but she said she > didn't want people to feel blamed for not getting better, that she > recognized > she wasn't special, just lucky. This was the most responsible response I > have heard from a recovered person. Pretty much every other recovered > person > I have seen has tried to sell me a product of some kind after I have talked > to them for five minutes (the products are never the same ones). I DO > believe in hope, and I think it is essential. However, I have been sick for > > eight years and I have seen lots of trends come and go, including on this > very list. A bunch of people using one product, then switching to another, > then switching to another. I would like us all to get better. But I think > it's important not to be overtaken with missionary zeal about the whole > thing. I re-read an article recently about long-term survivors of HIV and > AIDS. I had read it in the early 90's, before the protease inhibitors > existed, and I was living in San Francisco, where AIDS was killing everyone. > > I helped a therapist do research on long-term surivors. In the article, the > > long-term survivors talked about what helped them. They all cited different > > things. The only thing that was consistent was that they all said " hope. " > I > re-read it, and it seemed to make them look particularly special because > they > felt hope. I thought to myself, what person with AIDS WOULDN'T hope to get > better? And then I thought, doesn't this - in a way - blame those who don't > > get better, who in fact die, by saying they are without hope? I think > within > those kinds of statements is the insidious thread of prejudice that keeps > solid research from being done to begin with. We are all desperate for a > cure. A million people would buy a book of recovery stories. I just say, > if > it's done, as Mike says below, make sure it is done in a way that isn't just > > trendy - i.e. about trends of today that don't hold up tomorrow. > > Peggy > > > << > > Let's really think about this for a minute. If I (or any of you) had > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2000 Report Share Posted August 4, 2000 Ruth, Sounds very logical! Ellen Re: re: book idea > What if what is really needed is a purely scientific approach much like any > type of protocol testing that is correctly done. You document, you document > and then again, you document. At first, you have chaos, because you are > receiving all kinds of different information that seems to have no > correlation. Slowly, you see patterns emerge, strengthen and endure. That's > what should be in the book about CFS/FM... Patterns of/for Success. > Inspiration is hope given to another. > Perhaps instead of interviews, pointed, fact finding questionaires and later > some follow-up questions where necessary, and then some additional phone > calls may need to be made to a select few. That would start a " paper-trail " > that would be hard to dispute if done correctly. These are just some > thoughts.... because we'd need a viable list of " cured " , " fully functioning " > individuals who'd formerly suffered from CFS/ME. If such material could be > gathered in an independent, non-slanted way, then it could be decided the > best forum for presentation. Perhaps selecting and writing about several > real people's experiences that best fit catagories of success that emerge > from the samplings-- would be all that was needed. Then again, perhaps > writing composites become the way to go, then again, perhaps another as yet > unknown venue is preferable to present the info gleaned. Again, just some > thoughts of how I would do it if I was writing it and I wanted to present a > really complete work. > Ruth > > In a message dated 8/2/2000 8:38:10 PM Central Daylight Time, > Peggomatic@... writes: > > > I hate to say it, but I kind of agree with Mike's statement below. It > seems > > like every " recovered " person I have seen or heard of with CFIDS followed > a > > different treatment protocol, and it leaves me feeling confused and lost > > about the whole situation. I often wonder if people don't just attribute > > recovery to whatever they were doing at the time (yeast free diet, juice > > fasts, UltraClear, etc.). I think recovery narratives are useful, but > only > > if used responsibly. I tried to get one mostly recovered writer with > CFIDS > > to write a piece about her recovery for my book, Stricken, but she said > she > > didn't want people to feel blamed for not getting better, that she > > recognized > > she wasn't special, just lucky. This was the most responsible response I > > have heard from a recovered person. Pretty much every other recovered > > person > > I have seen has tried to sell me a product of some kind after I have > talked > > to them for five minutes (the products are never the same ones). I DO > > believe in hope, and I think it is essential. However, I have been sick > for > > > > eight years and I have seen lots of trends come and go, including on this > > very list. A bunch of people using one product, then switching to > another, > > then switching to another. I would like us all to get better. But I > think > > it's important not to be overtaken with missionary zeal about the whole > > thing. I re-read an article recently about long-term survivors of HIV and > > AIDS. I had read it in the early 90's, before the protease inhibitors > > existed, and I was living in San Francisco, where AIDS was killing > everyone. > > > > I helped a therapist do research on long-term surivors. In the article, > the > > > > long-term survivors talked about what helped them. They all cited > different > > > > things. The only thing that was consistent was that they all said " hope. " > > > I > > re-read it, and it seemed to make them look particularly special because > > they > > felt hope. I thought to myself, what person with AIDS WOULDN'T hope to > get > > better? And then I thought, doesn't this - in a way - blame those who > don't > > > > get better, who in fact die, by saying they are without hope? I think > > within > > those kinds of statements is the insidious thread of prejudice that keeps > > solid research from being done to begin with. We are all desperate for a > > cure. A million people would buy a book of recovery stories. I just say, > > if > > it's done, as Mike says below, make sure it is done in a way that isn't > just > > > > trendy - i.e. about trends of today that don't hold up tomorrow. > > > > Peggy > > > > > > << > > > > Let's really think about this for a minute. If I (or any of you) had > > > > > > 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 April 22, 2004 Report Share Posted April 22, 2004 This is so weird, for the past two days I have been thinking about how to put together a book, like we talked about months ago. In fact last night I was working on an outline. I went to there site and read there ideas about a book and I think they have some good ones, but I keep hearing in my head the words my father used to say. (he was the president of a large company) KISS ------KEEP IT SIMPLE STUPID Sometimes the simple things make the biggest impact. Its our own personal stories that are the most compelling. I don't think the book has to say much more than the great brochere that Colleen put together and than 50 to 100 of personal stories. written in our own words. I even think that the book could be called " dying for bigger breasts " by 100 women or somthing like that. I don't want to butt in on there group, I've never posted there before. And hell what do I know. Love Cricket Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 I would be more than happy to lay out a book for us. I can also illustrate it. Everyone who wanted could contribute. If I'm going to be part of a book, I'd like to have more creative control over it rather than just donating art...any one else interested? From: " cricket5643000 " <cricket5643000@...> Reply- Date: Thu, 22 Apr 2004 21:15:56 -0000 Subject: Book idea This is so weird, for the past two days I have been thinking about how to put together a book, like we talked about months ago. In fact last night I was working on an outline. I went to there site and read there ideas about a book and I think they have some good ones, but I keep hearing in my head the words my father used to say. (he was the president of a large company) KISS ------KEEP IT SIMPLE STUPID Sometimes the simple things make the biggest impact. Its our own personal stories that are the most compelling. I don't think the book has to say much more than the great brochere that Colleen put together and than 50 to 100 of personal stories. written in our own words. I even think that the book could be called " dying for bigger breasts " by 100 women or somthing like that. I don't want to butt in on there group, I've never posted there before. And hell what do I know. Love Cricket Quote Link to comment Share on other sites More sharing options...
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