Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 You come back and now this list is suppose to change to what you want it to be? This seems a little pushy to me even if you are correct. Bob > Now that I am back to this forum and looking for the next level of wellness I am so disappointed to find it has changed so much and that I am obliged to wade thru so much off topic stuff, stuff about theories of why governments do things or not and what pharmco's are thinking or not. > None of that relates to our purpose here and although I suppose I am powerless to stop it, at least I am asking that posts that have nothing to do with experimental treatments or the theories behind such treatments could at least be marked off topic. > Until there is a treatment related to ciguatera it might be helpful to tag those endless discussions too. Not to mention how we feel about a certain advocacy group and its controversial leader! > > If we can't focus on treatments, no wonder no one else can, either! > Adrienne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Even if I am right I am wrong? Now that bulb is not burning too brightly. Since when is name calling your thing Bob? People call you names, shame you here? Re: so disappointed! You come back and now this list is suppose to change to what you want it to be? This seems a little pushy to me even if you are correct. Bob > Now that I am back to this forum and looking for the next level of wellness I am so disappointed to find it has changed so much and that I am obliged to wade thru so much off topic stuff, stuff about theories of why governments do things or not and what pharmco's are thinking or not. > None of that relates to our purpose here and although I suppose I am powerless to stop it, at least I am asking that posts that have nothing to do with experimental treatments or the theories behind such treatments could at least be marked off topic. > Until there is a treatment related to ciguatera it might be helpful to tag those endless discussions too. Not to mention how we feel about a certain advocacy group and its controversial leader! > > If we can't focus on treatments, no wonder no one else can, either! > Adrienne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Sounds like this is the wrong list for you to be reading . There are many others . > > Now that I am back to this forum and looking for the next level of > wellness I am so disappointed to find it has changed so much and that I > am obliged to wade thru so much off topic stuff, stuff about theories > of why governments do things or not and what pharmco's are thinking or > not. > > None of that relates to our purpose here and although I suppose I am > powerless to stop it, at least I am asking that posts that have nothing > to do with experimental treatments or the theories behind such > treatments could at least be marked off topic. > > Until there is a treatment related to ciguatera it might be helpful > to tag those endless discussions too. Not to mention how we feel about > a certain advocacy group and its controversial leader! > > > > If we can't focus on treatments, no wonder no one else can, either! > > Adrienne > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Just view it on the web itself (http://health.groups/). Then you can see post titles and only click on ones that appeal to you. Saves you time, irritation, judgment, annoyance, all negative feelings that can depress your immune system, while allowing others to post as they wish about whatever is important to them. It's a win-win. See? An easy solution. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Hi Adrienne, I too have noticed a change in this group's direction and have also been disappointed by the change. On the home page it does state clearly: * This is not a support or political action group but one focused on treatment issues ONLY In the past, the moderator would direct this type of discussion to other groups, such as cfs_research, leaving the group for treatments only. It is difficult for people, especially those who are really sick, to wade through all of these political posts that are not dealing with treatment issues. Is anyone moderating this group? Kind regards, Trudy Message: 16 Date: Fri, 29 Apr 2005 00:19:05 -0600 From: " Adrienne " <duckblossm@...> Subject: so disappointed! Now that I am back to this forum and looking for the next level of wellness I am so disappointed to find it has changed so much and that I am obliged to wade thru so much off topic stuff, stuff about theories of why governments do things or not and what pharmco's are thinking or not. None of that relates to our purpose here and although I suppose I am powerless to stop it, at least I am asking that posts that have nothing to do with experimental treatments or the theories behind such treatments could at least be marked off topic. Until there is a treatment related to ciguatera it might be helpful to tag those endless discussions too. Not to mention how we feel about a certain advocacy group and its controversial leader! If we can't focus on treatments, no wonder no one else can, either! Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Sorry to have changed the focus of this group. I know it's supposed to be treatment only. But I am so tired of having that treatment and my access to therapy denied or limited by a doctor mindset that is generated and supported by CFSers illness presentations which support doctors contention that nothing serious is happening. If you want " anion binding " therapies for Ciguatoxin epitope molecules, you first have to get the doctors to realize that you aren't " Just tired " and are really dealing with a ferocious neurotoxin. Saying that " Stress and Stressors " or " overexertion " are major factors in your illness will NEVER inspire a doctor to search for methods to help you deal with circulationg neurotoxins. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Dear , Thank you for letting me know how you feel. I am sorry that your fatigue is more than physical: " I am so tired of having that treatment and my access to therapy denied or limited, " you said. Your concern is quite legitimate to me even though I do not actively share it. I mean, I am DEADLY tired of being sick after a couple of decades of total disability, but that just happens to be how it is. I am never well enough to expend much energy on concern for when other folks, society, or some part of it are not doing right by me. I find I am usually powerless to change such things, and I like to save my limited energy for areas where I can experience success. I used to be quite pugnacious, combatative, but it usually was a terrible waste of myself. I am just asking that we stick to the purpose of this particular list, especially since there are others where these non-treatment matters are part of the purpose of the group. It is detrimental to me and maybe to other sick people to have to wade thru off-topic posts. (I will try again to read online. Maybe their new format will work for me now, although it was very bad in the past. If you would like to dialog w. me backchannel about how I get by in spite of everything, I will be glad to do that.) Adrienne Re: so disappointed! Sorry to have changed the focus of this group. I know it's supposed to be treatment only. But I am so tired of having that treatment and my access to therapy denied or limited by a doctor mindset that is generated and supported by CFSers illness presentations which support doctors contention that nothing serious is happening. If you want " anion binding " therapies for Ciguatoxin epitope molecules, you first have to get the doctors to realize that you aren't " Just tired " and are really dealing with a ferocious neurotoxin. Saying that " Stress and Stressors " or " overexertion " are major factors in your illness will NEVER inspire a doctor to search for methods to help you deal with circulationg neurotoxins. - 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 29, 2005 Report Share Posted April 29, 2005 , I think we are blaming the victims if we say that PWC are presenting the illness 'wong.' The truth is that no credible doctor or researcher would take seriously our theories about this illness, they are too stuck on their own ideas. It really does not matter how we present this. They have an obligation to explore all aspects of this disease. That is what we pay them for. If patients say they notice that stress exacerbates their symptoms, then that is just one more clue for the researchers. If patients say they were having a lot of stress when they got ill, then that is also another clue. It is not a mistake to say these things to a doctor or researcher, it is the truth. If there is a common misunderstanding about the role of stress, and whether it is a cause or an effect, or maybe both, then that is an issue for the researchers to sort out. They have measures for these things. I don't know why you are being denied treatments, but I am not surprised, because I am sure you want to try the latest, experimental treatments. The institutional resistance to experimental therapy for ANY illness is strong, because of the dollars involved. It is not just CFIDS, and it is not because of what PWC say, it is because nobody really understands this illness, and the institutional response reflects that. --Kurt Re: so disappointed! Sorry to have changed the focus of this group. I know it's supposed to be treatment only. But I am so tired of having that treatment and my access to therapy denied or limited by a doctor mindset that is generated and supported by CFSers illness presentations which support doctors contention that nothing serious is happening. If you want " anion binding " therapies for Ciguatoxin epitope molecules, you first have to get the doctors to realize that you aren't " Just tired " and are really dealing with a ferocious neurotoxin. Saying that " Stress and Stressors " or " overexertion " are major factors in your illness will NEVER inspire a doctor to search for methods to help you deal with circulationg neurotoxins. - 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 29, 2005 Report Share Posted April 29, 2005 and all- The last doc I went to, I told him I was diagnosed w/ 'CFS' and he said if that was what I had, there was no treatment. He did a test for my adrenal function which I had never had before. I think he did the right thing. Unless you go to a Cheney type doc, the best one can expect is for them to test for the cause of your symptoms, or try a relatively harmless therapy like nystatin. Of course the worst outcome is for the doc to not believe in CFS or tell you that it is 'all in your head'. In summary, I think it best to tell a doc your symptoms and then casually mention that in the past you were given a CFS diagnosis. FWIW. Mike C > >> By now, everyone who speaks English knows what " CFS " is. > They know what you mean when you attempt to describe it. > They may choose not to " believe " in it, but at least they know what > it is. > This is what I mean when I say that CFSers are promoting the > ridiculous concepts promoted by the deniers by saying amongst > ourselves that the continued problem is our failure to " educate " . > As many references to CFS and descriptions that you have seen in the > media, can this even be possible? > They speak English, don't they? > - Quote Link to comment Share on other sites More sharing options...
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