Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Bill, I had the same thoughts. Doesn't the NCF have a tissue bank of some sort they are collecting for research? I really feel would want this too! marcia /Tissue bank the passing of was such dreadful news. i didn't know him very well or anything, but we had many communications about theories on CFS and how we might try to get better. after the initial shock of this news hit me, i thought about the other young man who passed away from CFS in Wisconsin. i think his family started a tissue bank for CFS and i was wondering if anybody had any ideas on how we might suggest to 's family that they should contact this group about 's passing. it seems to me that 's tireless efforts to research our disease should continue on after his passing. and a donation to a tissue bank that is trying to identify the pathology of CFS might be good way to do that. i know form the postings that his family may have been part of the problem, so i don't know if this is out of the question. anybody have any ideas on this? gosh, this is such awful news. thanks bill 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 December 19, 2005 Report Share Posted December 19, 2005 +1 on the tissue bank. I have been meaning to ask Dr. Cheney about this. and I exchanged a few e-mails backchannel. I will be interested to hear what happened. Zippy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Hi, This is an excellent thought. I am in Wisconsin and know Pat Fero, who started the tissue bank in memory of her son who died unexpectedly after several years of having CFS. I just happened to have tried to reach Pat today. She is in Florida, I was told, and available by email at bp.fero@.... If you can't reach her this way, try calling 608-837-9540 and perhaps the person that is housesitting can assist you further. I believe Konnie Knox of Milwaukee, is involved in this tissue bank, too, though I cannot recall the details. It is important to take these opportunities when they arise. I had a patient with CFS that committed suicide. I had the agreement of her husband to get her brain tissue for research, but due to my own illness and being quite distraught about my patient's death, I didn't follow up quickly enough, and when I did, the husband didn't reply to the two letters that I sent. I imagine that he had moved on emotionally and didn't want to be reminded of it all again. Kris /Tissue bank > > > the passing of was such dreadful news. i didn't know him very > well or anything, but we had many communications about theories on > CFS and how we might try to get better. > > after the initial shock of this news hit me, i thought about the > other young man who passed away from CFS in Wisconsin. i think his > family started a tissue bank for CFS and i was wondering if anybody > had any ideas on how we might suggest to 's family that they > should contact this group about 's passing. > > it seems to me that 's tireless efforts to research our disease > should continue on after his passing. and a donation to a tissue bank > that is trying to identify the pathology of CFS might be good way to > do that. > > i know form the postings that his family may have been part of the > problem, so i don't know if this is out of the question. > > anybody have any ideas on this? > > gosh, this is such awful news. > > thanks > bill > > > > > > > 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 December 19, 2005 Report Share Posted December 19, 2005 I just read this a little more carefully. Let me try and give a better answer. I think that the person that has known for 15 years would be someone who might be in a position to broach this possibility with the family, if he wishes to do it. I don't see any other real possibility since it would be intrusive for the rest of us to make that kind of suggestion to people that we don't know, JMHO. Kris /Tissue bank > the passing of was such dreadful news. i didn't know him very > well or anything, but we had many communications about theories on > CFS and how we might try to get better. > > after the initial shock of this news hit me, i thought about the > other young man who passed away from CFS in Wisconsin. i think his > family started a tissue bank for CFS and i was wondering if anybody > had any ideas on how we might suggest to 's family that they > should contact this group about 's passing. > > it seems to me that 's tireless efforts to research our disease > should continue on after his passing. and a donation to a tissue bank > that is trying to identify the pathology of CFS might be good way to > do that. > > i know form the postings that his family may have been part of the > problem, so i don't know if this is out of the question. > > anybody have any ideas on this? > > gosh, this is such awful news. > > thanks > bill > > > > > > > > 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 December 19, 2005 Report Share Posted December 19, 2005 The NCF's pathology/tissue info is available at: http://www.ncf-net.org/library/DonatingSamples.htm Beach > > Bill, I had the same thoughts. Doesn't the NCF have a tissue bank of some sort they are collecting for research? I really feel would want this too! > > marcia > /Tissue bank > > > the passing of was such dreadful news. i didn't know him very > well or anything, but we had many communications about theories on > CFS and how we might try to get better. > > after the initial shock of this news hit me, i thought about the > other young man who passed away from CFS in Wisconsin. i think his > family started a tissue bank for CFS and i was wondering if anybody > had any ideas on how we might suggest to 's family that they > should contact this group about 's passing. > > it seems to me that 's tireless efforts to research our disease > should continue on after his passing. and a donation to a tissue bank > that is trying to identify the pathology of CFS might be good way to > do that. > > i know form the postings that his family may have been part of the > problem, so i don't know if this is out of the question. > > anybody have any ideas on this? > > gosh, this is such awful news. > > thanks > bill > > > > > > > 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 December 20, 2005 Report Share Posted December 20, 2005 I got the impession that things were pretty bad between and his parents, and their failure to come to grips with his illness was a significant part of the problem. I can't imagine that they would have the slightest inteest in having anything to do with CFS right now. As his next of kin, they would have legal responsibility over 's tissues, unless left instructions in his will for tissue samples to be made available for research. Even so, in many states, immediate family can override the deceased's wishes. What this sad, sad situation has brought to the fore is how important it is to (1) make a legal will, and (2) discuss with your family what your wishes are. Perhaps some good for others can come out of this tragedy. in Oz Re: /Tissue bank The NCF's pathology/tissue info is available at: http://www.ncf-net.org/library/DonatingSamples.htm Beach Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2005 Report Share Posted December 20, 2005 Bill, I think the tissue bank is very good idea. It may be a very helpful resource. Not sure about what the best way to tell 's family would be, given 's reports on his parents abuse. Hopefully, if this was so, they'll want to try and *make up* for it. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 Not necessarily true. When my sister who was schizophrenia died, we donated her brain to a brain bank for researchers. A few family members didn't like it, but most of us felt better knowing something good might come from it. Even if his parents didn't believe in CFS, they might have some different feelings now that he is gone. Doris ----- Original Message ----- From: sparrow_oz_1 I can't imagine that they would have the slightest inteest in having anything to do with CFS right now. As his next of kin, they would have legal responsibility over 's tissues, unless left instructions in his will for tissue samples to be made available for research. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2005 Report Share Posted December 22, 2005 It is VERY important. I visited the Harvard brain bank and looked at some brains. But more important they are uploading pics of tissue slices to a web server that researchers around the world can access. Much can be learned. > > Not necessarily true. When my sister who was schizophrenia died, we donated her brain to a brain bank for researchers. A few family members didn't like it, but most of us felt better knowing something good might come from it. Even if his parents didn't believe in CFS, they might have some different feelings now that he is gone. > Doris > ----- Original Message ----- > From: sparrow_oz_1 > I can't imagine that they would have the slightest inteest in having anything to do with CFS right now. As his next of kin, they would have legal responsibility over 's tissues, unless left instructions in his will for tissue samples to be made available for research. > > Quote Link to comment Share on other sites More sharing options...
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