Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Hi Beach, > This is why the NCF requested patient biopsies so that their pathologist could > evaluate the samples! Do you happen to know if any patients have sent tissue biopsies? I'm trying to think of what would call for a biopsy--aside from cancer. Sue B., Upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 IIRC biopsies have been used in PWC subset for 'red-ragged' muscle fibers - something possibly w/mitochondrial dysfucntion and/or abnormal lipids; and also have found lyphocitic infiltrate in various organs (clinical, not published finding) Lance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 yes this patient donated a tissue biopsy from a biopsy proceedure i had last year... It took a few phone calls to convience my dumb local hosptial mds mentality that this was for reserach for a valid illness..my md who ordered the biopsy did it once i conveniced them it wasnt going to involve them any extra work except for the snip in the surgical suite.. I talked to the pathology lab secretary who later on connected me to the head of the pathology lab , plus i gave my md ,the pathooogy lab copies of the consent forms, orginal and xerox copies to everyone involved...the md graciously donated his time, the anesthiolgost was fine with it thought i met them at the last minute ..plus i provided to the mds and the pathology lab copies of the aricles that gail sent me from dr hokoma research etc ... the pathology lab mds donated their time for the separation of the tissue sample to be sent out to the national cfids foundation... the pathology lab cheif md , did request i pay a small fee for sending it out as they didnt want to trust sending it via regular mail as the other samples were done. to the national cfids foundation ..they were afraid it would get lost.( cheap sending it vai regular mail).. I would gladly do this again..it wasnt so hard to and once set up everyone was so nice and gracious about it .....For reserach everyone eventually cooperates.. even though i am chroincally ill long term with new medical promblems daily , i am hoping that if this doesnt help me much, maybe it will spare someone else down the road from this illness.... cannot give ..... tealk > [Original Message] > From: Ron <rhbailey@...> > tal CFSMExperimental < > > Date: 4/23/2004 8:04:12 AM > Subject: biopsies > > Hi Beach, > > > This is why the NCF requested patient biopsies so that their pathologist could > > evaluate the samples! > > Do you happen to know if any patients have sent tissue biopsies? I'm trying > to think of what would call for a biopsy--aside from cancer. > > Sue B., > Upstate New York > > > > > 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...
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