tag:blogger.com,1999:blog-4895604594896814289.post6541604599337355308..comments2023-08-20T01:37:48.791-07:00Comments on CFS Patient Advocate: Moving a Severe ME patientconsuegrahttp://www.blogger.com/profile/05666537564189582035noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4895604594896814289.post-71440019520060220152013-05-30T18:58:54.245-07:002013-05-30T18:58:54.245-07:00I have had ME/CFS for 27 years. As fate would hav...I have had ME/CFS for 27 years. As fate would have it, I'm not as debilitated as your daughter but I also can't travel, even by subway to another borough in my city nor to visit scenic New Jersey on a car trip. <br /><br />This is something not understood by friends.<br /><br />I don't know how you can move your daughter to Philadelphia. It sounds like you mean move her apartment. It means other people have to do all of the packing and moving and unpacking and setting up everything. For her, it means traveling in that well-equipped van with food, water and rest stops. It means some protection from the sun and noise, sunglasses perhaps, ear plugs. Since summer is upon us, it also means cool hair so she doesn't have to deal with extreme heat. Philadelphia gets hot!<br /><br />Best wishes on the move.<br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-64987827440057259722013-05-30T16:25:48.637-07:002013-05-30T16:25:48.637-07:00I agree that there "seems to be a constitutio...I agree that there "seems to be a constitutional allergy to depicting 'the core of this illness.'" <br /><br />Recently I complained on a blog owned by a well-known CFS "activist" that bedbound and housebound patients are excluded by study design from almost all research. <br /><br />The blog owner replied that this is a good thing. He wrote, "I've long been wary of the need to include bedbound patients in studies…The optimum patient in an [sic] research study might just be someone who can get around enough to avoid the effects of deconditioning but who’s still very limited otherwise…"Flohttps://www.blogger.com/profile/00565087657214691714noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-62820608850444285032013-05-30T09:57:09.236-07:002013-05-30T09:57:09.236-07:00Thank you for writing about the plight of severely...Thank you for writing about the plight of severely affected M.E. patients. I have been sick for nearly three decades, and my illness has now progressed to such severity that I am unable to leave my home. Even my physician and lab technicians come to my home. <br /><br />I believe you are correct: "Until those at the center of this illness - those in darkened rooms - are depicted and embraced and understood, nothing will happen at the government level."<br /><br />It is very difficult for those of us who are so devastatingly ill to come forward; and when we do, we are treated with disdain by many of the less seriously affected patients who are able to fly to meetings and testify, etc. <br /><br />We are real, we are in pain, and we need real help. <br /><br />Anyone who is interested in the truth should read STONEBIRD, the Experience of Severe ME http://www.stonebird.co.uk/<br /><br />Thank you for speaking up on behalf of your daughter. Many severely affected ME patients are too ill to speak for themselves and have no one else to speak for them. You are a blessing to these patients.<br /><br />PatriciaWildaisyFLhttps://www.blogger.com/profile/08814395846216067862noreply@blogger.comtag:blogger.com,1999:blog-4895604594896814289.post-63348090774179383472013-05-30T09:21:13.403-07:002013-05-30T09:21:13.403-07:00God bless you and your daughter. I would ordinari...God bless you and your daughter. I would ordinarily strongly object to being labeled "half-sick," since I have been disabled by ME/CFS for over 20 years. But in the context of what you are dealing with, the distinction seems appropriate. I "pay" for trips to the doctor or other outings with a day or two of relapse -- not nine weeks. I agree that if politicians and others are seeing only folks like me as the face of ME/CFS, they are seriously missing the big picture. Showing videos of patients like your daughter is a great idea -- if only they would do it! Words seem inadequate here, but I do pray for emotional strength for you and your daughter and for health care professionals to meet her true needs. nordicgirl6588https://www.blogger.com/profile/16610480263556568405noreply@blogger.com