tag:blogger.com,1999:blog-4744427773401707938.post5254288362280899894..comments2023-10-29T02:28:12.148-07:00Comments on Stonebird: It just would not be so...Unknownnoreply@blogger.comBlogger4125tag:blogger.com,1999:blog-4744427773401707938.post-51843596217038814562014-06-27T14:11:15.510-07:002014-06-27T14:11:15.510-07:00Jan, that is extremely interesting about the decis...Jan, that is extremely interesting about the decision to leave paralysis out of the Canadian definition - we didn't know that ! Linda, who is gutted, says it is a travesty ! Paralysis forms a major part of her ME, however she was not sure anyone else experienced it, until we conducted our own Stonebird study - and were amazed. The results were shockingly familiar. paralysis is much more widespread than we imagined. It has made Linda even more incenesed it is medically ignored and not even included as a symptom, when it is a profound symptom. The survey is just so moving - all these people with paralysis (others have come forward since the survey), receiving no treatment or recognition. It has made us determined to raise awareness of paralysis as fundamental in ME .http://www.stonebird.co.uk/Paralysis%20Study.pdfHoly Wayhttps://www.blogger.com/profile/04396731322033939255noreply@blogger.comtag:blogger.com,1999:blog-4744427773401707938.post-12957658709658987642014-06-27T13:44:15.887-07:002014-06-27T13:44:15.887-07:00I understand now, thank you so very much Greg for ...I understand now, thank you so very much Greg for taking the time to explain so thoroughly. My paralysis was also denied by doctors, however I am fortunate enough to not have experienced that symptom in a number of years, although my ME is still severe. <br /><br />I remember reading in the Canadian definition about the disagreement regarding including paralysis and the decision was made to leave it out as there weren't enough patients (in the experience of the authors) with that symptom to include it. And of course there are not when severe/very severe ME patients are rarely seen by these doctors.<br /><br />I'm sorry beyond words for Linda's suffering and complete lack of appropriate care. I do believe we will have our day, one day, though and you and Linda will be remembered for the important work you did.<br /><br />-JanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4744427773401707938.post-53720140639080148622014-06-27T06:51:18.075-07:002014-06-27T06:51:18.075-07:00Thanks so much Jan. Linda, unfortunately, has expe...Thanks so much Jan. Linda, unfortunately, has experienced years of mistreatment, misunderstanding and denial of her most severe symptoms such as paralysis. Our experience has taught us how little professionals are aware of Severe ME. We trusted people we thought could help only for Linda to suffer great harm as a consequence. Linda has deteriorated massively since Voices, to the extent that her daily life is sheer, frightening torture. How is anyone like Linda to access tests and treatments when they are so excluded on every level from the system ? Surely it is the most ill who are most representative of the disease, but no one is investigating them. As far as Linda is concerned unless you research paralysis you are not studying ME. The only option open to the most ill, is to pay privately, but even then the potential for harm cannot be overstated.Holy Wayhttps://www.blogger.com/profile/04396731322033939255noreply@blogger.comtag:blogger.com,1999:blog-4744427773401707938.post-7729680557146736562014-06-26T13:02:46.218-07:002014-06-26T13:02:46.218-07:00Linda, I wish I could say that I could give you so...Linda, I wish I could say that I could give you some kind of strength or comfort or hope for the future. I do personally have hope for the future although I think we're still probably a good 20 years away from medical and scientific acceptance of ME. My hope is that future generations will not have to suffer so terribly.<br /><br />I was wondering about your saying you haven't been properly investigated. In "Voices From the Shadows" I believe Greg said you were diagnosed by the late Dr. Betty Dowsett and I can't imagine anyone more knowledgeable. Did you mean you haven't been properly medically investigated since or does that refer to social services perhaps?<br /><br />I'm sorry for bothering you with questions and please don't feel you need to answer. I thought I'd ask because it is important to correctly understand you and what you've been through and are going through.<br /><br />-JanAnonymousnoreply@blogger.com