tag:blogger.com,1999:blog-5704399741044225276.post8519919675038836713..comments2023-05-17T13:30:54.725-07:00Comments on X-treme denial: My CFSAC TestimonyAnonymoushttp://www.blogger.com/profile/12281551619335996831noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-5704399741044225276.post-39100639013621455602011-11-10T01:45:58.928-08:002011-11-10T01:45:58.928-08:00Hi Kati, I like your comment about occupying their...Hi Kati, I like your comment about occupying their conscience. That is a big point of petitions and protests after all isn't it? Maybe we can use is as a slogan;<br /><br />"Occupy Their Conscience:<br />We can't occupy the streets, lets occupy their minds!"<br /><br />Speaking as a guy I can see why lots of older wealthy men are capable of pushing ED research and funding. However, there are priorities and ME is costing every country a fortune, and we have lost every aspect of quality of life, not just one. <br /><br />Bye<br />AlexAlex Young aka alex3619noreply@blogger.comtag:blogger.com,1999:blog-5704399741044225276.post-81395932105071532612011-11-09T23:23:21.541-08:002011-11-09T23:23:21.541-08:00Hi Alex, thanks for taking the time to write and t...Hi Alex, thanks for taking the time to write and to comment.<br /><br />I agree with you, getting Rituximab approved may take a while, due to political will (or un-will)- stigma, and roadblocks that are the CDC, UK government and Wesley school. We are all sick and I can appreciate how difficult it can be to advocate for health care, in such a divisive community. <br /><br />I live in Canada. It means that I have rights to health care. It means that I have equal rights. One woman with ALS fought for her right to die, this went to supreme court I believe. what about our rights to live? I will fight for that. I will also look up "compassionate access" to drug, which is a program to approve drugs not yet accepted by Health Canada, mostly for cancer patients. as a chemo nurse, I was very familiar with the program. <br /><br />What really throws me these days is this one article that came out in the British Columbia Medical Journal. you can read it here http://www.bcmj.org/articles/hot-topics-erectile-dysfunction -and I have commented on it. It is really hard to understand that money and time is spent for men's sexual function when over 411 000 patients with ME have no competent access to health care. <br /><br />There has got to be ways to reach out to them. Occupy. we may not be able to occupy the streets, but perhaps we need to find a way to occupy their conscience.Anonymoushttps://www.blogger.com/profile/12281551619335996831noreply@blogger.comtag:blogger.com,1999:blog-5704399741044225276.post-73189283391953840152011-11-09T22:11:00.266-08:002011-11-09T22:11:00.266-08:00Hi kati, thank you for doing this. I am worried th...Hi kati, thank you for doing this. I am worried though that 2 years before Rituximab is properly trialed is a major underestimate. It could be much much longer. <br /><br />Traditionally it can take up to 10 years, and how long has it been for Ampligen as you point out? Of course Rituximab is already approved for other diseases, so the time period will be reduced for this. However, Phase 2 trials on Rituximab are expected 2013. P<br /><br />hase 3 trials take longer but there is no compelling reason they can't be at the same time for an already approved drug - we just need the will and the funding. Indeed why not skip phase 2 to go to phase 3?<br /><br />After the phase 3 trial we will fight another fight, although we are fighting that now two. Two words - funding and interference. Phase 3 trials are very very expensive. We can't even get good funding for basic research in ME or CFS. <br /><br />The we will get flak from government, insurance and the regulators, as well as competing theories like the UK biopsychosocial cult. Doctors themselves may need to educated, another campaign. <br /><br />So the outlook of two years is unlikely, and another decade without treatments may mean millions dead, millions more disabled, many millions suffering. <br /><br />All of this could well be done in two years with the right political backing. I see no sign of that happening.Alex Young aka alex3619noreply@blogger.com