tag:blogger.com,1999:blog-7368056645691128384.post7418600169096341796..comments2023-05-17T13:15:50.282+01:00Comments on Only Resting: Why Don't the WPI have more votes?Barry Fotheringhamhttp://www.blogger.com/profile/16158013718479616955noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-7368056645691128384.post-83921997799279757802011-05-21T17:15:15.357+01:002011-05-21T17:15:15.357+01:00Perhaps the reason not everyone is voting for the ...Perhaps the reason not everyone is voting for the WPI is that it is too heavily associated with the XMRV inquiry to the exclusion of all other lines, such as enterovirus which has a very long association with ME? I voted for the WPI (at the fourth or fifth time of asking -- it didn't work the first few times) as I'm unaware of any other contender with an ME interest, but surely the community should not focus all its hopes on one virus which may turn out to be a secondary infection and is linked with prostate cancer among other things. (Is there an increased incidence of prostate cancer in older, male ME sufferers?) Some have suggested that, if XMRV turns out not to be the cause of ME (or at least of <em>all</em> ME) then the WPI will move onto other things, but it would be useful to know what other things they are researching right now.Indigo Johttp://www.blogistan.co.uk/blog/noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-30655489749066435692011-05-20T16:52:32.574+01:002011-05-20T16:52:32.574+01:00Hi Neal,
I appreciate your honesty, thank you.
...Hi Neal,<br /><br />I appreciate your honesty, thank you. <br /><br />Deciding who best can help us is tricky, isn't it? It is a very difficult terrain to negotiate.<br /><br />Personally, I still have some faith and hope in the WPI and I'd rather see them make a mess of using 500K donated by a financial institution than the millions that governments are spending on 'research' that only concludes we are mostly malingerers in need of some mind-control and positive thinking.<br /><br />I do agree with you about XMRV testing. Again it's something we have to make a personal judgement call on but I've never been comfortable with people spending money on a test that is still not bulletproof and then, even if they get a 'positive' result, finding they are struggling to treat the virus.<br /><br />I'm all for the CAA getting some money too. I share your concerns about the leadership (although I have to say Kim McCleary actually impressed me for once, during the CFSAC testimonies) but it would be remiss of us to forget they have done some important work on research in the past.<br /><br />We are all ill but we all think differently and I think we have to be mindful of that. Only recently have I changed my mind on the importance of proper classifications and the need to separate different sub-sets of 'CFS' patients so we know we are dealing with people who have broadly the same illness. I was also quite uninterested in the 'name change' movement until I began to appreciate how much harm was being done to our cause by accepting the CFS moniker (especially here in the UK - I know it's slightly different in the US).<br /><br />So, I guess what I'm saying is, I respect the fact that there are reasons people will not vote for WPI, despite my passionate appeal. I think my aim was to stir up some discussion and hopefully it has done that. The blog stats suggest the post is being read widely.<br /><br />Thanks again for setting out your concerns. It's good to hear different perspectives.Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-16830711757563666922011-05-20T16:31:35.208+01:002011-05-20T16:31:35.208+01:00Hi Barry
I have ME and will not be voting for the...Hi Barry<br /><br />I have ME and will not be voting for the WPI. I would have up till the beginning of this year but since then i feel the science has progressed to the point that the xmrv connection isn't looking credible anymore (i'm no scientist). <br /><br />The doubt started when i read the Towers paper and the study by Singh killed off any hope for me. Only the other day they published xmrv sequences which shows little genetic diversity which is consistent with contamination(and it looks like they cherry picked their best results to get the most diversity). <br /><br />Also i am worried about the conflict of interest in selling a test to ME patients at hundreds of dollars for a connection that only they seem to be able to make. Then i heard Mikovits was trying to link xmrv with numerous other conditions including autism. Where is the science behind that? It strikes me they are trying to get sick people to part with money on a hunch that there is some involvement. <br /><br />The WPI filled me with hope for over a year and have raised awareness about the seriousness of ME but i feel unable to vote for them. I can't speak for others but it is possible some others have similar concerns and will not vote for them either. I'm sorry if i'm wrong about all this.<br /><br />I'm voting for the CAA, even though i am not 100% behind the leadership i feel like the money could be used wisely.<br /><br />Best regards<br /><br />NealAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-83713146342857652212011-05-20T15:42:01.733+01:002011-05-20T15:42:01.733+01:00Hi Johnny,
Thank you for taking the time to comme...Hi Johnny,<br /><br />Thank you for taking the time to comment. I confess, I don't have a complete grasp of all of the politics behind the WPI - it's difficult enough keeping up with finding my own treatment plan.<br /><br />However, I think my simple take on this competition is that, of the 100 charities who are eligible for receiving up to $500,000, the WPI are more likely to make a difference for M.E. patients than a marching band or botanical garden.<br /><br />Whether that $500,000 is 'well spent' or not is a debate for another day. I'd much rather they had the money so we could then have that debate.Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-44741353173895748812011-05-20T04:47:47.941+01:002011-05-20T04:47:47.941+01:00I truly admire your passion Barry, but respectfull...I truly admire your passion Barry, but respectfully disagree that the WPI efforts will lead to anything that will help us. <br /><br />Unfortunately they picked a researcher who admitted she knew nothing about ME/CFS, and put her in charge -- a huge mistake considering this is a multifactorial illness. <br /><br />Plus, she withheld critical information about the Science study from Dr. Peterson (who knows a lot about ME/CFS) which led him to resign. A YEAR later, and they still don't have a new medical director. That says a lot.Johnnynoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-51002582282082906932011-05-19T23:44:08.946+01:002011-05-19T23:44:08.946+01:00Barry I am going to re post your blog entry on min...Barry I am going to re post your blog entry on mine if thats ok. I had planned on doing a post for this today anyway but you have said it better than i ever could ... I will credit you of course :-)Lee Leehttps://www.blogger.com/profile/02614823402670740413noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-30964839692497979652011-05-19T23:32:15.341+01:002011-05-19T23:32:15.341+01:00I think more people should be voting for the CFIDS...I think more people should be voting for the CFIDS Association of America who have funded a lot of good research. <br /><br />If people go to the trouble of voting for the WPI, it won't take much more effort to also vote for the CAA.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-57506508413394325682011-05-19T23:26:22.345+01:002011-05-19T23:26:22.345+01:00If people have problems, they could post them on t...If people have problems, they could post them on the WPI Facebook page - people there should be able to come up with various suggestions (we did last time) e.g. try with a different browser.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-9910492666737975422011-05-19T23:03:44.672+01:002011-05-19T23:03:44.672+01:00You can post on any yahoo groups to which you belo...You can post on any yahoo groups to which you belong, and craig's list as well. I have sent mass emails (blind copy) to lots and lots of lists I have for other parts of my life, plus I have faxed the flyer made by catch on the mecfs forum. There are many, many things we can each do to generate as many votes as possible.Lilly Meehannoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-12128620006197752832011-05-19T22:44:24.669+01:002011-05-19T22:44:24.669+01:00Thanks Nicky :) I'm just so excited by what t...Thanks Nicky :) I'm just so excited by what this money could do for us. The fact we could have a functioning treatment clinic set up by the WPI as a result of winning this competition is massive. I'm conscious people are ill and doing the best they can and I hate harrassing people to do stuff but I worry we might miss a golden opportunity we regret for years to come.Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-82208173229129668922011-05-19T22:38:00.205+01:002011-05-19T22:38:00.205+01:00I've had no trouble voting - and have been spr...I've had no trouble voting - and have been spreading the word via FB and Twitter as fast as I'm able. Feel frustrated by the lack of response too!Nicky Reisshttps://www.blogger.com/profile/07409857304770649251noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-1864577396244817412011-05-19T22:30:56.994+01:002011-05-19T22:30:56.994+01:00I agree the app is glitchy. I had the same proble...I agree the app is glitchy. I had the same problems with Chrome and had to switch to Firefox to get my vote registered. Then again, someone else just said they had to switch from Firefox to Internet Explorer.Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-67327717876847632822011-05-19T22:28:25.107+01:002011-05-19T22:28:25.107+01:00The reason is because some of us are doing exactly...The reason is because some of us are doing exactly as directed but the vote will not process. I wrote to Chase twice during the last round informing them that some people were having problems but got no reply.<br />As an experiment I tried voting for another cause but that would not take the vote either. <br />So bloody frustrating. I will try on my hubbys laptop when he gets home from his trip, but I know it is not just me.Me, myself and MEhttps://www.blogger.com/profile/10630294932861801754noreply@blogger.com