Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Sep 13, 2010.
You can view the page at http://www.forums.aboutmecfs.org/content.php?227-A-Time-To-Act
thanks for reminding me about this, cort. this would make a huge difference in raising some desperately needed awareness.
I would just love to see what happens! I have no idea. How great would it be to get it in when the CFSAC is meeting. I think its an intriguing idea - Esther came up with a great phrase = let's give it a shot! :victory:
True, if xmrv didn't pan out the momentum would slow significantly...and it may slow below what we had pre October 2009 due to a heightened discouragement of finding a cause. So, I think looking at ways of seizing some of this momentum for a rainy day isn't too bad an idea. I like the idea of a shock reality article printed in a major paper....but is that what they intend to submit for printing? The Post wouldn't print that.....would they?
Ok....you talked me into it....I will go give another donation. I beleive xmrv will be found to be an important factor in our illness. However, I beleive this is an important cause and we need to continue to spread the word.
Cloud, I assure you, the message will be strong. I have already generated one sample which is now being reviewed by a doctor to make sure the statement we make is not beyond the science.
But, we are welcoming lots of other ad concepts. One idea is to do a similar one to the Rebecca Project, an open letter, which was successful in getting news media attention, print and T.V., and then got politicians to pressure Craigslist and then they got what they wanted.
We are also welcoming other concepts. Please e-mail me with your ideas at firstname.lastname@example.org.
The patients will make final decision, by majority vote, since this is a patient-driver campaign.
We had a conference call today about fund raising.
I think we need a strong visual to go along with this idea.
We spoke a while back about a blood bag with CONTAMINATED? written across it.
I think that will get the immediate, visceral reaction you're looking for.
Cort: Thank you so much for such a strong and well written thread. We are almost there and have over 970 members on Facebook alone. We are getting donations in small amounts but those donations do add up and we are grateful for every single donation we get.
As Tina has said above, there is a great deal going on behind the scenes now with some rather talented people working hard. I can tell you that a woman who managed over 40 web develpers and graphic artists is getting the new website done and it will be quite professional and draw many more people into this ONGOING cause.
Let me also second Tina's idea that this is a patient driven campaign and the patient's voice will be heard. So please, to every person reading this, send the Team or Tina your ideas for the AD, text, slogans, etc. This is YOUR message to the government and the public.
We do have this incredible opportunity to really hit the ball out of the park and ensure that large groups of people are made aware of CFS/ME as well as the research being done on retroviruses. This is our big chance to really get the information out as we the sick know it and not the misinformation of the likes of the CDC and others fighting against us.
Please hit the Causes page, join, give us your ideas and if possible, donate what you can without causing yourself financial problems. We don't want people donating if it damages them but instead, would be grateful for their ideas, input and involvement.
So again, thank you very much Cort for an incredibly well written message. I know the large Team working on this campaign greatly appreciates this effort from that wonderful brain and heart of yours.
ooo i like that blood bag idea.
i wonder if we can ask for donations on the autism websites?
I am in the midst of putting together a big mailing (of my video on disk) to various media and government figures. I made a 2.5 inch square stamp out of one of the XMRV electronmicrographs, that I am putting on each envelope.
Here's what it looks like. If you want to download the jpeg and make your own stamps go ahead.
Thank you Recovery Soon.
I have a strong visual in the one sample. Can't tell you what. (Ooo, the suspense) I am eager to show it. But I just have to wait so we show all the options at once.
I'll be donating asap - sorry I haven't been following the ad thread.
I fear the failure to support the XMRV findings, or continuing mixed results, regardless of the comparative quality of the research, could put us back not to square one, but into an even worse position than before.
Few quality researchers will be prepared to chase a viral cause if XMRV turns out to be or is seen to be the ME/CFS version of cold fusion.
At the risk of repeating myself, ad nauseum, I'd really like to see all efforts being put into describing in detail the immune dysfunctions seen consistently in ME/CFS and a clear statement as to what they represent and how they can't be due to stress/depression etc.
I'm even contemplating putting together a spreadsheet myself listing all the findings, positive, negative, contradictions, cohorts etc - just to see for myself what the immune pattern looks like when all the findings are considered.
At least with this work done, we will have moved away from the no-one knows what it is 'consensus' to a consensus that we are dealing with a neuroimmune disease.
Progress then doesn't stand or fall on whether X or Y pathogen is found to be associated, causal or passenger etc.
With Collins presence at the XMRV conference and the virus super sleuth watching over comparison of blood tests, there was still no money allocated for XMRV research, and no new grants to WPI. They don't want to advance the science until everyone else learns how to do testing. They are holding back WPI when there is so much they can learn right now about immunity, neurotoxins, other illnesses involved, treatment, cofactors, and we need the answers.
Does this cause have a charitable donation number. I only ask because this may bring in donors who are more willing to give if they knew there was a tax benefit. You may then snag a larger donor partner.
What Marco said - especially his quote above.
ps. This is why other current WPI research into immune abnormalities/infections in ME/CFS is as important as XMRV, IMO.
Absolutely, this needs to be said again and again throughout the CFID/ME world.
I would add
* What if XMRV _does_ pan and and we still get ignored? The attention might go to the virus, not to healing us with the disease. I doubt that simply reducing virus from of our blood will do it.
* Change almost criminal to plain criminal. Maybe not to be said frequently nor casually, as such things have to be aimed carefully, but one doesn't catch a perp and then cuff only one hand. But when protesting the history we must not say "well, it wasn't really a big deal, I'm not really angry, no big deal really, I'll just go drift away".
I just so appreciate that there's a large and diverse team working on this and that they are thinking this through so well. Maybe this will be the aggressive, in your face (but, of course, rigorously accurate) advocacy group we've been looking for and groups can coalesce around. I hope so - we need more players in the game
Really I think we should go with as strong a message as possible. I think we should intend to make a splash in a rude way.
Again if you have Facebook and want to spread the blog far and wide hit the share button on top.
Its all being funnelled through Pandora which is a 501 3 (c) organization - so the answer is yes.
Do we have a target date for publication? I donated a while back. Is the holdup $? If so, Im sure all of us can rally and set a fire under familes and friends feet. Im not too proud to beg
Publication date is going to be interesting because they'll want to do it when they can make the most impact. If we knew another positive paper was coming out or some other event it would make the most sense to run it them.
They are still $1500 or so away. They are also setting up a support network they can use to respond to media queries, etc.
Someone just noted the feds spend more on hayfever than CFS! :Retro mad: Can you imagine that....
They could spend $50 million dollars with a flick of the wrist; they could triple our funding to $`12 million dollar with a bat of their eyelash. That is NOTHING in the research world. This disease - based on its prevalence and costs should be getting hundreds of millions of dollars a YEAR in funding.
You might say that's impossible but its not. The NIH budget for each disease can fluctuate wildly from year to year. All it takes is applying political pressure to the budgetmakers.
Both Annette and Judy have been saying that they above all need us to put political pressure on politicians to get more funding for CFS...so let's do it! Lets make a difference where years later we look back and say that's where we turned the corner! This is our best shot.
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