Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 2, 2012.
View the Post on the Blog
Fantastic, Cort - I recommend everyone to read the letter, it's brilliant.
Thanks to you and everyone else who contribute to this.
I think it is brilliant (even though I had little to do with it). I think getting all the orgs together is brilliant as well - I don't think that's ever been done before (at least not in the last 10 or 15 years..). Let's get that petition signed!
Hi Cort - I haven't been following whether the petition was annonced earlier as I'm not a US citizen and presumably can't sign but it's an unusually important petition - would it be worth giving it it's own thread in case people don't read your article (or just skim it and miss the bit about the petition)?
Everyone can sign the petition, regardless of where they live.
It would be great if everyone who signed got as many other people (friends, family, co-workers, etc..) as possible to sign. Please spread the word.
Hi Denise - thanks for that - maybe that could be added to the article or the title of any new thread on it (that non-US people can sign).
Looking at the petition page, it seems familiar - could I have signed it already? Has it been up a few weeks?
I added a note to the petition indicating that those outside of the U.S. can side. The petition has been up for a few weeks so you may have signed earlier.
Thank you for spreading the word
Cort, you make great points about DHHS's management of ME/CFS. Note DHHS operates on the basis of a "triage system" in fact NIH uses the jargon "triaged" to refer to how their grant applications are managed. (ER's also triage their patients).
Your statement "CDC considers ME/CFS as disabling as MS, Lupus, RA, heart disease, end-stage renal disease...and similar conditions" means that in a properly working "triage system" ME/CFS should be classified at the same level as these diseases in terms of funding, staffing, time & attention and total DHHS resources applied which is NOT the case.
In a strategic meeting with DHHS, you might consider using the triage concept with your great funding charts.
I think some of the problem is what researchers want to work on, sadly enough. Unless the NIH provides researcher the assurance that they are going to get funded researchers aren't going to flock to ME/CFS. It wouldn't take alot - a grant opportunity called an RFA - that guarantees 4-5 million dollars in funding a year would be a big boost but DHHS officials aren't willing to consider even that small amount.
If the system were based on need ME/CFS would get alot of funding but it's clearly not based on need....which is why I think it is based on researcher preference - which is pretty sad....
Thanks for this very good article and advocacy.
The main reason researchers don't study this disease is there is very little funding. Fund it and the researchers will come, regardless of the disease or it's reputation. A dedicated fund isn't even necessary. If NIH simply funded more submitted ME applications, a 'signal' would go out and more researchers would apply. This is NIH's fault, not the researchers.
I have sent emails to my entire address book. I urge everyone to do likewise, and to send to Facebook friends, etc. I have included the text below, and as always, feel free to copy some or all of it. Thanks everyone for the good work.
I am now adding the following to my email:
We're at 721 so far. Racking up those signatures. Good work everybody! Let's keep getting as many as possible.
If anyone who was so active and great at getting votes in the Chase contest could help out by sending signature requests to the lists of patient orgs around the world you compiled, that would be amazing.
Response I received:
"This communication is consistent with 21CFR10.85(k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of the FDA, and does not bind or otherwise obligate or commit the agency to the views expressed."I love the disclaimer on the bottom. Nice of them to answer you though.
You can also try a Google Site Search
Separate names with a comma.