Ambrosia_angel
Senior Member
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- 544
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- England
That's even worse. They don't even acknowledge us at all. At least if they hate us they are partially noticing us.
I'm beginning to think that such sit-ins aren't nearly as impossible as they might seem to PWME brains.Sit ins around hospitals and institutions with placards on mass in different settings across globe coordinated...
but it could be done and a date planned so people like us have time to make that happen....to protest lack of research funding
That Facebook page is promoting yoga products. For ME patients.
If that's the patient population in the eyes of those in favor of this initiative...well, it's hardly surprising.
I understand, @goodellcl, but unfortunately I am not American so there's no rep who represents me (not here anyway). If I were a US citizen though I would do this in a heartbeat and I urge anyone who reads this post to please do so--if I'm not American and want to do it, you should burn all the more with the desire to do it.I can't really comment on the reason(s) why Lipkin's grant request was denied by NIH because I don't know what the denial was based on, but I can say that Congresswoman Lofgren's efforts to get an NIH RFA of $7 to 10 million for ME/CFS needs backing by patients right now. Congresswoman Zoe Lofgren's letter to the director of NIH has been signed by some members of congress but patients MUST contact their reps to request their signatures. I and other patient advocates have streamlined the process and mine can be found at https://www.facebook.com/groups/314293301959189/
This is urgent. Please act on this and share the information to get this to go viral. Even if the NIH doesn't grant her request we will have provided some awareness about ME/CFS to many members of congress and their aides.
Hi JayS, I'd be grateful if you could clarify which initiative you meant... while I think the letter goodellcl referred to IS very important and urgent, I can't claim credit for it and certainly have nothing to do with it (for the same reason I cited that I don't have a rep 'cause I'm not American). Thanks.If that's the patient population in the eyes of those in favor of this initiative...well, it's hardly surprising.
I'm beginning to think that such sit-ins aren't nearly as impossible as they might seem to PWME brains.
Like you say we can coordinate it (like Earth Hour) around the world to get the media to cover us. It's cold and damp at Westminster or Washington, sure (not to mention we can't stand for long), but it's possible inside hospitals, even if we can't get into government buildings. AIDS sufferers sat inside hospitals. Many of us can report numerous visits to A&E/to the ER when we were maltreated, dismissed or made to sit in a plastic chair for HOURS. So it's not unreasonable to sit inside hospitals.
If we need to emphasise our point, all we need do is bring a dozen of cheap pillows and refuse to get up--"we're too fatigued to"--until they have to lift us off by stretcher or whatever. AIDS victims actually lay on the floor.
No, I agree. It's actually pretty darn nuts for me to suggest doing the things I'm suggesting because if we sit-in somewhere it'd have to be one of my "good" days--and as is evident from my failure to do that for Stanford, it doesn't seem to matter how much preparation I try to make in advance (although obviously attending a conference is more cognitively draining than a sit-in, albeit possibly less "physical"). I think what you said IS a good idea.Would an orchestrated email campaign work perhaps better? Having a template letter for each of the funding bodies in each of the countries, and then at an appointed time: we all hit SEND at the same time and off the letter goes to our own countries funding body/person responsible. I'd do that I think. I'm not good at getting places physically however, but a decent letter to the write person responsible, yeah I'd do that: a worldwide campaign - email and social media... or sommink. You know me. I don't have a clue about the why's and wherefores![]()
Hello -
I believe someone wrote that Cort Johnson (sp?) wrote that NIH rejected Lipkin's funding request for the Discovery project bc the NIH grant reviewer(s) defined CFS/ME as psychosomatic. (I'm having trouble locating this statement again though.)
I'd like to know if the names of the individuals who made this decision are public record.
Thank you!
We all need to get involved with this project:
http://www.occupycfs.com/2014/04/02/congress-we-need-an-rfa/
"I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH. And there is something YOU can do to help!"
"Representative Zoe Lofgren (D-CA) and 10 of her colleagues have signed a letter to Dr. Francis Collins, Director of NIH, asking him to follow the recommendation of the CFS Advisory Committee and allocate $7 to 10 million for an RFA. This would be money set aside for ME/CFS research (currently no money is guaranteed to ME/CFS). I’ve posted a copy of the letter for you to read and take to your own Congressman/woman".
What you can do ...
And I'll just add that I asked Jennie about grants/reviewers recently, and so she responded with a bit of an update of her work with this (which seems extensive). Here's the link for that info: http://www.occupycfs.com/2014/03/31/2013-nih-spending-on-cfs-studies/#comments // My question was 19, and Jennie's response is post 20, I believe. To my understanding, she's been working on this (grant issues and transparency) and will soon have new info to share.
Why do they hate us so much?![]()
No, I agree. It's actually pretty darn nuts for me to suggest doing the things I'm suggesting because if we sit-in somewhere it'd have to be one of my "good" days--and as is evident from my failure to do that for Stanford, it doesn't seem to matter how much preparation I try to make in advance (although obviously attending a conference is more cognitively draining than a sit-in, albeit possibly less "physical"). I think what you said IS a good idea.
But as you probably know @Firestormm there's no way I can do this on my own/organise this. If no one offers to help get that off, the idea stops right there (as it will for even more ambitious things like sit-ins).