NIH response to Mary Gelpi petition

They could have said , we would only fund 4 research centres rather than the ten possible because we refuse to put much money in special circumstances for CFS and want things to just grow from what we are doing, albeit much more slowly than necessary. Hard cheese on those already neglected for years we don’t realky care about you or accept responsibility for your loss of life. We are starting small from now and will palm off any further criticisms with this small “portfolio “ of stuff we are doing.

If you want, feel free to use energy you dont have somehow encouraging researchers to take interest in this stigmatised disease with the joke name and go through the usual channels we prefer. The fact this strategy hasn’t worked in the CFS field for thirty years doesn’t stop us from promoting how “welcoming “ we are to excellent research proposals and pretending CFS is on a level playing field with recognised illnesses and therefore we don’t have to do much more.

Clearly we don’t think you’re as important as hiv or Alzheimer’s in getting exceptional measures and we don’t as yet accept that we should be making up for lost time because we clearly aren’t. Don’t worry , in about thirty years time we should have a strong CFS research field and we can let this whole scandal be forgotten, along with your hopes and dreams.
 
@Cinders66 you are so hitting the nail on the head. What the hell can we do? I was going to suggest you writing to Francis Collins but what's the use I guess. I've written a few times....to great effect obviously.
 
Sunshine3 said:
@Cinders66 you are so hitting the nail on the head. What the hell can we do? I was going to suggest you writing to Francis Collins but what's the use I guess. I've written a few times....to great effect obviously.
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Keep up the pressure so that decades of documented evidence can be used later to get back all the funding that was rightfully (and legally in some cases) ours and arbitrarily denied.

Because even when we reach a breakthrough funding will remain low even as the bullshit excuses are no longer acceptable. It's just tradition at this point. We can look at EDS and POTS to validate that fact. They have reached the threshold that leaves denial behind and are still treated with general contempt and indifference. Because it's just tradition to discriminate against those conditions.

It's frustrating as hell but we have no leverage, no sympathy, nothing. Normally there should be 3rd party pressure to shame them into action but we won't have that for a long time, at least until there are large scale studies taking us from estimates into real-life studies of the disastrous impact of decades of willful neglect.

Inevitably the argument will be that they didn't know, to which the only response will be to ask whether we should deliver the evidence using 2 regular dump trucks or an oversized dump truck.
 
Sunshine3 said:
I can see nothing positive in this response, it's lame and so frustrating.
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LOOK AT ALL THE COOL STUFF WE'RE ALREADY DOING? AREN'T YOU GRATEFUL?

It's like they believe the average pwME is totally unaware that NIH has ever done anything. Maybe that's true, but from the perspective of an advocate? I mean, it's actually insulting, like he thinks he's gonna school her on things she already knows. The point is that the response has been inadequate to the problem.

Oh, she?

Yeah, that's right -- he didn't even respond to / address the author of the original petition.
 
Cinders66 said:
The fact this strategy hasn’t worked in the CFS field for thirty years doesn’t stop us from promoting how “welcoming “ we are to excellent research proposals and pretending CFS is on a level playing field with recognised illnesses and therefore we don’t have to do much more.
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Yes, they totally fail to realize why ME research can't leap up and align to other illnesses. After decades of neglect, after telling researchers ME/CFS is "career suicide" in the US, after world-famous scientists have publicized that they can't get funding for ME research...

Sure, as a young researcher just starting out, I would totally jump at the chance. :confused::facepalm:

The conference in April is a good opportunity to attract young researchers to the field. But why should they come if there's no funding for them? It can't just be gladhanding and spreading the word; people have to actually be able to access the funding to do the work.
 
I don't believe so. I've been on calls to help advise off and on, but it's not planned that I be in attendance.

You can read more about who will be there here: https://www.meaction.net/2018/09/06/nih-update-collins-will-address-our-demands/

Jen had her surgery just yesterday and we're hopeful she'll be there; but honestly it all depends on how her recovery goes.

Everyone else is pretty much confirmed, including Collins, Koroshetz, and Whittemore.
 
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