NIH rejection of Lipkin funding request

[jspotila]

I would like to offer some additional information that may be relevant.

As @Ren mentioned earlier, I've been conducting an investigation of the CFS Special Emphasis Panel. I am still fighting with NIH over their failure to disclose some documents, but I have gotten some of what I requested. See this post for more background.

In simple terms, here's how the review process works. There is a CFS Special Emphasis Panel for grant review which generally meets three times a year. Each meeting of the Panel involves different reviewers. Depending on the applications up for review, NIH invites reviewers with relevant expertise. After the application is scored by reviewers, it goes to one of the NIH councils which sets the "pay line," in other words they set the score above which grants get funded (and to my knowledge the pay line applies regardless of the subject matter of a grant).

Historically, there have been complaints that the Panel has included too many psychologists, etc. and this is what I'm in the process of investigating. It's important to point out, though, that an application related to ME/CFS does not HAVE to go through the Special Emphasis Panel. An application could be reviewed by one of the virology study sections, for example. Exactly how the applications are assigned to review panels, and how much say an applicant has in that, is unclear to me.

Dr. Lipkin told me that his application got one bad review from someone who apparently did not understand ME/CFS. I asked him if the grant was reviewed by the CFS Special Emphasis Panel but he did not respond. But this is CRITICAL information. Obviously, if the grant was reviewed by the Special Emphasis Panel and a reviewer did not understand ME/CFS, we have a big problem. But if the grant was reviewed by another study section, we have a different problem. Without knowing which panel reviewed the grant, we cannot draw conclusions about who is at fault.

I'm not criticizing Dr. Lipkin for withholding this information. It's very sensitive, and I acknowledged that when I asked the question. But without that information, we can't really identify the problem. Maybe the problem was a non-ME/CFS expert. Or an ME/CFS expert who didn't understand the application. Or maybe there were deficiencies in the application itself. Or maybe the other ME/CFS applications were better. We simply do not have enough information to say for sure. And Dr. Lipkin also said in his email to me that the issue was not that NIH does not want to fund ME/CFS research.

I strongly encourage people to read my analysis of NIH spending on ME/CFS in 2013. That post also includes links to my analyses of spending in 2012 and 2011. Look at the FACTS of how the money is being spent, how much is going to psychological spending, and whether the money is going up or down. Our advocacy will be more effective if we are fully educated about the facts because we can make stronger arguments from an informed position. I realize that this is complicated stuff, and heavy on data, but it is really important for us to get a handle on this.

 

[taniaaust1]

This is upsetting. The NIH keeps the excuse (for not funding CFS research properly) that there are not sufficient applications of quality and merit. But when they do have such submissions (eg Ian Lipkin's proposal), they reject it anyway, leading most researchers not to bother - it takes them a lot of work to make a proposal, so most don't bother if they know that even good proposals get knocked back because the NIH doesn't care about CFS.

I believe they purposely do this and have been playing this game for a long time now.

 

[taniaaust1]

They can afford to ignore us, unfortunately, because we're physically unable to cause a racket by protesting at Washington, or Parliament, or march on the streets. Dr Lipkin specifically said in his interview that this was what he felt got the NIH to take AIDS seriously, and we are unable to do precisely that because of how fatigued we are (I'm saying the second part of this, not Dr Lipkin).

Sometimes it really looks like the only way to show them we mean it is if we get all our beds and mattresses out and start sleeping in front of these institutions.

That isnt unreasonable doing that, taking our mattresses is a very good idea too!. One way to get media attention having a group of very sick patients having to be dragged off by the police. We NEED the media attention focused on us and what is going on.

That's the issue.. we havent got the media attention we need.

 

[taniaaust1]

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..

I strongly discourage this being done at hospitals as that certainly wouldnt win the general public over (it wasnt be good to cause disruption to other sick people). Target the gov depts which are causing our issues or parliament as they need to intervene or something.

 

[taniaaust1]

I strongly encourage people to read my analysis of NIH spending on ME/CFS in 2013. That post also includes links to my analyses of spending in 2012 and 2011. Look at the FACTS of how the money is being spent, how much is going to psychological spending, and whether the money is going up or down. Our advocacy will be more effective if we are fully educated about the facts because we can make stronger arguments from an informed position. I realize that this is complicated stuff, and heavy on data, but it is really important for us to get a handle on this.

Im looking at your analysis jennie and I cant understand you at all being happy with the NIH spending, are we supposed content with that!! The facts are outragous still. Quoting from your blog

ME/CFS spending fell to 226th out of 237 categories (we were 224th in 2012). Hay fever got almost twice as much funding; fibromyalgia got more than twice as much; TMJ got almost four times more; and multiple sclerosis received more than 22 times as much funding as ME/CFS.

Despite this fact above you also did put in your analysis.. you started off the post as saying

I have positive news to report: NIH spending on ME/CFS in 2013 was actually higher then it was in 2012

how is this at all actually positive when are being left even further behind the funding of other illnesses in 2013. The situation is not better, its worst!! Sorry I see your post at the link as being very misleading to people with that start like that. (Im feeling so annoyed at it being put so to mislead people that I havent been able to bring myself to read the rest of it.. Im completely horrified that you'd try to make our funding out to be a positive thing).

How is our funding dropping from 224 out of 237 illnesses.. down to 226 out of 237 a positive thing and indicates anything at all "positive" .. the term you used when describing the funding shift. (what ME/CFS org do you work for again? Ive forgotten and need reminding).

 

[aimossy]

I think we get to appointments and just about do our selves in to do so...how would a protest be less important
Not protesting in some ways for some is about still suffering from some stigma I wonder?? I know its hard and impossible for a lot.
Maybe also there are underlying thoughts of not believing we would be taken seriously so why bother...
Also how many of us are still not hooked up in this internet world...how many could actually attend.
I like @Firestormm idea actually. That could be a good start that's worthwhile.

 

[aimossy]

I strongly discourage this being done at hospitals as that certainly wouldnt win the general public over (it wasnt be good to cause disruption to other sick people). Target the gov depts which are causing our issues or parliament as they need to intervene or something.

Not inside Hospitals but outside in a peaceful respectful way, certain services have been saved in places with this approach. I understand what you are saying though.
I think we need to show the community we exist, governments ignore, communities seeing this embarrasses the govt more. The govt don't like 'looking bad' to the community more so than actually caring especially if it gets media attention.
The general communities at large have no clue about us, or how many of us there are...we are a hidden set of people.

 

[Kati]

It was Dr lipkin's thought when they had that XMRV debunking conference that patients should make a whole lot of noise to get funding. Too many of us are just too poor to fund our own studies. 30 years of neglect should be weighing heavily on the shoulders of our governments.

Edit to add: Also Dr Jason said us patients need to make a whole lot of noise.

 

[SOC]

They can afford to ignore us, unfortunately, because we're physically unable to cause a racket by protesting at Washington, or Parliament, or march on the streets. Dr Lipkin specifically said in his interview that this was what he felt got the NIH to take AIDS seriously, and we are unable to do precisely that because of how fatigued we are (I'm saying the second part of this, not Dr Lipkin).

Sometimes it really looks like the only way to show them we mean it is if we get all our beds and mattresses out and start sleeping in front of these institutions.

While I understand your point, I will NEVER support any advocacy action that involves us carrying pillows, wearing pajamas, or laying down in "fatigue". IMO, that only reinforces the lazy, unwilling to be active image of ME/CFS and we can't afford that. We can show up in our wheelchairs or other seats and look crappy as hell if we have to, but the image of us all in bed is not helpful.

I understand that would keep our bedbound compatriots from participating in a public gathering of this sort, but it's unlikely many of them would be able to (or should, for health reasons) show up at such an event. We can bring photos/posters of those who are too ill to make it to the event. I believe that's what AIDS activists did.

 

[aimossy]

I agree with @SOC there is the need to not reinforce stereotype in these efforts.

 

[vli]

While I understand your point, I will NEVER support any advocacy action that involves us carrying pillows, wearing pajamas, or laying down in "fatigue". IMO, that only reinforces the lazy, unwilling to be active image of ME/CFS and we can't afford that. We can show up in our wheelchairs or other seats and look crappy as hell if we have to, but the image of us all in bed is not helpful.

I understand that would keep our bedbound compatriots from participating in a public gathering of this sort, but it's unlikely many of them would be able to (or should, for health reasons) show up at such an event. We can bring photos/posters of those who are too ill to make it to the event. I believe that's what AIDS activists did.

Fair enough--it's just incredibly sad that we actually have to hide the reality of our disease before the public (in the case of AIDS, it's more obvious because AIDS victims become very emaciated, grow lesions on their face, and most visibly--tragically--die (and protesting survivors DID carry pictures of these dead patients in their protests).

 

[vli]

I agree with @SOC there is the need to not reinforce stereotype in these efforts.

I see your point, but like I said I also think it's crazy we have to HIDE the reality of our disease before the public. The one hallmark of our disease is fatigue and post exertional malaise. And we have to hide this one hallmark symptom in the most public display of our plight--in our protests.

 

[vli]

It was Dr lipkin's thought when they had that XMRV debunking conference that patients should make a whole lot of noise to get funding. Too many of us are just too poor to fund our own studies. 30 years of neglect should be weighing heavily on the shoulders of our governments.

Edit to add: Also Dr Jason said us patients need to make a whole lot of noise.

I totally agree with you. But as I see it now, I just don't see how we can make the same kind of impact that AIDS activists did because we can't do the precise thing that made them succeed--protests on the streets and gov buildings. How else can we get round this? Otherwise we wouldn't be discussing here.

 

[aimossy]

I see your point, but like I said I also think it's crazy we have to HIDE the reality of our disease before the public. The one hallmark of our disease is fatigue and post exertional malaise. And we have to hide this one hallmark symptom in the most public display of our plight--in our protests.

To be practical there is no way around the need to sit or be on the ground if you were out for a few hours...standing in one place is killer but the fact you are out and in the public eye making that effort does actual contradict the laziness stereotype anyway.
And we have to do something that suits our way of needing to do things..I don't see a way around that. We are a unique patient group in my view.

 

[vli]

Okay that's fine... I sure can give up the thought of camp beds or sleeping bags... but we still have not been able to organise a protest where we even sit or be on the ground to date--in significant numbers!

 

[SOC]

Fair enough--it's just incredibly sad that we actually have to hide the reality of our disease before the public (in the case of AIDS, it's more obvious because AIDS victims become very emaciated, grow lesions on their face, and most visibly--tragically--die (and protesting survivors DID carry pictures of these dead patients in their protests).

PEM can easily be demonstrated by sitting and/or using wheelchairs. Fatigue is NOT the central feature of the illness, although we all know it is a factor. We shouldn't imply that it's all about fatigue by focusing our image on that one symptom.

We don't have to hide our illness. The majority of us are not bedbound, so we don't need to pretend we all are. I know there were periods where, if I had to sit upright for many hours, I would look and feel like hell. Those in that stage who are willing to participate in a sit-in of some sort are not going to look well, and that's appropriate. Few of us are going to look healthy after a day or more of protests, even if we sit the whole time. That's our reality, not that we're too "fatigued" to get out of bed.

We would be better served, IMO, by having signs, T-shirts, and other visuals listing the real characteristic features of the illness -- immune dysfunction, multiple infections, PEM (not "fatigue"), neurological problems, and so on.

 

[vli]

And we have to do something that suits our way of needing to do things..I don't see a way around that. We are a unique patient group in my view.

Well that's the problem. We're scattered everywhere and we can't travel far and long both physically and financially to protest in one place, unlike, say, like all the gays in New York City or San Francisco where the epidemic was so concentrated. The bottom line is everything that made AIDS activism succeed needed physical (gathering, traveling--ACT UP flew from New York to the NIH in Bethesda to AIDS conferences in San Francisco, marching on the streets)--NONE of which PWMEs can do. Thus we are so stuck that a member here told me she felt the only way we could get around this "physical problem" is to hire actors to march around federal buildings for us!

 

[SOC]

To be practical there is no way around the need to sit or be on the ground if you were out for a few hours...standing in one place is killer ....

Indeed it would be a killer. We need to be willing to show that that is our reality. We probably can't do that by protecting ourselves from the consequences of normal activities. If we want people to understand, we have to be willing to let them see what happens to us when we stand in one place, or are out all day, or whatever. If we pass out, or shake uncontrollably, or even vomit.... well, isn't that what we live with? Isn't that what we need not to hide?

 

[vli]

@SOC, I just want to say I agree with every single thing you said in your post above. I do!

But it raises a very important question. Are there indeed patients who'd be willing to pass out, shake uncontrollably, or even vomit at a protest BEFORE they would say "I'm not doing this" and would get up, pick up their things and go home? I am not so sure. At least, I am not as sure as some people on this forum might be. I would be more sure if a survey were done and actual folks voted and said, "Yes, I would put myself through such extents of suffering before I'd actually leave the protest".

 

[SOC]

@SOC, I just want to say I agree with every single thing you said in your post above. I do!

But it raises a very important question. Are there indeed patients who'd be willing to pass out, shake uncontrollably, or even vomit at a protest BEFORE they would say "I'm not doing this" and would get up, pick up their things and go home? I am not so sure. At least, I am not as sure as some people on this forum might be. I would be more sure if a survey were done and actual folks voted and said, "Yes, I would put myself through such extents of suffering before I'd actually leave the protest".

That's an excellent question. I don't know if we have people willing to suffer publicly to show the world the misery we live with every day. But if we don't, then we don't have the group will to do the demonstrations needed to make the world see us and deal with the problem. Maybe we haven't suffered enough yet () to be willing to do whatever it takes to make the world sit up and take notice of us.

If I recall correctly (it was a long time ago for ME memory), the majority of people involved in the AIDS protests were not AIDS patients themselves. They were too sick. It was the friends and families of the dying AIDS patients demonstrating for awareness, funding, and research.

Our real curse is that we don't have a strong support group of healthy people willing to advocate for us. Many of us know our friends and families don't support us in everyday ways, much less participate in advocacy work. And we all know why we don't have that support and who's been poisoning their minds against us.

Most of us are too ill to do multiple massive demonstrations without further damaging our health. We don't have healthy people willing to do the demonstrating on our behalf. So what are our options? Are we down to some form of self-immolation to get people to see our plight? I hope not, but I really wonder....