NIH rejection of Lipkin funding request

[Kati]

The fax and phone call campaign we did a year or 2 ago was quite powerful . We drove them nuts
We need to build a campaign surrounding. May 12th, with flyers to fax to HHS NIH and CDC. Let's drive them nuts.

 

[vli]

@Kati that sounds great--unfortunately a year or two ago I was either just starting Ampligen, or recovering from Ampligen, so I missed it all. Where can I go to find out what happened?

 

[vli]

We drove them nuts
We need to build a campaign surrounding. May 12th, with flyers to fax to HHS NIH and CDC. Let's drive them nuts.

@Kati I absolutely love this! I am doing this--it can be done from home. Again please point me in the right direction.

 

[alex3619]

The fax and phome call campaign we did a year or 2 ago was quite powerful . We drove them nuts
We need to build a campaign surrounding. May 12th, with flyers to fax to HHS NIH and CDC. Let's drive them nuts.

Even more nuts than they already are? Nice idea.

For international advocates we need email for the most part. With some warning then letters might work.

 

[aimossy]

@Kati I absolutely love this! I am doing this--it can be done from home. Again please point me in the right direction.

I like it too

 

[Tuha]

It would be great to have a well coordinated worldwide campaign - not only in US but everywhere.
For example in Europe we have also our own CDC - European Centre for Disease Prevention and Control (ECDC)
http://www.ecdc.europa.eu/en/Pages/home.aspx

I think our advocates could prepare the campaign and we would try to encourage as many patients as possible.
There could be something like list of demands.
In the past there were already similar campaigns - I think it worked quite good, the governement agencies had problems with massive calls, emails, letters but I think we always stopped it too early after some cheap small promisses. I think we have to keep it till we will see that our demands are accomplished

 

[jspotila]

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. \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).

If you could bring yourself to read the rest of the post, and the other things I've said about NIH spending over the years, perhaps you would notice that I am NOT AT ALL PLEASED OR HAPPY with NIH spending. I don't work for any ME/CFS organization. I am an independent advocate, and as far as I know, I am the ONLY independent advocate regularly digging into the details of NIH spending and activity.

Here is what I said about 2011 funding:

NIH keeps insisting that they do not receive enough proposals to justify a Request for Applications with dedicated money attached, but they refuse to acknowledge the impact of their funding decisions on future applications. If the review panels, including the CFS SEP, score psychological grants highly enough, then it quickly becomes a disproportionate amount of overall funding. This, in turn, further discourages researchers from submitting proposals on other aspects of the disease. Given that the pool of money is so small, it does not take much imbalance to establish a self-fulfilling cycle of few applications, no money, fewer applications, and so on.

I documented that 2012 funding fell by 28.8% from 2011, and I wrote:

This is insane. NIH must do something to stimulate research in this area. There can be no argument about this. NIH must DO SOMETHING!

And in my spoken testimony at the May 2013 CFSAC meeting, I said:

To be perfectly frank, I am tired of the chicken and egg debate of which comes first, the money or the larger number of proposals. Here’s a novel idea: do both at once. Advocates, organizations, and researchers should do everything in their power to encourage more proposals, and NIH should pony up dedicated funding. Try both and see what happens.

How can we be positive about change, as Dr. Jones said this morning, in light of these numbers? This is a crisis situation. I do not accept a 30% drop in funding. I do not accept plummeting backwards to 2008 funding levels.

By the way, in my October 2011 CFSAC testimony, I said the following:

The current level of NIH funding for CFS research is the equivalent of pocket lint. Do not dare to tell us that there is no money for CFS research. The money is there. It’s just that NIH does not think we are worthy of it.

. . .

All these years, we have done this work, and we will continue to do this work. But I say to all of you: you are not off the hook. As long as we have to deal with CFS, you have to deal with us. We are still here. Deal with it.

And in the most recent post that you couldn't bring yourself to read, I said:

While these numbers are good, the overall problem is not solved. Five million dollars is pocket change in scientific research, and grossly inadequate given the economic and human toll of ME/CFS. Dr. Ian Lipkin stated publicly that his application for a microbiome study was recently turned down by NIH, although we don’t know which review panel scored the grant or why it scored poorly. One source told me that the ME/CFS Special Emphasis Panel reviews approximately six applications each cycle, which means that applications have not increased in the last year. Multiple factors contribute to the low NIH funding for ME/CFS, and we will need multiple solutions to fix the problem.

Still, the funding for 2013 was higher than the funding in 2012, and I applaud NIH for that. The real question is whether this is a fluke, or the beginning of a trend. I would like nothing better than to report 36% (or more) increases for the next five years.

You are not the only person who has criticized me for reporting that funding was up in 2013. Was I supposed to lie? Was I supposed to just not mention that funding was up? THIS MAKES NO SENSE. If I am going to hammer NIH in public when funding goes down, then it's only fair for me to point out when funding goes up. And quite frankly, everyone's advocacy is better when it is based on facts. If we complain that funding is down, when it actually ticked up slightly, we lose credibility. Craft an argument that takes into account the 13% increase in spending. Use that fact to highlight that 13% of $5 million is one extra piece of pocket lint. It's like finding money in your pocket and realizing it's a quarter, when what you need is $20 to buy a meal.

 

[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.

There was a discussion on a friend's Facebook page about the May 12th event, and surprisingly someone came up with a video of how this was done--in England, of all places--at Westminster.

 

[SOC]

There was a discussion on a friend's Facebook page about the May 12th event, and surprisingly someone came up with a video of how this was done--in England, of all places--at Westminster.

The "living death" angle is interesting.

So, how effective was this demonstration? Did people stop for more info (it doesn't look like it in the video)? Were the views of family, friends, and neighbors changed? Did it generate a media storm? Did authorities take notice? Did any policies change? Was more research funding generated?

All too often demonstration participants get so caught up in their show that they lose track of the point. They get so busy fine-tuning their performance and trying to be "clever" that they forget that what's important is getting the message where it's going to matter. I'm not saying that happened in the above case. I have no idea how effective their lay-in was. Just suggesting that it's critical to keep our eyes on the prize and not the performance.

 

[vli]

The "living death" angle is interesting.

So, how effective was this demonstration? Did people stop for more info (it doesn't look like it in the video)? Were the views of family, friends, and neighbors changed? Did it generate a media storm? Did authorities take notice? Did any policies change? Was more research funding generated?

The only variable here would be, instead of having those same people lying on the ground, to have them, as you said earlier, sitting in wheelchairs. Whether if they had done that, if the demo would've been more effective (a media storm generated, authorities taking notice, research funding generated) is a very interesting question.

 

[anniekim]

Unfortunately, British media didn't cover it so little effect. Interesting Point about would wheelchairs be more effective

 

[Kati]

My memory is a bit vague, but we were instructed to call HHS and send faxes and emails. Robert Miller was involved with this and we got feedback that it drove them nuts.

What we need is a strong message, a target for our calls, faxes and emails (Sebelius, Koh, Nancy Lee) and start our campaign -do we save ourselves for May 12th?

What should be our message?
How about other countries, who do we target? The health minister?

 

[Valentijn]

How about a contest among the willing participants who have fairly bad (unmedicate?) OI, to see who can stand up the longest? The contest aspect would basically be a joke, but it could be a serious demonstration of the weakness, shakiness, etc, which result.

I agree with beds being a bad idea. If such a demonstration was in an area I could get to (with help), I'd rather lie on the ground if I had to. I hate the "tired" photos that usually accompany CFS articles, and I think it would be a mistake to play into the "fatigue" stereotype. Similarly, I don't wear pajamas all day, even when bedbound, and frankly that's more of a "frazzled college student" look out in public, not a "sick" look.

But the easiest way to educate any bystanders would simply be with information: pamphlets, signs with short bits of focused information, etc.

 

[Kati]

How about a contest among the willing participants who have fairly bad (unmedicate?) OI, to see who can stand up the longest? The contest aspect would basically be a joke, but it could be a serious demonstration of the weakness, shakiness, etc, which result.

But the easiest way to educate any bystanders would simply be with information: pamphlets, signs with short bits of focused information, etc.

Hi @Valentijn, I am not too keen with this idea as it causes harm in patients, and no one will understand why.

 

[SOC]

How about a contest among the willing participants who have fairly bad (unmedicate?) OI, to see who can stand up the longest? The contest aspect would basically be a joke, but it could be a serious demonstration of the weakness, shakiness, etc, which result.

I agree with beds being a bad idea. If such a demonstration was in an area I could get to (with help), I'd rather lie on the ground if I had to. I hate the "tired" photos that usually accompany CFS articles, and I think it would be a mistake to play into the "fatigue" stereotype. Similarly, I don't wear pajamas all day, even when bedbound, and frankly that's more of a "frazzled college student" look out in public, not a "sick" look.

But the easiest way to educate any bystanders would simply be with information: pamphlets, signs with short bits of focused information, etc.

People in wheelchairs educating bystanders with pamphlets, etc, as you suggest would probably be more effective than some dramatic show.

But then, what do I know about these things?

 

[Kati]

How about a 30 days letter writing, for May, ME Awareness month, with a strong emphasis on '30 years of neglect'

 

[vli]

This is what Dr Lipkin said in his interview with Simon McGrath about AIDS activism. Unfortunately we are not allowed to show all the contents of the interview because it contains embargoed info pending publication.

That was a group that died, and while they were dying, the people who cared about them were very angry and demonstrating... [they] scream[ed] and chain[ed] themselves to posts in front of embassies and government buildings, and it made a difference. I am not suggesting that, mind you... [AIDS] hit major cities and there were pockets where you had transmission in a very clear way—and it hit so many prominent people that they were scared to death. They pushed privately on the scene [...].

 

[Firestormm]

This is what Dr Lipkin said in his interview with Simon McGrath about AIDS activism. Unfortunately we are not allowed to show all the contents of the interview because it contains embargoed info pending publication.

I actually wish people would stop using AIDS activism as a tool for comparison.

 

[JayS]

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.

The initiative to get people behind this letter, which I don't like. I don't like a letter urging funds be set aside with no restrictions (meaning we could end up with people like the head of IACFSME getting some of that money for things like 'Efficacy of Home-Based Self-Management for Chronic Fatigue'). And I don't like a letter that says there's 1 million patients. Go to Congress with statistics based on Fukuda, any argument that the CDC has acted improperly is hamstrung by using numbers based on their own research. I don't believe for one second there's 1 million U.S. patients with Ramsay ME, so if I'm going to go to Congress, I'm sure not going to use CDC info to try to win favor.

But I tried to go to Congress, to complain that a member of an HHS committee claimed harassment by the DFO in a public meeting. My congressman was the key figure in the $13 million CDC scandal of the late 1990s. His office has done quite a bit to help me personally.

I contacted his office twice about this. I got zero response. Nothing, zip, nada. Period. I had to be pretty outraged to go there in the first place, because constituent complaints to Congress don't seem to amount to much. The dance where they take the complaint seriously, and try to investigate, with the matter ending invariably with CDC or NIH reps insisting the condition is taken seriously, trumping the complaint with implied medical and scientific authority, is something I've heard too many times to have bothered with it much myself. Who knows. Maybe this will be successful.

I don't like it; I don't have to like it. I would actually care less about the '1 million' figure if there was something in there specifying the money not go to 'psych' or 'coping' or 'stress management' research. So great that somebody decided to do something. Not so great that they didn't include trying to prevent that potential money from going to a place I would prefer to see it not go to. Seriously, the person or people who wrote this didn't think about that?

 

[JayS]

I actually wish people would stop using AIDS activism as a tool for comparison.

Agreed. The two situations are only comparable to a point.