Should ME organisations do more direct action to get more funding for ME research?

Wilhelmina Jenkins said:
I may be wrong, but I have doubts that a demonstration would be likely to change scientific decisions. I grew up in DC, and participated in demonstrations for various causes most of my life. Most of them do not make a ripple. DC people see so many of them that they don’t even blink at them. The ones that are effective, like the demonstrations against apartheid, went on day after day for long periods of time with many prominent people being arrested.

I’m not trying to be discouraging; just pointing out that it won’t be easy.
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I think the demonstrations would have to be coupled with a 21st century media strategy and draw from larger oorganizations. Like broader disability rights or social justice coalitions , to get numbers and backing. But is it impossible ? I should hope not.

Even if it was nearly impossible I sort of think it's noble to fight as hard as possible, like the salmon that batter themselves vainly against dams.
 
If MEAction could reach out to the DSA , I'm sure they could/would help. They have big numbers and participate in direct action and community organizing
 
The most successful "direct action" of patient organisations, is not flashy demonstrations, but raising money for pilot studies as @Tom Kindlon keeps saying.

Large funders like the NIH, MRC, NMHRC, EC, AMED, ICMR, CIHR, CAMS etc. basically only grant money to sure bets - groups that have already demonstrated the method and potential for "positive" results. Increasing research relies on far more pilot studies.
 
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Snow Leopard said:
The most successful "direct action" of patient organisations, is not flashy demonstrations, but raising money for pilot studies as @Tom Kindlon keeps saying.
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What is the proof of that? I admit to being single minded but my historical example is act up bc I view it as closest to our ccause in terms of neglect of the illness, severity and also stigma --although a different kind.
 
Without a doubt, raising funds for pilot studies is important. As long as I have been involved in the advocacy community (30 years +), pilot studies have been funded in this way. I do think, however, that we need to find a way to get into NIH’s very deep pockets as well. NIH has a good record of providing funding to researchers who submit proposals with preliminary results and maybe a publication attached, but that is a very slow method. We need urgency on the part of NIH.
 
Wilhelmina Jenkins said:
Without a doubt, raising funds for pilot studies is important. As long as I have been involved in the advocacy community (30 years +), pilot studies have been funded in this way. I do think, however, that we need to find a way to get into NIH’s very deep pockets as well. NIH has a good record of providing funding to researchers who submit proposals with preliminary results and maybe a publication attached, but that is a very slow method. We need urgency on the part of NIH.
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The problem is that the NIH simply doesn't fund pilot studies - the potential exception is funding centres as a whole, something I had submitted to the CFSAC back when it still existed...

If the NIH keeps claiming there is a lack of research capacity for them to hand out more grants, then we have to say, well you can take action to solve that by funding more centres directly!
 
Demonstrations have to be a bit different to stick in the collective conscience and get coverage.
One of the most effective I can remember recently to make a point was disabled people " parking" their wheelchairs in parking spaces to highlight the fact that ise of disabled spaces was widely abused.
Simple, good press coverage and raised issue globally via social media.
https://www.thepoke.co.uk/2017/09/1...elchair-users-people-parking-disabled-spaces/

It needs to be visual, that's why the millions missing shoes carry such weight .

A whole lot of people shouting has limited effect.
 
Amw66 said:
A whole lot of people shouting has limited effect.
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Many of the ACT UP actions had compelling visuals but also involved "a lot of people shouting". Anyway , i think specific organization that's more creative than just "a lot of people shouting" is good , but "a lot of people shouting" still beats "a lot of people politely milling about" or "a lot of people being silent/absent" by a fair margin I'd say. As long as the shouts are directed at someone who might hear them. Someone high profile.


As far as the NIH goes , if they can't directly set aside funding for a disease they can at the very least request that Congress do that. It should be their job to guide lawmakers on the science and the deserved funding for various Disease but sure, jf they can't do it qe should put pressure on congress. But enough pressure on NIH should work as well as they theoretically have the ability to go to congress and demand more funding for x disease if it's a special case and if they're on our side. So I don't think it would be misplaced energy to put pressure on them.
 
I may be wrong, but I don’t think that NIH is allowed to advocate for particular diseases. I know that CDC cannot. This is because they are a part of the executive branch of government, under the President. So Congress, which is in change of funding, can fund NIH to do a particular task, but NIH is not allowed to lobby Congress.

So if we want money from Congress for our disease, we have to convince Congress and they can make it happen. This, to say the least, is not easy.

But NIH really does have sufficient funds for a robust attack on this disease. They just have to decide to do it now rather than later.
 
I think @Wilhelmina Jenkins may be right that the probkem is not unwillingness for direct action at MEAction. But not knowing how to achieve that goal. Why not brainstorm publicly, using MEActions excellent social media presence and that of some of its board members ? It comes down to this :. We are too weak to win this war on our own. Either way we have to beg for our lives back from someone. Im suggesting that rather than beg the NIH without leverage, or beg scientists who have little funding, to save us, we beg the broader public, especially those involved in social justice work, or beg our potential allies , to help us formulate a plan for aggressive direct action and execute it. How does that sound?
 
People are working on it, @debored13 . It’s harder than it sounds. If you have good ideas, they would be welcomed. The whole point of the Values & Policies Initiative was to bring in good ideas from the community. I don’t think that the inside game should be given up in favor of outsider actions, but they could definitely add to the effort.

And I have to say that, in my opinion, the letter to Dr Koroshetz is definitely not begging. It’s a clear statement about what actions could be accomplished within NIH’s current system. A lot of work went into it. Nobody’s begging.

In my opinion, we have the best chance we’ve ever had for a big leap forward. We aren’t debating the legitimacy of the disease with NIH any more; we’re talking about the best road forward. Dr Koroshetz’s plan is too slow and lacks urgency. We want to change that.
 
Wilhelmina Jenkins said:
People are working on it, @debored13 . It’s harder than it sounds. If you have good ideas, they would be welcomed. The whole point of the Values & Policies Initiative was to bring in good ideas from the community. I don’t think that the inside game should be given up in favor of outsider actions, but they could definitely add to the effort.

And I have to say that, in my opinion, the letter to Dr Koroshetz is definitely not begging. It’s a clear statement about what actions could be accomplished within NIH’s current system. A lot of work went into it. Nobody’s begging.

In my opinion, we have the best chance we’ve ever had for a big leap forward. We aren’t debating the legitimacy of the disease with NIH any more; we’re talking about the best road forward. Dr Koroshetz’s plan is too slow and lacks urgency. We want to change that.
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maybe what I said has come across too harshly? I said in my video that MEAction is my favorite ME activism organization. The reason I'm addressing these frustrations towaed them is they're the only org that I feel like has a chance of actualizing what I'm talking about. Npt because I want to be hardest on them.


I have been helped personally a lot by MEAction and I personally think everyone involved in that org are good ,smart people. I thought that addressing some of my frustrations w the pace and strategy of ME activism to the only org that seems to listen and only org that seems to have a possibility of actualizing this stuff would make more sense then shouting into the void.


As far as the "begging" comment , I may be projecting , because i have a chip on my shoulder about being too weak to be taken seriously as an activist by any adversary what i meant was ,if one is politically not a formidable threat, and doesn't have much leverage, we're dependent on others for hekp politically. I may just have a big chip on my ahoulder about being dependentto phraseit as "begging"for help. But what im saying is i dont fewl like the NIH will respond to us asking until we havw some kind of political leverage and public pressure , and then its not asking its telling or demanding. And that we could probably ask allies to help us in this fivht ans get more of a positove response than asking the NIH.

Thanks for your work over tthe years as an activist. I'm grateful to MEAction as well. I'm just expressing generic frustrations bc i cant live like this. Ill try and come up with more specific ideas before talking to MEaction directly.
 
One of my concerns is that I get the impression that MEAction has gotten negative feedback ahout some of their more radical actions , and that they may be stuck between a rock and a hard place with trying to represwnt rhe whole ME community. What im expressing here is a desire to connect with like minded, frustrated individuals that want more radical actions ,and see if we can then come up with some kind of statement to give MEAction. One organization can't please everyone , but I believe that there are enough of us that are frustrated with the slow pace of this research that more radical actions could please a lot of us. Of course i may be wrong. This is super preliminary brainstorming. But trying to get a feel for how people feel about that. Obviously some people are thinking that more radical actions may backfire. @Wilhelmina Jenkins you don't sewm to be saying that as much as saying they may simply not work.

The example I gave in my rambly video, showing how act up did things that really crossed a line in terms of offending broad swathes of the public , and yet it didn't even come close to sinking thwir movement, shows most what i am trying to get across. That I don't think its productive to worry so much about coming across too radical or offending people , that conceding to possible negative framing from the start is weak abd a big mistake. We have less to lose than I think some people think. I mean I don't foresee myself makung it through another year in this state , so maybe that's where im coming from urgency wise.
 
I really don’t think that ME Action is reluctant to take outsider action at all. It’s just a question of what would be effective. We just don’t have the kind of healthy support that ACT UP did. Even attending Millions Missing events puts most of us in bed for weeks.

Attracting healthy allies is difficult. We’ve been trying for decades. If you have any good ideas about actions that we can carry out without making ourselves much sicker, I think that you should share them with ME Action. People throw out ideas about outside action all the time.

Rather than worrying about antagonizing the larger community, I believe that the major barriers are due to our own health and the lack of healthy allies. But I would be surprised if outsider actions were not, at some point, a part of the #NotEnough4ME campaign.
 
I don't see why we couldn't reach out to the DSA to get healthy allies with experience protesting and organizing...
 
debored13 said:
I don't see why we couldn't reach out to the DSA to get healthy allies with experience protesting and organizing...
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If I'm reading your posts correctly (not really able to watch your videos) you're interested in more protesting in the streets. So my suggestion here may not be what you're looking for.

However, one way to get started would be to ask some other organization to help us boost the number of signatures on the current ME Action petition:


Some healthy allies with connections could put the petition out on different social media feeds where more folks can see it.

Of course, that assumes you agree with the contents of the letter to Dr. Koroshetz

If we could get large numbers of healthy allies to understand that ME is widespread, disabling, can hit anyone (a healthy lifestyle is no protection!), and has been neglected for years (relative to its disease burden) that would be a good first step.

I mean, even if "the answer" is to get non-ME patients protesting in the streets (and I have no idea whether that is the answer -- I have no clue) then you first have to get people motivated, right? And that means educated about what ME is.

Folks won't protest in the streets unless they think the cause is both important and urgent. If they think it's just a bunch of folks who are "tired all the time" (and possibly lazy and unmotivated) then they aren't going to be committed to do any protesting.

Just a few rambling thoughts, I hope they make sense.
 
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