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

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With all due respect, don't you all think it's more important that orgs like MEAction be pressed on issues like taking more radical direct action (a la ACT UP) ensuring greater funding for this illness, than petition them about something like this? There is very little high quality replicated evidence e on this condition and it's because we as a community havw failed to fight as hard as aids patients did, and held the NIH to account for funding

 

I say this as someone who overall supports MEAction but am fed up with the slow pace of research and the lack of radicalism that matches the seriousness of this disease . People can spend 100 years worrying about how various advocacy orgs "make us look", already giving in to the respectability politics defensiveness that Sharpe, weasely et al want us to give in to. No matter how polite we are , no matter how much we try and make sure that no advocate in our community says something not backed 100% by science.. the pace people and others will always find something to discredit us--a defensive posture is conceding the whole political/economic game from the start . They will always find something to paint us as bad--one frustrated patient online who calls Sharpe a bad name, another patient who is so desperate they go for quack medicine . The point is that we should not concede to their framing and worry so much about how we look . From the media's point od view and the publics , we almost don't exist at all... And until we fight for visibility , that will continue to be true

 

The most high profile publicity we've got over the last few years has been Kelland's pieces that portrayed patient advocacy efforts as 'radical' and a threat to good science. That sort of visibility is not useful for us and it is worth doing what we can to avoid it imo. We're a weak group whose 'radicalism' would pose no real threat to anyone with power - all it does is provide ammunition to those looking to undermine us. As a group we're too sick to be able to engage in a lot of the activism other groups have used to draw attention to the injustices they faced, and attempting to replicate their tactics is not going to work for us imo.

 

Thanks for your comment.

I think the example of AIDS, while interesting, is very much the exception rather than the rule in medical history. I think opinions differ on what exactly made the AIDS patient movement successful. It had an inside/outside strategy. In my non-expert view, it was a combination of high-profile actions that got the attention of the media and knowledge of AIDS research and FDA/CDC/NIH bureaucracy on how to speed up the process. I don't think making claims that are not supported by scientific evidence was a necessary ingredient of that success.

The main reason for this proposal of a commitment to science and evidence-based medicine is not to increase NIH funding or to make us look good in the eyes of British psychiatrists but to make sure that patients get accurate information about their illness and are not bombarded with overstatements.

 

An inside outside strategy needs the outside part. You don't "get in the door " and get a chance to talk to the CDC or FDA or nih without having some kind of leverage. So far, every single ME advocacy.group is way more "inside" than "outside". I'm even told some people thought millions missing was too radical. A polite legal protest in public space that has no relation to our adversaries? Not even in proximity to the NIH? Not inconveniencing anyone?

Im pretty sure that act up succeeded in large part because of their aggressive civil disobedience actions. Yes they had inside lobbyists too but would they ever have gotten funding without aggressive actions? And let's remember these patients had similar levels of stigma as our group at the time. So there were lots of dissenters who said "act up is too radical, it'll make us look bad". But act up acted as if they had nothing to lose. And this worked. I feel we're in a similar position. The illness is a living death. I feel sure that I will not make it through another year unless something drastically changes. The paltry progress we've made with non replicated small cohort studies and small amounts of funding thr NIH has thrown us can be risked imo. Because at this rate we won't see breakthroughs until long after most of us are dead.

Also let's remember how various social justice organizations fought for justice , from labor organizations to civil rights ones. All of the civil rights protests in the US were peaceful but very aggressive relative to anything any ME advocacy group has done. I mean lets not forget that ACT UP desecrated communion wafer in a more religious age , (an action i don't necessarily support) and yet that didn't sink their movement and we have very effective trearments for AIDS, an illness that started along the time pf the first CFS outbreaks in Tahoe. This illustrates that when you have a robust protest movement made up of people who have nothing to lose, amd don't worry about public perception, you can get through some bad publicity.

. I don't think that this is a necessary ingredient of that success either. I just think that it would be nice if people put in tbe same effort they do toward arguing over the quality of the existing scientific literature toward making sure we have funding and a fighting chance at a cure within our lifetimes.

You all may find this rude and maybe I'll.be censored by the mods but I feel a very reasonable frustration with the state of the ME community , and ME advocacy. I simply can't wait years for a cure. This incremental approach is going to kill me.

 

most of us are too sick to engage in direct action. But the actions that act up did were often with a very small group of people. There are 20 million people worldwide wjth this horrible illness, some with supportive friends ans caregivers , and you think it's literally impossible to find a group of 20 or 30 people to do actions like this ?

I guess you're satisfied with the status quo. The status quo is I'm going to kill myself by the end of the year if we don't havea a cure. I'm sure that's true for many others. Yes we are sicker than aids patients were. No that doesn't mean we should concede tbe game from the start.

 

"
On October 11, 1988, ACT UP had one of its most successful demonstrations (both in terms of size and in terms of national media coverage) when it successfully shut down the Food & Drug Administration (FDA) for a day.[19][20] Media reported that it was the largest such demonstration since demonstrations against the Vietnam War.[citation needed]

The AIDS activists shut down the large facility by blocking doors, walkways and a road as FDA workers reported to work. Police told some workers to go home rather than wade through the throng.

"Hey, hey, FDA, how many people have you killed today?" chanted the crowd, estimated by protest organizers at between 1,100 and 1,500. The protesters hoisted a black banner that read "Federal Death Administration".

 

I don't see the analogy with Act Up really. By the time Act Up was formed the cause of AIDS was known. For ME nobody knows where to start. You don't persuade funding bodies to pour money into a problem if nobody knows where to start. scientists were falling over each other putting in projects on HIV once things got started. And since it was molecular biology it was trendy anyway.

 

I dont think the situation has to be homologous to be analogous.

Yes, there is less known about ME than there was about AIDS at the time. But there was also stigma about the disease and indifference that would have led to progress being too slow had direct action by groups like act up not occurred.

The analogous part is that scientific progress and medical research are not decoupled from matters of political economy. Scientific progress doesnt occur in a vacuum and the only way for non scientists like us to effect change is to do direct action to put pressure on governmental bodies to lead on this problem.

If anyone has a better idea to speed up the pace of research id like to hear it.
This is a desperate situation that I can't afford to wait out.

This is next to zero quality of life if quality could be quantified (and maybe it can,i love that Stalin quote about quantities becoming qualities at a certain threshold ). I dont think its reasonable to expect patients to quietly wait for change.

 

The pressure on the NIH so far has yielded some results, such as their intramural study and slightly more commitment to funding. These results are not satisfactory but nevertheless show that public pressure on these agencies can work. More is better.

 

Ah yes. The Stalin quote is "Quantity has a quality all its own". Perhaps the reverse is true , and i think its interesting when applied to quality of life problems. Some might say its impossible to Quantify but how many useable hours, how much function your body has ...all of this is at the intersection of quality and quantity. Nevertheless i think that my quality of life, if it could be quantified, is approaching zero. Or maybe negative. If pain is negative and pleasure is positive

 

I mean , I understand that at this stage, the rewards for funding research on this condition are low. This is why I don't expect pharmaceutical companies to be particularly interested in this process, because until tjeres an idea of the etiology , drug trials wont be realistic. But I think its ethically incumbent for someone to fund research on a not very well understood condition, especially one that doesn't meet the criteria for a rare disease and has such low quality of life. Why shouldn't the government heavily fund exploratory research?

 

Heres an example of why this disease is situated within problems of political economy. Wessely, sharpe et Al all had connections to Unum, an insurance company that has internal memos leaked that showed claims for CFS were becoming a problem for them. Wessely, Sharpe et al also had connections to a DWP that was implementing austerity policies. This is public recprd not conspiracy theory. The idea that these battles can be fought in some pure realm of ideas unaffected by social and economy factors is fantasy

 

I addressed some of these points in my video here:.

https://www.youtube.com/watch?v=Aat_9OTcwZU

 

And here.

https://www.youtube.com/watch?v=eCzsYgNyqHc

 

Thought experiment --if you had severe ME would you be satisfied with the pace of research ?

 

Someone made a brilliant reply in this thread which i got an email notification for , but deleted it. I thought it was good enough to be worth rephrasing. "Nobody knows where to start" is exactly the reason to pressure governmental organizations to up the funding. Because without a cash injection and broadening/deepening the evidence base a lot private companies will not fund this. It's exactly when it's not yet a profitable area of research that is when we need to pressure the government to lead investment. The point I'm responding to is tautological. If we can't get funding for research because there's not enough research, how will we ever get enough research?

I'm not sure at this point if the objections raised by @Jonathan Edwards to my point at based in ethics or some idea of "realpolitik". If it's the first, I think the prevalence and severity of ME in DALY (Disease adjusted life years) justify the level of funding that many other diseases get. We deserve this. It's not entitlement. If it's the second, my response would be--what other choice do we have ? If aggressive protest actions are not a realistic way to get more funding, what is? We are backed into a corner here.

I share many of Mr Edwards concerns about the quantity , quality, and replicability of the current research in this illness, which is why I'm confused that he would not support actions to greatly increase the funding for research. Surely scientific research is subject to laws of political economy like anything else , and surely a lot more funding would speed up this process. But I'm just a layperson. Not a particularly bright one, but a very frustrated one. Maybe I can be enlightened on this topic by someone smarter than me.

 

ME Action does not rule out outsider action. The problem is finding people with enough health to manage it, as well as having a specific goal that would be better served by outsider action than inside. If you want to organize a particular action and can figure out how to carry it out, I’m sure that many people will join you.

ACT UP, in my opinion, was successful because they had young, previously healthy people who abruptly became sick and died. I remember the shift in the AIDS movement when babies were born with HIV, when Ryan White was sick and died. Let’s be honest - most of our deaths are from suicide. There may be many more from direct causes, but science hasn’t shown that yet.

I think that we can learn from the AIDS movement, but recognize that our own movement is different. ACT UP was led by a natural constituency - gay people who were losing their friends left and right. Most people with our disease can barely make it out of the house, much less form a massive demonstration at NIH. Our caretakers utilize their energy taking care of us.

There may be public demonstrations in connection with ME Action’s current campaign to encourage Dr Koroshetz to take more urgent action. Such actions are being considered. But I think that we have to consider the toll that even one demonstration will take on the community. I could probably go for getting arrested once, but I would want it to be when the chances of having an effect are the greatest. That would require careful planning.

ME Action’s most successful outsider action was in NYC when Per Fink was there to speak. That was an effective demonstration because the organizer of the demonstration lives in NYC and has many ties in the AIDS and other activist communities there going back for many years. We have painfully few allies in other places. It’s challenging, but if you were to organize an outsider demonstration, you would probably get good backup.

 

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.

 

Im not sure that I'm currently well enough to plan such an action. I may be post surgery ,possibly in the next few years. But I guess my thoughts in this thread are more Along the lines of expressing what I want as a "constituent" of these orgs. Your points make a lot of sense but as I pointed out in one of my videos ---we have big numbers to draw from even if most of us are too sick to do these kind of actions. 20 million worldwide, plus caregivers etc. What i woukd like to see is a network like MEAction continue to reach outside the ME community for support, as in the Per Fink protest. MEAction has such a well organized and large social media presence , and a few of our advocates do, that it would be far from impossible for an organization such as that to find 20 or 30 healthy allies to plan and help execute a direct action protest of some kind.

I think we are starting to have voice and presence on social media --that needs to be drawn on as much as possible, in inventive ways. of course most of us are going to be sick to plan or execute the kind of protests I'm speaking of but we need to have organizations use their clout to find allies that can help with the "outside " part of the strategy. It's our only hope.

Now , I should get back to resting bc I havw crashed myself making all these videos , and run out of helpful meds, but let's see if I can keep to that. Haha