Reflections on advocacy

How would one persuade a reluctant organization to start a search anyway? Maybe by telling them how bad the problem is, how long it has gone unaddressed, and how many people are affected?

 

I am not sure there are such organisations really. The impetus for research has traditionally come from charitable foundations and enthusiastic individual scientists. Government bodies can nod and say yes we can try to prioritise that - which certainly MRC have done, but I don't see that as being the log jam. MRC has 'prioritised' ME since 2002. NIH may not have prioritised but I suspect that reflects mostly a perception that there are no substantive leads to follow.

 

At their own expense. And with no help or support whatsoever.

I feel like this framing would convince a lot more people. A common feature of ignored problems is a belief by people ignoring them that they will not be personally affected. Not-in-my-back-yard is a potent source of denial for all sorts of things, pretty much the same reason why climate change action is being pushed to the next generation.

Because as far as we can tell everyone is at risk. Would be nice to find out, most people pay 100-1,000x more each year in insurance for disasters that would have less than 1/10th as much impact.

 

I am seriously dumbfounded by this mindset. Maybe it's just that computer science works completely differently but whether it's for practice or research, solved or even partially solved problems are the most boring types of all and nothing generates greater enthusiasm than a completely unsolved problem, it's where it's at, the chance to have the kind of great impact that is impossible to have on mature problems. Pretty much the same in most fields of science to be honest, unbeaten paths are the most interesting, not sticking to searching the well-lit spots because that's the spots that are easy to search in.

This habit of demanding a full solution to the problem before being interested in solving it is more than plain bizarre, it's one of the most anti-scientific thing I have ever heard. Don't know if it's broken incentives from a system that rewards uselessly adding to a known problem over tackling the unsolved ones but this is a deep, fundamental flaw within medicine.

Like Ron Davis remarked, observation is the first step of the scientific method and it's basically rejected as a valid effort by institutions, as a matter of principle. Even though this is how even middling scientists ended up having huge impacts on science, by merely being the ones who tried to work, sometimes alone, on a neglected problem and stumbling on something important by merely being the first to try. I have no idea how people expect this solve-it-then-I'll-be-interested to give good results but it's very easy to see the problem from the outside looking in.

 

That's pretty much how physics works. Someone has to fund basic science otherwise the whole field would have gotten stuck a long time ago. It's expensive but it pays of many times over in returns on investment over the long-term. As it would in medicine, our continued disability is many times more expensive than the current do-nothing or do-useless-things-that-have-no-chance-of-amounting-to-anything.

It's so basic and fundamental to how science works yet somehow almost seems to be a point of pride in medicine that they don't do that. I find that both fascinating and horrifying but it explains a lot about how some problems make no progress at all for decades despite constant pressure by desperate people begging them to just do their damn job.

It's certainly true that the practice of medicine is incredibly expensive and every dollar in research kind of takes away from delivering services but it's still both the right thing to do and the one with, by far, the best track record. In a sense mindset and money are kind of one and the same since whatever decisions regarding research funding are made, it's such a tiny fraction of overall spendings that it's almost insignificant.

Especially as with the whole BPS thing, the money is being spent, it's just being 100% wasted rather than eventually contributing to solving the problem once and for all. So I'd put it all down to mindset mixed with very poor allocation of resources. Which could be solved by actually taking into account what patients need and listening to us for once, so yet more mindset standing in the way.

 

To add to what I said, I think inflating the figures is counter productive to advocacy. Take this example:

https://www.ajourneythroughthefog.co.uk/2019/05/common-myths-about-me-cfs-debunked/

1 to 2% is 664,400 to 1,328,800 not 250,000 so this article contradicts it's self.

 

Some more thoughts:

One of the strengths we have is that ME/CFS is a genuinely important problem that affects global society. Those who look for meaning in life, those who wish to make a real contribution to society, may find the idea of joining our movement to solve ME/CFS to be very appealing. It is also a challenging scientific problem where important discoveries are probably waiting to be made.

The activities of this community could also grow into a useful model for patient participation in research. I really like that there an interest in cultivating critical thinking and communication.

The networking and awareness raising that Ron Davis is doing is also invaluable.

Many of the problems that we have in ME/CFS are probably not difficult to solve if only we fully understand them, from the disease maintenance to the high neglect at all levels. It could be very valuable to do some research into the reasons that ME/CFS is so neglected. That could translate into vastly faster progress if it helps us overcome the neglect. Why do professionals from relevant fields not believe that ME/CFS is a serious problem that needs attention? Are they unaware of it? Do they think it's synonymous with depression? Do they feel powerless and despirited because there's no treatment? Do they have no idea where to even begin the problem solving?