Pervasive exhaustion explains why we aren't all traveling to our representatives for personal lobbying, why we are not all marching on street corners, why we can't do very much about it most of the time. Combine that with those of us with very mild illness, or near recovery who are trying to hold onto a life, or too sick to even use a computer, and that explains some more. Add in disempowerment from spin and propaganda and bad medical advice, and from government inertia and ignorance, and add in the disorientation, confusion and despair that goes with this illness so often, and it explains some more.
However these are factors we cannot control. Why is it though that only one in tens of thousands clicks on a button for a petition? That's not onerous. Sure, many wont have computer, or cannot handle the visual images on even facebook ... for some of us even simple visual processing is a problem. More might be depressed and in despair, and think its not worth it. What about the rest?
Its not just that they do not know about the problems and issues ... I think they don't. This goes to why they don't. Why are they not at least tuning in online every now and again, and voting occasionally? Why do so many not even know the problems in advocacy? I occasionally encounter people who should know at least the basics, are online at least some of the time, but don't seem to know anything at all about modern issues in ME or CFS. I know of support organizations that have stated to their own members that they don't want to know. Or that think ME is psychiatric, so getting involved is a waste of time.
These arguments do not apply to anyone who can find and read threads like this. They don't apply to anyone too sick or poor to be online. They do not apply to those almost well enough to be normal who are struggling just to work enough hours to survive. They also do not apply to anyone in severe depression because things are just so hard for them. What about the rest? Why are so many not even bothered to type something into a search engine from time to time?
Under one set of assumptions I have posted elsewhere, the ratio of those involved in advocacy versus those who are not is on the order of 1 to12,000. Even a more optimistic appraisal is 1 to 6800. That is a very minute ratio of advocates to others.
Lets just confine ourselves to Europe and the US though, where computing technology is often available, and usually affordable. Lets presume two million patients, but eliminate half as too sick, too poor, or too something else.
Using co-cure subscription as a guide, there are maybe 2500 advocates. This most optimistic appraisal I can come up with has a ratio of 1 advocate to 400 who could advocate in their own interest, but don't. Why?
