I'll play devils advocate though and point to some of the logistical challenges associated with such a protest, including rallying sufficient numbers of advocates in a specific geographic area. Plus, as you know, our condition can fluctuate so significantly from day-to-day, it would be hard to estimate just how many people would actually participate on the day of the event.
If you consider a metropolis like New York, LA or London, and take the population as 10 million (just as a round figure), then assuming 0.2% of the population has ME/CFS, that gives you 20,000 people with ME/CFS in these cities. But I agree, a lot of these people may want to go, but then feel unable on the say, due to a downturn in their illness. The other issue would be communuication: how do you get in touch with these 20,000 in order to let them know about the demonstration?
I think the most appealing alternative is to focus primarily on online protests that could harness the entire international ME community. We don't have huge numbers in the ME community, so we need to focus on united efforts that generate the most attention for our cause. Social media and other forms of online advocacy give our community the best opportunity to achieve these objectives, in my opinion.
I have been trying to think of ideas regarding an online protest, which ME/CFS patients should be able to do much more easily. One idea I had was to focus on a few major newspapers, and then every day for week, or even a month, ME/CFS patients could post mini articles and statements about ME/CFS in the comments section of those newspapers,
for every single article that the newspaper published, not just in the ME/CFS articles. This would mean that everyone reading the newspaper would have a good chance of seeing those statements.
This is just a first attempt at an idea for an online protest. With a bit of brainstorming, we may be able to come up with something much better.
Given the desperate nature of the ME community, acts of civil disobedience should not be discouraged. The ME community has been politely pleading for help for a generation now, it's time to consider different approaches. Unfortunately we face too many systemic challenges (insurance companies, etc) to accomplish our objectives through "sit in" protests. Personally, I would gladly risk civil disobedience and the potential of higher conflict to prevent yet ANOTHER generation of people from suffering through this nightmare.
With political causes and traditional marches and demonstrations in the streets, what can happen is that you start out with group of core supporters of the cause, but after one or two demonstrations, this core group of protesters attracts what you might call the "rent a mob" — there are always a number of people in society who have a lot of pent up anger, and they may then link themselves to a political cause just because it gives them an opportunity to express their anger. This is often why demonstrations and movements may start out peaceful, but some time down the down the line, they can turn aggressive. Personally myself, I find aggression and turmoil very hard to bear. And I think many ME/CFS patients are like this: we have high sensitivities to such things. I find it very unpleasant even when I just witness two people in a verbal disagreement. So if you want a demonstration to be ME/CFS patient friendly, you'd want to keep it calm and peaceful. The AIDS/HIV marches and demonstrations by the gay community did not use any aggression, as far as I am aware.
What might work rather well, though, is the use of drama and theater, as @
ricericerice! indicated just above. Some street theater with ME/CFS patients on IV drips, or ME/CFS patients dressed up a zombies — after all, most of us ME/CFS patients feel like zombies mentally. Many of us are the living dead. At least this sort of thing would attract the media, because the media love a good photograph opportunity.
Mass civil disobedience is another story. This concept was pioneered by Gandhi in South Africa, and involves no aggression or violence, but rather a peaceful mass action. So for example, ME/CFS patients could en masse refuse to pay taxes, on the grounds that only a paltry amount of tax money is allocated by government to ME/CFS research. Or better still, write could write to our local taxman, and explain that we are withholding a certain percentage of our taxes, and placing this money directly in a ME/CFS biomedical research fund, because the government has been too negligent to do this. Of course the problem with this idea is that many ME/CFS patients are not working anyway, and may depend on state or insurance payouts. The other problem with this particular idea that it is illegal. But you get the general idea.
I do think what @
ricericerice! said above about
offending sensibilities could be a very good approach, though. And this could be done through street theater, just as the gay community did with coffins in their HIV/AIDS marches.
