For quite some time I have wanted to have a constructive conversation about ALL advocacy without it devolving into fruitless back and forth about how one group or another is evil (To put my bias out on the table, to me the evil group isn't the one that has made mistakes while trying; the evil group is the group that stood and criticized without ever trying to do anything
constructive themselves).
Here are my first thoughts to try and get something constructive started. Feel free to add to the list. Let's see if we can do this in a mature manner.
- What is it that you'd like to see in an advocacy group?
- Do we need more than one advocacy group?
- Where do we expect the funding to come from for the one (or many) advocacy groups we want?
- Who do we expect to actually do the work required for an advocacy group to gain credibility (shouting on the web doesn't count, that's venting/therapy, not advocating. I'm talking lobbying, patient education, physician education, etc.)?
- Should we require that board members be patients or family members?
- Are there mechanisms that could be put in place to keep the big egos that like to be in charge of everything from commandeering good intentions?
- Is having more than one advocacy group useful in a stick versus carrot kind of way? If so, is that because this is a useful strategy for actually getting something done or is the utility in giving patients a choice of places where they may feel more comfortable?
Lastly, I have no ambitions of directing such an effort. I am not well enough at the moment to handle my own daily self-care. I just thought (in a moment of utter cluelessness?) that this topic was important, that in the past it has always been hijacked by trolls attacking one group (with no real intent of doing anything constructive - my definition of a troll) and that we as a patient community deserved better than that.
1) I would like to see an advocacy group -- probably very small, and not very formal, no applying for non-profit status -- seriously exploring how organized protest, possibly leading to demonstrations, mass letter writing campaigns, and organized acts of civil disobedience -- could benefit us.
2) Yes, we need lobbying, patient education, and physician education can all be greatly enhanced by publicity. At this moment, just about any publicity is good publicity. Most of us probably think the publicity we're getting from the authorities has been consistently bad. Essentially, people with ME/CFS have been smeared by the false allegations of those who find a psychosomatic explanation convenient. I would like to suggest that we need to use the media to draw attention to our plight in various ways, and lobbying, filing for nonprofit status, writing a letter to your representatives, setting up a board of directors, engaging in fund-raising -- while all enormously important and helpful -- are not the only activities we should be pursuing at this time. Timing is crucial. The XMRV discovery provides an important window of opportunity for all forms of activism.
3) An advocacy group does not really need "credibility" except with those for whom it advocates. Patients, in our case. Scientists need credibilty. Not only because of the ethos of Science and its method, but because they rely on government funding. The unfortunate result in Science can be timidity preventing progress, on the one hand, and, on the other, a tendency to act in the interests of the government (where the money is) instead of in the interests of finding objective, scientific truth. Any advocacy group for ME/CFS should not be too cozy with the government. No advocacy group should be relying on government funds to fund their efforts, because it would then be a temptation for them to start acting in the interests of the government, (where the money is) and not vigorously advocating for the patients.
4) For all the reasons above, multiple advocacy groups are needed to keep everyone honest, and working as hard as possible. Competition is good for that.
5) Having said that an advocacy group does not really need "credibility," except with those for whom it advocates, I agree that advocate organizations need to maintain credibility on the science to achieve our goals. What they do not have to do, and should not do, is confine themselves to politely begging the government to help us. Those methods have not worked for a very long time. Yes, we need to continue doing just that, but some other people need to be stomping on the government's toes and kicking its butt at the very same time.
6) Credibility with those whom you disagree is one way to gain and maintain access. But it's not the only way. And because as a patient group we've never had any crediblity to begin with, that strategy is not working very well. I believe those efforts to gain credibility by reasoned argument and diplomacy could work better if augmented by people coming at the same problem, but from a totally different direction. We also want National Media coverage, don't we?
7) Shouting on the web at people who are deliberately obstructing our efforts to gain scientific legitimacy, or are blocking funding for scientific research is a perfectly legitimate form of political expression. It's a lot more effective, and even more therapeutic, when hundreds or thousands of people decide to vent on the same topic at the same time. I would prefer to see lots of people with wheelchairs and supplementary oxygen taking over public buildiings, but given the condition most of us are in, I think we need to be more creative about our use of the web.
8) I'm sorry you are so unwell, CBS. But let us not call fellow sufferers "trolls," or "evil," no matter how much disagreement currently exists.
9) And let us not narrowly define advocacy in a way that excludes the American revolution, the abolition of slavery and successful civil rights struggles in the U.S., successful efforts for female suffrage, successful efforts to end the Vietnam war, and successful efforts to end British colonial rule in India, etc.
and I do like the idea of a die-in.