Discussion in 'Phoenix Rising Articles' started by Mark, Jun 19, 2013.
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I thought Tom's comment on Jenny's blog was appropriate as was Jenny's acknowledgement.
Hope this leads to some genuine results.
Thanks Mark. I look forward to hearing their reply.
Thanks for sending this letter on our behalf.
As usual, the career bureaucrats are fussing at each other and playing their little political games. Meanwhile outside of Washington, away from the D.C. Dunces and the Beltway Bandits, us patients are still sick and not getting much help.
p.s. "The Beltway" refers to Interstate 495, the highway that encircles Washington. The Beltway Bandits are the hordes of consultants and contractors that inhabit Washington like intestinal parasites.
With all due respect to Tom, I have to disagree with his statement. Tom's based out of Ireland and as I had talked to him recently about other stuff, the way politics works there is different than in the US. I was also speaking to a Dutch acquaintance recently not at all about CFS or healthcare at all but about politics in general and his view was that European democracies tend to be less directly participatory in some ways than US government. E.g. Europe doesn't have referendums, initiative, etc. the same way the US does.
CFSAC was constructed based on a Congressional charter signed years ago and CFSAC needs to be renewed every 2 years. In the past and now still, people have written to their representatives to renew CFSAC when the time comes up. So it's not like CFSAC would be closed without notification to people with CFS unless they choose to not have CFSAC. (In which case, my response would be what's your alternative proposal? And how feasible is it?)
It's also a bit ridiculous to me that because of intimidation of one of our reps, we should just back down and roll over. If nothing else, people should educate themselves more about the history of CFSAC, what Federal Advisory Committees can and can't do, and how democracy ideally works in the US, especially US residents. It's not as though CFS advocates are asking for special treatment of our reps beyond how other patient reps of other illness groups are treated in their Advisory Committee roles.
A trick I use to test for discrimination is to ask myself, if this was cancer, lupus, Alzheimer's disease, or any other chronic illness, would their advocates, their concerns, their physicians, and their researchers be treated better? If the answer is yes, that's discrimination based on CFS.
Thanks to PR for supporting this letter, I personally agree its something which should certainly be supported. Thank you.
that being said I also hold some reservations on the whole thing as once again (as far as I know but maybe Ive missed something as Im not well enough to keep up with the posts here and what is going on) the PR community wasnt consulted at all before PR put its name onto something. Till PR has a decent committee speaking out for all here and not something being run by 2 or 3 people.. Im going to feel concern of just a few people speaking out for the many at this site (unless something is said to this community to seek its opinion before the PR backing goes onto important letters).
This site is supposed to be a community supported site but Im seeing very little of actual interaction with the community before decisions are made. Im highly disappointed about this lack of commication with its members.
Ignore this part of my post if something was said about this letter behind hand. As I said I do agree with this letter and support of it and that isnt what is making me unhappy about the community having no feedback before PR is supporting things. As a community site.. we here should be being asked for opinions first if to support things or even a simple poll done on it first. At the moment, everything seems to be done with the community being kept in the dark and yet this site is supposed to be our voices and thou I do agree with the letter, this is just another example of the community being kept some in the dark about important things before done before they are done.
For anyone who is wondering what Firestormm and Hope123 are talking about my comment (a little comment under a blogpost*) and Jennie's reply are here:
http://www.occupycfs.com/2013/06/18/requesting-an-investigation/ . As one can see, I wasn't critical of this initiative ["this sounds like it was worth complaining about"]. All I was thinking was there also another complaint about the CFSAC fairly recently and I was just thinking about the future. It was just a general thought that not every opportunity to complain should necessarily be taken. I was perhaps also thinking of the recent group in the Scottish parliament that closed down following a complaint. People may disagree about whether that was a good thing or a bad thing but it did occur. So it was just a general point that sometimes complaints can have unintended consequences and/or that people may not pay attention if one complains a lot. The CFSAC would be on firmer footing that, say, the Scottish group in parliament as Hope123 suggests (although we didn't talk about it specifically).
*I've lots of outlets for my views these days (Facebook, Twitter, lots of discussion forums, etc.). If I considered it a major point, I would likely have posted it in one or more other places.
Judging from the conversations on the forums on this subject in recent weeks, I felt that most members would want us to sign this letter.
As you've pointed out, you agree with our decision to sign the letter, and I think most of our members would agree too. If we signed something that most people disagreed with, I expect there would be an outcry. So at the moment, that's the control there is: we try to figure out whether the membership would support us signing, and act accordingly. But there is not an option for us to publish the letter publicly here so that members can approve or disapprove before it it sent: the letter is embargoed until it has been sent. Believe me, I would love us to have more than 2 or 3 people running PR and the board would love to have volunteers or representatives taking these decisions so that we don't have to - but I can't force people to sit on the board or volunteer to join an advocacy team, so until people step forward to do that, we are where we are.
The extent to which this is a 'community supported site' ultimately depends on the community, and how much the community wants to get involved in running Phoenix Rising - and the involvement I'm talking about here does not just mean posting on the forums, it means working as volunteers on projects, advocacy actions, moderation, content, etc etc etc. Anyone from the community who wants to get involved in supporting the site will be more than welcome.
We're going to have a discussion about this some time in the next few months, and the PR community will have the opportunity to discuss, and vote on, what approach we will adopt to this question. We can stop signing any letters if you don't want us to take part in these advocacy actions any more. Or we can have an advocacy team to take part in these discussions and take decisions on our behalf - if people step forward to do that and are prepared to preserve the confidentiality of the letters until they are published. Or we could draft our own letters as a community and organize our own advocacy campaigns and letters, and we could draft those letters and vote on them in public before sending them, if that's what people want to do (and, again, all of that is only going to be possible if people step forward to do that work). Or we can make Phoenix Rising a membership organization in which paying members elect representatives to take these decisions (and that's a lot of work as well so again we will need more volunteers if we're going to do that). There are a number of options on how we could constitute ourselves, but basically it boils down to this: We can stop signing letters if that's what you want, or we can carry on signing the ones we think members would support, or alternatively, volunteers can step forward to take part in organizational and advocacy work and we can explore ways to run the organization democratically. We'll have that consultation soon, but meanwhile we'll continue to sign the letters that we think the community would want us to support, unless the general feeling of members is that we should stop supporting these initiatives.
Gets my vote
Great letter. Hope something is done.
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