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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@JenB
When MEAction was first set up, you announced that it was a platform for the community to use. You said it is a unified place where everyone can post their news, petitions, posts. You said that this was your gift to the community.
I guess you eventually evolved into an advocacy platform of your own. Which is fine. You certainly have the right to do whatever you like with your own organization.
It is confusing though because you retained the unified community platform and your own advocacy organization.
The fact that the MEAction name and logo is used for both purposes is an added confusion.
But, that is your personal opinion and I respect that. It might not be the opinion of others. It is disturbing to me, not knowing where my money goes. At first, when the organization was just a platform for the entire community to use, I highly supported it
If the specific mission is made public, each individual can decide whether this is something that they support, or not.
Alternatively, consider protests. While the community occasionally discusses and has occasionally executed protests, they have been largely the traditional sign-holding sort of protest, which is bound to have limited impact because we are largely too sick and have too few healthy supporters to show up in numbers. I believe in the possibility of protests, but we have to find other types that suit our situation. There are many ways to skin a cat, we just have to find the ways not to. One of these days I might just get fed up and move to DC and sit in a bright, skin-tight bodysuit every day until they stop screwing us over . . ..
As for: "such as the belief that everything will be fine if we just trust in NIH and CDC"
Lol, that was not aimed at you, Jen. I know you are far more aggressive than that! And it wasn't meant as a specific criticism of anyone in particular, but at criticism of a tendency in this community. One that I actually think is pretty justified emotionally. It's hard not to hope when you feel you have no other options.
Trust, but carry a big stick.
Jen replied:When MEAction was first set up, you announced that it was a platform for the community to use. You said it is a unified place where everyone can post their news, petitions, posts. You said that this was your gift to the community.
I guess you eventually evolved into an advocacy platform of your own. Which is fine. You certainly have the right to do whatever you like with your own organization.
It is confusing though because you retained the unified community platform and your own advocacy organization.
The fact that the MEAction name and logo is used for both purposes is an added confusion.
Hi Nielk. Actually, we are an open source brand so anyone can use (We are trying to move toward a TEDx model: http://www.meaction.net/style-guide/). Generally, people from outside the organization *don't* use the brand – when outside organizations or individuals post on the site, I think the authorship is pretty clear.
I don't think Beth and I ever represented the organization in the way you describe. The very first action on the site, for example, was a petition for equal research funding that #MEAction created. It is still a platform for the community to use, and we are still committed to empowering individual activists to take action and promoting great ideas wherever they come from, but it was always intended to also be a platform for people to work together on common advocacy goals per the ACT UP model. Again, that's something that is taking us time to work toward realizing fully. When we do big public pushes, generally we try to be participatory, e.g., by asking for a vote or doing it as a petition. It's still pretty ad-hoc but most of the major #MEAction actions *are* participatory actions, with a different group of people participating based on interest and knowledge.
It was never "just a platform." As I said from the beginning, that has never been true. I am sorry for the miscommunication. We are not just a platform for pass through actions. That has never been true. We help initiate actions. We support other people's actions.
see hereBut one big difference is that we aren't really aiming to be an advocacy organization. We want to be a platform: decentralized, organic, and with a few basic guiding principles but no unifying stance or position. We don't aspire to speak with one voice or to be united. We aspire to help our diverse community become more connected and to do what they're already doing, better. We aim to provide tools and training that help people to become even more effective advocates and activists, and to leverage the virtual and dispersed nature of our community as a strength, rather than a weakness.
As I stated earlier, anyone can change their direction as long as they are transparent with their intent and actions especially when requesting funds from patients
Same goes with ME Advocacy, @Nielk.. i don't want to open a can of worm but early last year, there was a fundraising going on for a project and the organization changed the terms of the campaign which made me want to withdraw my support. i was quite upset about that and my trust for that organization is lessened due to that. And I refuse to sign a petition saying the NIH should 'STOP the study'. The approach is all or nothing, when so much can be done so all parties benefit.
'Before you point out the fingers at other, take a good look at what you're doing' applies here.
Energy would be best spent working towards the common goal.
Can HHS' institutional bias be investigated by Congress? Would they have the power to either force real change or make heads roll if they don't comply? How can you even make them see that things are biased?
Other ideas? Some kind of class action lawsuit?
Re: Solve, their board decided to make advocacy a part of their mandate months ago and announced this publicly. They are now a research and advocacy organization.
Like ACT UP we think we should absolutely sit at the table when it is a genuine seat. If not, we have no problem whatsoever throwing egg, exerting pressure, etc.
see here@Nielk – Do you have a link? I don't remember where I wrote that or what the context was. I think what I must have meant when writing that was not that we wouldn't advocate, but that we wouldn't be a traditional advocacy organization, with a single set of policy positions where X is right and Y is wrong. We wanted to be a big, diverse tent, which is exactly what I describe after that first sentence you bolded. I am sorry that my language wasn't clear there – I can understand why that was ambiguous.
All I can say is that our intentions haven't changed. We have been advocating for things from the day we launched with internally-generated projects and actions. Moreover, probably 90% of the projects we promote are externally generated. In our mission statement we say we are "primarily a platform." That is still true. The vast majority of the work we do is supporting and promoting other people's projects. But that doesn't mean just being a pass through media site – we actively collaborate.
I am sorry you feel like we pulled the rug out from under you. I have explained what our intentions have been from the beginning as clear as I can and right now I feel like we are going in circles with in a way that is not productive for anyone. We will think about how we can message better but this is starting to feel a little unhelpfully legalistic. The solution is really simple: don't donate, don't support, don't use the site if you're not comfortable with it.
@Nielk – Do you have a link? I don't remember where I wrote that or what the context was. I think what I must have meant when writing that was not that we wouldn't advocate, but that we wouldn't be a traditional advocacy organization, with a single set of policy positions where X is right and Y is wrong. We wanted to be a big, diverse tent, which is exactly what I describe after that first sentence you bolded. I am sorry that my language wasn't clear there – I can understand why that was ambiguous.
All I can say is that our intentions haven't changed. We have been advocating for things from the day we launched with internally-generated projects and actions. Moreover, probably 90% of the projects we promote are externally generated. In our mission statement we say we are "primarily a platform." That is still true. The vast majority of the work we do is supporting and promoting other people's projects. But that doesn't mean just being a pass through media site – we actively collaborate.
I am sorry you feel like we pulled the rug out from under you. I have explained what our intentions have been from the beginning as clear as I can and right now I feel like we are going in circles with in a way that is not productive for anyone. We will think about how we can message better but this is starting to feel a little unhelpfully legalistic. The solution is really simple: don't donate, don't support, don't use the site if you're not comfortable with it.
This is a good point which isn't talked about very much. The IACFSME needs to get some cajones. They've tried somewhat - they put out the IACFSME Primer for Clinicians, and 50 members signed the letter asking for the CCC to be used.
However the letter was ignored by HHS, and the IOM process happened. No word from the IACFSME on that. This is where they dropped the ball. It would be good to be able to understand the reason why this happened.
Possible solutions - somehow influence the IACFSME to behave in a stronger way. Or as Tina is saying, get another society to take us on (perhaps something related to neurology?).