For CFS (Fukuda) patients who don't satisfy an atypical ME diagnosis, what consequence do you see arising from your position: “As a clinical entity, 'CFS' needs to go?” With neither an ME nor a CFS diagnosis available to them, won't they be diagnosed with CF instead, thus finding their current CFS diagnosis exchanged for a CF diagnosis?
The International Consensus Panel writes, “Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies.” How long do you expect such patients to wait for more favourable treatment?
Ember,
With all due respect, what CFS patient receives favorable treatment now?
And I have to reiterate the difference between an advocacy/activist strategy to get to the table: a REAL table where all these differences can be sorted out with scientific integrity, we first need an activist strategy that is working. That works.
Otherwise we're just rearranging deck chairs on the Titanic, by arguing about second tier concerns when first tier concerns have not been prioritized. And actions decided.
I respect you tremendously, I have since I've gotten on the forum. In fact, I would want you 100% on the round two team. You have so much knowledge that will be imperative when we turn that corner.
I am operating at a different stage in the game: the part that gets people like you to round two.
It's been said from the beginning: nothing short of an Act-Up type response will help us.
(We don't have to throw blood or do what they did:we just need a strong organization, and a relatable message, and then a plan of action(s)
I can help with that. This is my wheelhouse. What you know, is not my wheelhouse and and I readily admit this. I have since day one. All of you wonderful, knowledgable advocates!
You would never want me to make the science and history arguments.
Another way to put it: most elected officials or organizations have "policy wonks" that know all the indepth information. But the messages are turned into laymans terms and the messenger:the elected official or face of an organization is the person who connects well with people and with a relatable message.
There are exceptions: Bill Clinton, for example is both a wonk and a messenger. (I'm not putting a value on him, just describing)
I'm an organizer. I'm a message person. You would want me (or someone like me) to help create an organizational structure for a movement, you would me want me for outreach and grassroots organizing, you'd want me to help create a message that connects to lay people.
To move forward we have to deal with tier one or round one concerns.
We have to find where to draw lines in the sand with each other and where not to.
In the civil rights movement that was nonviolence. That was non negotiable. I don't know if they had much else.
But we have made tons of lines in the sand with each other, and it's more damaging to us than the CAA or the IoM.
We have to be able to live with imperfection.
The Montgomery Bus boycott went on for about a year, iirc. Did that get all that they needed? Did it articulate all the needs of the Civil Rights Movement? Not at all. It was round one.
Do you want a movement?