One of the earliest things I was taught when I first began to get trained in political advocacy was that 'they' (they being the group you are trying to get to change from) is that 'they' will throw all sorts of balls up in the air to get you to drop your ball.
Your very powerful ball. A ball you may not realize is as powerful as it is, and it's why they want you to drop it.
The simple fact is, ME/CFS advocacy has arrived in sufficient numbers to cause worry.
Our ball is that fact and the 35 signers of the letter.
Dropping that ball is in no way in our best interest.
Believing we can pass that ball to them, but keep our eye on it or somehow control it is just not possible. Even if they put players on the other team you like. It's not your team, You lose once you let go of the ball. The game is lost.
You lose nothing by hanging on to the ball. You lose everything by letting go.
It can be hard sometimes for people to know when to bend or give, but the basic thing, you can never give is the very basics of your cause. Your ball. That is not compromise or negotiation that is decimation of an advocacy group and the needs they represent.