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I would guess they think its science based. PACE showed positive effect so they developed a program and using confirmation bias and patients being compliant "found" it works. There was no need to test it again scientifically because PACE did it for them. PACE is still on the books and given...

Its not?

Perhaps forum members should apply, we have unique personal insights into ME/CFS And we would be more effective then reality deniers (keep that part silent till after your hired). Since the goal is to get us back into paid work this is a grand opportunity to practice what they preach :rofl...

Alvin and swift rarely belong in the same sentence :laugh: But it can be arranged, though how does one create a surprise on an open forum?

We can only hope that is what happens :) Perhaps its worth asking him what happened to the money that was supposed to be used but was usurped since 1989(?) @Everyone Should we as a forum put together a get well card or something?

Then this is another one to ask Francis Collins

Is this good or bad?

I didn't know she is not doing well right now, my sympathies.

This is excellent news. @JenB I hope your ready for anything during the meeting, i would expect him to claim they are already doing a great deal, they don't have funding, they are not getting applications and they have big plans and so on. I would suggest brainstorming everything he is likely to...

https://arstechnica.com/science/2018/08/scientists-found-brains-internal-clock-that-influences-how-we-perceive-time/

This leads to them doing the same thing, playing both sides with the odd nod to reality. If they want our accolades they can reject alternative facts in their entirety and apologize for their blatant errors. Then i will recognize their good deed.

This is a good point, an idea for an article @dave30th ?

This seems to be a boilerplate response meant to postpone having to actually answer to anyone or make meaningful changes. So instead of stonewalling us yet again when exactly is AfME planning on listening to the patients it claims to represent and stop playing both sides?

It would be interesting to write up our own ME care guide. There are probably many out there already but if none are as good as what we could write then it would be worth pursuing.

Learning from the quotes above this one would be a bare start What is it your afraid of that you have to play both sides and only move slightly when your position is completely and utterly untenable? An organization that claims to be a patient centered one has no business harming patients then...

Much like "aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted" they are having to cede ground on playing both sides and they don't want to.

My bad, i didn't realize there was a link in your reply (f lux software orangeing out the screen) I agree but trust is earned, not given away. I look forward to more then the first step in that journey.

I don't know of this program, can you tell us more?

Yet it took considerable pressure to get to todays statement. Not science. They play both sides with statements like "Some people tell us that they find GET and/or CBT useful" then mentioning criticisms. There are other examples but this one is off the top of my head. Playing both sides doesn't...

Just recently they were defending the indefensible now they have seen the light... Sure. :whistle: This sounds like damage control.