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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.

No problem

Poor sleep quality is a hallmark of this wretched condition. The specific abnormalities often vary from person to person but i can relate to some of what your wife goes through and go through other different ones that also are likely ME related. Same here I know exactly what you mean on this...

I am unable to read the whole study but meat is not the only game in town, what if it were replaced by more vegetables instead. Also what meat or what vegetables, if the predominant meat was say pork but turkey is the ticket then this study would end up suggesting that carbohydrates are superior...

Warning: Nerding :nerd:

Of course they do, it would be like asking PACE pushers if they agree about prescribing CBT/GET to ME/CFS patients. They will certainly agree. Indeed https://www.nature.com/articles/35002188