Search results

The photographer Irving Penn was a famous fashion/fine art photographer. He is especially known for that b&w shadowy style, which feels in its own way quite appropriate for ME. Since it's a fashion magazine, I think it's a classy choice, really kind of emphasizes the invisible illness aspect...

I just want to add it's been eight years since Francis Collins was all rockstar with his pals in the video above singing "The Times They Are A Changin," about a year after he became head of NIH in 2009. Where was the urgency about the blurry diagnosis, the lack of funding, the dramatic things...

I just LOVE that we are doing these AMAs here. Honestly, this place is the hidden treasure in all the upset last fall. It's a whole new level of awesome over here, and I'm so grateful to everyone for performing the miracle that is s4me.

You're right, @ahimsa, the sentence makes no sense. Both passages you quoted also stuck in my craw. He's saying things that sound like something, but aren't really anything. This appears to be something he specializes in. The false hope I experienced, right after he became NIH director, is...

I totally appreciate the spirit of giving people the benefit of the doubt, and room to change. Collins, though, will gain that from me when he takes some kind of meaningful action, rather than simply making half-baked implications of care. This has been going on so long that I can only trust he...

I sometimes forget to quote the bit I'm referring to, sorry; and I wasn't snarking either :) (Except at the institutions that are supposed to be paying attention! :devilish:) So when I said there was plenty of evidence above, I was responding to what Barry said: I feel strongly that entities...

So, disability insurance is a publicly traded entity (how is this even a thing?) This means their primary fiduciary responsibility, mandated legally, is to shareholders. Not sick people. So the whole thing is a lie. It's a fake entity. Their top people making millions per annum. More and more...

There is plenty of clear evidence of exertion harm from the Lights and I-forget-their-names-right-now who do the 2-day CPET/V02max test in California.

It is confusing. However this little statistic is infuriating:

P.S.Does anyone have archived the contents of the framed poster that was on CDC's walls for years maligning CFS patients? THAT is what we've been up against, NOT false hope. Eurrrgghhh so many bad words wanting to come out the ends of my fingers right now.

It's not even an apology. It's the worst kind of face-saving and teflon-for-responsibilty word salad. Collins has not been our friend historically. What does this bs even mean? the first part of the clause has nothing at all to do with the second. Criticism of the medical establishment's...

Tuller is so gifted in the realm of reporting in great, accurate technical detail, which is something we have desperately needed. But this is not what it is wanted in most mainstream outlets. Few people are interested in such detail, and even fewer in detail about this topic. But the way his...

Such powerful commentaries. Always such powerful patient commentaries and then either a lackluster or non-response from the committee. I've come to see the whole thing as less than useless. Prove me wrong this year, CFSAC, prove me wrong!

Patience a major practice with this disease! :banghead:

An endless circlejerk of organisational political cronyism.

Me too, TigerLilea. Looking forward to seeing our results!

:banghead: :devilish: :wtf: What on earth motivates this level of disdain and hatred? I feel sick reading this.

Yes! Sea change underway!

Aah yes, the SMC sees the house of cards crumbling and begins the "pivot".

Oh, thank you @Joh , I hadn't heard that totally touching one from the Chronic Creatives. Another unexpected onion ninja attack! ETA: One beautiful and talented singer in Graham's one, Hunter, has since passed away :cry::broken_heart: