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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Not defending him, as such, but it is possible that he is sincere and genuinely wants to help us, but simply does not have enough political clout (on his own) to swing adequate funding our way.Only time will tell whether Dr. Koh is. to put it bluntly, yet another agency flack mouthing all the right words or is committed really committed to making a difference.
There is some truth to that. The CDC could not have got away with what they have, if the NIH had been more on the ball....but the NIH is a much more important branch of the government to us; it is the research arm of the government and, in many ways, it has failed us more than the CDC does.
While in one sense it is just a cosmetic change, it does reflect a significant & positive shift in the underlying politics. Re-labelling something is often an important early step to re-positioning the politics around it and getting it taken more seriously....the first thing [Mangan] did was announce that NIH CFS website (Trans-NIH Working Group) would use ME/CFS henceforth; a cosmetic gain,...
Thank you! Great job as always, but why so harsh to Dr Koh?
Not defending him, as such, but it is possible that he is sincere and genuinely wants to help us, but simply does not have enough political clout (on his own) to swing adequate funding our way.
There is some truth to that. The CDC could not have got away with what they have, if the NIH had been more on the ball.
While in one sense it is just a cosmetic change, it does reflect a significant & positive shift in the underlying politics. Re-labelling something is often an important early step to re-positioning the politics around it and getting it taken more seriously.
Fantastic summary Cort! Thanks so much for taking the time and obvious energy it took to do this!!!
No argument there.The money we are asking for is miniscule and they still won't give it to us..........
Little indications that the playing field is getting a little better (which is very relative in this case) help us from completely losing our minds but if there is no funding, no serious change in attitude across DHHS then I'm not even close to satisfied. Just my black and white view on this because the rope-a-dope is getting old but I'm still swinging.
Life is short - ours is shorter (and much harder than most) - so get busy people.