Nielk
Senior Member
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Do you mean this: http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance/about?m=455f883b
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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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No, that's not it. Sasha referred to it as "the new NAAME announced at the FDA meeting by Lily Chu."
No, that's not it. Sasha referred to it as "the new NAAME announced at the FDA meeting by Lily Chu."
NAAME is what advocates have been referring to as the Alliance over the last year. It's not yet a 501c3, but is made up of many independent advocates as well as organizations. Mary Dimmock has been leading the charge, and she coordinated the letter to Secretary Sibelius last year, and the letter to the FDA before this meeting about case definition. I'm involved, although I certainly don't speak for the group. But people have been working very hard on CFSAC, FDA, legislative and CDC fronts.No, that's not it. Sasha referred to it as "the new NAAME announced at the FDA meeting by Lily Chu."
NAAME is what advocates have been referring to as the Alliance over the last year. It's not yet a 501c3, but is made up of many independent advocates as well as organizations. Mary Dimmock has been leading the charge, and she coordinated the letter to Secretary Sibelius last year, and the letter to the FDA before this meeting about case definition. I'm involved, although I certainly don't speak for the group. But people have been working very hard on CFSAC, FDA, legislative and CDC fronts.
What's the relationship between the construction of the NAAME website and the disabling of the Coalition's website?NAAME is what advocates have been referring to as the Alliance over the last year.
What's the relationship between the construction of the NAAME website and the disabling of the Coalition's website?
Congratulations to Jennie on her appointment to the FDA’s Patient Representative Program!
That's great - I'm not sure if everyone can see the link in your post to Jennie's article on her blog about it:
http://www.occupycfs.com/2013/05/06/patient-representative/
Two days after the FDA workshop, Mindy Kitei wrote, “While patients had only two minutes to talk, FDA officials waxed lyrical about the lovely baby grand piano in the hallway, should any patient care to play.” Mindy's two minutes have been posted now on the CFS Patient Advocate blog:
I struggle to watch the the FDA videos because I can't abide the spectacle of government departments “collaborating,” playing footsie with the CDC case definition. A decade after the publication of the CCC, patient groups petitioned the FDA to separate ME from CFS, but the FDA failed to acknowledge any difference save a difference in the name.
The CDC case definition has been destroying lives for two decades. What's happening to patients every day is nothing short of criminal.
Like Nielk, I have painful memories. When I was diagnosed with CFS, I complained of intermittent paralysis in my leg muscles when I jogged. I was encouraged to exercise. I described a new startle response that flooded me with “electric” sensations. No doctor ever commented. I asked why minimal stress was precipitating an escalating response that I couldn't shut off. I've never heard that symptom better described than by Howard Bloom earlier this week.
I'm mostly bedbound now. I couldn't care for my mother who exhibited ME symptoms but wasn't diagnosed because of her age. Her caregivers didn't change their bathing practices despite her cries of protest. In the end, she refused to eat. These things didn't need to happen. And they're happening all over the world. It makes me want to weep, and sometimes I do.
You hit a raw nerve in me, Bob. The ICC was published almost two years ago, and Mindy, bless her heart, spoke of the ongoing carnage. Where is the urgency, Llewellyn King asks: “The hell I write about...is here and now. It is the hell of those who live with a disease that is incurable, has inadequate therapies, indifferent government attitudes, social stigma and no strong public voice.”I appreciated Mindy's contribution, but I don't agree with this assessment of the event.
So do I, Nielk. So do I.I wish I could undo it.