Discussion in 'General ME/CFS News' started by Summer, Oct 20, 2009.
Wildaisy, it's on. Mike Dessin is coming up to speak
Can someone please tape Mike's speech (at 9:15) and post it on YouTube? I want to hear/see it but my RealPlayer won't work right now. I didn't think I'd be awake but I couldn't sleep so here I am.
HRSA was on 1st - describing what they do - free medical access for those who have difficulty getting care. They just got over 2 billion!!!!! and have opened 126 new centers and 4000 new staff. They serve 20 million people and sound good
go to www.hrsa.gov to find free care
Then Mike Desin was on 1st. Well done. Brought photo of when he was 102 lb
Then was LauralB's wonderful video
Now is Laura Black, a CFS and other chronic disease health care provider. She's tearing into the CDC
laurel's dvd presentation
just watched laurel bertrand's dvd presentation. very moving and effective in an attempt to convey the horrific status of her health, being bedbound and unable to speak for years. and yet the hope and love of life she has also was clear. i think it's obvious her illness is not depression or psychological in nature.
as an aside, that's quite a studly fiance she has. coincidentally i think that's me.
Klimas was great during HRSA - lets stop talking about guidelines - we have an expert group here and could have written them already.
Confusing politics re how guidelines are written, funded, accepted. Wanda Jones will gather all the necessary info for the meeting in 6 months.
Now Dr Ken Friedman is on - a university medical professor. He has been notified that testifying and serving on the CFSAC committee id not part of his job and he will be punished - terminated. A fellow professor has already been fired for similar activities. THere is NO medical training in the US -
Dr. Ken Friedman was absolutely stunning!
I don't know what his personal story is or why he does this but, whatever it is, risking what he has and carrying on is heroic. His testimony was brilliant.
Blown away, again today!
Deborah Waroff is on now - 25 year patient - advocating intravenous ozone treatment research as is successful for her
Absolutely - the heroes in this field are stunning
#6 Lee Misal IACFS/ME director - call for CDC rebuild
establish basic research guidelines like hepatitis and AIDS
funding needed + under NIAIH instead of Women's Health
#7 Susan Megawitz ME/CFS since 95
4 doctors, elephant treatment (ir treat symptoms) - none know what other is doing + noone know about ME/CFS
Susan M! Wow! What a wonderful presentation! Fiery and heart rending together.
And, now Megan, the weeping beings again. "I am someone's daughter!"
Yes, Jim definitely deserves credit for being the stud in my video! Thanks for your kind words. Was surreal to watch and have it played at the meeting -- a goal of mine for over a year. Thanks again to all who made such kind comments to me in an earlier post as well as privately. Well done to all who testified today and yesterday!
His daughter has ME/CFS.
Too difficult to watch
This is just wiping me out emotionally.
One would think after 20 years I would be more resilient. Heck, I've attended some of these meetings and even testified once.
I am out of here; have an appointment.
Handing out virtual hankies to everyone!
Harnoor Singh will make a great doctor one day!
Every time I hear someone who does not have ME speak, I say a silent thank you and I am humbled by their courage.
Hey Laurel! Left a message on your wall. Wow, you! Thank you!
My heartfelt thanks to all who testified! There wasn't a ringer in the bunch ~ you did us proud!
I really appreciate the play by play of who is testifying and what they are saying as I can't watch today. Thank you!
Thank you to everybody who was/is there to speak up for us. I've been sitting here in tears more than once but also I am feeling so much hope.
It's so good that we will be able to read the testimony.
I'm really want to read Lee Meisel as I was very impressed but had a brain fart as my cognition was flagging.
Will have to stop watching after "blood guy".
#9 Harnoor Singh - a med student - fantastic
description of a woman who lost her insurance, ER dismissed her....
lack of training for doctors - call for training for ALL doctors
#10 Eileen Hilderman patient advocate
- call for research into infection
- change name
- media coverage concerns - even NYT used chronic fatigue (like chronic coughing for TB) - suggest media coaching for all govt representatives who speak on ME/CFS
#11 xx Donet
- CDC needs to require that all researchers clearly indicate patient cohort, including "pure" ME/CFS and all co-morbid diseases - FM, MSC, IBS...... and what prevalence rates are for each
Wanda Jones distributed list of 38 recommendations since 2004 (she came in early, compiled info and copied it herself) 11 show some progress, 10 expect progress
Oleske suggested discussion of them
They send recommendations off - get no response - how can they be more effective?
Rachel suggested vote to make Centers of Excellence again and infrastructure to research new discoveries, access to care, treatment, and teaching be #1 recommendation. Oleske volunteered himself and Wanda to write up and figure out how to push (past success with doing this with HIV) eg meet with Secretary
This is what I'm wondering. All this testimony is wonderful and this is so exciting. But will anything come of it? The committee can make all the recommendations it wants, but it's powerless. They could recommend to remove Reeves and replace him with Barney the Dinosaur* and it sounds like those who receive it would just shove it into a drawer. Do we have hope that it's different now?
*A total improvement.
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