Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 2, 2012.
New article by Cort:
View the Post on the Blog
View the Post on the Blog
Thanks Mark & Cort
Just to add that I'm afraid we won't be doing live (blogging) coverage this time, but I expect if we have a forum thread, members can do something similar to the liveblog on there...perhaps even with screenshots (photos) from the feed. I don't think I can make it myself this time - sorry.
Thank you for this article!
Here is the meeting agenda http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20121003_agenda.html
Here is the link to watch live starting Octoberr 3 at 9am http://www.hhs.gov/live/
Thanks Cort and Mark - it is good to see even if we are nowhere near in the UK.
It is key to have Cort at these CFSAC meetings and reporting to the patient community. Patients have come to count on PR to attend and report on important conferences and meetings. This meeting had some special moments that needed to be captured by a keen eye. Hope Cort will be coming to the next CFSAC and other conferences.
Here's a summary of the CFSAC meeting, by Jennie Spotila:
I think that clearly after 30 plus years of being nice and having committees of Doctors that also play nice it's time to take our horrible disease to another level.
In Belgium they denied CFS was anything but psychological until they threatened to start donating blood- that immediately got results!
I think it's time for us to do the same- despite our kind doctors recommendations. In 2013, unless we're put on equal research grounds with AIDS,
those of us that are capable, start donating blood- it's not contagious- right?
Let's start getting organized!
I wasn't aware of that situation in Belgium. Can you describe it more or give links?
From Jennie's report it looks like nothing has changed really at HHS except better talk from FDA. Unger's not going to take down the toolkit or stop using the Reeves definition she says. Sebelius says the CFSAC recommendation to use the Canadian Criteria isn't wont be given any weight whatsoever.
I would like to see more aggressive protesting so I think it's time to consider our options. The AIDS patients did make it rain with street theatre and fake blood in the streets.
The videos are posted on youtube a link
Thanks for another great article Cort.... thanks to Jennie too.
Im so happy to see that more people are seeing just how useless just "talk" is without actually change and action talking place.
Till some big changes are put in place, we know the government depts are just all "talk" and not truely taking this disease seriously like they say they are.
From the CFSAC:
This fall’s CFSAC Meeting is now available on the HHS YouTube channel. The event has been broken into various sections, listed below with the associated links. Once pending internal processes are complete, the video will be posted on the CFSAC website.
Welcome and Opening Remarks (CFSAC Fall 2012)
Public Comment on Day One- AM (CFSAC Fall 2012)
Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)
Biomarkers – An overview & Future Look (CFSAC Fall 2012)
FDA & Drug Development (CFSAC Fall 2012)
Public Comment on Day One – PM (CFSAC Fall 2012)
Committee Discussion & Plans for Day Two (CFSAC Fall 2012)
Opening Remarks & Agency Updates (CFSAC Fall 2012)
Social Security Administration (CFSAC Fall 2012)
Public Comment on Day Two (CFSAC Fall 2012)
ME/CFS Organizations (CFSAC Fall 2012)
A Path Forward (CFSAC Fall 2012)
Finalize Recommendations (CFSAC Fall 2012)
More political lies, stalls that have been going on for 'decades' sorry but I have been around long enough for all the lies from all these agencies...Funding private research is our only hopes and let's let the radiation scientists and leukemic talents take over from these government 'students'
and teach them the true scientific cause and replace them...How many more must die from their complete abuse and neglect and comedy about us dieing posted on their walls in their office hallways and tell me now where is the $10 million stolen from research gone and when will it be replaced and when will the F.B.I. make those arrests...
You can also try a Google Site Search
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