"CSF", "chronic fatigue", Ugh! Come on people! You are some of the top experts and you can't even get the name right? Get it together. Just call it ME; I don't think you can mess that one up.
The following isn't low cost, but crucial: why not provide or raise emergency funding for a Rituximab trial? Why are the salaries of the execs still stratospheric while their performance is not?
CAA has made marginal improvement, but we need you to speed up these important and/or low-cost measures!
Why doesn't CAA make basic free and low-cost changes that will help us and have been requested over a year ago by a number of patients such as all of the following (except re Rituxan), How about calling the disease ME? How about requiring patients in the biobank to have ICC and CCC ME? What about making it clear that while XMRV proper is dead, HGRVs may have just been born (pending further published evidence)? Why doesn't CAA work to make changes on the content of it's website info?
excellent patient testimony, including by Jennifer Spotila, CAA director. Thank you, Jennifer! I agree 100% with everything you said... except, you validly lambast CFSAC for not ensuring HHS comply with its recommendations; you specified the recommendation that all govt agencies use the term "ME/CFS." How can you be mad at that if you and CAA only call the disease "CFS"? Why has CAA said that it will only start using anything but "CFS" after CDC does (even though NIH already uses "ME/CFS")?
let's all email in support of Prof. Ken Friedman's position that NJ Med and Dental School must be closed (unless it agrees to remove it's ban on discussing ME)! (sent mine in)
Hi, this video set up as unlisted on youtube? It can only be seen with an outside link. Why not share it with the youtube community??????? Please consider changing the video status to 'listed' so the entire youtube community can easily view this. Thanks.
"CSF"??? GET THAT RIGHT, or just call it ME...
MacAlexandra 2 months ago
"CSF", "chronic fatigue", Ugh! Come on people! You are some of the top experts and you can't even get the name right? Get it together. Just call it ME; I don't think you can mess that one up.
justinreilly1 3 months ago
The following isn't low cost, but crucial: why not provide or raise emergency funding for a Rituximab trial? Why are the salaries of the execs still stratospheric while their performance is not?
CAA has made marginal improvement, but we need you to speed up these important and/or low-cost measures!
justinreilly1 3 months ago
Why doesn't CAA make basic free and low-cost changes that will help us and have been requested over a year ago by a number of patients such as all of the following (except re Rituxan), How about calling the disease ME? How about requiring patients in the biobank to have ICC and CCC ME? What about making it clear that while XMRV proper is dead, HGRVs may have just been born (pending further published evidence)? Why doesn't CAA work to make changes on the content of it's website info?
justinreilly1 3 months ago
excellent patient testimony, including by Jennifer Spotila, CAA director. Thank you, Jennifer! I agree 100% with everything you said... except, you validly lambast CFSAC for not ensuring HHS comply with its recommendations; you specified the recommendation that all govt agencies use the term "ME/CFS." How can you be mad at that if you and CAA only call the disease "CFS"? Why has CAA said that it will only start using anything but "CFS" after CDC does (even though NIH already uses "ME/CFS")?
justinreilly1 3 months ago
let's all email in support of Prof. Ken Friedman's position that NJ Med and Dental School must be closed (unless it agrees to remove it's ban on discussing ME)! (sent mine in)
publiccomment@ov.state.nj.us
justinreilly1 3 months ago
Patient Mom testimony: "We went to many specialists who weren't too special." Haha. all too true and typical for ME patients.
justinreilly1 3 months ago
But why didn`t gave God brains to everybody to figure things out? ;-)
summaoi 3 months ago
Hi, this video set up as unlisted on youtube? It can only be seen with an outside link. Why not share it with the youtube community??????? Please consider changing the video status to 'listed' so the entire youtube community can easily view this. Thanks.
jimijamesh 3 months ago