A Few of the Speakers at this Week's Chronic Fatigue Syndrome Advisory Committee Meeting at the Department of Health and Human Services in Washington, D.C.
Dr. Mary Schweitzer delineates what's problematic about the CDC when it comes to ME/CFS:
Dr. Joan Grobstein, a neonatologist, discusses transmission and treatment of ME/CFS and what the government needs to do in the next six months to end the inertia:
Attorney Charlotte von Salis speaks on disability benefits, the problematic definition, and why many patients want to dissociate from the CFIDS Association:
Respiratory therapist Meghan Shannon, who's had ME/CFS for 35 years, gives her moving testimony and explains what's wrong with the CDC website:
Demonstration by playwright Rivka Solomon, who is joined by other patients, outside HHS:
Too ill to testify in person, 22-year-old patient Ben Di Pasquale was filmed by a local TV station.
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thank you for sharing these important videos
ReplyDeleteMindy - please include the video of your own testimony. I would like to personally thank you for such an impassioned plea on our behalf. I pray that you will be taken seriously and your proposals followed up.
ReplyDeleteAlison - from Scotland, ill with ME for over 11 years
THank you so very much from someone who is bed bound much of the time from CFS and fibro. it brings tears to my eyes to know that you are all out their trying to be heard for us! For me! When I am alone so much and feel hopeless and helpless,what a wonderful feeling to know many people are working hard to be our voices because we who don't have the energy or strength to do it ourselves.God bless you all.Maddy
ReplyDeleteI've seen zillions of people give their testimony and I've even sent mine in, but it all seems to get sucked into a black hole with no effect. Can someone explain to me what has ever been accomplished by the CFSAC or anyone's testimony?
ReplyDeleteAnonymous, why it gets sucked in and goes nowhere? Because this is a CFS committee. Patients are asking about ME and what is ptoblematic and then tallking about ME/CFS. It is CFS and ME/CFS that is problematic (and groups that are promoting it). True ME patients want ME recognized - not sucked into the CFS black hole (which ME/CFS will in effect do the same).
ReplyDeleteThank you for posting our testimonies. I am trying to get my testimony from Oct 2010 isolated as I gave the same written testimony with the same requests. First was DHHS take over the CDC website with CFSAC ...this would be the oversight and we would get rid of CDC misinformation from last 17 years. 2nd point do studies on all patients and who they live with family members and others.
ReplyDeleteI too think Mindy's testimony should be up here. I would like to see a DVD of all tesimonies...
I also would like to thank Jean Harrison again for working so hard to get these meetings Web cast and seen by the world.
If nothing else, the years of seemingly wasted CFSAC testimony has left a clear trail of evidence for all the world to see.
ReplyDeleteA trail that leads straight to the greatest episode of institutional-neglect and medical-malfeasance in the entire history of medicine.