justinreilly
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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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Am I missing something. I thought the CFSAC meeting was two days. I only see one.
It is two days but they've only uploaded Day 1.
I thank you, Nielk, and everyone who submitted oral or written testimony. That testimony needs to be put up on the website so everyone can read it. It helps to have something up on a government website that media or others can quote or reference.
I suggest everyone read Pat Fero and Charlotte Von Salis' testimonies about how money has been spent on CFS research.
I would also advise everyone who submitted testimony to check that their testimony is posted and that it has not been edited. I would not be paranoid about this except numerous people have not had their testimony posted in the past and/or have encountered problems with the government claiming they didn't receive their testimony or that it wasn't submitted in time. Fortunately, some people saved the e-mail confirming receipt of their testimony to show federal officials. Why is the government afraid of what a group of sick patients and their supporters would say?
[In fact, it might be interesting if people were to post their testimony somewhere anonymously ahead of time so others could see what they wrote. Not only will this help others with their testimony, it provides media potential quicker access to what they have to say instead of relying on DHHS to post their testimonies.]
Posting testimony doesn't do much good. They claimed they would give priority to new people who had not commented before and it was ALL the same Pandora, Coalition pple, Mary Schweitzer, who has spoken at every meeting since I can remember. I had a spot reserved by phone and they said they "lost" my #. This gets more and more depressing. Lenny's comment about the "meaningful" comment by a patient: that we need help and hope??? And these people want to take over ME and make it ME/CFS. Nancy and Lenny are off, and if the media goes to any of these people and those trying to ingratiate themselves, we will be sunk no matter what.
Jill,
The reason that it is the same people is that no one else showed up. If it were not these patients giving up their health and own money to attend, no one would be speaking for the patient community. The DHHS would love to close the book to this illness, no one attending would allow that. I am thankful for Mary, Pat, PANDORA, CAA, Charlotte,Lori, Joe and the other handful of patients that showed and got up extra early to Protest before the meeting in the cold weather. As for them losing your number I believe it, they were in disarray. One call-in from a patient doctor took HHS reps hours to get connected. How do I know that??? I knew the doctor who was set to give testimony and I went after the staff until they connected with the doctor. Had I known you were to testify and had your number I would have done the same for you. It is why as a patient community we must stand together. I appreciate what these patients are giving to this movement. Many come from across the U.S. just the trip is crushing to their health.
I just looked again and I don't see it.day 2 is up now.
Thanks, Gabby! I appreciate the compliment.I want to give a personal big thank you to Andrew for his very courageous, strong, impactful testimony.
Jill,
The reason that it is the same people is that no one else showed up. If it were not these patients giving up their health and own money to attend, no one would be speaking for the patient community.