I agree. As I've mentioned elsewhere, I also have concerns about the name. I think it could have been better and I'd like patients to have been consulted. If it's not too late, I'd still like us to be consulted, although I think the name is enough of an improvement on 'CFS' to live with for two or three years while the science progresses. There are many good things in the report - many others who don't like the name have said so too - but I can understand that people want to focus on what they don't like, so that they can fix it.
So, if patients are going to challenge the name, I'd like to see a productive protest that has a chance of success, and that shows the committee respect. That committee included people like Ron Davis, a top-flight geneticist who is working flat-out to find a cure for his desperately sick son and for all of us; and other clinicians that have supported us for years.
People can read the card and the messages that people are writing and can make their own minds up about whether they'd like to join in with it.
When the committee members accepted their spots on the panel of the IOM, they were very well aware that the majority of advocates, experts and patients were adamantly against it, yet they chose to serve on it.
We are not just upset about the name. It is all about the criteria. They are way too broad and simplistic. (I will go into detail elsewhere what the issues with it are) We had said from the start that we want HHS to adopt the CCC and will not accept anything less.
This is what we have chosen to do. This is not acceptable to us. We have a right to express our opinions.
It's interesting to note that when a member posted a negative comment on the thread with the thank you card to the IOM, they were quickly admonished by you and the administrators to take that comment elsewhere.
This thread is for members who want to express their dissatisfaction of the IOM results and do not accept the IOM criteria or the new name.
*On a personal note, I am done tiptoeing around. After hearing more news yesterday regarding a most loved member on this forum that ended her life, my anger is spewed. I will not sit by and and play nice while young ME people take their lives because there are no successful treatments for them. This has got to stop and I will do whatever is in my power to propel the science forward to achieve that.
This IOM criteria will only hold us back.