Lymies! Please speak up about treatment options!
LymeDisease.org (formerly CALDA), has created a quick and easy survey tool for people who have Lyme disease. This organization has been a power in getting Lymies’ voices heard and affecting public policy and educating the medical profession, patients, and the mainstream about Lyme and other tick-borne diseases.
Their LymePolicyWonk site is the activism arm of the organization. Why is this survey important? Here’s their answer:
The treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January. It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue. But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease? The answer is: NEVER. It’s time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits. Our last survey drew over 4,000 responses. Let’s do it again and remind the IDSA that patient values are central to treatment guidelines!
Here’s where you can find the survey. Please spread the word to others you know with Lyme disease!
One MCS/EI Community Closes, Another One Opens
People with multiple chemical sensitivity (MCS) or environmental illness (EI), have been networking, chatting, sharing information and supporting, and blogging at The Canary Report for the last few years. However, Susie Collins, who owns and operates the ning-hosted TCR is taking a year off to attempt the controversial neural-retraining protocol. We wish her well on her journey!
Fortunately, someone else has stepped forward to start up a new MCS community, also hosted on ning. It is called DTOX Radio. Those who are familiar with ning social forums (ChronicBabe, Lyme Friends, TCR, Planet Thrive) will find the setup familiar. Unfortunately, like other ning forums, it is pretty inaccessible to those who are blind. If I find out about blind-accessible MCS networks, I will definitely blog it. Meanwhile, you can check out or join DTOX Radio here.
Okay canaries, please chirp this up! Tweet and otherwise spread the word!
– Sharon, the muse of Gadget, and Barnum, SDiT