Boston CFIDS and Fibromyalgia Support Group Message Board › What is FM like for you? Tell the FDA!

What is FM like for you? Tell the FDA!

user 74949742
Group Organizer
Newton Highlands, MA
HI everyone, it was good to see you all tonight.  At the end of the meeting I spoke about a meeting on Fibromyalgia sponsored by the Food and Drug Administration (FDA) that was supposed to be held today to gather patient input about Fibromyalgia.  The meeting was cancelled due to weather, but the FDA will be collecting input from FM patients until Feb. 10.
They are interested in your answers to the questions below (any or all).  You can get more information about this, and submit your comments (copy and paste into their comment form) at this URL:
http://www.regulation...­ "Submit Comments" button in top right corner of the page.
The folks at FDA are truly interested in hearing from you and will LISTEN, so please consider offering your insight and experience.  Note:  If you also have ME/CFS/CFIDS, please answer these questions with respect to your FM.  The FDA has a separate effort going for ME/CFS/CFIDS.
Thank you!  Charmian  (Massachusetts CFIDS/ME & FM Association,
Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients
(1) Of all the symptoms that you experience because of your condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include chronic pain, fatigue, difficulty concentrating, sleep disorders, etc.)
(2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include sleeping through the night, daily hygiene, driving, household chores, etc.)
(a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days?
(3) How have your condition and its symptoms changed over time?
(a) Do your symptoms come and go? If so, do you know of anything that makes your symptoms better? Worse?
(4) What worries you most about your condition?
Topic 2: Patients' Perspectives on Current Approaches to Treating Fibromyalgia
(1) What are you currently doing to help treat your condition or its symptoms? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as exercise or acupuncture)
(a) What specific symptoms do your treatments address?
(b) How has your treatment regimen changed over time, and why?
(2) How well does your current treatment regimen treat the most significant symptoms of your disease?
(a) How well do these treatments improve your ability to do specific activities that are important to you in your daily life?
(b) How well have these treatments worked for you as your condition has changed over time?
(3) What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, restrictions on driving, etc.)
(4) What specific things would you look for in an ideal treatment for your condition?
user 4846038
Natick, MA
Post #: 33
Thank you!!
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