A group to discuss, investigate, identify and take action to provide forum members with information for themselves, family and friends on fibromyalgia and to investigate ways we might contribute to raising general awareness of Fibromyalgia.
This forum is made up of such a diverse group, from many parts of the world, a range of ages, talents and approaches that could be combined to raise awareness internally and externally regarding fibromyalgia syndrome. Let’s move it forward and take some action!
Great idea B2chi, there are so many others interested in raising awareness, hopefully they will be ready to join you in accomplishing this! Glad that you started this group!
Dr Oz recently talked about FM on his show. That’s the most I’ve seen about it in mass media. He should of devoted more time to it on his show and had more than one guest on that has it.
I totally agree Connie! There are so many if us with this and so many that want to speak out about it, which is why i love what B2chi is doing. Raising awareness is key:)
Hi Angelique your knowledge of how we can use social media to raise awareness would be great, as one of the group that gets senior discounts don’t have much knowledge of multi-media.
Hi Kat, any ideas as to how we can get the quieter members of the group to come forward with ideas and participate in some way in raising awareness. Could the group work on some tools to make it easy?
Thanks for the support SK, wondering if there are any ground rules re taking action as part of Ben’s friends (other than the normal ones) don’t see us out there demonstrating (lol)’, more preparing/amalgamating info for members, friends and families and maybe working with other groups to raise awareness or taking some type of action as a group. Just my thoughts I’m sure the group will have other ideas.
Is this group strictly about raising awareness about what is currently our there in regards to fibromyalgia? Or is it also about researching different theories of causes and treatment options?
I I was at my Internist last week and prior to my visit I put together a large spiral notebook of all the information I have collected over the years . When he walked in his eyes got huge when he spotted the notebook. The norm of my previous visits is me trying to describe how I am feeling and I leave feeling misunderstood. This appointment was a totally different experience , instead of TRYING to explain what it is like having fibromyalgia I had highlighted the most significant information and let him read it. I had assumed he read information on this syndrome/disease before this visit. Wrong he admitted he received all his information from the medical community and had no idea about what I introduced to him. His empathy grew instantly. Instead of a 15 minute visit he spent an hour with me. I finally was not brushed off So to the point this idea of introducing the world to Fibromyalgia is a fantastic concept. One has to wonder the statistics state 80 % of woman and roughly 20% of men are diagnosed with FM would it get greater acknowledgement if it was reversed ? If Fibro was affecting 80% of men I would venture to say their would be a significant" general awareness" . I am on board !
Hi Teri, From my perspective it would be yes to raising awareness about what is currently out there, not researching different theories of causes and treatment options. I don’t know if any of us have the qualifications to research different theories or treatment options.
HI Angelique, great offer. Wondering if it would it make sense for the group (or members of the group) to review the videos that are currently out there first and then move on to what we think is missing and how we can fill the gap and get some attention? What do you think?
I agree Angelique , there is quite a few videos out their already . Hoping I can post this song I found describing what we suffer with it is wonderful. @ Crynsugar ....respect your wish for me to join ....I tried ....not kidding BRAIN FOG ....not a clue how to do it.