August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Let's remember May 12th is International ME/CFS & FM Awareness Day on Facebook.

Discussion in 'Action Alerts and Advocacy' started by warriorseekspeace, Apr 16, 2011.

  1. warriorseekspeace

    warriorseekspeace

    Messages:
    72
    Likes:
    47
    Florida
    [​IMG]

    Let's remember May 12th is International ME/CFS & FM Awareness Day on Facebook.

    http://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160

    I only found out about it because of a young woman who came in to the general chat, named Holly, I think, who had the logo as her avatar.
    I'm so glad becasue of her I know about the date, May 12, 2011.

    I've been so sick and far behind socially (you know, just so crashed and fogged after doing the nust-do's of day-to-day life w/ chronic illness) and with social media too, I haven't even done facebook yet.

    Now I'm going to join, so I can become "Visible" at least on that special day, instead of staying so "invisible," as I have for the 22 years I have sufferred with this illness.

    I visualize having some good links on my page, and perhaps some good personal info about my life w/ ME/ CFIDS, and then getting close to the day, sending the "May 12 International ME/CFIDS Awareness Day" page to everyone I know. It has been a long time since most have seen me, and many never bothered to get to know me.
    And none have ever seen me in social media. And a blitz of info on the international scope of the problem, and the newfound awareness, of this illness is sure to make an impact, expecially if everyone who is affected by this illness sends it to everyone they know.

    Does anyone else have any other ideas? Perhaps like at a set international time, an international moment of slience, or Non -Silence, we all send the link to everyone?

    First, I have to figure out how to get on facebook, and find people's ocntact info, so if anyone wants to help me do that?..
    WarriorSeeksPeace
     
  2. kurt

    kurt Senior Member

    Messages:
    1,133
    Likes:
    204
    Syracuse, Utah, USA
    Great idea Warrior!

    I already added this to my Facebook profile.

    Here is the other graphic they are using:

    [​IMG]

    This is also a link, just click on the graphic to go to their FB page.
     
  3. Evangelina

    Evangelina

    Messages:
    35
    Likes:
    7
    Hi,
    I read your post on the International Awareness Day. I thought you might like to know that there are some other things you can do besides facebook.

    First of all I would order a batch of awareness wristbands. You can order them in shipments as small as 1 wristband from 24hourwristbands.com
    Our cfs/me color is blue. I just did this and I ordered enough for me and my family and my friends. The process took about 3 weeks w/o special shipping prices. I had 'Solve CFS/ME' debossed into the wristband using the "Georgiab" font. The wristbands turned out nicely and very readable. Here is the link: http://24hourwristbands.com/order-custom-silicone-wristbands/

    Next suggestion would be to write to your Senators and Congressman. You can find how to structure a Business letter here: http://usgovinfo.about.com/od/uscongress/a/letterscongress.htm

    How to get your congressperson's address here: (just click on your state)
    http://www.contactingthecongress.org/

    And be sure to include some zingers from respected doctors - like this link and quote from the NY Times : http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

    (It is about 1/4 down the page)

    "But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." (from Nancy Klimas - 2009)

    Tell your story and add a doctor's opinion. Invite your congressman to the CFSAC meetings of 2011. Contact PANDORA and see if any other CFS/ME patients are going to the Congressional Lobby Day from your state. Perhaps they could deliver your letters in person.

    Contact your local newspapers and tv stations. Let them know that a day for awareness has been set aside. Let them know about clinical trials close to you, and provide them with the names of doctors who would be able to discuss cfs/me knowledgeably.

    These are just a few of the things I have done, maybe some of them might work for you.
    Thanks,
    E.
     

See more popular forum discussions.

Share This Page