I’m so glad to be back to chat with you again. The stressful situation in my life seems to be on a short hiatus, so thought I would use the opportunity to write to you about something I think is very important. You may have noticed references in your weekly email bulletins from ImmuneSupport.com about something called the Million Letter Campaign. For those of you who have not investigated I want to encourage you to become involved.
The campaign is aimed at getting national publicity and awareness of Fibromyalgia and Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis -- ME, as it is called in most of the world outside the United States). The date chosen for this campaign is Fibromyalgia Awareness Day/International ME/CFS Awareness Day, which is May 12, 2005.
I wish I could say I had something to do with this great idea. However I first heard of it from Dominie Bush, a woman who provides a tremendous amount of information and support for those of us with FM/CFS. How she does it, considering she also has these challenges is hard to imagine. In any case, in the literature on the website (I will give you the url later) says that the idea was really presented by one of her readers named Pattie Caprio. She said “I am trying to get national recognition for the pain sufferers of FMS/CFIDS. We need patients who are willing to write about their experience with this disorder. We plan on having a Mass mailing go to the White House (First Lady), ABC News (20/20), Montel Williams (who has M.S.), 60 Minutes (Mike Wallace has had CFIDS) and Fox News on May 1, 2005.” Pattie says “We are hoping that a million letters will be sent.”
Many of us know the difficulty of getting recognition of these diseases just to get appropriate medical care. It is much more difficult to win disability cases, whether private disability or Social Security. Very little government money is spent on research on these diseases, because there is little recognition. We need to get national attention.
What Pattie and Dominie ask is that we each do the small task of writing a one page letter about ourselves and our disease. I know getting it down to one page will be difficult. But more than that probably won’t be read. Dominie says “If all victims of FMS/CFIDS/ME (and their family members and friends) will mail their letters on May 1, 2005, we will speak as one voice and hopefully capture national attention for this illness. This will be much more effective than anything else we can do as individuals!”
On her website for the campaign, Dominie gives suggestions of what information to include and the names and addresses to which the letters should go. She also gives a few other suggestions of who to send letters to if you have additional time, energy and postage (the postage for the five letters is $1.85). “We don’t want to dilute the quantity of our letter to the MAIN recipients, so if you can only send 5 letters, please send them to the 5 main addresses only.”
“We are asking FAMILY MEMBERS AND FRIENDS of those with FMS/CFIDS/ME to write letters telling how this illness has affected that person’s life—the difficulties this chronic invisible illness poses for normal living-how they have been treated by doctors, employers, media, insurance companies and disability attorneys—the misunderstanding of family, friends, etc. This will maximize the number of letters that go out on May 1, 2005. It is something that family and friends can do to HELP the person they care about.”
Also from Dominie “We need to build enthusiasm and momentum in the Fibromyalgia community between now and May 1, 2005. Please tell Fibromyalgia support groups, friends with FMS/CFIDS, and even doctors who have experience with FMS/CFIDS patients and understand this condition. Forward this information to people in you email address book or post it on Fibromyalgia newsgroups. We need to get the word out!”
“I don’t know of a better way to accomplish our goal of FMS/CFIDS Awareness! It will take just a little effort from each of us in telling our own unique FMS/CFIDS story in “one page” form and sending it to people who have power and influence in our society. Remember, we are doing this not just for ourselves, but for millions of sufferers worldwide.”
Being proactive and making noise is the only way any group gets notice for any cause. The reason that AIDS got so much attention and research money was because those affected by it were very active and vocal. They organized to express their needs and call attention to their cause. We need to so the same. I would encourage all of my readers to become involved in the Million Letter Campaign. More information together with things to include in the letters, and addresses can be found at the campaign website:
For those of you who are interested there are even MLC T-shirts and Sweatshirts on sale! Thank you Pattie, for the idea, and Dominie, for use of so much material from your website. Again, I would encourage my readers to get those letters in the mail on May 1, 2005. Mine will be. Take care and be well.
Yours in health,
I welcome your comments and questions at: firstname.lastname@example.org.
My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well.