FMS AWARENESS EVENT MAY 12TH 2003

[c1sissy]

Thanks Thomas, appreciate you keeping us updated on this.

[Thomas]

It's that time of year again.

National Fibromyalgia Association ON THE AIR!
Tune in this month as the NFA commemorates "National Fibromyalgia Awareness Day"
 
http://www.fmaware.org/site/News2?page=NewsArticle&id=7083
 

Saturday, May 10
8:30 am to 9: 30 am PST (11:30 am to 12:30 pm EST)
Live on BlogTalkRadio
We will be on site at the National Fibromyalgia Association's "Walk of FAME" at The Block at Orange, California.
Listen live at http://blogtalkradio.com/fibromyalgia
 
Monday, May 12
Heaven Talk Radio 1580 AM
10 am EST (7:00 am PST)
Nancy Derby, NFA board member, on Heaven Talk Radio: Your Urban Inspiration Station." Nancy will be the special guest on "Cross Talk-Urban Style" with host, Marsha Sumner, to talk about National Fibromyalgia Awareness Day.
Listen LIVE at http://www.heaven1580am.com/
 
Sunday, May 25
Discovery Health CME
8:00 am and 9:00 am EST
Discovery Health CME will feature a special segment on fibromyalgia, featuring Namita Gandhi, a member of the National Fibromyalgia Association's Leaders Against Pain Coalition. http://discoveryhealthcme.discovery.com/

[Carla]

As we all know the annual Fibromyalgia Awarenees event is coming up on May 12th 2003. I am asking that anyone who may not be able to make it to the ralley , take the time to visit the link below and forward the prewritten letters to your local newspaper and news affiliates. Also keep in mind to contact your congressmen and women. I have a link in my website that will help you find all the people who represent your state. This is a very important event each year and we are the ones who will make the difference for our futures. It only takes a couple minutes out of your day to copy and paste and note and forward it on. Just one letter is a huge importance to our community. Please take a minute to consider the end result if we all were to take sometime to do this. Can you imagine the impact??!
      Click the link below , it will take you directly where you need to be for this info . Also I am including a link to the site to find your government officials. Seek your heart and find the courage to write. It may be your letter that can be the one to make a difference! Thanks so very much for your time everyone...........
               BE WELL!
                Carl'a

http://fmaware.org/may12/may12_2003overview.htm

"Reprinted with permission of the National Fibromyalgia Association from their website, www.fmAware.org"

http://congress.org/congressorg/dbq/officials/?lvl=L

[Thomas]

It's almost here... Here's what some people are doing...
(from Our FM/CFS World, Inc. Newsletter)


Anne-Marie Vidal

No activity is too small to mark Fibromyalgia-CFIDS-Multiple Chemical Sensitivity or Gulf War Syndrome awareness in day. Although May 12, Florence Nightingale’s birthday, has been set aside as the specific awareness day, some groups use the entire month of May to celebrate awareness of these invisible disabilities. Activities can be as varied as talking to friends at Bingo, giving a poster or flyers to your doctor, or distributing brochures at a community or church meeting. Any level of activity you are comfortable with is encouraged, if you write letters, have your children write them with you. We asked a few people what they were doing for FMS-CFIDS-MCS Awareness here is what they had to say about advocacy and their plans.

Devin Starlanyl, MD a researcher, patient and author on Fibromyalgia has this to say about the power of patient promotion of awareness of FMS, CFIDS and MCS:

Advocacy

Knowledge is one of the most important tools of empowerment that an advocate has. It was part of my advocacy to find out that I had both fibromyalgia and chronic myofascial pain, that they were different, and that the difference was of critical importance to the quality of my health. I then had to educate my medical care team, or find others willing to be educated, and that was a form of advocacy. It was necessary to share my knowledge, because I could not endure the thought that there were others out there like me, but without the knowledge they needed to successfully advocate for themselves. Every time you educate one of your medical care team, your insurance company, or your friends, you advocate for others who come after you. Each challenge we face is a chance to educate, empowering us to make life a little bit easier for those who come after us.

Devin Starlanyl, MD
Devin Starlanyl
http://www.sover.net/~devstar

I have opportunity at one of the senior centers to speak on FM, chronic pain and pain management as a executive officer of the Pennsylvania Fibromyalgia Alliance and give a therapeutic pillow demonstration, and I am trying to set this up in conjunction with FM Awareness Day. We will also be giving out the brochure on FMS symptoms. We also will set up tables in front of CVS Health connections and give out the brochure and talk with people. Our Journey group meeting meets at this location. We also intend to set up at another major pharmacy.

Arlene Porter
Fibromyalgia Alliance of Pennsylvania

Proclamations have been submitted to the mayor Pollard of Methuen, MA. It has been approved and I will be meeting with her next week and will have my Picture taken with her that day! A proclamation was sent to Congressman Meehan and his secretary and I have been in contact regarding it. And a colleague will be contact Massachusetts Governor Mitt Romney .

On May 12th our Support Group will be at Anna Jacques Hospital (in Newburyport, Ma) to distribute ribbons, info packs with candies.

I have designed fliers for our support groups to hand out also and tomorrow I will be going to a course that is being held by Holy Family Hospital (PT) for Chronic Illness for Arthritis and Fibromyalgia--will bring fliers for May 12th Awareness and for our Support Groups in our area! I am going to contact Lawrence Eagle Tribune and see if they can cover May 12th at the hospital! When the weather gets better around here we will be moving to the outside areas!

Delores Kaplan
Methuen. MA

Hurrah! Ecological health Organization (ECHO) has received the CT. Governors Proclamation for MCS Awareness Week – May 4 – 10, 2003 for the sixth year in a row. We were also able
to have MCS Awareness Week noted on 2 additional web sites:

“2003 National Health Observances”
2003 NHO
http://www.healthfinder.gov/library/nho/nhoyear.asp

Earth Calendar
Earth Calendar
http://www.earthcalendar.net

Other activities for the week include Annual ECHO meeting with guest speaker and ECHO display at the Legislative Office Building. ECHO will also hold its annual meeting is set for May 7 at Its Only Natural with Joellen Lawson (Canary News) as our Guest Speaker. We will also have 3 displays at the Legislative Office Building with information about MCS, Pesticide Registry, and Pesticide Petition along with continuous videos on Tools for School, MCS, Gulf War Syndrome and Integrated Pest Management. Our MCS Brochures are being displayed at several Libraries in Fairfield County. We will also have a MCS exhibit at the CFIDS/FM Education Program on May 2, 2003.

Carolyn Wysocki, CT
ECHO

I Will continue to do all I can Will try to help clarify to the patient community
that the most important thing we can do as a group is to press forward to end the cover-up (of Chronic Fatigue and Immune Dysfunction.)

End the new names
end the new definitions
end the new unexplained syndromes
and get to work
on the cause and cures of this epidemic

Hoping for your support and help as we campaign ahead.


Quintero

In recognition of Awareness Day, the NFA, in conjunction with a local support group, is planning a Run/Walk for Awareness to be held on May 10, 2003 in Woodland Hills, CA. We also are encouraging FM survivors to request Proclamations declaring May 12 as Fibromyalgia Awareness Day in the city, county or state. People all across the country have requested proclamations which we have prepared for them and assisted them with press releases and planning for presentation. You can never have enough awareness! Our website also lists what other groups are doing both nationally and internationally.


Karin M. Amour, MBA
Secretary, Board of Directors
National Fibromyalgia Assn. (NFA)
NFA
http://www.fmaware.org

I am giving a ten minute speech in front of one my classes. I have a tender point chart and some literature to distribute to 40 people.


Angel
Torrance, CA

The Susquehanna Valley Fibromyalgia Awareness group is sponsoring an Awareness Day on May 3 at the Mount Joy Library. We will have doctors, lawyers, massage therapists and tai chi experts. Here in PA Fibromyalgia was a well kept secret. On May 3 it comes out of the closet!


Eileen,
PA

I will send out the book & pin to many of my treating clinics as well as specific docs, along with the pamphlet that Our World puts out. I have an added bonus this year of some beautiful flyers that were made for me to also distribute with my other literature. These refer people to our web site & message board for information & education as well as support.

I always send letters to all my representatives via E-mail. Additionally, I am donating the book, A Wish for Wings and Things to the local hospital that does have a children’s ward as well as FMS/CFIDS educational classes. It includes a copy of: The Dragon Grins; a copy of the: Just Imagine; several copies of Our World's pamphlet on FMS/CFIDS, which has the Web site on it, which links to the message board.

I also do a letter campaign to all my Reps, including Mr. Bush.

My current goal is to educate those treating us, so I send to my personal docs, clinics, hospitals etc, flyers, pamphlets and newer research papers. I will include, this year, as a hook, the pin of the dragon above mentioned items.

I sent a letter to my family this year, along with a copy of the book for the ones with little ones.
Also a copy of all above mentioned items.

Last year I was able to have the Mayor of Los Angeles declare it a LA Awareness day as well.


Jackie F
Van Nuys, CA

Reminder: If we don’t speak for ourselves and educate others regarding FMS, CFIDS and MCS who will? Until we use our voices to demand research leading to a cure, we will continue to be in isolated in our pain.

No Funds=No Research=No Cure
Information packets of posters, pins, proclamations to declare municipal or state FMS-CFIDS-MCS awareness Day can be obtained from:

The National Fibromyalgia Association
NFA
http:// www.fmaware.org

The National Fibromyalgia Network
NFN
http://www.fmnetnews.com

The CFIDS association of America
CFIDS Assoc. of America
http://www.cfids.org

[Thomas]

AWARENESS DAY - MAY 12TH
By: Anne-Marie Vidal,

Brochures are available for anyone interested in passing them out or including them in information to elected officials, or the medical community. To request yours, simply email Jan at Painpal48@aol.com.

Making plans for awareness

For patients not in organizations directing or suggesting activity advocacy is a real challenge. The patient has to overcome his or her energy limitations and decide how to work with in them. Deciding to become involved advocacy need not mean writing a long list of didactic letter describing Fibromyalgia or CFIDS but can focus on community activities.
Advocacy can take many forms and be around several issues:
Public education –
Public school accommodation for children with CFIDS or FMS
Understanding of the Diseases,
Quicker diagnoses,
More effective medical treatment
Research aimed at a cure,
Bigger research budget
Inclusion of patients with FMS and CFIDS in existing programs offering assistance to the disabled.

Patient advocates explain the symptoms of FMS and CFIDS and how it is often mistaken for depression or malingering. There are a variety of opportunities to speak and it can mean arranging to present information to community groups such as churches, clubs, hospital support groups, or any public forum available to you. You needn’t speak for more than 5 to 10 minutes if you are simply introducing the topic and bringing literature that people can look at later. Public education might also take place at picnics, barbecues or a table at street or county fairs. Special events are great if you have others to work with on them and share the planning and effort they involve.

If you organize a picnic or barbecue for FMS awareness have literature visible and available but away from the food. Indicate that while little research is going on and that is why advocacy and public education is so important.

What to say:
Who is affected,
Describe symptoms;
Hard to diagnoses,
Approximate statistics,
No racial or social prevalence

Activities:
Writing letters to elected officials, follow up for a visit;
Municipal letter ask for Proclamation but ask for public hearings, ask that doctors speak before the City council or local public health groups.

Why:
Advocacy empowers patients and allows them to go from a passive victim of their diseases to an active role of educator and organizer. Advocacy brings patients outside themselves, helping them to put their problems in the larger perspective of the effects of CFIDs and FMS on the US population.
Most of all it helps you feel good about yourself and that is important.
Picking a target:
After watching 100s of my colleagues and fellow patients write to every major television news and talk show host over the past 4 years, I do not find that prevailing upon TV show is an effective way for an individual to spend time. Unless the shows are local, and the hosts and/or producer are particularly known to you, I would save my energy for efforts that are more likely to bear fruit.

While it is true that 20/20 carried a segment on FMS two years ago, the NFA spent many months working on that project with them. Another notable television success, was the appearance of a dramatic segment on FMS on the Lifetime Channel Show Strong Medicine. This was likely successful because the campaign to get the show aired began with the very first show; the show was new and had not yet built a weekly audience. In other words, whether you are targeting the media or a politician, it is best to pick those that are vulnerable—fighting to be elected or reelected, looking for a health portion of their platform. A friend in need is most likely to be our friend in deed.

One of the most effective things you can begin planning for now is a meeting with elected officials –congressional and Senatorial on your home territory. Even if you go to Washington, DC, you are most likely to have to meet with aides, so by meeting them in their home offices, you may be able to take other patients or friends and relatives.

When you meet with them, Have some basic fact sheets and basic information by Devin Starlanyl, MD, Dr. Bennett, Dr. Teitelbaum. You want to concentrate on description of the disease and the fact that it is hard to treat, becoming increasingly more common, and extremely painful and debilitating. The severe pain has an overwhelming impact on the US economy as patients call in sick for work, cannot keep their jobs, or reduce their work schedules from full time to part time. Overall, the economic impact is in the tens of billions of dollars in lost productivity.

If you meet with a politician, municipal, state or federal, remember it is a business meeting. Treat it as such. Be prepared, be coherent, have notes if necessary.

Be on time.
Be dressed appropriately.
Be organized, do not be dropping handouts or searching for papers,
This is not a support group meeting so your personal story is of minimal interest. If you tell it; your visit may be diminished to one of favor seeking.

And never hesitate to ask fellow advocates for ideas