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The results of the Million Letter Campaign were not meager at all!  It aroused the troops within our advocacy community and it created the momentum to get things accomplished. The task was easy for patients to follow and they were simple and effective too.  Many more in the media are now fully aware of CFS and FM. I do believe the campaign reached most of its goals which was to raise awareness – symbolically in the beginning, but it is the first step moving on towards gathering enough community awareness to get the attention of our government representatives.

Concurrently with what the Million Letter Campaign was trying to do, P.A.N.D.O.R.A., (please note that our letter writing campaign to Congress never stops, every day is CFS/FM Lobby Day!)  and other organizations – The CFIDS Organization of America, (with their new advocacy action center), the NFA and many other state organizations mobilized a letter campaign to our congressmen and to the Secretary of Health – (DHHS) who was also included in the MLC.  Unfortunately, his name was included at the bottom of the less predominant list and you placed below him our congressional representatives.  For the Canadians you did include their health minister second on their list.

In my humble opinion, his name should had replaced the name of Laura Bush or be the number one name on the MLC list.   I say this, simply because the main job of the Secretary of Health is to ensure congressional health policies are enacted. His department oversees the welfare of the public and it ensures these policies are followed and implemented.  Although, Laura Bush has a great degree of influence, has a great heart and compassion for others. This cause is not one she is embracing as the First Lady. In addition she is not a policy shaker (she could be), at least not upfront. It is not her “job”, nor is her style. I saw that some folks who participated in the campaign received feedback from NIAMS, their congressman, the Vice-President’s office, from television producers, (Pattie was contacted, etc.) But I did not see a response from the number one person in your list…did you ever receive a reply from Laura Bush’s office? [FROM DOMINIE:  No, we did not.]

As we all know, public health is big business and it is now one of the major issues driving and even influencing citizens to vote favoring one or another politician in the state or federal level. Even the post of the Presidency is now influenced by this issue.  I sincerely believe the time is ripe for our neuroendocrineimmune disorders community to use our political clout and power. For far too long we have underestimated such clout. Many of us merely thinking because we are disabled and we can’t work; or feel like we are not contributing to society; or we may have state assistance or we have to rely on our families and friends, that we don’t count. Well, we certainly do!  Disability does not have to mean helplessness!

From these advocacy efforts (yours included), literally thousands of letters were written to the NIH, as reported by Dr. Eleanor Hannah from the NIH Office of Research on Women’s Health on Sept 12, 2005 CFSAC meeting at the Department of Health and Human Services that I attended. She stated that the NIH (and the DHHS as well) received thousands of letters from advocates complaining about their lack of funding for CFS. To really drive this home, they also received at least 15 letters from congressmen concerned about lack of research funding and these letters specifically included the 11 recommendations the CFSAC (Chronic Fatigue Syndrome Advisory Committee – http://www.hhs.gov/advcomcfs/sept_meeting_min.html) listed to then Secretary Thompson, now Secretary Leavitt. Although we haven’t received a formal response from the Secretary’s office, the feedback is that they will move to follow the recommendations. I am including two of the letters as attachments to you. They are “shell” letters and they are specific for CFS.  I am sure you are aware of them. I also attached copies of one of Rebecca Artman’s presentations and one of mine to the CFSAC in 2005. 

It will be at least another 4 months as the next CFSAC mtg is scheduled for Jan 2006 to hear of any possible results, mind you that 6 members of the committee are due to leave on Sept 29, 2005 and they are now selecting new ones. It will take from 2-4 months for these committee to review nominations, recommendations to be made to the Secretary of Health, background checking be conducted and then names be appointed. I called the attention of the committee that change in guard should not prevent them from continuing the work as the committee members who are due to leave can have their term extended to 180 days or actually be re-appointed for another term. P.A.N.D.O.R.A. and many other organizations united in the selection/appointment of many outstanding names for the committee. We are waiting to see what it will happen. Names will be announced in the next two months or so.

The media does a great job to expose deficiencies in the health/medical system, but it can’t follow up or keep with the pressure to move the cause to implementation, there is always something new or more exciting to report. As advocates need to own the fact that it if affects us, we need to take charge.  We need now to move the effort to the legislature. Folks need to write to their congressmen (federal and state), visit their offices and follow up on the issues. For every victory on the legislative side it literary takes from to 2-5 years of hard work, money and personal resources to succeed. It is all about baby steps and more than anyone else, we know what baby steps entail.

My long e-mail to you and to Pattie has obviously some specific purpose other than make you read it. Here it is:

1.     First,  to thank you both,  for your dedication to our cause and to let you know that although you may be feeling or experiencing some disappointment on your part, it should not take anything way from the hard work and focus you both presented during the Million Letter Campaign. The results were awesome!  Folks talked about the campaign, favorable opinions were shared by the thousands of folks who answered your call to action, families united behind a sick member, employers became aware of the consequences of lack of medical treatment, CFS/FM patients felt that they were not alone, in churches, synagogues and in places of worship folks were discussing the MLC.

2.     My hope was to provide you with a little insight and humble feedback about the amazing efforts of the MLC.  I am always fine tuning and evaluating P.A.N.D.O.R.A.’s efforts. Not only because of my lack of experience in some items, but also because the goal is to get it right, hoping to learn from my mistakes.  One thing I learned is that on the course of our lives, sometimes we are teachers, sometimes we are students.

3.     If you are going to do the campaign again in the future, one suggestion I have for you is to contact some of the organizations who are already involved in similar letter writing campaign and coordinate the efforts so your efforts and their efforts will bring additional punch and results that you will feel are more tangible.  I am sure some if not most of these organizations will respond to you quite favorably. I can assure P.A.N.D.O.R.A. will be there for you if all possible.

As a neuroendocrineimmune disorder patient and as the founder of PA.N.D.O.R.A, I hope to continue to work with you and will always be grateful to you and to Pattie for the dedication you demonstrate to our cause. The world is a much better place simply because you and Pattie are part of our lives."

In Good Health and In Beauty,

Marly (Marla) C. Silverman

Founder, P.A.N.D.O.R.A., Inc - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy - www.pandoranet.info  

Volunteer help line 954-783-6771 Fax 954-785-9718

Built on Hope - Strong on Advocacy - Finding a cure through Research

 

"If you and Pattie were able to deliver such a fabulous advocacy movement while dealing with the kind of personal and health issues you mentioned in your reply [Pattie had major surgery and ice storms requiring evacuation, and Dominie's father was dying], then my gratitude (and my amazement) to you is even more endearing. My heart reaches out to you and to Pattie. From what I saw of the MLC, you had an amazing group of people behind you. Feel free to print my words of gratitude to you and my observations." 

 

 

 

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