Well-Come!

Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Wednesday, January 6, 2010

2010 - The Beginning of the Quality of Life Decade for NEI Patients

Friends, 

The writings below now revised for you,is one that I sent today after learning of the passing of a fellow brother within our community. The e-mail was sent to the the leaders of the many organizations that embrace CFS or other neuroendocrineimmune disorders or illnesses, some politicians, and to some members of the Department of Health and Human Services.

Back in 2003 and later on 2004 on a conversation with several individuals I used the term "failure to thrive" which shocked some. I stated that our overall community (including physicians and researchers too) were in an environment that was not conducive to growth in the angles that are necessary for our community to thrive. For patients is the quality of life issue that are overbearing. For physicians is the lack of knowledge and science that can guide them to treat their NEI patients. For researchers is the lack of will from the government and other potential interested parties that results in dismay funding for CFS and other NEIDS. It is a chain reaction that creates such human pain and despair of great proportion.  

It was not until the sad news of the death of a fellow brother in illness, that I became aware of a blog titled "Failure to Thrive". Powerful words aren't they? 

http://toadlily-gamer.blogspot.com/2010/01/weve-lost-jack.html

I am deeply concerned that Jack's writings (of blessed memory) shared with us.. that he was not a "young one". He had lived a great life and yet because of his current circumstances, his spirit became broken and worse yet, his body lost the connection with his soul resulting in the loss of the will to live.  

Therefore I dare to ask the question: isn't  then CFS a mind,body, soul illness like any other severe and debilitating chronic illness that robs people of their quality of life and dignity?  Isn't CFS an illness that robs individuals of their humanity? As members of our community of suffering we need to be open for this discussion and to pursue a healthy debate that although CFS is not a psychiatric or mental health illness, it can certainly place individuals in this fragile realm, resulting in a forsaken reality that propels individuals to commit suicide. 

How many more losses will this community of suffering have to bear before we unite as 1 Voice, 1 Community, 1 Cause ? 

With some heavy heart, at least I see glimpses of potential hope. The WPI efforts with great potential being realized now. The NIH trying to replicate the XMRV virus using the same protocol, ME-CFS community.com, efforts underway in Europe to get an advocacy movement that is strong; the IACFS-ME conference in Canada, the CAA making research a priority, the NJ CFS Association, the Wisconsin CFS Association, the Vermont CFIDS Association ongoing medical student efforts, Phoenix Rising, Pro-Health, Facebook groups who are creating such an awareness to our cause that is awesome! And obviously our own efforts for the establishment of the NEI Center in New Jersey and in other satellite locations. 

But the bottom line, and there is always one, is found in 3 simple words: QUALITY OF LIFE - This decade starting in 2010, it should be the year for all of our organizationsto concentrate on this theme. From this day forward for the next 10 years, it should be the QUALITY OF LIFE DECADE FOR THE NEI COMMUNITY. It should be the decade to bring, enhance and create QUALITY OF LIFE for the individuals we all claim to represent. We must make this our main priority and you too the patient needs to be part of this monumental effort in whatever way you can.  

I wish you all a Happy Healthy and Prosperous New Year! 

Marly Silverman
In mourning for Jack DeLuca

P.S.:

Debbie Anderson sent me the address to where you can send your sympathy cards to:
Dennis Sabatino
1510 Sullivan Trail # B
Easton, PA 18040

3 comments:

Kati said...

Marly, thank ou so muhc for sharing this blogpast with us. "Failure to thrive" is certainly a very adequate term to explain a very serious situation for patients wtih ME/CFS.

Broken soul. Shattered hope. Failure to thrive. How long can a human being live in a failure to thrive conditions, wihtout validation, respect and support? My thoughts goes to Jack's family, and also this woman who left us before Christmas, because she also had a broken soul.

May 2010 be a turning point for all of us, may we be heard, understood, respected and HEALTHY.

Katieann said...

Thank you so very much Marly.

When connecting with the WPI facebook forums after their XMRV discovery, I was made aware of a youtube CFS feature (Which I am failing now at finding of course). There was a quote in it that struck me to the core. It literally sent a shock-wave through my heart. It summed up in a few words how I felt from the years of doctor neglect, demeaning strangers and some 'friends', and the so very mis-informed public at large. I am not sure I will be quoting completely accurately, but this is what I heard:

"You failed; now please just die."

Let me say that during the space every day that I can connect with the wonderful advocacy groups in facebook, fellow PWC's and their blogs, and the WPI facebook, the statement above pales, shrinks and has no power. If nothing else, the XMRV discovery brought me back into the arms of those who care. May we All regain our personal power through support and love, in this year of 2010 and beyond.

~ katieann

Katieann said...

The video I mentioned was from:

Luminescentfeelings

still can't find the exact youtube link though sorry. possibly here:

http://www.youtube.com/user/luminescentfeeling?feature=chclk