In the past year, P.A.N.D.O.R.A.'s Facebook page and our Twibe on Tweeter have been doing well because we have wonderful administrators helping us to stay in touch with members of our community.
I want to acknowledge a few from the U.S. today: Susan Cue-Sugman, Jill Serotta (who is taking a break for now) and Mary Ann Parker. These amazing ladies have spent hours posting relevant materials and responding to question that often pop up on our social sites.
I am grateful for their commitment and support of P.A.N.D.O.R.A. They are indeed Advocates Extraordinaire!
P.S.: Please note that in order to see the links for Sus and Jill you must log in to Facebook or sign up for it.
Monday, January 18, 2010
Monday, January 11, 2010
Make a Difference Monday Video by Mrchicity3
This was sent to me by a subscriber and friend of PANDORANET, our youtube.com page. The person along with her family who did the video and cooked the delicious soup are from South Florida. The Broward County homeless agency listed here is coincidentally one of the agencies many of our members have supported in the past with gifts of food for their pantry. Random Acts of Kindness and amazing acts of beauty. Thought this could lift you up.
Marly Silverman
Founder, P.A.N.D.O.R.A.
www.pandoranet.info
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
Here is PANDORA's latest newsletter. Share it with your friends on your Facebook page. If you are a blogger post the link in your blog too.
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
1Voice, 1Community, 1 Cause(TM)
Marly Silverman
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
1Voice, 1Community, 1 Cause(TM)
Marly Silverman
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
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
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