My Idea on Pepsi Refresh Has Been Randomly Selected-Two More Steps to Go

Click on the link here to find out more

I recently entered another idea on Pepsi Refresh, which I was informed it made through the random selection, meaning that it has met the basic guidelines of the project and it has made through the first step of the charity Pepsi Refresh Project. I sincerely believe the idea is feasible and it will enhance quality of life for many in the NeuroEndocrineImmune diseases community.


The idea is already gathering support from patients, my friends, my family and many patient advocates colleagues, all who are rooting for my idea to move to the next phase: to be posted for public voting. The idea also has the support of PANDORA, of Rocky Mountain CFS and FM Association, CFS Solutions of West Michigan, Phoenix Rising, CFSKnowledgecenter.com for now. As we share the effort with other organizations we hope they will help promote it too. 


Meanwhile, there are a few things in which I could use your help and support. It will take no more than 5 minutes of  of your time. Please go to this web page and choose whatever way you can make your own contribution to promote the idea in deriving community support so my idea can be deemed feasible leading to its successful implementation. 


I also take this opportunity to encourage others to submit their own ideas, which can also benefit the NeuroEndocrineImmune Diseases community to this worthwhile project by Pepsi. It is a great opportunity to create awareness, generate buzz for our community concerns and mostly important to the plight of individuals stricken with these disabling, debilitating and devastating, sometimes fatal diseases. 


Thank you for all that you do. 


P.S.: Check out the new revised international version of the winning PSA (public service announcement) video from ME/CFS Worldwide Patient Alliance on PANDORATV youtube channel. 

  

Question from Anonymous dated February 9, 2011

A reply to Anonymous e-mail, dated February 9, 2011,

Dear Anonymous,

You sent me the following e-mail below:

“You wrote:  “...that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished..."

I agree that civility and courtesy, etc, are good things and an ideal worth striving for. But I wonder: just how would you go about PUNISHING someone for behavior that YOU don't like?”

First of all let me qualify something important. When you state “You don’t like”, addressing it to me, I need to state that raising the issues of civility, respect and courtesy, are not based in the “like” or “don’t like” capricious category such as “I like chocolate ice-cream” and “I don’t like vanilla ice-cream”. That is not what I said, nor it should be implied. It is much more profound. I hope you understand that too.

Therefore here is my answer: I will not remain silent. I will encourage others not to remain silent. One good example is in the blog “For every naysayer complaining of an organization, point to something good these organizations have done. Do not be silent! One does not have to engage in a heated exchange, one can just say what it comes from the heart. At the end of the day the same rights one individual has in order to state a hateful position applies to a kind one too. Why are we so afraid to confront the tone of these voices?

Let me be clear, I am not advocating preventing someone from expressing what he or she feels; I am only expressing concern over the delivery of the message. The reality is that until someone walks in someone else shoes, (by the way the name of PANDORA’s official walkathon is “WalkInMyShoes™) one cannot 100% express that he or she is the absolute holder of the truth. It works both ways! It is also accepted by reasonable people that patients who diminish one organization over another are doing a disservice to the overall cause. As a patient I take umbrage on these types of approaches. As a patient I have to stand up and question one’s motives.”

The message is our community needs to be stronger and unified. We need solidarity. We do not all have to march identically and to the same beat, but the core of our (NEIDs) community standards, interests, values and objectives must be embraced collectively. When we do, meaningful change will come successfully. The time is now. 

Anonymous, I appreciate your question. Thank you.

I CANNOT IMAGINE OUR OVERALL COMMUNITY WITHOUT SOMEONE LIKE YOU

by Marly Silverman

I haven’t been blogging lately. Because of the time, stamina and physical efforts allocated for personal medical issues, it is not a priority for me.  I do admire those who can do blog and share their voice. It is a special gift that they have indeed.

As I recently laid in bed trying to recoup from a trip the CFS Advisory Committee and to the New Jersey CFS Association Fall Conference, I wondered whether what I do really matters. Does it create change? Does it make a difference? Does it have an impact on quality of life of the chronic ill?

As I had this fleeting moment of self-pity, I reminded myself of how lucky I truly am to be part of our overall patient advocacy Community for NeuroEndocrineImmune disorders (NEIDs). I realized that it was quite illogical to think otherwise.

I simply cannot image our overall Community without someone like you, the reader, somewhere within the U.S. or living in another foreign land.  You could either be a patient with daily struggles or a caregiver wondering whether you will be strong enough to be there for your loved one, another single day.

The thing is, that whoever and wherever you are, you truly matter to me and to the organization for which I volunteer, as often as I am able and possibly can. Although I am extremely optimistic about the opportunities that are present in the current advocacy arena for individuals with NEIDs,  I am concerned that things are getting a little out of hand in the forums I have recently visited and on the types of posts I have been forwarded lately. I am concerned that the unity among the many voices remains fragile. I am afraid that the agreement in the core issues we so badly need to remain united, are being fractured. I am concerned that because of the anonymity of the Internet, individuals may feel a false entitlement to nastiness and use the Internet as a vehicle to sheer bitterness that is counterproductive and hurtful.

I don’t expect, and would not want, everyone to be identical in the manner through which we advocate for the overall Cause. We need the different points of view, the life experiences, and the personal insight and wisdom that individuals bring and come from our overall diversity; however, I certainly have concerns about the ongoing tone I see, read about, and find are being expressed in some of the patient forums.

Although I cannot even begin to explain why this is happening and cannot control individual behavior, I do see the sad results. I am sure I am not the only one. If you agree with me, then join me in speaking up but do it with respect and kindness. 

At the core of these disagreements are lack of trust coupled with a sense of rage that can be quite unproductive and destructive toward others advocate colleagues. It does not surprise me that it is often self-destructive too.   

Anger is needed and required for individuals in order to create change and make a difference; however, rage is not. Although anger directs us towards strong advocacy and making noise and pushes us to take ownership of our present and future, rage does not accomplish the same effect, reaction, and results. Anger is the first step towards empowerment. Rage, on the other hand, does not provide the balance and acuity that is needed for noble actions. In a moment of rage, as history teaches us, individuals engage in behavior that can kill, maim, destroy, and inspire others to commit horrible crimes against humanity. Over and over we see this kind of behavior in the news, in schools, at the work environment, in politics and often and unfortunately in many homes across the world.

Not a day goes by without us being exposed to rage depicted on Youtube.com for the whole word to see. It is at those times, we all wonder about civility, kindness and personal responsibility.

When rage is directed toward a fellow patient advocate in a manner that generates controversy, hurt, misunderstanding, and distrust, the reality is that we all lose the collective strength we need to fight the good battles and to win the main prize: quality of life for every patient stricken with a NeuroEndocrineImmune illness. When one of us unkindly knock down someone’s effort, and for whatever righteous reason, we all become weaker in our collective efforts. When rage happens or is manifested toward another fragile human being, we all feel the pain, simply because we are a Village, so to speak. 

Why does this continue to happen? Have we not matured as a patient advocacy community enough to learn from past mistakes? Why do we keep repeating them over and over?

I cannot imagine our Community without individuals like Tom Hennessy, Jr., and the “elders” or pioneers of our advocacy community, such as Mary Schweitzer.  Can you imagine our community now without Cort Johnson, Hillary Johnson, Christophe Cairns, and Khaily Castle? How about John Herd?

How about a Community without Drs. Kenneth Friedman, Judy Mikovits, Lenny Jason, Dan Peterson, Paul Chenney, Ben Natelson, and Nancy Klimas? How about Dr. Dharam Ablashi and Rosemay Underhill? Without the scientific and medical work that they have and continue to provide us, where would we be today?

How about Jennifer Spotila, Brian Smith, Kim McCleary, and Dr. Suzanne Vernon? Can we truly imagine our Community without them? I cannot.

I cannot imagine our overall community without Sandi Lanford, Veny W. Musum, Carol Fish, Steven Krafchick, Jason Newfield, Mary Ann Parker, Brad Ellis, Sharon Stapleton, Kathryn Stephens, and Karen Ravitz, and so many more. These individuals are cut of a different mold and are making a difference every day using their professional and personal skills. They sacrifice their personal lives to speak up for you and for me.

How about a Community without Bob Miller, Patricia Carter, Rivka, Mike Dessin, Ruth R., Sita Harrison, and Andrea Martell? How about Jill Justiss, Rik Carlson, Rich Carson, Jo Best, Barbara Stafford, Tessie Tess, and Lydia Neilson? How about our community without Daniel Moricoli, Paula Hayward, and Franky Nolan?  How about the strong voices of Kathryn Stephens, Sharon Stapleton, Betty McConnel, and Pat LaRosa? How about the kindness, concerns and creativity of Keith Baker, Frank Opp deBeck, Jerry Rice, and Peter Benko? How about the persistence of Susan Cue-Sagman and  Donna Boyer? How about the professionalism and dedication of aCeleste Cooper, Dorothy Wall, Yvonne Keeny, Sharon Ferber, Sharon Ostalecki, Sabrina Johnson, Mary Bennett, Pam Bennett, and Lynne Matallana?  I am on a roll… and I could go on for pages.

These individuals are all from different backgrounds, gender, countries, and life experiences, yet they all share the same goal—quality of life for individuals stricken with NeuroEndocrineImmune illnesses. Each one contributes in their very own special way to our overall Community.

In my Community, I cannot imagine not having the friendship and collaboration of Lynn Bousquet, Sebastian Chico, Andrea Pring, Yvette Taylor, and Tina Tidmore. In my Community, I cannot imagine not having the friendship, support, and the example of great personal courage and conviction of Annette Whittemore, Lisa Baldwin, Jill McLaughlin, Barbara Soliday, Etel Barborka, Denise Lopez-Majano and Patricia Fero, mothers of children with CFS-ME and fibromyalgia who stand up to the status quo and with their influence, tenacity, and resilience have moved mountains, each in their own special way.

In my Community I cannot imagine not having the support and caring friendship of Bonnie Meyers, Teresa Reid, Pat Mayer, Ellen B., Kathy Kohler, and all of the founding board members of P.A.N.D.O.R.A.  I simply cannot imagine where I would be without P.A.N.D.O.R.A.‘s past and current board members, community advisors, and Advocates Extraordinaire™. How about Rebecca Artman, who is my twin CFS sister; as well as George Viňa, Jenny Torres, Dr. Lina Garcia, David Adonailo, Karen Sacks, Mike Dessin Connie Borschel and Bonnie Thornber? I cannot imagine my world without them.

I cannot imagine...not having the support of all my Facebook advocate colleagues, all 717 of them, plus all the supporters of P.A.N.D.O.R.A. and of our overall efforts.  I regret not being able to list every one here. If you are interested in knowing who they are, just go to my Facebook page. 

Lastly, I cannot imagine...not having the love of my family and friends and the love and caring concern of my husband Stephen, and of my son Lawrence.

Can you really imagine our Community missing ANY one of these individuals?  I cannot. Neither should you.

If you think otherwise, you are free of course, to express yourself, but I sincerely ask you to please make your point kindly and don’t beat me up for having the courage to speak up on these touching and difficult issues. I can no longer remain silence. The time is now. Let us ACT NOW!  AND AS

One Voice, One Community, One Cause™

P.S. As we will be celebrating Thanksgiving in the U.S. soon, I think it is now more than ever fitting to be thankful and grateful for what we have, and to work together for WHAT WE NEED.

CHASE COMMUNITY GIVING-1 Day Left to VOTE for P.A.N.D.O.R.A. to Remain in the top 200 charity list

REMINDER: PANDORA IS THE ONLY ORGANIZATION EMBRACING CFS-ME, FIBROMYALGIA, MCS-EI, LYME DISEASE, GWS ONTHE TOP 200-CHASE COMMUNITY GIVING

Dear Friends, 
Patient Alliance for Neuroendocrineimmune... Disorders Organization for Research & Advocacy, Inc. (this is how you have to search for us if you need.) DBA as P.A.N.D.O.R.A., the charity I founded,  is holding a very good ranking on Chase Community Giving. We are the only organization from within our overall Neuroendocrineimmune Disorders (NEIDs) Community that has made to the top 200 ranking now at number 140  with 1,1303 votes. You can vote for us at http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

We have accomplished this amazing task with the support of individuals like Frank OpDeBeeck,who created a tutorial video to get us on the top 200 and many more, including Phil Campos, who produced the video for the contest, Andrea Martell, Rik Carlson, Sus Cue-Sagman, Michelle Lonchar, Gaston Gingues, Andrea Pring, Pat LaRosa, Cort Johnson, Blair Miller, Betty McConnel, Sandi Lanford, Ashely VanTol, Martina M Punktchen, Claire Randall, Nancy K Jay, Thomas Hennessey, Keith Baker, Lisa Baldwin, and so many more. You know who you are and we are grateful to you all!

We are also grateful to our board members on Facebook who are asking their friends to vote  and to the National Fibromyalgia Association, The CFIDS Association and the Whittemore Peterson Institute for posting on their Facebook pages asking their fans to vote for P.A.N.D.O.R.A. too.

BUT if we do not get a significant spike on the number of daily votes for our organization between now and July 12, the day the contest ends, we will lose the opportunity to receive a grant in the amount of $20,000.00. While for some of the larger organizations this may be a drop in the bucket, for us it is 95% of an entire year's budget. It is priceless!

Look at what we can do with $20,000.00:
1) Pay our phones, web site hosting, newsletters costs for 2010. Get a new computer that can handle new technology specifically for non-profits including a new efficient donor data base.
2) Continuing to position our organization and our strategical partners, so we can move on with our main project: The establishment of the NEI Center(TM), in New Jersey. It will take time and money to get this off the ground. http://www.neicenter.com/calltoaction.htm
3) Get a new technologically updated web site that will continue to inform you and share what we do best.
4) Hire a part-time person to help us in the office to respond to an ever growing number of inquiries & assistance for individuals stricken with NEIDS.
5) Travel to DC to represent you at the CFSAC meetings, Pain Medical Conferences and at the IACFS-ME conference in Ottawa next year.
6) Collaborate with other organizations through our micro-grants for medical students, educational conferences and advocacy/lobbying efforts in the U.S. and abroad.
7) Expand the Quality of Life Advocate Program: Patient Advocates helping others and "paying forward".
8) Expand the Advocate Extraordinaire Program for PANDORA - http://www.neicenter.com/advocatesextraordinaire.htmand the NEI Center(TM) - http://www.neicenter.com/advocatesextraordinaire.htm
9) Cost of educational brochures (art work, printing and mailing)
10) Support of empowerment groups in Florida and beyond.
11) Provide support to parents with children stricken with NEIDs.
12) Create PSAs for the illnesses we embrace and expand PANDORATV on youtube.com - http://www.youtube.com/user/pandoranet and http://www.youtube.com/user/lymenaide
13) Strengthen our national and international advocacy and grass-roots initiatives.

These efforts combined with a Chase Community Giving grant will strengthen an organization that is patient-driven and physician approved.

Please vote today for Patient Alliance for Neuroendocrineimmune...(DBA) P.A.N.D.O.R.A. http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

if you haven't voted yet, we will run the risk of losing our current rankings and end up with NOTHING. You would not want this to happen... would you?

Often I hear that no one cares about our community. That the lack of respect, lack of money for research & patient treatment, and lack of awareness for the plight of millions is the norm. Well, here with Chase Community Giving we have the PERFECT OPPORTUNITY to get all of the 3 major concerns we all have in one swoop. As a matter of fact with the number of individuals stricken with CFS-ME and fibromyalgia, our organization could have been on the top 5, competing for the $250,000.00 and $100,000.00 grants.

Make sure you Vote for PANDORA NOW - today and for the other organizations that too share a similar mission with us. We cannot afford to miss this wonderful opportunity. If we are able to get another 5 or more orgs on the top 200, we are speaking of a cash injection in our advocacy movement of at least $120,000.00. To see the list of the organizations suggested by advocates go to http://www.facebook.com/notes/pandora-inc-patient-alliance-for-neuroendocrineimmune-disorders-organization-for/cast-your-vote-for-patient-allliancepandora-and-forthe-organizations-that-embrac/134208223265717

Here is the link again: http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

Thank you for your support! We can win this grant! All we need is your vote.


In Good Health and In Beauty,
Marly Silverman, Founder, P.A.N.D.O.R.A. - www.pandoranet.info
Co-founder: The NEI Center(tm) - www.neicenter.com

IT IS TIME FOR CHANGE - Part III

For two and half decades the CDC direction regarding the CFS research program, which includes prevention, course of treatment, medical provider education and public information has been controversial, divisive and spotty at best.

P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc, a charitable (501 c 3) organization advocating for the chronically ill and an organization that I support, is launching a nationwide & international advocacy alliance with strategical partners around the world, for the main purpose for the establishment of Neuroendocrineimmune Disorders Research Centers in the U.S. and overseas. This is the first poll of a proposed 10 single poll questions. If you have not participate please do it now.

Click here or cut and past the link below in your browser to answer the single poll question:
http://survey.constantcontact.com/poll/a07e2j0j8jpfvjw46k4/start.html

P.A.N.D.O.R.A. along with the strategical partners' alliance will then take the answer results to the CDC, to Congress, to the National Institute of Health (NIH), to the Social Security Administration, to the Department of Health and Human Services (DHHS) officials and other interested parties. So please join me, and our voices will be stronger.

ONE VOICE, ONE COMMUNITY, ONE CAUSE!

NOTE: Here in my blog there is also another single poll question that I ask everyone to participate. P.A.N.D.O.R.A. will be taking the answers to the legislators in the state of New Jersey as we address the overlapping of neuroendocrineimmune disorders and its relations to other chronic emerging illnesses.


IT IS TIME FOR CHANGE!...to be continued

Health Care Reform and the NEIDs (Neuroendocrineimmune Disorders) Community

Professor Neil H. Buchanan, a Tax Law Professor has written a very interesting article on healthcare rationing. He brings forward not only a logical response to the "rationing issue" being pushed by strident opponents of the "Public Option". He provides a very good explanation of the concept of rationing. His article brings light to the overall concerns that we as a society need to look closely: How to implement a just and fair health care accessibility to all Americans, despite social and class demographics?

Just like in the criminal justice system there seems to be two systems on healthcare: one for the rich, and one for the poor or middle class. The goal of current healthcare reform is to attempt to bridge this gap between gender, age, and ethnic disparities and of course among social classes.

Rationing is already part of the health care "free market enterprise" as we have now. The basic difference between what we have now and what health care reform will attempt to change is that currently there is no transparency in our health care system. The public (consumers of health care insurance programs) do not have access to the rule of the game, i.e.: how insurance companies really choose what services to provide to consumers and how these choices are really marketed or offered to the consumers, leaving several important questions unanswered: Are we getting a fair price for the services we are getting? Are the services we are getting now what we really need or want? What is wrong with injecting a bit of competition in the market? Isn’t competition that makes any market to thrive?

Some will debate that when government interferes in the market, it is no longer a free market. But isn’t our government founded in the principles that our “government is of the people, by the people, for the people”…(Abraham Lincoln)

I should point out that rationing has been a part of the picture in political & economic societies, from the least sophisticated to the most industrialized ones. Sadly it has occurred within the neuroendocrineimmune disorders community for far too long. Even before the issue of our national economical crisis came to light, our community has experienced deep personal, professional and financial hardship way before this national recession came to place. This is a fact! It is as well an an issue of quality of life that I have advocated over the years. Most of the advocates within our community understand this concept already. Recently on one of his posts, John Herd shared his take on these important issues too.

The fact that now a much larger number of Americans are now facing the same issues the NEIDs community has been facing for years, brings a whole new take on the situation by the powers to be in government and political science fields. The hardships that health care reform is trying to address, mirror the lack of accessibility to medical care, which includes not enough willing treating physicians in the NEIDs field; loss of employment which leads to lacking accessibility to private or employer medical insurance. These medical and financial challenges have been a part of life for just about every NEIDs individual whom I have spoken since I became an advocate. Health Care reform is a prime opportunity for these deficiencies in the social, disability and healthcare system to be addressed in a way that will benefit our community of suffering.

Here is Tax Prof Neil Buchanan (George Washington), inaugural column: Rationing Health Care: We Have Always Done It, We Do It Now, and We Always Will:
"As the debate over health care reform has become increasingly degraded over the past few weeks, one of the claims that has been treated as a serious complaint about the Democrats' plans -- unlike, say, the claim that the plans include "death panels" -- has been the assertion that their proposals will result in the rationing of health care. ...
The bottom line? There is not, has never been, and can never be, enough medical care to cover everyone in every situation. Rationing is a fact of life. Current health care proposals in Congress would change the rules for rationing, bring them into the light, and create accountability for the decision makers. If we do not adopt those proposals, we will go back to the chaotic form of rationing that has been killing far too many of us for far too long."

Buchanan Named Featured Columnist at FindLaw

I look forward to reading your comments and feedback.