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).

Friday, December 18, 2009

Community, Collaboration, Unity can drive worthwhile solutions for CFS-ME Patients & Other Neuroendocrineimmune Illnesses

I am posting a reply that I provided earlier to one of my blogs at me-cfscommunity.com (PANDORA's Follow up Letter to the U.S. Secretary of Health - Need your number one request/input NOW). Because of technical difficulties (and or operator error) my corrections did not come through in the page layout. In order not to lose what I wrote I had to redo it and in the process I realized that my response should be in a blog format, which I also did on my blog OneAgentforChange, but due to health challenges could not publish promptly,

Now, once again I am bed-bound with a CFS-ME relapse coupled with a head cold that is making me miserable, because I know I could be spending time with my son Lawrence today going over my mother Zuzu,(of blessed memory) belongings and shooting the breeze and probably arguing about national and international politics. It has become a "family tradition" but one that can be annoying at times, partially because as a mother, I will have the urge to pull rank.

But I am digressing, and I need to go back to the reasons why you are reading this blog post now and they have plenty to do with the title above.

The conversation or reply ensued out of PANDORA’s request for ONE single request/suggestion that patients could provide to PANDORA for a follow-up letter to the U.S. Secretary of Health regarding the plight of our community of suffering. Here is then the revised response from me:

“Khaly's comment/suggested request is one that ALL of the organizations advocating for CFS-ME have requested in one form or the other for quite sometime. The overall vote of confidence in the U.S. Government ability to do the "right thing" sunk to its lowest ever. In my last testimony to the CFSAC Oct 29-30-2009 testimony.pdf, I suggested the incorporation of the 3R's - Reconciliation, Restore and Resolve in the future approach of government health agencies on CFS-ME specially after the XMRV virus findings. The patient community is an instrumental part of this process too. We need to keep the pressure on the U.S. Government to work toward solutions.

Roy's comment hits the jackpot. But PANDORA wants more. We want the Department of Health and Human Services, not just the NIH, to ensure that LARGE grants are disbursed. We want an embracement from the top of our government the acknowledgment that they are paying attention. No more hand-outs that are piece meal and are not targeting the huge task CFS-ME (and other NEI illnesses represent). It is the key that is missing in the whole picture.

We know for a fact that there is a huge disconnect in Academia halls in the U.S. (large and small medical colleges) that completely disregard NEI illnesses. We have witnessed that year after year. The professional disregard for NEI Researchers in their own college campuses. The disregard for our national community's plight in the cities and states where these academic institutions are located. In Dr. Ken Friedman's video, his long- successful career as a medical professor is being jeopardized because his superiors are not keen on the issues. Unfortunately, this pattern of disregard and consideration towards fellow college professors and researchers who are teaching and or researching on NEI illnesses have been a huge stumble on the science side. It reflects harshly in the patient community. It is the reason why patient's quality of life suffers and we languish. Many of us are survivors, but we are not thriving and leading well deserved productive lives.

I say no more! We need to collectively communicate to academia that they too are responsible for the scientific push for NEI illnesses. No more hiding behind the fact that research grants are not coming down the pipeline because of health government officials. The officials who are serving now in our government have led careers and or were trained in the same academic halls that we have found no solace or embracement. If the prestigious universities with medical and research centers do not entice, teach, educate and make it part of their curriculum NEI illnesses as a must have, do you think that the NIH, CDC or others will out of the goodness of their structure take the initiative?

As far as our community, I think it is healthy to have respectful disagreements among patient of all background and personal experience. It is the diversity of our backgrounds that fuel the debate and the conversations. But we need to be UNITED as an ENTIRE community. I mean every single organization large or small, perfect or imperfect, so our UNITED VOICES can be heard by concentrating on the issues that WE ALL AGREE!

As the founder of PANDORA I have some personal experience on the difficulty of managing a non- profit advocating for the HUGE NEEDS of our community. It is a HUGE task followed by the lack of HUGE FINANCIAL RESOURCES that lead us to MISSING OPPORTUNITIES, which would have provided better results had we the capability to seek, participate or simply identify these opportunities. The reality is that NO SINGLE ORGANIZATION can do it all. We the individuals representing patient's organizations need to be humbled of this simple fact, and yet we need to maintain a motivation factor- i.e. a certain amount of pride for the work that we do. If we don't share it with you, with potential benefactors and with our health agencies our successes, we are not doing part of the job and part of our mission.

This is a HUGE country with geographical, regional culture, diversity and political ideologies that all combined make it even more difficulty to tackle the hurdles we have in our community of suffering. Simply put, and as I see it, PANDORA's weaknesses as an organization is complemented by other organizations strengths. I can share several good example with you: The New Jersey CFS Association sponsored the first and only CFS-ME Physician's Consensus Manual (a project of Dr. Kenneth Friedman and Dr. Oleske and many others). PANDORA realized the importance of the manual and we provided a grant to another organization in Spain- the Fundacion... and the collaboration of Dr. Ferran J. Garcia Fructuoso brilliantly translated by Cathy Van Riel, a colleague patient advocate from Spain.

The grant we gave for a medical student scholarship to the Vermont CFIDS Association is a milestone for the work the association has been done over the years.

We also provided a scholarship to a student diagnosed with any of the NEI illnesses that we embrace at DePaul University – Chronic Illness Initiative

In 2009, we provided a grant to Dr. Gordon Broderick's work in Canada, which will complement the grant he has received from the CFIDS Association (CAA).

Another good example of the other way around: The CAA about two years ago provided us with a grant so we could have a booth at a large women’s business conference in Tampa. It was a huge success! On the day of the conference I met with the mayor of Tampa and I met with the President of the University of South Florida – Dr. Judy Genshaft leading to a constructive conversation about NEI illnesses. Our booth was one of the busiest ones in the conference hall!

Other great examples: PANDORA and the Wisconsin CFS Association have been providing support to a family in Buncombe County, North Carolina dealing with the issue of Factitious Disorder by Proxy leading to 23 other organizations and hard core advocates signing off on the letter we sent to the Governor of North Carolina. PANDORA's strategical partnership with ME-CFScommunity.com: we are all benefiting from this endeavor. Our collaboration with the IACFS-ME for the presentation of one of their outstanding (raising the bar considerably) conferences in 2007 leading to an even better one in Reno, Nevada in 2008. In 2008 we provided a grant to the IACFS-ME Association honoring Dr. Nancy Klimas which in turn was used to honor two upcoming Junior Researchers on CFS one being Dr. John Chia.

Dr. Nancy Klimas this year donated a one hour consultation for our organization to auction off on E-Bay. The auction provided us with a wonderful donation to our bank account. She also donated her time for a lecture on XMRV virus that we sponsored in partnership with me-cfscommunity.com and the local empowerment support groups.

Across the country, I often hear of treating physicians and researchers collaborating with the local organizations catering to our community. Dr. Kenneth Friedman is one individual who has actually broken the record in community involvement. All you have to do is Google his name and pages of information reflects his involvement in the IACFS-ME, PANDORA, Vermont CFIDS Association, Wisconsin CFS-ME Association, CFSAC and much more.

More recently, the strategical partnership with the Lanford Foundation-Lifelyme™, for the special project- The NEI Center(tm), in New Jersey, which is leading to other important collaborative initiatives in New Jersey and beyond.

For the past two years, If my mind does not fail me, PANDORA has advertised in the conference's booklets sponsored by the New Jersey CFS Association. In turn this year, they provided us a donation grant for our work on Advocacy.

PANDORA in addition has provided donations to the ME Association in the UK as well as to the National Fibromyalgia Association and the CAA for their Advocacy work. Strategic collaboration with the American Pain Foundation created a huge training base for advocates across the country for several organizations fighting on your behalf on pain issues.

So what is the underlining message that I want to share with you? Is that as patients, as researchers and physicians, as organizations, and as government officials, we need to stop the finger-pointing and substitute it for constructive criticism. We need to give until it hurts to the several causes that are pushing for major changes in the areas that are meaningful to you individually, as well as for the overall community. We need to do so, WITHOUT diminishing the work of others. As the representative of an non-profit organization, I need to continue to think outside of the box, and if we know of an organization that can do the task that PANDORA does not have, or the skills or personnel to do it, we will collaborate with them with great pride wishing for their continuing success.

We need to continue to debate, but without name calling and lack of respect. Yes, be angry, be vocal, but let's channel the anger to constructive and positive initiatives. Calling for the take-down of one organization or another is not constructive, questioning the organization for its performance it is. Calling for the replacement of an individual is quite reasonable, but only when we provide strong facts supporting the request. "Demonizing" organizations or individuals are extremely counterproductive to the overall community. Criticizing for lack of performance based on the facts is a valid approach that will lead to great changes, but personal attacks towards the humanity of others, is in my book and a position that is shared by many others in our community, as not the best way to ensure common sense, harmony, and the long-term and profitable negotiations, which will result in benefits for the overall community.

Today is the first day of Hanukkah, a day that Jews all over the world celebrate as the triumph of light over the darkness. Jews are taught that we should not curse the dark, we should simply light the candle. As a Jewish woman and applying the same thought to our plight as NEI patients, we will bring the light to our communities through collaboration, sharing, creating bonds and remaining loyal to what unites us all.

Happy Hanukkah! May this entire December holiday season bring you peace, health, tranquility, wealth and may it provide the unity and the cure for what ails us, and for what our community needs it. May we be blessed with these sweet gifts for a lifetime.


1 Voice, 1 Community, 1 Cause™

P.S. : This is not a prepared statement i.e, it is without any editing by PANDORA's editor. Please excuse any grammar or typos. This is simply a soulful message from me, an individual with CFS-ME (and related illnesses), who understands the health challenges individuals with NEI illnesses experience. But ONE, who also is engaged in the process of finding solutions that will bring quality of life for a forgotten patient community.

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