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. 

  

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

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.


HAPPY HOLIDAYS!

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.

IT IS TIME FOR CHANGE - Part One

You are aware that P.A.N.D.O.R.A. the patient advocacy organization I represent embraces the concept of neuroendocrineimmune disorders. But today I want to specifically target one of these illnesses – Chronic Fatigue Syndrome or ME, as it is known in Europe and other countries.

The reasons why I am highlighting CFS-ME is simply because of the major historical opportunity that is being augmented by the upcoming CFS Advisory Committee (CFSAC) October 2009 meeting at the Department of Health and Human Services (DHHS) headquarters in Washington DC. You may or not be aware but at the May 27-28 meeting, a historical set of events occurred – The CFSAC gave a “thumbs down” to the current Centers for Disease Control and Prevention (CDC) leadership in charge of the CFS scientific research and public education programs.

This move was expressed quite well on their number one recommendation: ”Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.” You can click here to read the full set of recommendations at that meeting.

I say again historical, because the IACFS-ME Association also gave a “thumbs down” to the CDC leadership, followed by the CFIDS Association of America, Inc, one of the largest CFS patient advocacy groups in the U.S. Never ever have I been told, (and since I was diagnosed with CFS-ME in 1998 – a mere 11 years compared to many who have had this diagnosis for 25-35 years), have these major players agreed in something so fundamental.

It does not escape from us either, that the CDC stakeholder’s meeting held on April 2009 generated a barrage of other organizations and individuals stating their “thumbs down” for the 25-30 year performance of the CFS research & public education programs at the CDC as well. I represented P.A.N.D.O.R.A. by delivering a short presentation (later expanded) of our concerns based on the requested input outline. Many other individuals, and astutely so, saw the opportunity to also deliver a scathing message to the decision maker officials at the CDC that the current CFS program has not had for a long time, the support, the trust and the much needed vote of confidence of the patient advocacy community. Now, as it seems, the CDC does not have the crucial vote of confidence either from the scientific and medical community as well.

After reading John Herd’s latest blog on me-cfscommunity.com, I decided to postpone today’s original posting for a later day. Instead I decided to write about this important issue and about some other ideas that have been brewing on my CFS-ME-FM brain: how to create a social public awareness event that would mobilize our nationwide community if not worldwide, raise funds, generate media interest, touch the heart of lawmakers and just as importantly, reach the decision makers at the Department of Health and Human Services (DHHS) and at the Centers for Disease Control and Prevention (CDC).

While I will not engage in personal attacks, nor demonize individuals whom I have had the opportunity to meet and I have learned to respect, I do too believe IT IS TIME FOR CHANGE. It is time for a significant change to be made by the decisions makers at the CDC so CFS research can be progressive and yield better and greater results. It is time for the CDC to take its losses, re-organize, re-vamp and move on! For far too long the CFS-ME patient community has been suffering greatly.

But how do we convey this strong message? One idea that came to my mind was inspired by Joshua Tabb who blogs for The Case Foundation. Joshua shared on his blog article Learn the Lingo: F is for flash mob, mobilizing your mob. So the idea is to do something that is related to our community of suffering that will create awareness to the plight of millions of Americans and many other millions worldwide. What it would be? Folks wearing a t-shirt saying IT IS TIME FOR CHANGE with a pretty logo and lying down in nearby mall? How about wearing a mask and freezing for a flash moment? How about doing a line dance? How about holding hands? Perhaps we should all carry letters that at a signal, we would raise them to read IT IS TIME FOR CHANGE or to read One Community, One Voice, One Cause. But the key point of "flash your mob" is to create a moment in time a very short time (5 minutes or so) that occurs peacefully, quietly, but leaves an indelible mark in the public & government consciousness.

So I guess all I have to say now, is that I may not know much,but this much I instinctively know... IT IS TIME FOR CHANGE. I think you will agree.

Dr. Lenny Jason's interview in the NewYorkTimes.com Health Guide dated 5/30/2008

I am grateful to Dr. Lenny Jason for sharing his own battles with CFS/ME. I am also delighted to see that the IACFS/ME has taken the position to assume a leadership role in advocacy issues on behalf of our community of suffering.

May 30, 2008
Expert Q & A
Learning Firsthand About Chronic Fatigue Syndrome
By DAVID TULLER
Leonard Jason is a professor of psychology at DePaul University in Chicago and the director of the university’s Center for Community Research. He is on the Chronic Fatigue Syndrome Advisory Committee to the federal Department of Health and Human Services and is a board member of the International Association for CFS/ME, an advocacy group.

Q: What is it about chronic fatigue syndrome that makes it so challenging for many people — patients themselves, doctors, family members?

A: Fatigue is a universal human experience, and in fact most people are very hard-working and feel fatigued a lot of the time. And severe fatigue is one of the most common complaints that people bring to their physicians. Because so many people have general fatigue and continue to function, they think, “What’s that? That’s not a disease, it’s just a fact of life.” So there’s a perception both among medical personnel and the lay public that it’s something that you push yourself through, you deal with it. There’s a tendency to think, “Well, you’re stressed out, get some better sleep, take some antidepressants.”

With heart disease or cancer or AIDS, you have an immediate feeling from your family, your work associates, your friends, that this is something we need to be sympathetic to, we need to make accommodations for. What’s strikingly different about this illness is that the majority of people not only have to deal with a particularly debilitating health problem, they also have to deal with the stigma and societal reaction and disbelief and illegitimacy, and that is crushing, Your work colleagues say you’re malingering, medical personnel say there’s nothing they can find so they’ll refer you to a psychiatrist, and your friends begin to complain that you’re never calling them, you’ve rejected them. So this person is in the whirlwind of a terrain of disbelief that is probably in some ways unique.

Q: Has the perception of C.F.S. changed over the years?

A: I spend a lot of my time giving talks to audiences of people I don’t know, and I feel it’s very different today — vastly different than 20 years ago. At that time, no one had heard of it and there was almost universal disbelief. Today, that is much, much less. I don’t mean to suggest that there is no skepticism remaining. It’s still present. But it is my opinion that the people who are skeptical haven’t really looked at the literature. It’s easy to nurse your skepticism when you haven’t really bothered to look.

Q: How much would you associate the skepticism with the name “chronic fatigue syndrome,” which is used in the United States, instead of names like “myalgic encephalomyelitis” or “myalgic encephalopathy,” which are more common in other countries?

A: The name is unfortunate. It’s a terrible name, because fatigue is the focus and that is differently experienced by people who are healthy than by people who have this illness. I do think if we called bronchitis or emphysema “chronic cough syndrome,” you’d probably have very little respect for those people, but a name that’s more medical sounding changes people’s perceptions.

When you have a more medical-sounding name, you’re saying the illness is not something fluffy, to be downplayed and ignored, and health care personnel think of it as more serious, more debilitating. I hope there will be a new name, but the problem is you don’t change names lightly, even bad names, because people come to recognize an illness by a name. I think changing it will confuse a lot of people, so it better be a new name that has broader acceptability among patients and researchers.

There is a movement developing around the world of people using different terms, and some are using the term M.E./C.F.S. The C.D.C. and the CFIDS Association are two of the last large organizations in the United States who have not come aboard.

Q: There are many people who think C.F.S. is just a form of depression. What’s the connection between the two?

A: The fast answer is, if you want to do a quick diagnostic test, you could say, “If you were well tomorrow, what would you do?” And the person with C.F.S. would give you a list of things that they want to get back to in their life, and the person with classic depression would probably say, “I don’t know.”

Eighty percent of people who have depression have fatigue, but it’s not their most serious complaint. They might have sleep problems, and some cognitive problems that are common, and they can end up being brought into the case definition for C.F.S. Some people with this disease do have depression. If you basically have a person who says they were feeling pretty good, now they’re sick, and then they get depressed, they could have depression as well as the illness. The real critical problem is when you have a person who has solely depression and does not have this illness, but has fatigue. So if your case definition is imprecise and you blur the categories, and that brings into it people who don’t have the illness, you ultimately have problems with estimating how many people have it.

Q: Why does the estimate of how many people have the illness matter?

A: This all goes back to case definition. If it includes people who don’t have the illness, some might say that at least there are advantages to that because it gives C.F.S. higher rates and more attention. So if there are millions of people with this illness, it might make the policy people take it more seriously. I think one needs to be wary of that, because if you do research with this broader group of people, and some of them don’t have the illness, and the question is what is the biologic data, how do you interpret that? If you have patient samples that are different, ultimately what will happen is it’s very hard to find genetic or biological markers because there’s been such imprecision in how it’s been identified. So what happens is that people say, “We can’t find anything, it must be psychogenic.”

Q: You were diagnosed with C.F.S. many years ago. How did that affect you?

A: That triggered my interest. I got C.F.S. in 1990 after having mononucleosis, and ended up having to leave my work for about a year and a half. I said to myself, “Well, gee, if this is affecting me like it is, I should try to do some research.” I knew a little bit about it, beforehand, and then I started reading the literature.

The epidemiology done by the C.D.C. was atrocious. What I read was that this was an extremely rare disorder that affected less than 20,000 people, that it was primarily psychological, that it affected primarily upper-middle-class people, that it had a case definition that was put together by consensus and not by research methods, and that it had a name that was pretty trivializing. The prevalence research was very poorly done. The tests they were using were inappropriate and had a real bias for psychiatric morbidity. I realized that one needed to do basic work in diagnostics and basic work in epidemiology. I looked at it and said, “Hey, I’ve got enough work here for the next decade.” It was a real work opportunity for me.

Q: How did you recover?

A: I would say that it was a very slow process. I had the good fortune that most people don’t have, in that I had resources. I was a tenure-track professor with a good income who had people rooting for me, and nobody every questioned me or said you’re making this up, or it’s not serious. Everyone knew I was a very hard worker, and they wanted me back. How many people who get sick with this have that opportunity? So they made it possible for me to build myself back up. I had benefits and a full salary. I had a work setting, and a friendship setting and a support setting that most people don’t have. Most people, the first thing that happens is they lose their job, and then they don’t have enough money. I’m still somewhat careful about how much I do and what I commit to. I think of myself as being 70 to 80 percent back, not 100 percent.

Publish date: 5/30/2008

CFSAC Meeting - Washington DC, May 6,2008 - Day 2, Part I

Great items to report. The Empty Chair project went well. I was pleased to see that the room was not empty as usually and I had a less amount of chairs available for placement of caregivers/family pictures and of CFS individuals. The feedback we received from Dr.Anand was really encouraging. He is looking at all venues of communication with the patient population by using available technology that we advocacy orgs can post on our web sites and in the case of P.A.N.D.O.R.A., on our non profit page of YouTube.com.

In the meantime, we patients need to click on their web site at http://www.hhs.gov/advcomcfs/pastmeetings.html to read the Nov 28, 2007 meeting minutes to get a feel and an update for what the CFSAC is doing. I want to acknowledge here everyone who sent us an e-mail and ask for your understanding if we did not get back to you in time for this meeting. We received 100s e-mails and letters and our volunteer office staff was overwhelmed with the response. But we will keep your letters, pictures and will contact you to finalize it as we are considering making the Empty Chair project a "travelling exhibition". We will let you know if it will be possible.

The CFSAC is up for renewal this September and although the renewal of this committee is not in jeopardy as I was told by DHHS staff, the CFIDS Association does not want us to take any chances and it has issued an action alert asking CFS patients to write to Secretary Leavitt to ensure the committee remains fully funded. I actually would like to see its budget increased considerably. So make sure to say it if you write to Secretary Leavitt on the issue to raise its future funding.

Today as I was told, (and as I witnessed yesterday) was a heart wrenching public testimony period, as the CFS patients made their presentations in person. Every personal story makes your heart cringe and your eyes watery. As much as I am a veteran,seasoned patient advocate, the emotion I hear, see and feel emanating from these patients are difficult to handle. And I today did not get to witness them in person due to a morning visit to Capitol Hill to visit House Representatives Ileana Ros-Lehtinen whom I had the opportunity to meet again in person, and with Rep. Robert Wexler'staff as well with Rep. Ron Klein. These morning meetings were quite productive as our appropriations requests are in place and moving along the long tedious process. They will require a bit of tweaking regarding the language we used, and P.A.N.D.O.R.A. will work it out in the coming months, but before we tackle the next step of this project I will have to rest aggressively and recoup from this trip.

It is gratifying to see that Rep. Ros-Lehtinen understands that without a Center of Excellence and without statutory language with specific funding for the CFS/Neuroendocrineimmune Centers of Excellence, their establishment will not be realized. I say she gets it! And so do Reps Wexler and Klein (my own congressman who represents the district where I live in Florida!)

I am extremely grateful that two of their staff members: Eva Dominguez (Wexler) and Virgina Neale (Klein) came to the CFSAC meeting in the afternoon and were educated and appreciated for their interest in coming to such an important meeting for our community. I have been coming to Capitol Hill for the past 4 and half-years if not longer and this is the first time congressional staffers attended a CFSAC meeting. I am excited, grateful and elated to say the least!

A long list of recommendations are being sent to Secretary Leavitt by the CFSAC and it is incumbent on us to advise Secretary Leavitt of the importance of these recommendations to our Quality of Life. There is a huge momentum here and we need to grab it!

And to finish my report on the last day of this two-day meeting, with some exciting notes: The presentation by Dr. Kenneth Friedman, our Secretary & Chairman of Public Policy for P.A.N.D.O.R.A. provided a great insight on the New Jersey CFS Association and on their medical student scholarship, which is creating the much needed awareness of the plight of CFS patients to physicians-in-training, and affording our community a greater potential that the next wave of physicians will be well trained in neuroendocrineimmune disorders and in particular CFS. He proudly announced our own scholarships and we are elated that one of them we are naming it after him for his accomplishments, hard work and collaborative efforts in uniting our community. It has been a pleasure for me to personally collaborate and see the results of our joint efforts. It is extremely gratifying!

We are hoping that other organizations follow and apply these initiatives in their own regional areas. Our community grants are made to work as seed money/change to encourage this type of collaboration and additional initiatives.

I am also amazed at one of the most professional patient representations I have seen in the CFSAC since I have attended these meetings by Rebecca Artman,our Public Policy and Community Advisor, who valiantly, smartly and persistently is fighting for patient's issues. Her work has been diligent, to the point, and on target! I take great pride to say that she is a true representative of what P.A.N.D.O.R.A. means to our community.

I also want to invite you all to join P.A.N.D.O.R.A.'s efforts on May 12 2008-Awareness Day. During the month of MAY, series of proclamation day letters for May 12as P.A.N.D.O.R.A.'s Neuroendocrineimmune Disorders Day in the cities of Pompano Beach,Pembroke Pines, Lighthouse Point, Deerfield Beach, Delray Beach, Boca Raton, all in the state of Florida and in the city of Murphy, North Carolina are being issued by their respective mayors. If you live in any one this cities, please send your mayor a note of thanks!

I want to thank Cort Johnson, Pat & Bruce Fero, Dr. Sharon Ostalecki, Claudia Wendlandt and Rik Carlson whose organizations signed up on the letter we sent to Congressional Members of the Health Committees (appropriations) as well as their own congressmen inviting their staff to attend at least the public testimony portion of the CFSAC meeting followed by a short list of priorities that only funding will address.

I also want to thank patient advocates Mary Schweitzer, Megan and many of the brave patients, parents and caregivers who presented their testimonies during these two day-meeting. It goes further to show, that ONE VOICE, ONE CAUSE, ONE COMMUNITY, United can make a difference and I ask you who is reading this post today, to Join US and become an Agent for Change too!

ADVOCACY WORKS!

CFSAC Meeting - Washington DC, May 5, 2008

I am here in Washington DC on my way to attend the May5-6, 2008 CFS Advisory Committee meeting at the DHHS. I am excited as I heard that several patient advocates are flying in from different parts of the country to submit their testimonies. This indicates to me that I may not have as many empty chairs for our advocacy project which is exactly the results that we like to see.

I have letters from CFS patients from several states and their pictures as well to place in the empty chairs. I am meeting with some congressional staffers tomorrow. Dr. Kenneth Friedman, our Secretary and Chairman of our Public Policy committee will make a presentation at this meeting regarding initiative or methods to get medical students to learn about CFS-ME. We are excited about his presentation because the methods he spearheaded at the NJCFS Association is something that other organizations can follow. P.A.N.D.O.R.A. has expanded their original initiative and we have established community grants which will be disbursed in the coming months. The first community grant from P.A.N.D.O.R.A. was given to DePaul University for the Chronic Ill Student Patient program. The second one was an advocacy grant given to the CFIDS Association of America, Inc. Complete details on these grants and about our entire community grant initiative will be going out soon. Please check our web site on May 12, 2008 - Our International Awareness Day - One special gift that Tom Hennessy Jr. gave us when he worked valiantly for the rights of CFS and Neuroendocrineimmune Disorders Patients worldwide.

I will provide you with some pertinent information as the meeting progresses and when I am able to log on the net.

As May 12 approaches, the cities of Murhpy-North Carolina, as well as the cities in Florida of Delray Beach, Pembroke Pines,Lighthouse Point and Boca Raton have issued letter proclaming May 12, 2008 - PANDORA's Neuroendocrineimmune Disorders Awareness Day in their cities. More to come soon...
Life is Good!

Marla Silverman