Dear Friends,
Here is P.A.N.D.O.R.A.'S Christmas wishes to you all! Click on on the link below.
'Here is PANDORA'S Christmas wishes and Click the Share button to spread the cheers and create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
Marly Silverman
Thursday, December 24, 2009
Monday, December 21, 2009
PANDORA SPONSORED XMRV Lecture Segment 1: Background, overlapping conditions, viruses
This video is part 1 of 12. The lecture presented by Dr. Nancy Klimas was sponsored by P.A.N.D.O.R.A. The wonderful edited video series was recorded and edited by ME-CFScommunity.com (Daniel Moricoli). English transcription of the video series were coordinated by PhoenixRising.com. Diagnosesupport.com is working on translations to Deutch, Spanish and Italian. This is true “Patient-driven and physician approved™” collaborations. 1Voice, 1Community, 1Cause™
The complete series can be seen at P.A.N.D.O.R.A.'s youtube.com page at http://www.youtube.com/user/pandoranet
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.
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.
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.
Thursday, December 17, 2009
HEMISPHERE RX LETTER REGARDING AMPLIGEN
P.A.N.D.O.R.A. received today a letter from HemisphereRX, the maker of Ampligen, a drug which has been shown to help individuals with CFS-ME. I thought you would like to read it too. I have cut and paste the entire letter for you. Please share with other members of our community.
HEMISPHERE RX LOGO
To: The CFS Patients, Advocacy Community and Healthcare Practitioners
From: Dr. David Strayer
Medical Director of Hemispherx Biopharma
Re: FDA Response on Ampligen®
Hemispherx has received a “complete” response from the FDA in which the FDA requires one additional clinical study to show a convincing effect of Ampligen in the treatment of CFS and confirm the safety in the target population. The on-going open-label study (AMP 511) and the patients enrolled will continue under the current protocol.
The FDA has provided Hemispherx with a clearly articulated set of recommendations to go forward. I would like to share with you the process we plan to go through with the agency in order to identify the most expeditious path to satisfy the requirements for the approval of the Ampligen NDA.
We plan to schedule a meeting with the agency as quickly as possible in order to obtain additional guidance and clarification concerning a number of matters, including the design of this clinical trial. This will be an ongoing process with the agency.
As part of this dialogue, we plan to evaluate the utility of a special protocol assessment from the agency in order to clearly delineate the clinical trial end points, the statistical methods to be utilized, and to obtain agreement with the agency on the results necessary for approval.
Four factors will support the sufficient execution of this clinical trial. First, the CDC's awareness program has increased public knowledge of the disease. Second, the recent identification of a potential etiologic agent, namely a novel retrovirus, should help accelerate patient identification.
Third, the company plans to utilize longstanding relationships with a group of internationally renowned clinical investigators to accelerate patient enrollment.
Lastly, the company plans to expand recently entered contractual relationships with two of the largest clinical research organizations in the world to accelerate its clinical monitoring and data collection capacity.
Finally, the company has adequate finances and resources to address and respond to all of these FDA recommendations. We have been and will continue to be committed to those suffering from Chronic Fatigue Syndrome. Additional information can be found at www.hemispherx.net. (12/17/09)
HEMISPHERE RX LOGO
To: The CFS Patients, Advocacy Community and Healthcare Practitioners
From: Dr. David Strayer
Medical Director of Hemispherx Biopharma
Re: FDA Response on Ampligen®
Hemispherx has received a “complete” response from the FDA in which the FDA requires one additional clinical study to show a convincing effect of Ampligen in the treatment of CFS and confirm the safety in the target population. The on-going open-label study (AMP 511) and the patients enrolled will continue under the current protocol.
The FDA has provided Hemispherx with a clearly articulated set of recommendations to go forward. I would like to share with you the process we plan to go through with the agency in order to identify the most expeditious path to satisfy the requirements for the approval of the Ampligen NDA.
We plan to schedule a meeting with the agency as quickly as possible in order to obtain additional guidance and clarification concerning a number of matters, including the design of this clinical trial. This will be an ongoing process with the agency.
As part of this dialogue, we plan to evaluate the utility of a special protocol assessment from the agency in order to clearly delineate the clinical trial end points, the statistical methods to be utilized, and to obtain agreement with the agency on the results necessary for approval.
Four factors will support the sufficient execution of this clinical trial. First, the CDC's awareness program has increased public knowledge of the disease. Second, the recent identification of a potential etiologic agent, namely a novel retrovirus, should help accelerate patient identification.
Third, the company plans to utilize longstanding relationships with a group of internationally renowned clinical investigators to accelerate patient enrollment.
Lastly, the company plans to expand recently entered contractual relationships with two of the largest clinical research organizations in the world to accelerate its clinical monitoring and data collection capacity.
Finally, the company has adequate finances and resources to address and respond to all of these FDA recommendations. We have been and will continue to be committed to those suffering from Chronic Fatigue Syndrome. Additional information can be found at www.hemispherx.net. (12/17/09)
Wednesday, December 9, 2009
PANDORA'S LATEST NEWSLETTER
PANDORA's latest newsletter is packed with great information and tips on how to beat the flu season, advocacy videos, CFSAC testimonies from a "courageous Doc" - Ken Friedman, and the latest update on Leia Jobe, one of the finalists of PANDORA's 2006-2007 International Advocacy Video Contest. You will love her new video!
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
Monday, December 7, 2009
Study suggests link between virus XMRV and chronic fatigue syndrome a Living Well video Health and Fitness cleveland com
As you can see I am catching up on my video suggestions. Here is another excellent video validating the plight of CFS patients. This is another education tool that we can share with our state and federal congressional leaders when requesting necessary funding for CFS and other NEI illnesses. The time for regional research centers like the NEI Center is now. Go to http://www.causes.com/pandoraneicenter and join PANDORA's cause which is YOUR Cause too. Quality of life issues goes hand and hand with much needed research for neuroendocrineimmune illnesses.
1 Voice, 1 Community, 1 Cause(TM)
Sunday, December 6, 2009
Dr. Oz Show Part 1
Here is Dr. Oz Show on the XMRV virus and CFS - Part 1. His show has generated intense buzz (before and after the show being broadcasted), within the NEI patient community. For me one of the best quotes of the show was made by Dr. Moore when in conversation with Dr. Oz on the issue of memory loss - she mentioned that patients call it brain fog and she elaborated that is not like not knowing where you placed your car keys...it is you don't know what to do with them, when you find them.
This show is a great educational snippet for the public in general. Some have pointed out that Dr. Oz did not give time for the fact that men are severely affected by CFS-ME too, but he did mention it briefly on the show. Also, he did not point out that children can be affected too, but I suppose it was implied since it is a virus and the public is at risk because of the blood supply becoming tainted. He clearly discussed the fact that millions of Americans based on the percentage being extrapolated to the general population - 10 million - have tested positive for the XMRV virus and don't know that they might be at risk.
Leave a comment on PANDORA's page and let's keep up with the momentum and with the debate. We cannot let our government health agencies off the hook. I believe the NIH is now on board and will try to validate the XMRV virus findings.
But we need to continue the grass roots pressure and as patients we need to take ownership of our future. We need to enhance our political and social level of influence now more than ever.
One Voice, One Community, One Cause(tm)
P.S.: Thank you Dr. Oz!
Wednesday, December 2, 2009
Dr. Oz Show on CFS This Thursday: Hoping it will be another holiday season gift to our community
Tomorrow, Thursday December 3, 2009, the topic on Dr. Oz television show will be on chronic fatigue syndrome (CFS). This is a much waited show as it is post XMRV virus related findings by the Whittemore Peterson Institute. I am hoping that they will interview Annette Whittemore, her daughter Andrea and of course Dr. Judy Mikovits and Dr. Vincent C. Lombardi. The CFIDS Association released today that Dr. Danica Moore will be interviewed. Dr. Moore has a child with CFS, and that gives her also an unique perspective.
This is actually a follow-up on previous interview with Dr. Jacob Teitelbaum a few weeks ago that also touched briefly on CFS-ME and other related illnesses. I am grateful to Dr. Teitelbaum for his appearance and for his desire to created much needed awareness for CFS-ME. I know that some will disagree with me, as he has taken some flack on how the interview was conducted. In his defense, I should mention that time constraint is always an issue when being interviewed by a television or radio talk show host. I have often joked that by the time I spell out the name of P.A.N.D.O.R.A. and describe the list of illnesses we embrace, I am going to hear those famous words..."Sorry we are out of time" or "You have 30 seconds." Time is finite in the media world. It is quite contrary in my world. To me time is all that I have, time to get better and time to find a cure. But I am digressing...
The important question I am posing tonight is will CFS-ME be given and be discussed with the scientific approach that it is necessary for the sake of millions of CFS-ME patients or will just get the fluffy approach or disconcerting attitude of "Hey Hon, I am tired too"? Like many stricken with a neuroendocrineimmune illness, I want to see a serious debate on the quality of life issues that affect us. I will be watching the show tomorrow with great anticipation, and with great hope that patients will no longer have to hide from family, friends and in many cases from themselves the fact that CFS-ME (as well as other neuroendocrineimmune illnesses) is the main reason why they languish alone and are so often abandoned by family, friends and employers.
I am hoping that they will discuss the need for the establishment of regional research centers by the Department of Health and Human Services (DHHS) as it is part of the CFS Advisory Committee number one recommendation among many others including ensuring the Centers for Disease Control and Prevention (CDC). I say no more excuses from our government!
I hope that these opportunities will continue to lead to a greater debate on the health care issues that are unique to individuals with neuroendocrineimmune illnesses. I am ready to join in the conversation. I know that many others around the country are too. Patient empowerment, taking ownership, standing up for patient's rights, embracing the same issues as a community are all signs being reported by thousands across our country and abroad. This amazing growth is an awesome result of great scale and greater results. I know I want to remain part of the solution. I know I am already in this patient revolution. How about you?
One Voice, One Community, One Cause™
Thursday, November 19, 2009
Dr. Nancy Klimas Interview on November 13, 2009
Dear Friends,
Here is Dr. Nancy Klimas November 13, 2009 interview with Bob Mayer from South Florida Today, on NBC 6. Many of you are not aware that Bob's wife has endured CFS for many years and he makes the disclaimer during this educational interview.
I hope this link goes viral. (Punt intended!)
Stay tuned for the video of her XMRV virus presentation on November 7, 2009, sponsored by P.A.N.D.O.R.A., at the University of Miami Medical School auditorium. Soon to come on me-cfscommunity.com and on PANDORA's site.
Sunday, November 1, 2009
CFSAC: Marly Silverman Patient Testimony 5
The trip to Washington DC to attend the CFS Advisory Committee meeting was amazing. The first day of the CFSAC meeting the room was packed with patients, researchers and family members. The meeting was held inside the main lobby of the Dept of Health and Human Services. It was an elaborate set up. A main video screen was up towards the ceiling surrounded by dark blue curtains. When the presentation were being made the audience faced the U-Shaped tables covered with dark blue tablecloths, where the CFSAC members were sitting surrounded by microphones, AV equipment and 3 video cameras.
More comments and some personal take on the 2-day meeting as soon as I am able to recoup from the trip.
1 Voice, 1 Community, 1 Cause!
Tuesday, October 27, 2009
'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. It is good reading!
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'
Thursday, October 22, 2009
We are now 7 days before the next CFSAC Meeting in DC - This video should get you fired up to attend! "Does a Virus Cause Chronic Fatigue"
We are just about 7 days before the next CFSAC Meeting in Washington DC on October 29-30, 2009. This video should get you fired up to attend such an important meeting. We, patients need to show up in great numbers. We need to carry signs, t-shirts, bring pictures for the Empty Chair Project and if you are going to speak during the assigned public testimony periods, please send me an e-mail at msilverman@pandoranet.info with your prepared text. I am attempting to publish and publicize every poignant testimony, even if it is barely a whisper like in the case of Laurel Bertrand let me know, so we can share your story as well before, during and after the meeting.
IT IS TIME FOR CHANGE!
Does a Virus Cause Chronic Fatigue?
IT IS TIME FOR CHANGE!
Does a Virus Cause Chronic Fatigue?
Thursday, October 8, 2009
AMERICA'S GIVING CHALLENGE - The Neuroendocrineimmune (NEI) Center
P.A.N.D.O.R.A.'s cause on Facebook is The NeuroEndocrineImmune (NEI) Center -
Our cause is in America's Giving Challenge—Let's win $50,000!
Hi everyone,
Our cause just entered in America's Giving Challenge, which gives us a chance to win $50,000! To win, between now and November 7th we have to get the most donations to our cause (every person can donate once per day and have it count as a unique donation). We can also win daily awards of $1,000 and $500 if we can get the most people to donate in any 24-hour period. The great thing about this Challenge is that it doesn't matter how much you give, but instead how much you do to encourage friends and family to get involved in our cause. We all need to come together and start promoting the cause if we want to win.
A $10 donation is what I am asking to all of PANDORA's members, my family, my friends, my colleagues and our corporate supporters. Please do it NOW, because competition is fierce and we need to have what they call "unique donations", which means donations made by different individuals every day. The challenge will run from Oct 7 to November 6. The clock is ticking.
Each of us has tons of friends on Facebook who we can ask to donate to our cause. But let's think big too—can you put our cause in your email signature, can you throw a party and get people to donate through the cause when they enter, can you organize other people to go out and fundraise from all of their friends? As you reach out to your friends be sure to tell them why this cause matters to you. The possibilities are endless so let's talk about what we can do to win on the Wall of the cause or by replying to this bulletin.
I think we can do it! But it's going to take all of us. Check out the Giving Challenge ( www.causes.com ), then visit our cause to see how we're doing so far and get involved.
Let's win $50,000 for our cause!
Friday, September 18, 2009
Chronic Fatigue Syndrome: Are we really just bitter?
A couple of weeks ago a member of the me-cfscommunity.com, shared with me an article that was posted on ABC News online, that lumped chronic fatigue syndrome (CFS) with 7 other illneses that they deemed "weird" and/or controversial. Here is a solid response from Beth Gilbert a member of our board of directors. Beth contacted the doctor who was quoted on the article and if you want to know what transpired, you need to read Beth Gilbert's article. Read on and share it!
Chronic Fatigue Syndrome: Are we really just bitter?
Posted using ShareThis
Chronic Fatigue Syndrome: Are we really just bitter?
Posted using ShareThis
Wednesday, September 9, 2009
IT IS TIME FOR CHANGE - Part IV
As part of the IT IS TIME FOR CHANGE grass roots initiative it is important to share with you the following CDC response that was posted (modified on Sept 1, 2009) on the CFS CDC program web site:
Input on CDC CFS Strategic Research Plan
"Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.
Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).
CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas."
To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.
Pro-Health Library also posted on September 8, 2009 a short article stating that"CDC to Present 5-Year Research Plan Oct 29-30 at CFS Advisory Committee Meeting", In the article they also referred to Dr. Leonard Jason's position on the empirical CDC CFS definition.
I have not seen an announcement from the CDC regarding what their next move will be. I suppose it takes time to compile the response of the stakeholder's meeting. I am sympathetic to that. Individuals familiar with our advocacy community have been told that positive changes will be made at the CDC, but no lay out of a more specific plan regarding the leadership and or the management team of the CFS CDC program has been announced.
It is known and customary that at every CFSAC meetings there is always a report presentation from the CDC ex-officio member. I suggest that what our community needs to do is to pack the room at the DHHS on October 28-29. Patient advocacy organizations need to send at least one representative to attend the Oct 28-29 meeting. Patient, family members and physicians treating CFS patients and other neuroendocrineimmune disorders (NEIDs) need to send in their testimonies by emailing them to cfsac@hhs.gov.
This is a most auspicious opportunity and we cannot let that go unnoticed. I am hoping that the Empty Chair Project will not have to be displayed once again at the next CFSAC meeting to highlight once again how empty that room is without patient advocates.
IT IS TIME FOR CHANGE... to be continued
Input on CDC CFS Strategic Research Plan
"Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.
Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).
CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas."
To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.
Pro-Health Library also posted on September 8, 2009 a short article stating that"CDC to Present 5-Year Research Plan Oct 29-30 at CFS Advisory Committee Meeting", In the article they also referred to Dr. Leonard Jason's position on the empirical CDC CFS definition.
I have not seen an announcement from the CDC regarding what their next move will be. I suppose it takes time to compile the response of the stakeholder's meeting. I am sympathetic to that. Individuals familiar with our advocacy community have been told that positive changes will be made at the CDC, but no lay out of a more specific plan regarding the leadership and or the management team of the CFS CDC program has been announced.
It is known and customary that at every CFSAC meetings there is always a report presentation from the CDC ex-officio member. I suggest that what our community needs to do is to pack the room at the DHHS on October 28-29. Patient advocacy organizations need to send at least one representative to attend the Oct 28-29 meeting. Patient, family members and physicians treating CFS patients and other neuroendocrineimmune disorders (NEIDs) need to send in their testimonies by emailing them to cfsac@hhs.gov.
This is a most auspicious opportunity and we cannot let that go unnoticed. I am hoping that the Empty Chair Project will not have to be displayed once again at the next CFSAC meeting to highlight once again how empty that room is without patient advocates.
IT IS TIME FOR CHANGE... to be continued
Tuesday, September 8, 2009
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
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
Friday, September 4, 2009
IT IS TIME TO CHANGE - Part II -October 29-30 Next CFSAC Meeting in Washington DC- Department of Health and Human Services (DHSS)
Federal Register date announcement for the next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. We need to ensure once again attendance to this important meeting will continue to increase.
It is Time for Change.
We need to fill each chair in the meeting's room with individuals from all every regions of our country to speak loud and clear that progressive changes have to be made within DHHS and its institutes, agencies that will advance the science in neuroendocrineimmune disorders and more specifically on CFS-ME.
Can PANDORA count on you to be there? We are creating a communication list to make sure we coordinate a national effort to fill the room and show our support for the CFSAC and their recommendations. We will be asking for a meeting with the Secretary of Health either on Oct 28-29, 2009 to share our UNITED message. IT IS TIME FOR CHANGE!
[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Notices]
[Page 45857]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr04se09-63]
=======================================================================
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.
ACTION: Notice.
-----------------------------------------------------------------------
SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.
DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.
ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.
SUPPLEMENTARY INFORMATION:
CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.
The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.
Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to cfsac@hhs.gov to register. Public comments will be limited to five minutes per speaker.
Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.
Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]
BILLING CODE 4150-42-P
It is Time for Change.
We need to fill each chair in the meeting's room with individuals from all every regions of our country to speak loud and clear that progressive changes have to be made within DHHS and its institutes, agencies that will advance the science in neuroendocrineimmune disorders and more specifically on CFS-ME.
Can PANDORA count on you to be there? We are creating a communication list to make sure we coordinate a national effort to fill the room and show our support for the CFSAC and their recommendations. We will be asking for a meeting with the Secretary of Health either on Oct 28-29, 2009 to share our UNITED message. IT IS TIME FOR CHANGE!
[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Notices]
[Page 45857]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr04se09-63]
=======================================================================
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.
ACTION: Notice.
-----------------------------------------------------------------------
SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.
DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.
ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.
SUPPLEMENTARY INFORMATION:
CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.
The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.
Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to cfsac@hhs.gov to register. Public comments will be limited to five minutes per speaker.
Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.
Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]
BILLING CODE 4150-42-P
Thursday, September 3, 2009
Be a Guest Blogger! : Invisible Illness Awareness Week
NICIAW is Sept 14-20, 2009 and you can find out more info at www.invisibleillnessweek.com . They are having a 5-day virtual conference with 20 speakers giving seminars. -Be a Guest Blogger! : Invisible Illness Awareness Week
They are looking for guest bloggers. "Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where."
This is a great opportunity to show off your own blog and be part of something special. Tell Lisa that Marly Silverman, from PANDORA is grateful for the great work that they do.
They are looking for guest bloggers. "Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where."
This is a great opportunity to show off your own blog and be part of something special. Tell Lisa that Marly Silverman, from PANDORA is grateful for the great work that they do.
Wednesday, September 2, 2009
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.
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.
Saturday, August 29, 2009
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.
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.
Wednesday, August 26, 2009
DHHS SEEKING NOMINATIONS FOR 5 POSITIONS WITHIN THE CFS ADVISORY COMMITTEE
Well, folks is here the much awaited request for nominations for 5 positions to the CFSAC was announced today in the Federal Register
Deadline is September 20, 2009. New term will begin on January 3, 2010.
P.A.N.D.O.R.A. has a few names that we would like to nominate, but if you know of a researcher or a physician in you area that we could also nominate and the individual is committed to accepting the nomination and serve in this distinguished committee, we will nominate the individual or individuals.
You can e-mail me at msilverman@pandoranet.info.
Some pertinent information below:
DATES: Nominations for membership on the Committee must be received no
later than 5 p.m. EDT on September 20, 2009, at the address listed
below.
ADDRESSES: All nominations should be mailed or delivered to Wanda K.
Jones, DrPH, Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee; Office on Women's Health; Department of Health and Human
Services; 200 Independence Avenue, SW.; Room 712E; Washington, DC,
20201.
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Department of
Health and Human Services; 200 Independence Avenue, SW; Room 712E;
Washington, DC 20201; (202) 690-7650.
SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee was established to advise, consult with, and make
recommendations to the Secretary, through the Assistant Secretary for
Health, on a broad range of topics including (1) the current state of
the knowledge and research about the epidemiology and risk factors
relating to chronic fatigue syndrome, and identifying potential
opportunities in these areas; (2) current and proposed diagnosis and
treatment methods for chronic fatigue syndrome; and (3) development and
implementation of programs to inform the public, health care
professionals, and the biomedical, academic, and research communities
about chronic fatigue syndrome advances.
Nominations
The Office on Women's Health is requesting nominations to fill five
positions for the CFSAC. The positions are scheduled to become vacant
on January 3, 2010. The Committee is composed of seven scientists with
demonstrated expertise in biomedical research and four individuals with
demonstrated expertise in health services, insurance, or voluntary
organizations concerned with the problems of individuals with CFS. The
vacant positions include all four categories. To qualify for
consideration of appointment to the Committee, an individual must
possess demonstrated experience and expertise in the designated fields
or disciplines, as well as expert knowledge of the broad issues and
topics pertinent to chronic fatigue syndrome....
For the complete public notice in the Federal Register click here.
Deadline is September 20, 2009. New term will begin on January 3, 2010.
P.A.N.D.O.R.A. has a few names that we would like to nominate, but if you know of a researcher or a physician in you area that we could also nominate and the individual is committed to accepting the nomination and serve in this distinguished committee, we will nominate the individual or individuals.
You can e-mail me at msilverman@pandoranet.info.
Some pertinent information below:
DATES: Nominations for membership on the Committee must be received no
later than 5 p.m. EDT on September 20, 2009, at the address listed
below.
ADDRESSES: All nominations should be mailed or delivered to Wanda K.
Jones, DrPH, Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee; Office on Women's Health; Department of Health and Human
Services; 200 Independence Avenue, SW.; Room 712E; Washington, DC,
20201.
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Department of
Health and Human Services; 200 Independence Avenue, SW; Room 712E;
Washington, DC 20201; (202) 690-7650.
SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee was established to advise, consult with, and make
recommendations to the Secretary, through the Assistant Secretary for
Health, on a broad range of topics including (1) the current state of
the knowledge and research about the epidemiology and risk factors
relating to chronic fatigue syndrome, and identifying potential
opportunities in these areas; (2) current and proposed diagnosis and
treatment methods for chronic fatigue syndrome; and (3) development and
implementation of programs to inform the public, health care
professionals, and the biomedical, academic, and research communities
about chronic fatigue syndrome advances.
Nominations
The Office on Women's Health is requesting nominations to fill five
positions for the CFSAC. The positions are scheduled to become vacant
on January 3, 2010. The Committee is composed of seven scientists with
demonstrated expertise in biomedical research and four individuals with
demonstrated expertise in health services, insurance, or voluntary
organizations concerned with the problems of individuals with CFS. The
vacant positions include all four categories. To qualify for
consideration of appointment to the Committee, an individual must
possess demonstrated experience and expertise in the designated fields
or disciplines, as well as expert knowledge of the broad issues and
topics pertinent to chronic fatigue syndrome....
For the complete public notice in the Federal Register click here.
A fighter for Health Care reform dies on August 25, 2009
Senator Ted Kennedy passed away on August 25, 2009, after a battle with brain cancer. We have lost a statesman and an individual who was a heck of an advocate for the poor, for the disabled, for women's rights and the number one proponent for health care reform. He will be missed. He represented one of the last bastions in the senate of the Kennedy legacy. May he rest in peace.May G-d bless his soul.
Update from P.A.N.D.O.R.A.'s newsletter: "We mourn the passing of Senator Ted Kennedy late last night (August 25, 2009). Many in our community are not aware that it was Senator Ted Kennedy and Representative Henry Waxman that brought CFS advocacy issues in the forefront through a congressional mandate in 1993. The establishment of the peer review process for CFS and the establishment of the CFSAC, came about from legislation introduced in 1993 by Senator Kennedy and by Rep. Waxman. We owe Senator Ted Kennedy (as well as Rep. Waxman too) an enormous gratitude and we mourn the loss of one of our strongest advocates. A few years ago,while visiting the Capitol, I met with Rep. Patrick Kennedy and we discussed the special commitment of his father and his as well, towards the neuroendocrineimmune community of suffering, specially on CFS-ME.
Historical Background of the CFS Recurring Special
Emphasis Panel 103rdCongress (1993-1995)
H.R.4
Title: To amend the Public Health Service Act to revise
and extend the programs of the National Institutes of
Health, and for other purposes. [National
Institutes of Health Revitalization Act of 1993]
Sponsor: Rep. Waxman, Henry A. [CA-29]
(introduced 1/5/1993) S.1
Title: A bill to amend the Public Health Service Act to
revise and extend the programs of the National
Institutes of Health, and for other purposes. [National
Institutes of Health Revitalization Act of 1993]
Sponsor: Sen. Kennedy, Edward M. [MA]
(introduced 1/21/1993)
================================================
Sec.902. Chronic Fatigue Syndrome
(b) EXTRAMURAL STUDY SECTION-Not later than 6
months after the date of enactment of this Act, the
Secretary of Health and Human Services shall establish
an extramural study section for chronic fatigue
syndrome research.
================================================
6/10/1993 Became Public Law No: 103-43.
Click here for the presentation of September 17, 2007 of the NIH peer review process of the Center for Scientific Review (CSR)."
Monday, August 10, 2009
IT HAS BEEN A WHILE
It has been a while since I have posted anything on this blog. I am glad to be back. My maezinha (Mommy) Zuleide also lovingly known as Zuzu by her daughters, family and closed friends passed away this February 20. It was a huge personal loss. I hope soon I will be able to talk a bit more about this personal loss without teary eyes.
For now all I have to say is has been a while. I have plenty to share about PANDORA. It is good to be back!
For now all I have to say is has been a while. I have plenty to share about PANDORA. It is good to be back!
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