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!

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Here is PANDORA's latest newsletter. It is good reading!

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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?

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!

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?

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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

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