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Marly Silverman
- Female
- Miami, FL
- United States
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- Discussions (17)
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- Groups (6)
- Photos (28)
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- Videos (11)
Marly Silverman's Groups
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Rising Up
34 members
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Whittemore Peterson Inst…
28 members
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Fibromyalgia Worldwide G…
28 members
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National ME/FM Action Ne…
25 members
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Wisconsin ME/CFS Assn
19 members
Marly Silverman's Discussions
One Agent for Change PANDORA
Latest Activity
Julia and Rachel,
I think we should somehow create an advocate log that PANDORA could use for the uAdvocates Extraordinaire program: a list of what any of us are doing in our geographical area at one time or another. So we can check and refer to it…
Well, it is good that humor and laugh keeps us healthy. That Monty Python is hilarious! I had a hearty belly laugh. And I suppose the "Anarchist Advocacy Association" tag line is funny too:
"Working together to make sure that nobody works together!"…
Geoff,
I hope you are feeling better by now. YIKES! What an experience for you. We at P.A.N.D.O.R..A. wishes you a speedy recovery Mate!
Marly
Hi Camilla,
Just checking up to see how you are doing...with the latest heath challenge issues. I hope it is nothing serious. We are praying that it is nothing out of the ordinary. Keep us posted.
Marly
Marly,
I would ask for quantifiable asistance and support in developing ACCURATE and APPROPRIATE testing and TREATMENT for all patients.
Denise
It's not just Reeves.
He never could have gotten away with this, without a hell of a lot of cooperation.
There are a lot of "CFS researchers" who would be glad to make it almost sound like they were going to study the right thing, but not really.
T…
Just me and my good buddies, Smith.... and Wesson.
Makes me picture you as some one-man compound dressed in fatigues with surrounding areas booby trapped for intruders within a 5 mile radius. Hang tough chief!
GILBERT'S 17th Street Grill Dinner & a Movie Benefit for PANDORA
Hi everyone,
I am pleased to see some familiar names and faces who have joined CFSknowledgecenter.com. I am glad we are enlarging our family-our community.
I want to invite you to participate in our next major fund raising event to benefit PANDORA - Gilbert's 17th Street Grill Dinner & a Movie to benefit PANDORA on June 8, 2009 from 5:30 pm to 8:00 pm.
Visit our web site soon at www.pandoranet.info and in the meantime check our photos below.
I am pleased to see some familiar names and faces who have joined CFSknowledgecenter.com. I am glad we are enlarging our family-our community.
I want to invite you to participate in our next major fund raising event to benefit PANDORA - Gilbert's 17th Street Grill Dinner & a Movie to benefit PANDORA on June 8, 2009 from 5:30 pm to 8:00 pm.
Visit our web site soon at www.pandoranet.info and in the meantime check our photos below.
Marly Silverman's Photos
Marly Silverman's Videos
Marly Silverman's Blog
Part 2 - PANDORA's Follow up Letter to the U.S. Secretary of Health - Need your number one request/input NOW
I am posting a reply that I provided earlier here to the reply/comments on the subject mentioned above. Because of technical difficulties my corrections did not come through in the page layout and in order not to lose what I wrote. I am redoing the reply, revising it and post… Continue
Posted on December 12, 2009 at 12:19pm — 17 Comments
PANDORA's Follow up Letter to the U.S. Secretary of Health - Need your number one request/input NOW
Hi Everyone,
We are working on a follow-up letter to the U.S. Secretary of Health. We will do a short video and will also include a short petition on what is our number ONE request from our overall community. Personally, my number one request is funding for the establishment of regional research centers similar to the NEI Center and WPI.
Please remember we are… Continue
We are working on a follow-up letter to the U.S. Secretary of Health. We will do a short video and will also include a short petition on what is our number ONE request from our overall community. Personally, my number one request is funding for the establishment of regional research centers similar to the NEI Center and WPI.
Please remember we are… Continue
Posted on December 10, 2009 at 8:02am — 15 Comments
The CFS Buzz: New Article on WPI and The ABC of MCS book translated to English
The Buzz in our community continues:
A story telling article was release online at the New York Times on how Dr. Judy Mikovit and Annette Whittemore met. Click here to read it
Els Valkenburg, an advocate colleague, informed me that her book - The ABC of MCS has been translated to English and has been released worldwide by McFarland. C… Continue
A story telling article was release online at the New York Times on how Dr. Judy Mikovit and Annette Whittemore met. Click here to read it
Els Valkenburg, an advocate colleague, informed me that her book - The ABC of MCS has been translated to English and has been released worldwide by McFarland. C… Continue
Posted on November 12, 2009 at 8:21am — 1 Comment
FOR S.FLORIDA MEMBERS OF CFS-MECOMMUNITY.COM
MARK YOUR CALENDARS! Bob Mayer will be interviewing Dr. Klimas on NBC6 on Friday, November 13 th during his South Florida Today show which airs from 11:00 AM - 12:00 PM. They will be discussing the XMRV retrovirus as well as other topics of interest to those of us in the CFS/ME community. You won't want to miss this interview.
Posted on November 11, 2009 at 7:51pm —
CFSAC Mtg Oct 29-30, 2009 - DHHS in Washington DC
Friends,
PANDORA representatives and patient advocates colleagues will be attending this meeting, myself included. I will be presenting a 5 minute public testimony on October 29 at 12:15 pm. Laurel Bertrand is scheduled to show her video at 9:15 am. The numbers of viewers have increased considerably it stands now at 1,426. Make sure you click on the video, rate it and then share it with others.
We are bringing small cards to di… Continue
PANDORA representatives and patient advocates colleagues will be attending this meeting, myself included. I will be presenting a 5 minute public testimony on October 29 at 12:15 pm. Laurel Bertrand is scheduled to show her video at 9:15 am. The numbers of viewers have increased considerably it stands now at 1,426. Make sure you click on the video, rate it and then share it with others.
We are bringing small cards to di… Continue
Posted on October 25, 2009 at 7:30pm — 4 Comments
Comment Wall (61 comments)
- At 11:05am on December 19, 2009,
Sandi said…
- Hi Marly,
Thank you for the Happy Birthday wishes, the Fireworks and the kind words. The past year has been amazing. Being part of the NEI Team this past year and working on the NEI project has proved to be an electrifying journey. Working together in the harmonious relationship we share has made the work seem easy, and energizing. There still is much to do, but I know with the support of patients, families and friends touched by these illnesses, we will see our dream come true. Thank you for the true friendship.
Love, Sandi
- At 8:37pm on December 10, 2009,
Elsie Owings said… - You wrote "I need a wife." You're not the only one! You ought to see my house! Awk!!! I'm very busy helping my parents (age 88 and 90) these days, and with my CFS, there's just no energy by the time I get home. And now, of course, there's the snow to deal with here in Michigan. It just keeps falling and falling and falling... Should be done by April, though!
Lotsa love,
Elsie
- At 2:11am on November 24, 2009,
Elsie Owings said…
- Thanks for the welcome, Marly, and thanks for all you've done!
Let's just hope that we see some payoff soon for all the efforts and the long wait.
I filled out the research questionnaire at WPI, but don't know whether they'll actually request a blood sample for research. I sure wish they would. I want to be a part of the discovery of "what ails us."
Lotsa love,
Elsie
- At 4:36pm on November 5, 2009,
Dave from FL said… - Hi,
Can I make a pledge to the Becca fund on Sat. at " KlimasPalooza " I am not on Facebook... ( I hope the KlimasPalooza " gets traction... sounds pretty cool... )
Dave
- At 12:35am on November 3, 2009,
Dave from FL said…
- Hi Marly,
WOW... what a week in Washington ( say that 5 times cognitively quickly..lol..) Anyway... my thanks and respect for all you do for all of the CFIDS/ ME community. I plan to be in Miami for the Dr. K talk this weekend. I got my e-mail confirm ! ! ! I guess the entire So FL community would be a great audience... I have not seen you since your 2007 conf. in Ft. Laud. I have been participating in the studies... so I feel a part of it... David from Deerfield Beach now in N. FL... FOR THE BOARD... I was told the Dr. K. talk will go to video and be posted ...Anyway many thanks again Marly... Dave
- At 9:35pm on November 2, 2009,
Warbler512 said… - Marly,
Thank you for a smoking CFSAC speech. I read your clarification post on the Science release, and will just say the thread initiator was already considering taking it down; he's as concerned about "reconciliation" as yourself, and pretty soon some of these become bashing magnets. Please keep in touch with us, because many are historical novices, but we also need to know who in NIH/CDC actually is coming around and how to best affect that, rather than just criticize monolithically. - VR, Chris
- At 4:05pm on October 26, 2009,
Camilla Lawson said… - A video of Dr Klimas speaking would be great if Dan can get it. I'm sure everyone would love to see it.
Camilla
- At 11:13am on October 26, 2009,
Camilla Lawson said…
- Thank you for your support Marly! Glad to have you in the FM group as you give us new updates as they happen...very important to us all.
Sure wish I could attend the Dr. Klimas lecture with you!
Camilla
- At 10:01am on October 5, 2009,
Camilla Lawson said…
- The Fibromyalgia Worldwide Group is back up and running. Please remember to re-join the group as your input is valuable to us all.
- At 2:55pm on September 29, 2009,
Rachel said… - Marly, thank you for the birthday wishes! Blessings to you!
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