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Dec.2014 LauraHillenbrand FaceTheNation
ME+Unbroken Interview HERE -

Dec 2014 ~ "NIH"P2P4ME"

NIH="InsufficientResearch"=DUH !
Treatment= more"SELF Management"
DraftReport HERE
Nov.2014- "Plague"-Published !!
VOA-PodcastAudioInterview HERE
Amazon USA Link HERE

Wednesday, May 12, 2010

#65~ CFSAC + ME/CFS/FM "Awareness DAY" Today !!

  This Wonderful Week actually started off with Mother's Day and many children delivered much love to their mothers in the way of Donations to the Whittemore Peterson Institute to HELP raise money for the URGENTLY Needed research to help everyone in a MORE timely manner... 
Kudos to all of the children and Mothers that came thru and Gave 
what you KNEW was needed and NOT just more things.. you gave 
so that you could have more YEARS with which to LOVE the person in whose name you donated...
Bless you all~ WAY to GO !!!

We are Officially in the middle of AWARENESS WEEK and it is  
TODAY International 2010 ME/CFS/FM Awareness DAY !! 
(including actually ALL Neuro Immune Diseases)

Then on Monday we had the full 1 day CFSAC meeting in Washington DC, was NOT ONLY attended the FIRST TIME EVER by the Asst. to the Sec. of the Dept. of HHS, Dr  Howard K. Koh, but he was actually ON the Agenda for a
"Welcome Statement from the Assistant Secretary for Health"

I want to THANK the person that made these videos available for the World to SEE.

Here is Dr. Wanda Jones PhD., Dr. Howard Koh~HHS,
and the CFSAC members & ex-officio members.
These are all shown here as ONE Segment with the 
"money quotes" in the 3rd part...

My thought in including these here was for those people that were unable to watch the CFSAC meeting LIVE and also for those around the world that would like to get a look at the USA  CFSAC, and this might be a good section to show and SHARE with those you Wish to MAKE AWARE "This WEEK of ME/CFS" this might HELP speak for you....

As you can tell THIS got the Week off with a Grand manner..
not exactly a CURE yet.. but an IMPORTANT STEP for CFS in the USA.

The CFSAC made quite a few recommendations that 
will be going to the HHS for Review and Reply~

They recommend that all people diagnosed with CFS do NOT donate blood~ PERIOD.

They recommend that the HHS Secretary include the education and training of medical providers for CFS in Health Care Reform.

They  categorically "Reject" the attempt to classify CFS as "Psych" in the ICD.

They also made many motions that have to do with their charter, but these I believe were the MOST Important to the patients and public.

Many other videos are already on youtube and many of the written testimonies are available via .pdf download HERE

Some of the Highlight Testimonies I also would like to share with you are as follows :

Annette Whittemore from WPI ~

We received Testimony from Nancy McGrory Richardson, Education and Outreach Director for Hemispherx Biopharma that Makes Ampligen...
explaining the FDA new requests and how they are progressing.

One Patient Testimony I REALLY wanted to bring to you was from
Dr. Mary Schweitzer PhD. Please listen to her points..

Another Testimony I wanted to you hear was from
Dr. Fred Friedberg PhD President of IACFS/ME

The activities and communications are coming FAST and Flurious
and I am adding many MORE "NEW" patient Blogs to this blogroll..for your places to go for commraderie and possible info that might help you. I've also added more to the Herbs/Meds section. I am listing these for INFO only and I am NOT advising you to take anything w/o your Dr's advice.

If you have NOT downloaded a Ribbon anywhere to add to whatever you need it for to HELP Raise Awareness PLEASE feel FREE to download one of the ones I have added at the Top and you can also still add a Twibbon to your avatar by using the Twibbon's shown. We know you by your Ribbons ♥

How many have added a BIG BLUE RIBBON to your 
lamp post or tree out front. Raise Awareness in your neighborhood?

Another member, Diane Martin, from "down-under"
has also created a flyer (above) you MAY download and print and Pass OUT to your friends, Dr's office waiting rooms, any place you thing you can set some..
Thanks Diane ♥♥♥

Many folks that are having Birthdays during this time and month are
asking that everyone instead of giving them Birthday presents to 
Please Donate to  the WPI so more research can be done to HELP us quicker.

Please if you ARE a Mother or have a child donate  in their name
as many Mother and children ARE effected.. Mostly 60% Females.

The week is getting off to a GREAT start.. let's WRITE DOWN all the Ideas of things we aren't doing NOW so we can organize and DO THEM next year for SURE, OK?
Hope the rest of the week continues as good as the first part and that I have MORE to report back soon...


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