#66~ PR Results of Awareness WEEK-Worldwide so far.

OK, this article might seem a bit DRY, and granted I am in a not very pleasant mood
because the ONE organization that is "supposed to" BE "OUR VOICE" in the USA and HELP "THE PUBLIC HEAR" US... That's what Grassroots Campaigns DO... 
No one has Heard ONE Peep from them, not seen one PSA on any cable or
satellite radio station they sponsored, haven't heard one Spokesperson they 
have attracted to Represent us to speak for us TO 
THE PUBIC., NO handout brochures passed out to Dr's.

So using a British term... I'm bloody well ticked off...because the 
PR TEAM for the USA was ABSOLUTELY   "AWOL"... AND SINCE THERE IS ONLY
ONE National Group that claims that Title.. You can guess whom I mean.


So I have a funny feeling that the Grassroots Volcano is about to ERUPT......


Here is ALL I have been able to gleen with the help from MANY friends from around the WORLD to help me take note of ANY "Awareness WEEK PR articles"....
So here goes.... I have tried to divide it up- by Country or Continent 
when I wasn't sure...Hope it makes some sort of sense to you....


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PUBLISHED Results of Awareness Day/Week PR around the world.

Kansas,USA~ Well, the newspaper in my town had an article about a lady in town with LYME disease, but no mention of ME/CSF/FM.

Utah, USA~ Nothing that I know of in Utah. It gets frustrating...and I know my doctor and others have tried to get the media involved.

Nevada, USA~
Got signed proclamations from both the Nevada Governor, and the local Mayors in Reno, NV, and Sparks, NV, that May 12th is now recognized as ME/CFS/FM day!

Michigan, USA~
Sent out a Press Release to over 20 different places: TV, radio and print media....not a peep :(

California, USA~
I Sent out emails to many TV stations = nada

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Ireland, U.K.~ RTE...Irish TV station...
interviewed an M.E. sufferer.
It was pretty well done but not long enough.

Northern Ireland~ The Down Recorder, Downpatrick, Co. Down, N.Ireland are doing an article every week for the next three weeks...written by Mary Cardwell. I got it today and they have inserted an informative introduction to the article and stated that it will start next week.

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England, U.K.~
Solicitor rides from Hampshire to Edinburgh for CFS Research Foundation
http://www.thisishampshire.net/news/8119155.Man_s_marathon_bike_ride_in_brother_s_memory/http://

VPO Press Release-
Statement on Behalf of Dr Sarah Myhill Concerning GMC Hearing of 29 April
http://www.virtualpressoffice.com/publicsiteContentFileAccess?fileContentId=289920&fromOtherPageToDisableHistory=Y&menuName=News&sId=&sInfo=

IlfordRecorder24
Hainault mum rebuilds life as she battles M.E.
www.ilfordrecorder.co.uk/content/redbridge/recorder/news/story.aspxbrand=RECOnline&category=newsIlford&tBrand=northlondon24&tCategory=newsilford&itemid=WeED14%20May%202010%2015:38:51:530

Gazette~
Mother and daughter from Thornbury speak about the effects of ME
http://www.gazetteseries.co.uk/news/8130415.Mother_and_daughter_speak_about_the_effects_of_ME/

Toronto Star~
A host of other chronic disorders often accompanies fibromyalgia
http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808949--a-host-of-other-chronic-disorders-often-accompanies-fibromyalgia
The Daily Record
ME sufferers battle to raise profile of condition during National Awareness Week -
http://www.dailyrecord.co.uk/news/2010/05/10/me-sufferers-battle-to-raise-profile-of-condition-during-national-awareness-week-86908-22247881/
The Guardian
The Trouble with M.E.
http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome

BBC Radio 2: Jeremy Vine Show
http://www.divshare.com/download/11342188-0d6 
Interviewed kay gilderdale, local radio in newcastle. Interviewed an ME sufferer and I did a tv news interview for central news. ( though still waiting for them to air it, ME association also involved in that interview ).
DailyMail~ RIP Sophia Mirza.
Two policeman broke down her door so she could be sectioned by a psychiatrist, a doctor and a social worker. She died aged 32, the first person in the UK to have ME recorded as a cause of death.
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html

~ UK
GMTV~ http://www.gm.tv/lifestyle/health/48865-me-awareness-week.html


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New Zealand, East Coast~ none here sorry and I'm in New Zealand, on the East Coast, in Hawkes Bay, Napier

New Zealand, Dunedin~ I spoke on radio pacific for NZ plus radio toreoa in Dunedin. Most support groups here in NZ are putting article in the newspapers. I have put one in the Dunedin area and know of most others doing the same. We are also doing displays in the hospital for next week plus have a display in the warehouse which we will be having people there all day.
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Netherlands~ Heard or saw nothing in the Netherlands :-((
BTW, I've send letters to the media as well - not a peep.
But......I'm sure somewhere this year it's going to be front page news!

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Australia~
http://www.metaversejournal.com/2010/05/10/mecfs-awareness-art-exhibition/

Australia~ I haven't heard a zip..had a letter from our local state society letting us know that had stuff that they could post out if we were planning a stall ....sadly it came half way throught the week .......a bit late .......

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Canada:

Toronto's awareness day event at the Ontario Legislature has made the news!
http://www.montrealgazette.com/health/Chronic+illness+group+voices+call+national+diagnostic+clinic/3019292/story.html

(same story published in Vancouver, B.C.)
http://www.vancouversun.com/health/Chronic+illness+group+voices+call+national+diagnostic+clinic/3023364/story.html

BC News
http://www.bclocalnews.com/okanagan_similkameen/vernonmorningstar/lifestyles/93470524.html

Morrisburg, Ontario
http://www.morrisburgleader.net/story/international-mecfs-and-fm-awareness-day-may-12

Peterborough
myKawartha.com
A love story rewarded
http://www.mykawartha.com/community/article/813563--a-love-story-rewarded


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The ‘fibromyalgia wars’ rage on May 13, 2010

Quote:
While there’s finally agreement on what to call it, not everyone in the 21st century agrees that it exists as a “real” illness, focusing instead on the psychosocial aspect of it. Naysayers, writing in the Journal of Rheumatology, have called FM “the medicalization of misery” and declared that “pain is real, fibromyalgia isn’t.”

University of North Carolina professor and rheumatologist Nortin Handler has called FM “a social construction” and suggests that it’s a case of how “a person with widespread chronic pain … chooses to be a patient with widespread chronic pain.”
http://www.healthzone.ca/health/yourhealth/fibromyalgia/article/808945--the-fibromyalgia-wars-rage-on
 
****** May 14, 2010**********
Jamie Fox Show- Satellite Radio about Fibro !!! 

Lynne and Tony on "The Jamie Foxx Show"

Big thanks to Jamie Foxx for talking about fibromyalgia on yesterday’s “The Jamie Foxx Show” on Sirius Satellite Radio, which has over 25 million listeners. The Academy award winning actor, singer and comedian featured special guests Lynne Matallana, President of the National Fibromyalgia Association and Tony Terry, R&B recording artist and new NFA spokesperson. 

Lynne and Tony talked about the importance of raising awareness of fibromyalgia, and the free benefit concert with Tony Terry at today’s Fibromyalgia Awareness Day at Cal State Fullerton. 

Also on the show was Larondra Terry, Tony’s wife, who has fibromyalgia. The Terrys are featured on the cover of the new issue of Fibromyalgia AWARE magazine.
By:National Fibromyalgia Association

Here is a link to Jamie Fox's show from last night.
They start talking about Fibromyalgia at 7:10 into the audio:
 
http://www.youtube.com/watch?v=3XFbG-hG2ok
it continues at this video
http://www.youtube.com/watch?v=2CWX4xQtuRs

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ME/CFS/FM Awareness Blogs + Newsletters~

UK~
http://southdownsliving.blogspot.com/2010/05/me-awareness-week-at-burgess-hill.html

USA~
EmpoweHER
NO/ONOO Cycle May be Cause of CFS, MCS and FM
http://www.empowher.com/news/herarticle/2010/04/26/noonoo-cycle-may-be-cause-cfs-mcs-and-fm

Planet Thrive~Special Guest~Lyme
http://planetthrive.com/2010/05/a-poem-to-kick-off-lyme-disease-awareness-month/
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An Overview of the Latest bio-medical research being done
from the U.K. and IiME
http://www.investinme.org/ResearchCurrentProjects.htm#WPI

This is what we are fighting against. Sectioned by two policeman, a psychiatrist, a doctor and a social worker (all of whom were cleared of wrongdoing), Sophia died aged just 32.
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html#ixzz0o2QNKtoW

The NCI ~CFS/XMRV Connection revealed.
http://ccr.cancer.gov/staff/staff.asp?profileid=5518

June 18th, 2010, Tulane University, Special Conference on XMRV: 
Lessons from studying XMRV and
Infection in Human Blood Products
http://tulane.edu/cid/special.cfm
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ALL of the May 2010 CFSAC- hhs.gov USA meeting are on youtube NOW for your EASY viewing... 
THANKS HEAPS to the TEAM that made this possible!!


http://www.youtube.com/user/CFSACvideos#p/c/131A8EEA7ECD72CD


As Daffy Duck use to say ~ "That's ALL Folks"

#53~ 40th Anniv. Earth Day~ Meds for XMRV? studies, World? blood supply

 As we Celebrate the 40th Anniversary of Earth Day I pray that we 
Re-NEW our Care for the Earth herself AND all of her inhabitants...
Not ONLY the humans but also her animals and resources.
We ARE all one huge Eco-system and NEED to pay attention to what
is happening to ALL of us and what we are doing to our bodies and to the Mother Nature. May we please PAY Attention to what Mother Nature is telling us thru Science and how it is effecting not only our atmosphere but how in this new
21st Century whatever is done in one corner of the earth by humans effects
ALL of US...as we can see by the spread also of all of the flus and viruses.
If it takes a Village to raise a child, Let's UNITE and Build this
World Village to Care for the Earth AND Our Health Worldwide..
We ARE indeed a world of dominoes now and in this jet age microbes and
people are traveling faster than ever....  

Please write your Governmental Reps, etc and let them KNOW you CARE
about BOTH of these issues and ARE watching HOPE the act in the 
BEST Interest of ALL of us.. and we ARE paying attention to HOW they respond...Thx. ♥♥♥
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There have been some new XMRV studies undergoing in Utah that are progressing well and I know of at least one Positive that has shown up so far..so
Carry ON  Dr. Lucinda Bateman..and Dr. Singh...


There has been some news out lately about some new research into older HIV drugs that appear to work on XMRV.. and the next step is to test this theory in animal research..before any human trial would be available.

Articles are now showing up about the research of older HIV meds being researched as a possible viable use against XMRV.  

Journal of Virology

PNAS article also

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NOW ~ finally there is some talk about them actually paying attention to XMRV and the USA Blood Supply after the Recommendations of the CFSAC meeting Oct 2009.

There is a current article from the WSJ with some info about attention being paid to it. This is just the beginning folks, so we really NEED to write to the HHS and let them KNOW we WANT a standardized test to screen the blood supply. There are WAY too many XAND illnesses that don't show up until years later that we need to PREVENT...

Just like I am SURE Isaac Asimov would have appreciated the Blood Supply being screened for HIV back when he had a transfusion and many years later died because of the AIDS-tainted blood he has been given... He was told for YEARS to keep it QUIET, and then Arthur Ashe came out that he had AIDS and a few others and after Isaac's Dr's "were ALL dead" then his family was given the GREEN light to let the public know... NOT THIS TIME Folks...OK?

Wall Street Journal- Blood Supply Article

The Canadians are NOW asking people with ME/CFS "NOT" to donate to their Blood Supply... so we are spreading the news around... Maybe some ears ARE Opening ???


April 8, 2010: The WPI applauds the Canadian government for their response to the findings of a new human retroviral infection, XMRV, in patients with ME/Chronic Fatigue Syndrome. Due to the serious nature of ME/CFS and the possibility of transmitting XMRV through blood transfusions, we believe that it is prudent to be cautious until the scientific community can conduct the necessary studies to determine the prevalence and risk of XMRV in those individuals with ME/CFS.
 
Read the story ("Canada bans blood donations from people with chronic fatigue," April 7, 2010) at Canwest News Service. 

Well, the Tazmans and Australia are also following in rejecting ME/CFS from donating blood...read  Australian and in the Herald Sun in AU.
They are also now rejecting ME/CFS patients from donating blood
in New Zealand .

C.D. form the U.K. suggests:

UK people (and others, actually): please consider emailing NHS Blood and Transplant (NHSBT) at pressoffice@nhsbt.nhs.uk to ask them if they are going to follow the lead of Canada, NZ and Aus in banning pwME from donating blood. You might also mention that the US AABB has banned donations from people who are XMRV positive and that a growing number of UK citizens are testing positive for this virus.

The NHSBT website is here.
http://www.nhsbt.nhs.uk/index.html

And also SaBTO (Advisory Committee on the Safety of Blood, Tissues and Organs) @ SaBTO@dh.gsi.gov.uk

http://www.dh.gov.uk/ab/SaBTO/DH_088830

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Here's also a new video from the U.K. from an enterprising new filmaker

that has put together a well made documentary that says alot in the short

time that have for this clip...

ME Promo from Double D Productions on Vimeo.

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Hillary's BACK ~ Yippeeee ~ from Osler's Web with new blogs.

Please Read her latest posted on this page in the Right Section-->

 Carry ON folks and we WILL GET Public Opinion on OUR side...
and THEY will be the ones to HELP US get the Governments off their backside
to protect their own backside...ya know??  

**GO TEAM GO**
Let's Get the Public of the World involved, OK???
Seriously... they will be a HUGE part of our Help to protect themselves..and thereby help us.

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Please make NOTE that I NOW have this blog set to be able to be translated into MANY languages so you may Feel FREE to send it to friends in other countries and then Simply ask them to use the Translate Button up at the Top to help them read the posts... Much Thx  ♥♥♥