ShareThisOK, 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"
What a brilliant post. I can always depend on you to come up with something worth stopping by to read but this excells.
ReplyDeleteI come from the perspective of having an Fibromyalgia/ME/CFS, Arthritis, Muscle weakness, Polymyalgia Rheumatica diagnosis and then Lyme Diagnosis and have recovered on long term antibiotics.
I have been doing a series of Awareness posts these last few days mainly to do with Lyme but also several about ME/CFS just one for the record being.
http://lookingatlyme.blogspot.com/2010/05/mecfslyme-disease-awareness.html
Now I must get out into the garden but I will be back to follow a few more of your excellent links.
Must see Annette Whittemore's presentation to the CFSAC.
Many thanks for all your efforts.
Thank you Joanne for your comment. Altho my recent bad flares and brain fog might prevent me from writing a more personal blog, I do my best to gather information and put it in one place so that we can have one place to go and not forget where it is. I am SO happy that you have found relief from your Lyme. I am missing my garden immensely. Please ENJOY every moment there for both of us.
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