What Does a True ME Definition Look Like?
This is the second in a series of articles explaining our goals. The second goal is get a true myalgic encephalomyelitis (ME) definition established.
A great metaphor for chronic fatigue syndrome (CFS) is the chimera – a ferocious creature from Greek mythology. The chimera is made up of several creatures, the head of a lion, the body of a goat, and a snake for a tail. The Miriam-Webster dictionary puts it like this - “an imaginary monster compounded of incongruous parts.”
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The KnoW M.E. Challenge - Say it. Know it. Cure it!
The KnoW M.E. Challenge, created by ME patient, Tom Jarrett and his family, is now running on Facebook.
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National PR Campaign for ME Update 1-26-2015
Many thanks to everyone’s donations so far - we were able to apply the $1000 matching grant and to meet our goal of an additional $5000 for February.
Here are photos of the two picketers who were present at the opening day of the new Congress. They were picketing outside the Capitol Building in DC targeting members of Congress.
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Anne Keith on Hidden Heroes Google + Talk Show Today Jan. 22 4pm EST
MEadvocacy.org spokesperson, Anne Keith, will be discussing ME on the Hidden Heroes live talk show with Arielle and Aarin. The show is a Google+ Hangouts On Air live broadcast, which will air today January 22, at 4pm EST.
Click on the link to access the show:
https://plus.google.com/events/c1ncce8ntfgja2337llm8aveue4
Here's a link to a time zone converter so you can calculate for your time zone - http://www.timeanddate.com/worldclock/converter.html
You don't need to be a member of Google+ to watch the show. I am not sure if the show will open up the floor for questions, but if so, you will need to be logged into Google+ to do that.
The show will also be archived for future viewing. We will post the link when it's ready.
P2P and IOM – Born Under a Bad Sign
The Pathways to Prevention Workshop for ME/CFS (P2P) and the Institute of Medicine Diagnostic Criteria for ME/CFS (IOM) - how did these two spurious federal redefinition projects get started? And why are myalgic encephalomyelitis (ME) patients protesting?
In the US, the name "chronic fatigue syndrome" (CFS) replaced myalgic encephalomyelitis in 1988, and it is currently defined by the 1994 Fukuda criteria, a government created definition.
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Update: National PR Campaign for ME 1-15-2015
Thanks to everybody who has already donated to the Campaign, we were able to hire the PR firm, Crowds on Demand. They started work January 1, 2015. As we’re just getting started, there are many exciting things in the works, but nothing concrete that I can link to just yet.
There are several smaller media outlets lined up to interview our spokespeople. We have four spokespeople in total (Mindy Kitei, Charlotte Von Salis, Anne Keith and Tracey Temple Smith).
A representative from the PR firm was present at the Congressional Inauguration on our behalf on January 6, 2015, looking for new Congresspersons who might become a champion for ME. We did one-person protests at the NIH and CDC in conjunction with that. We also have an upcoming 60-second radio ad, which will air on Midwestern health podcasts and on various FM/AM radio stations throughout the country.
While we have the first month’s fees paid for, donations have dropped off due to the holidays, and we are behind for February. We need an additional $3000, for a total of $10,000, by January 21. In addition, there is a $1000 matching challenge grant running until January 21, midnight EST. Anything donated, up to a total of $1000, will be doubled.
The IOM report will be coming out February 10. The P2P is also wrapping up and may be completed in late January or early February. Continued funding is crucial to combat these two redefinitions. Please donate!
https://meadvocacy.nationbuilder.com/donatepr
Post Your P2P Comments Here
Whether you have sent comments to the P2P and/or CFSAC or you're boycotting the whole process, we need to collect all comments opposing the P2P, so that they can easily be shown to our Congressional representatives as further proof of our opposition.
Simply post (or repost) your comments opposing the P2P in the Comments section below this article!
We are also working on a petition opposing the P2P - I will post a link as soon as it's ready.
If You Mean M.E., Just Say M.E.!
The National PR Campaign for Myalgic Encephalomyelitis (M.E.) has begun. Many thanks to everyone who has donated to make this a reality! We have hired the public relations (PR) firm, Crowds On Demand, to manage a PR campaign on behalf of ME patients who are too disabled to protest for themselves in an effective way.
We aim to start a national dialogue and get ME and its issues on the radar of the general public, patients, doctors, researchers and our policy makers in Washington, D.C.
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Andrew's Give with ME Challenge (Myalgic Encephalomyelitis)
Andrew is 8 years old, and he challenges you to donate to the National PR Campaign for ME. http://youtu.be/mmhHLrAskCA
Andrew is the son of Tom Jarrett, the ME patient who recently held a protest of the P2P Workshop at the NIH campus in Bethesda, MD. Andrew was also present at the protest.
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P2P – Sold Down the River in a Canoe With No Paddles
I was not surprised when many patients expressed relief, even so far as to be pleased, with the outcome of the National Institutes of Health Pathways to Prevention for ME/CFS Draft Report (commonly referred to as the P2P). After all, far from recommending graded exercise therapy (GET), the panel regarded it as possibly harmful. As for cognitive behavior therapy (CBT), it hardly received a resounding endorsement, going so far to say that it doesn’t improve quality of life. Neither CBT nor GET were recommended as primary treatment strategies. Our worst fears were waylaid by this panel of non-experts. “They heard us,” we cried. But don’t be fooled.
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