Petition -Change the way media portrays ME/CFS

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http://bit.ly/hCdCJQ

CFS Untied

Adventures in Illness and Politics

Petition-Change the way

media portrays our disease!

April 14, 2011

by Khaly

For years now, ME and CFS have been either

misrepresented or ignored by the journalism

community at large. What could have been an

important asset to us in bringing awareness of our

illness to the masses has not been utilized.

This is not entirely the fault of the press. Needless

to say, their go-to sources (the CFIDS Association of

America and the CDC in particular) have not been

stellar at supplying the kind of information that

would inspire a journalist to dig deeper into this

illness.

Despite this, the advent of XMRV has brought a

small handful of journalists into the arena.

Tuller and Amy Dockser Marcus come to mind.

Our window of opportunity to educate the press is

upon us. With that in mind, a small group of

independent advocates have worked together to

create a petition asking the press to take a harder

look at our illness and the politics at work.

The key points in the petition are as follows. Details

can be seen at the petition site:

(~jvr: see Khaly's site: http://bit.ly/hCdCJQ)

* Convey the fact that this is a

multi-systemic illness with effects that are

far more wide-ranging and devastating than

any level of fatigue.

* Focus attention on the fact that the

governments of the U.S. and most other

nations have seriously underfunded our

illness.

* Make it clear that regardless of its cause,

our disease is worthy of increased funding,

acceptance and attention.

* Present information about the disease in

fresh ways.

* Focus attention on the devastation that

our disease causes.

* Use a critical eye when evaluating

scientific studies.

* Be wary of studies that suggest that any

sort of easy fix may be helpful for our

disease.

* Look to new sources for information and

comments about our illness.

* Bring all of your journalistic skills to bear

when reporting on our disease.

The idea is that once we have signatures on the

petition, we can present it to the media along with

other literature in the form of a media packet. The

media packet will include:

* The signed petition

* An introductory letter to the media

(http://www.cfsuntied.com/forthemedia.html)

* Half a dozen case studies with photos

* A short guide to the different definitions

* A brief description of some of the most

severe symptoms of our disease

* A comprehensive list of groups such as

IMEA, ANIDA, the MECFSForums Wiki, the

new CFSUntied Resource Center, ME and

CFS literate doctors, and patients that can

be used as sources of information.

It's up to us, the patient community. We can effect

change. Let's not wait any longer for the tactics that

haven't worked for a quarter of a century to start

working now. Let's take the bull by the horns and

start stacking the deck in our favor. The press can

be a useful tool in spreading awareness of our

illness. Let's give them a hand and point them in

the right direction.

**This project was developed by Petrison, Liz

Willow, Otis Quila, Dr. Yes, Herd and Khaly

Castle, with lots of great advice from some really

great people. Thank you, everyone who worked on

this.***