Article: Taking a Stand: A How To Guide for ME/CFS Demonstrations

Cort
Our first how to do a demonstration....Can you see a country-wide effort protesting conditions at DHHS building across the US? I can! and this is the start - a how to do a demonstration...thanks!
 
R
== Organizer's Costs Prepping for Demo (Money & Time) ==

1. Bolt of cloth (40 feet): $38.56
2. Red and black paint: $13.17
3. Paint brushes: $7.99
4. Popcorn for late night banner making: $3
5. Flight to Washington DC: $169.80
6. Taxi to Health and Human Services (HHS) demo: $31.10
7. Return trip Metro card: $3.40
8. Banner making: 2 wks.
9. Calls inquiring which police has jurisdiction over the sidewalk at HHS: 6 hrs.
10. Pitching to the media: 2 days. (Media that came: None).
11. Trying to get a 5 minute meeting with HHS's head of Public Affairs: 4 hours. (Minutes approved: None.)
12. Writing script/statement for the video; also served as the handout for the press (that did not come): Half a day.
13. Post-demo relapse (based on previous post-demo relapses): 1-2 months in/near bed.
14. Influencing the U.S. government's ME/CFS policies and funding allocations: Priceless!
 
R
I think getting as many videotapes on YouTube as possible is one of the more realistic ways for those who are profoundly ill with ME/CFS to go. One of the main reasons there haven't been large, loud protests from ME/CFS sufferers is that they are so sick and stress further depletes energy stores actually making the illness much, much worse. The thought of taking to the streets and forming marches and protests etc is just too much for most of those who are living with this "Hell on Earth" of an illness.
 
R
Rachael said:
I think getting as many videotapes on YouTube as possible is one of the more realistic ways for those who are profoundly ill with ME/CFS to go. One of the main reasons there haven't been large, loud protests from ME/CFS sufferers is that they are so sick and stress further depletes energy stores actually making the illness much, much worse. The thought of taking to the streets and forming marches and protests etc is just too much for most of those who are living with this "Hell on Earth" of an illness.
Click to expand...

you are SO right, rachael! this is our fundamental conundrum, in terms of protesting for me/cfs rights: our patient population is too sick to do it.

like the HIV/AIDS demos of the 80s and 90s, we need to find a way to bring in family and friends and partners. how, is the question? most of us are so isolated after years of being ill that we don't have many family, friends and partners. this is part of our fundamental conundrum.

i feel that videos of us from our bed, emailed to gov't officals in charge, is the best way to go if we are too sick to get out in the streets (and most of us ARE too sick to get out onto the streets).

here is an example (see link below).

September 6, 2010
Video: http://www.youtube.com/watch?v=8t1Xqp1LDxM
(5 min: Comedic singing Clinical trials now! bedridden video with me and my family.)

warmly,
rivka
 
R
rivka: Just to demonstrate how powerful the video 'Voices from the Shadows' actually is, I came across this article today at an online British newspaper site.

Quoting from the article:

"Here is what I have previously understood about M.E. and those who have it."

"M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers. M.E. is 'all in the head' and can be overcome with a bit more determination and a little less of the 'poor me' attitude."

"That, generally, is what I thought about M.E."

"Until, that is, a reader sent me a DVD of a British-made film about the illness titled 'Voices From The Shadows'."

Here's the article: http://www.dailymail.co.uk/debate/a...stence-chronic-fatigue.html?ito=feeds-newsxml

Videos like these may help people to understand just how devastating ME/CFS really is.
 
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