May 12th – ME/CFS Awareness Day – is just over a month away. Plans for a demonstration are underway, via Erica Verillo.
Erica is organizing a May 12th demonstration at HHS in San Francisco from noon-1 PM in front of the Federal Building. She says, “The theme is -30 Years of Neglect.’ (This is the 30-year anniversary of Incline Village.)”
This demonstration will be a “wheel-in,” with rented wheelchairs provided for demonstrators to sit in. Erica also plans to use pictures of people who have died of ME/CFS, and obituaries will be read.
Erica needs help with the following:
- Finding pictures of people who have died of ME.
- Volunteers in the Bay area to help make banners and signs.
- If you can come, get in touch with Erica! She says, “I realize that wanting to come and being able to come on that day are two different things. But if I have an idea of how many people will be there I’ll be able to calculate how many wheelchairs to rent.”
EMAIL ERICA: everrillo@yahoo.com
A similar demonstration is also being planned for Washington, DC. I will provide details on that as soon as I have them. If there is any way you or friends/family/colleagues can participate, please get in touch with Erica as soon as possible.
I don’t know if renting wheelchairs is the way to go. If you need a wheelchair then use one but if you don’t then it kind of sounds farcical or like a put-on or fake or something, like you’re deliberately playing-up your illness and/or downplaying the situation for people who actually use wheelchairs. This is coming from a housebound ME/CFS patient too btw.
A great plan for May 12th — ME/CFS Awareness Day. Three cheers, Erica, and to all those who will be there with you.
I took it to mean that as we can’t get out–and if having the use of a wheelchair will allow one to participate . . . vs. having to stand the whole time.
I was too tired to finish that sentence in #3 above–but putting in length of time, effort and energy to ‘get out (of the house) and get to the site’ + participating + walking + standing + energy required to get home afterwards–a HUGE push on energy–verrry wearing and taxing–wheelchairs could be the vehicle for some to possibly to allow participation–allowing some conservation of energy due to walking and standing–after using it (energy) all up and more to get out (of the house) and get to the site–not to mention if there is significant distance to travel even locally. That seems very reasonable to use wheelchairs as a helping aide.
@Ess
I don’t know, it seems to me that it could possibly even result in negative publicity if a bunch of patients walk up and sit in a bunch of empty wheelchairs and then when the demo is over, get up and walk away. If people need chairs then that’s fine but I don’t see what the point of wheelchairs is or why they would be necessary.
@John
Good to bring up this discussion. That’s an interesting picture. A bunch of empty wheelchairs sitting there??
The demonstration is not in isolation of all the efforts and steps it would take for p/w ME/CFS to get out to the demonstration, etc., but is part of a big outing and that is a major consideration.
The point that I get out of this is — that the wheelchairs would be used for people that could get to and participate in the demonstration IF they have the aid of a wheelchair–otherwise, it would not be possible for them to attend and be a part of the demonstration.
There have been a few demonstrations recently–and numbers are obviously low because of the limitations with ME/CFS. Personally, I do not use a wheelchair; however, I do not go out to events.
I have read on this blog some months back where others have used wheelchairs in order to enable them to attend an event. Maybe chairs will also be made available at the demonstration to avoid standing for a length of time. (I have bought counter stools that I use in my kitchen and bathroom to avoid all the standing and the energy that uses.)
Cheers and wishing much success to those that are able to get to the demonstration on May 12th–ME/CFS Awareness Day!
This is good. All protests and public actions will help publicize our plight and the government’s inaction. I hope that they have informational fliers that are simply stated and say what are our issues, and then ask people to take action — call congressmembers, HHS, NIH, etc. And I hope they have some signs directed to the government, like “FUND ME/CFS RESEARCH,” or “$ FOR CFS RESEARCH & TREATMENT.”
I don’t know if folks use CFS or ME/CFS, and what the public might/might not know.
I think wheelchairs are fine. Some of us, and sometimes even myself, can’t stand for a long time. If I’m having a bad day, standing 10 minutes is tops. (The other day I did errands in my neighborhood, half as many as I had planned, and I realized later that I had to sit down in the bank, library and dry cleaning store, for a few minutes each. Came home and crashed.) So
wheelchairs are good in a practical sense; they’re also like props, always helps to draw attention and also shows that these are sick people.
media.