Article: ME/CFS Protest Sparks Media Coverage

Cort
Here was my comment

Thanks for covering this issue. The fact is that approximately a million people in the US suffer from an often disabling, poorly understood illness that that has received almost no federal funding for the past 20 years. Government studies show that chronic fatigue syndrome (ME/CFS) costs the US economy about 20 billion dollars a year and yet receives only about $4 million dollars a year in funding.... Contrast that to asthma which causes about half the economic losses that CFS and gets about 300 million dollars in funding every year and you can see why ill people will get out of their beds, knowing they will relapse, some of them severely, to protest like this.

The NIH has basically adbdicated its own principles of supporting the nations health by essentially ignoring, for decades now, a substantial number of ill citizens. CFS may not be sexy or easy to understand but it is common and these people deserve the help that other people with chronic illnesses receive.

With regards the antibiotics quote...Dr. Montoya and other physicians could certainly talk to the assistance many people with CFS have received while on antivirals (not antibiotics). Dr. Montoya is a specialist in this disorder - something that can not be said of the other doctor...
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Hope123
Thanks for highlighting this Cort! And thanks to the folks who have already written in and commented or "thumbs upped" the comments they like!

There are only about 40 comments total on the site and some have been negative [as expected unfortunately]. I would encourage more people to post comments. This is the first US ME/CFS protest in a long time and the San Francisco Chronicle is the paper of record for a major metropolitan area. More comments = more future press coverage! The SF Chronicle might do more stories but we need to let them know that this is an important issue for many people.

These folks, some of whom did not have ME/CFS but took several hours out of their busy lives to protest on my and your behalf, deserve our support! We've talked on this site in the past about how other illnesses have healthy supporters to help out. Well, here are a few of ours.
 
R
thanks for featuring this!

one correction: i have not helped to organize any protests in atlanta. a demo there will happen, i'm sure. (anyone in a position to spearhead the effort at this time? it is all so dicey with our illness, isn't it?)

you, too, can do this! we now have the material to help anyone who wants to do a protest at any of the 20 HHS and CDC regional offices around the US. we now have invites (inviting folks with me/cfs to a demo), press releases about an me/cfs demo to send the press, talking points for handing to HHS officials you manage to meet with, and other goodies we can share with any group that wants to do a demo.

and we can send you the big banner (25 feet), if you want. (or make yr own signs.)

this weekend i'll make public the video of this HHS San Francisco protest and a description of what happened there. it includes a few wonderful surprises.

thanks to all who helped get this protest off the ground, especially my able-bodied mom, in her 70s, who spearheaded the effort. and especially the people with ME/CFS who were able to come!!! i know how hard it is.

the good news is that the reporter is committed to doing more stories on ME/CFS.

i'm flat out sick as a dog from the effort this week, and i was not even physically there for it (i co-organized it from the east coast).

WE CAN CHANGE THE WORLD!!! we can do this, folks. we have to.

rivka
 
PANDORA
A hearty Thanks to Susan, Andy and to all who participated in San Francisco. While they are demonstrating in SF, Dr. Kenneth Friedman, Rebecca Artman and I were in a meeting with the CDC. A long 5 and half-hour at times spirited, frank, engaged conversation with Dr. Beth Unger, Kim Hummell, Dana
Brummer, John O'Connor and a facilitator to keep the meeting moving along. They are getting the message that we are not going to take the status quo laying down anymore - pun intended. We are going to stand up and send a clear, loud and persistent message that WE ARE NO LONGER INVISIBLE.

It is time for us to do a comprehensive advocacy push. An effort where we connect all the loose dots. Without we will remain mired in another 30 years of circular motion. We have to effective in our overall efforts and aim for collaborative and an unified front.

Thank you Rivka for all that you do.We at PANDORA supports you 100%!

Marly Silverman
Endorse PANDORA on Vivint.com Gives Back Project today and every day between now and June 14. Le'ts make sure we are on the top 20 in the Eastern area of the U.S. Here is the link to endorse PANDORA - http://www.vivint.com/givesbackproject/charity/868
 
justinreilly
Very well said, Marly! We must connecting the loose dots! Well, ok, the rest of it was very eloquent and spot on. Let them hear loud and clear: will not go to the back of the bus anymore!

btw, who are Kim Hummell, Dana Brummer and John O'Connor?
 
Cort
PANDORA said:
A hearty Thanks to Susan, Andy and to all who participated in San Francisco. While they are demonstrating in SF, Dr. Kenneth Friedman, Rebecca Artman and I were in a meeting with the CDC. A long 5 and half-hour at times spirited, frank, engaged conversation with Dr. Beth Unger, Kim Hummell, Dana
Brummer, John O'Connor and a facilitator to keep the meeting moving along. They are getting the message that we are not going to take the status quo laying down anymore - pun intended. We are going to stand up and send a clear, loud and persistent message that WE ARE NO LONGER INVISIBLE.

It is time for us to do a comprehensive advocacy push. An effort where we connect all the loose dots. Without we will remain mired in another 30 years of circular motion. We have to effective in our overall efforts and aim for collaborative and an unified front.

Thank you Rivka for all that you do.We at PANDORA supports you 100%!

Marly Silverman
Endorse PANDORA on Vivint.com Gives Back Project today and every day between now and June 14. Le'ts make sure we are on the top 20 in the Eastern area of the U.S. Here is the link to endorse PANDORA - http://www.vivint.com/givesbackproject/charity/868
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That sounds great Marla..we have several separate efforts moving forward..that's great to hear.
 
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