The Body - Using Lessons from HIV Activism, People With CFS Fight for the #MillionsMissing

[Kalliope]

The Body - The Complete HIV/AIDS Resource
Journalist Olivia G. Ford
Using Lessons From HIV Activism, People With Chronic Fatigue Syndrome Fight for the #MillionsMissing

Simpson and Wilder both use the skills they've gleaned over decades as HIV activists to understand who has the power to make changes that will lead to improved lives for people with ME, such as lawmakers, state health departments, and federal public health and research bodies -- and to put pressure on those targets. Wilder has made progress getting ME on the agendas of several New York legislators and worked with the state department of health on several ME-related educational measures, including building a website about ME. Further, the U.S. National Institutes of Health is slowly shifting its research priorities regarding ME.

These are important steps, but in the HIV community, we know that shifts in culture and priorities take time -- and pressure. "I feel like we are at June 5, 1981," Wilder stated. "I need to get us to at least 1996."

 

[Alvin]

Magazine, what an interesting idea.

 

[ScottTriGuy]

Why you should click through to the actual article on TheBody.com:

Way back in my life before ME, I wrote a blog for TheBody.com called: "HIV+ Triathlete: Til I Drop"

The blog was a short term project about living with HIV while training for an Ironman triathlon.

Remedy Health Media, the corporation that owns TheBody.com (a site specific for people living HIV/AIDS) and TheBodyPRO.com (a site for health care professionals about HIV/AIDS) owns a number of online health resources that cumulatively reach over 200 million people.

In my dream world, Remedy would launch a similar resource site for ME and be able to leverage their substantial reader base, including reaching physicians and nurses.

So please click through to the article and give them traffic. If they get lots of clicks on this ME article, maybe they'll consider doing more articles, or even a dedicated site for ME.

 

[andypants]

So please click through to the article and give them traffic. If they get lots of clicks on this ME article, maybe they'll consider doing more articles, or even a dedicated site for ME.

Already done! Shared the article to facebook as well, always a real plus when someone from utside the ME crowd writes about us. Sent them a thank you on twitter as well.

 

[Kalliope]

Here are their posts about the article on Facebook and Twitter, for those who want to like, share, and/or comment.

 

[Dolphin]

I like this:

For people living with ME, as Simpson put it, "the health care system is one of the least safe places to be." It is where they are routinely traumatized, physically and psychologically, by providers who assert that their disease is all in their heads, offer treatments that cause harm, or condescend to tell them their disease is made up.