ME/CFS Community to President Obama: Help!

When Courtney Miller asked President Obama about the abysmal state of funding for ME/CFS research, he said,  “Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment. Okay?”  To see the exchange for yourself, fast-forward to 46:50 in the following video:

My latest activist cartoon is a followup to Courtney’s question.  It’s meant to be faxed by Billions and Billions of people, along with their own messages, to President Obama.  Click on the image to see it full-size, and head to this link at the ME/CFS Patient Alliance forum for instructions on downloading the file and faxing.  (You do not need a fax machine to participate!)

Please re-post the Obama cartoon on blogs, forums, and websites.  Give my name, link back to Heaven In My Foot, and—most importantly—link to the instructions for faxing it to Obama.

(Thanks to Lynn and Tina for their work on this! and to Lynn for the idea to do it!)

The Umph to Act: Getting Press Coverage for XMRV and ME/CFS

The ME/CFS activist community is working nobly on Many Fronts.  One of the numerous big needs is getting more and better press coverage, both for XMRV and ME/CFS.  I think part of that effort should be seeking the interest of individual journalists.  Larry and I are focusing on Amy Goodman, host of Democracy Now! because we know and love the show and because Amy gives substantial coverage to stories, particularly on social-justice issues.  With conventional news outlets, one often needs to have some THING you’re doing to get the interest of the journalists.  With Democracy Now!, I think our story itself has a real chance of being compelling.

Last Fall, Larry wrote a letter to Democracy Now! about XMRV and ME/CFS, and I followed up with this cartoon plus a page of contact resources.  I plan to keep updating Democracy Now! as things unfold.  Persistence is key.  I hope other people will also write to Democracy Now! and will identify other journalists whose beat fits our story.  Anybody care to join me, either pursuing Democracy Now! or another journalist/outlet?

Click image to enlarge.

Thank You Dr. Mangan

When I tell people I’ve been faxing cartoons to Francis Collins, Director of the NIH, they usually ask, “Have you gotten any reply?  How do you know they're getting through?”  And I say, “I just send them off, I don’t know if they're getting there!”  But, some weeks ago I got an e-mail reply to one of my cartoons —from Dr. Mangan, Chair of the Trans-NIH ME/CFS Research Working Group.  It was a substantive little email emphasizing that our concerns are not being ignored and that the Working Group is focusing on getting money to researchers outside NIH.  Good goal.  So, here’s my reply to Dr. Mangan.

But first, a few vocabulary terms and orientation points:  (1) The CFS-SEP is the Chronic Fatigue Syndrome Special Emphasis Panel, a group of researchers who review grant applications.  (2) The CFS-SEP has been for some years populated with individuals with no relevant experience—especially dentistry kind of folks.  You can read more about it here. (3) An FOA is a Funding Opportunity Announcement — an invitation to researchers to submit competitive proposals for federal funding.

Double click to see bigger . . .

I Want You to Know, Mr. Collins . . .

Here's my latest activist cartoon faxed to Francis Collins, director of the National Institutes of Health.  Click on image to enlarge.

Bugging Francis Collins Some More

Well, you’ve convinced me.  The positive comments on my first activist cartoons faxed to Francis Collins, director of the NIH, turned me around and decided me on sending more.

Click on image to see larger; click again on image that comes up to see nice and large.

I know I’ve had a lot of ME/CFS/XMRV activism posts lately, which may not be as interesting to some people, but it feels like we’re at a critical moment.  There’s a possibility that something may really change . . . and we have to do what we can to make sure it does.

Image reposted May 28, 2011.

Dear Mr. Francis Collins

Here’s the cartoon I faxed to Francis Collins, Director of the NIH, as part of the Time for Action campaign to get public officials serious about ME/CFS:

(Click once on each image to view larger.)

Based on the response, the organizers deemed the campaign a rapid success and called it off, asking everyone to send one final Thank You.  

I may draw those cartoons yet, though; this is just the beginning.

A bonus for me was discovering faxing cartoons as an accessible form of activism!