The #MEAction post (retitled after I calmed down to “#MEAction’s Support Needed On Bill to Increase NIH Funding”), has stirred up a lot. Boy, did it stir up a lot.

It was understandable; the post was, after all, composed in quite a state of heat. I considered H.R. 7057 the most important piece of legislation I’d seen in 15 years covering ME/CFS. Given the U.S.’s budget situation, next year the bill might even – if a worst case scenario prevailed – be critical for continuing federal funding of ME/CFS research.

It was not surprising, then, that Health Rising poured more into this action than we ever have. We created three blogs, produced a website-wide ad, did a small ad buy on Facebook, and I communicated with my House representative several times – plus there was the #MEAction blog. I was about as amped up about it as could be.

“We’ve Got You Now” – Historic Effort to Increase NIH Funding for ME/CFS Begins Amid Signs of Change

Still, in15 years of writing, though, I had never done a post like that. I had gone back and forth about publishing it. I was waking up early in the morning thinking about it. Finally, I just let it go, if only to move on.

A week or so after the post was published, I was able to reflect on it better.

While I consider the concerns I raised in the piece valid, my unease about it has only grown over time. Something was off. Over time, I realized I had made some real mistakes.

The biggest of which was that I did not go to Jen Brea and #MEAction directly with the post before it was published. Jen communicated to me her dismay that I had not attempted to directly contact her. I understand her dismay.

That is what friends would do. While I’ve rarely communicated with her, in the context of our work on ME/CFS, we are (or should be) friends and partners. In the heat of the moment, I forgot that, violated those ties – and I regret that. Instead of viewing her and #MEAction as the partners they could be, I started viewed them as something else. I try to see the possibility present in situations, but this time I failed. I began channeling the dark side, big time.

I was so amped about this situation that I got kicked out of a group!

I also allowed some things to get in the way of getting a hold of Jen and #MEAction that I shouldn’t have. For one, I had never forged any real connections with #MEAction. I had twice communicated my concerns to a senior staff member of #MEAction, but when my concerns about the support of H.R. 7057 were not addressed, I stopped there – and I shouldn’t have.

Unfortunately, I interpreted her responses as a brush off. The truth is I have no idea why my concerns weren’t addressed (she could have been too busy, ill, forgot, etc.), but I still allowed that interpretation to validate some dark thoughts circling my brain. I was driving a fast car into a very dark tunnel.

I worked myself into such a lather over this issue that I even got kicked out of a longstanding advocacy group I’d been in for being too intense! I hadn’t intended to say anything about this issue to the group, but once the floodgates opened, I exploded – and out of the group I was sent! That was a pretty good sign I needed to calm down and reach out more. I wasn’t in the mood for listening, though.

reaching out

I failed to fully reach out.

So off I went with the #MEAction blog. Only later did I realize that I ended up doing exactly the same thing I’d accusing #MEAction of doing. I’d suggested they were not playing with Solve M.E. (something I didn’t, and don’t know, is true) and here I was not fully extending my hand to #MEAction.

Plus, if #MEAction wasn’t playing with Solve M.E., at least they were being quiet about it. Here I was putting out a hard-hitting blog on a website with a pretty wide readership without letting them see it and respond to it first. It was kind of mind-boggling.

It’s a lesson for me about getting so wrapped up in something that I fail to see or fully attempt to understand the other side. (A good lesson for advocacy, in general).

I have a commitment to support and lift up the whole community and I lost track of that commitment. The blog was divisive in ways it didn’t need to be. I apologized to Jen and Beth for not providing #MEAction a look at the blog beforehand, and I promised that will never happen again. I am committed to move forward in a way that gives all parties a say.

That doesn’t mean at times not asking hard questions – and not perhaps agreeing with the answers. Some people think we shouldn’t question our ME/CFS organizations, but every once in a blue moon, issues arise that should, I believe, be addressed. Everybody, after all, makes mistakes. I make mistakes (hence this apology). Organizations make mistakes. They are a part of life. We should not expect individuals or organizations to be perfect. The real mistake comes when we don’t recognize them and correct them.

I also want to apologize for accusing #MEAction of removing my Facebook post from their page. I regularly post Health Rising’s communications to Facebook pages, but #MEAction’s Facebook page appears to work a bit differently from the sites I usually post on. Visitors’ posts to #MEAction’s Facebook site get sent to another page, which is not visible from their front page. I had not encountered that before. When I asked an #MEAction staff member why the post was removed and didn’t get a reply, I assumed – there’s that dark side again – that my post had been intentionally removed. It had not been, and I apologize for accusing MEAction of doing that.

future for ME/CFS

I hope we can move on and work together to build a brighter future for ME/CFS.

I also want to be clear that I do not request nor even want an explanation from #MEAction regarding the concerns I raised. Raising those concerns was enough. For me, the post is complete as it is, and my hope is that we can move on.

I also want to reiterate that the issues I raised in no way reflect on the many good works #MEAction is doing. My research for the post uncovered for me a creative organization working in multiple ways to support the ME/CFS community.

Shortly after the article was posted, I finally did reach out to Jen (a bit late!) and she reached back – in a remarkably graceful manner for such a difficult time. I want to thank her for her generosity and understanding during that call.

*That original blog made its point. In the interests of moving on, I’ve removed it from the Health Rising website.


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