The success of #MEAction – to achieve health equity for people with myalgic encephalomyelitis – is in the hands of hundreds of volunteers around the world who commit themselves to a vision, and give as much energy as their bodies allow to make it a reality. The work is ongoing, and often tedious, and we are awed by the time, energy and strength of spirit that our advocates put forth to fight for change.
To launch our monthly series to showcase the work of such incredible advocates, we chose to interview Gail, who co-chairs #MEAction’s Congressional Advocacy Committee.
Gail has been integral in establishing our organization’s congressional advocacy work. She has been the force that has kept the work moving forward. She has a keen eye for detail and strategy, and is one of the key players behind many of the calls-to-action that have resulted in Congress sending letters to the National Institutes of Health to inquire about its work on ME/CFS; and two requests from several dozen representatives that favorable language about ME/CFS be included in the appropriations report for the ’18 and ’19 budgets.
Gail has helped prepare for our spring advocacy weeks in Washington, D.C., training other advocates to speak about the dire situation of people ME before their representatives. At anytime of the week, you’ll find Gail making phone calls, writing emails and working on documents – all to lay the groundwork for building relationships with members of Congress to join our fight for health equality.
What made you want to get involved with #MEAction advocacy?
For a good portion of my life post- ME, I was reasonably healthy. During those periods I wanted to feel normal, make up for lost time, and forget about ME. I truly didn’t think about the larger picture.
But after a particularly serious relapse in 2013, I vowed to myself that if I improved enough, I would become an ME activist. #MEAction seemed like a place where I could contribute my skills and knowledge of the federal government and, at the same time, help build an organization.
Tell us about your experience with this advocacy work. What has been the highs and lows?
My biggest and constant high is the people I’ve gotten to know. What an amazing community #MEAction has helped catalyze. The warmth, support, and commitment is over the top. And having an amazing co-chair to do this with has been both rewarding and essential.
Another high is seeing that my legal/federal government background has proven to be so useful for Congressional advocacy. Once I retired, I put those skills to pasture but I’m so happy to be able to call upon them again for something I feel so passionate about.
The lows. The gap between where we are and where we need to be to restore our health and achieve true resources parity. And having a movement dependent upon very sick people/volunteers and lacking the staff and financial resources of a traditional non-profit is so frustrating and painful. Every day we struggle to strike a balance between our health and our compelling drive to effect change. Hopefully, we will soon get to the point where at least the severely ill volunteers will be confident that there is a critical mass of people taking on the fight, relieving the pressure on them.
From the Congressional action perspective, I’d say two challenges leap out. One is convincing members who say they’re with us that general support of National Institutes of Health (NIH) budget increases is not the same thing as supporting ME. The other is getting Republicans to support our cause. I certainly get that healthcare is political dynamite, but that a disease appears to be a partisan issue is truly disheartening. Only 1 of 44 signers of the recent House letter about appropriations for next year was Republican.
What is your story with ME? What was life like before you got sick?
I came down with ME twenty years ago after my third bout with mono. While I was quite ill the first two years, I never fell into the severely ill category. I kind of realized it at the time (but even more so now) that I was extremely fortunate in several respects. First, I was diagnosed within a year or two and told that I had to take a long leave from work and not try to push through anymore. I was always taken seriously, although it is true that the doctor who diagnosed me wouldn’t treat me unless I agreed to see a therapist to explore the purported personality traits that had contributed to my getting ME! Second, my federal agency was also very supportive in giving me leave, letting me work from home a lot, etc. I eventually had long periods of functioning fairly normally. Then I had a major relapse five years ago after a trip abroad. But, again, I was very lucky and able to be seen at the Open Medicine Institute fairly quickly. Antivirals have been a big help. Between relapses, I’d say I”m at 80 percent functional.
What gives you hope?
There’s no going back. We’re on fire. More and more people are joining the movement. Just within the last month, several fabulous volunteers have come on board the Congressional team with the time and energy to take on real responsibilities and allow us to expand our vision. We’re establishing the infrastructure to do a lot more.
Another thing that makes me feel good is that #MEAction has a solid relationship with independent advocates and organizations such as the Solve ME/CFS Initiative and the Open Medicine Foundation. We have been able to share and focus on common goals, avoiding the divisiveness that would undercut our efforts.
I think it is critical that anyone with ME puts their own health first and use their precious “able” hours to find the joy they can. As much as I desperately want all the volunteers we can get to join #MEaction, I hate seeing so many severely ill people suffering even more because they pushed beyond their boundaries in their efforts to be change makers. The drive when you’re fighting for your life is so strong, yet the risk of doing too much is so high. Start small, not large.
I’m pontificating here but this is a daily struggle for me as well. I think I’m pretty good at building leisure activities into my life but I’m terrible at setting limits. I vow that I will not “work” on days x, y, z or at night, and, yet, there I am reading and responding to my emails. As I verbalize this here, I am again vowing to stick to those boundaries!
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the