By Rivka Solomon
Frustrated with the lack of movement on the national level to help people with ME (Myalgic Encephalomyelitis), also known as ME/CFS, many advocates are focusing more on the city and state level.
Specifically, there has been a push to secure city and state proclamations or resolutions for ME awareness, as well as an effort to "light up" city halls in blue. We see these as a smart strategy for raising local awareness about this debilitating disease. The list of proclamations that have already been secured is found here.
This year, inspired by the work of earlier activists, as well as the 2017 national advocacy effort co-led by Solve ME/CFS Initiative and #MEAction, more ME advocates are using these proclamation initiatives to leverage as much as they can out of May 12th, International ME Awareness Day.
With that in mind, in March 2017, Charmian Proskauer, the President of MassCFIDS/ME & FM Association, the oldest state ME/CFS organization in the country, and I approached Massachusetts Governor Charlie Baker's office. We asked if they would issue us a State Proclamation for an ME Awareness Day on May 12th. If we were to get it, it would be Massachusetts's first such state proclamation.
Luckily, we had a prior success we could point to in our initial letter to the Governor: Only a few months earlier, western Massachusetts ME activists and I requested and secured a city proclamation from the Mayor of Northampton. It is found here, and is mentioned in this news article. Other ME advocates also had recent state proclamation or resolution victories we could point to, including in Alabama, Georgia and Illinois.
To our delight, the Massachusetts Governor's office granted our request. In the end, it required some back and forth with the staff on timing and exact wording of the proclamation, but we got it! And, to our relief, we got it in time for a May 12th deadline.
Now we were eager to get some type of photo opportunity (known as a "photo op" in the political world) with an elected official at the State House. We figured if we could secure that, we could then disseminate the photo to media and elsewhere, using it to raise awareness about ME. Plus, a photo with an elected official would add legitimacy to our cause, especially if we could get the official to post it to their own social media accounts.
It was more work to try to set up the photo op, but again, it was successful. In fact, it surpassed our expectations. In the end, on May 9, 2017, at the Massachusetts State House in Boston, a group of ME advocates and allies held a very productive meeting with the Massachusetts Lt. Governor Karyn Polito and the State House Senate President, Stan Rosenberg, and their staff. This was a real coup!
PHOTO: L to R: Rivka Solomon, Rick Glassman (Advocacy Director, Disability Law Center, Boston), Dr. Michael van Elzakker (ME/CFS researcher MGH and Harvard Medical School), Sen. Cynthia Creem, Robert Price, Senate President Stan Rosenberg, Lt. Governor Karyn Polito, Charmian Proskauer (President of Massachusetts CFIDS/ME & FM Association), Dmitri Gridnev (representing Rep. Ruth Balser), Alina Kaminsky, Leah Williams, Elizabeth Potter, Robert Robitaille, Kathy Robitaille, Nancy Smith (those without titles are all members/volunteers representing Massaschusetts CFIDS/ME & FM Association)
Originally, the time with Polito and Rosenberg, two of the highest ranking elected officials in the state, was scheduled as a short five minute photo op. After all, those are not as hard to come by as an actual meeting.
But with the photo op now secured, we quickly went about trying to morph it into something more by adding in a short introductory meeting with the staffers in charge of "constituent services" and health policy at the office of the powerful Senate President. We suggested to the staffers that we come in 15 minutes prior to the photo op, just long enough to allow for introductions. We explained that we hoped this meeting could be a precursor to a longer meeting at a later date, where we would then present our official "asks" (asks are political lingo for the actions you would like the elected official take). The Senate President's staff agreed to this 15 minute meeting.
On May 9th, more ME patients, advocates and allies showed up than originally expected — 11 total — but it worked out perfectly. We sat around an enormous table in an impressive room in the historic State House with the Senate President's health policy staffer, and we met with him for much longer than we had originally expected. The meeting lasted half an hour with advocates going around the table introducing ourselves and describing our connection to ME.
The stories were personal and tragic. Patients and family members talked about struggling for decades, often in isolation, with a stigmatized illness that got little respect from the federal government, the medical community and media. Allies who attended, including a researcher from a prestigious Boston hospital, and a disability rights lawyer who advocates for people with ME, spoke eloquently about the legitimizing science of ME and the hardships people with ME face.
We explained to the staffer that securing state proclamations and resolutions for ME is a grassroots effort to raise awareness about the lack of health equality for people with ME, many of whom have spent decades homebound and bedridden with little or no assistance.
We also explained how ME is commonly known as Chronic Fatigue Syndrome — but that many found it a belittling name. We articulated that it is a devastating disease with no diagnostic test, no FDA-approved treatment, no cure and little federal research funding.
When we told the staffer that ME disables 28,000 Massachusetts residents, up to 2.5 million Americans and 17-20 million worldwide, he seemed to take in the enormity of the situation.
After about 30 minutes, in walked the Lt. Governor of the state accompanied by the influential Senate President. They appeared surprised to find so many of us there. Perhaps because of this, instead of rushing to do the photo op they sat down to listen and, to our delight, ask probing questions for about 10 minutes. The Lt. Governor specifically asked about the fact that 75-85% of those with ME are women (she was reading from the fact sheets we brought); and with that, she honed right in to the sexism that has contributed to the disease being neglected for decades.
In the end, for over an hour, we ME advocates had the opportunity to explain to these high up government representatives and their staff just how hard it is to live with the severe neuro-immune disease that is ME, and how it impacts the lives of people with the disease and their families. At the end of the meeting, the Senate President told Charmian he wanted to hear more about the needs of our community and how the state might help. Thrilled, we are now in the process of scheduling a second meeting with his office.
In another success, the day after the meeting, The State House News Service took our press release and re-wrote it into an article which they disseminated to most Massachusetts newspapers. Right away, one newspaper picked up and ran the story. We were disappointed to not get more media attention, but we were happy to learn that the Senate President planned to tweet about ME on May 12th.
All in all, we feel quite satisfied with this initial start of our Massachusetts State House strategy. We know it is just the beginning of our work there, but we are convinced that employing a local and state level strategy to get help for our community is a sound one — and one that can yield much faster results than trying to work with the more cumbersome and recalcitrant federal government.
About the author: Rivka Solomon (@RivkaTweets) lives in Massachusetts and is a volunteer at MassCFIDS/ME & FM Association and #MEAction. Both organizations are seeking volunteers to do the important work of fighting for people with ME.