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Rivka Solomon: Recognizing the enormity of Myalgic Encephalomyelitis

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Frustrated with the lack of movement on the national level to help the up to 2.5 million people in the United States with the devastating neuro-immune disease ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome, or ME/CFS, many advocates are focusing more on the local and state level.

So 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, the color for ME awareness.  See this link:

We see these efforts as a smart strategy for raising local awareness about this debilitating disease. A list of proclamations  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 have been using these proclamation initiatives to leverage as much as they can out of May 12, International ME Awareness Day.

With that in mind, in March,  Charmian Proskauer, the president of MassCFIDS/ME & FM Association, the oldest state ME/CFS organization in the country, and I approached Massachusetts Gov. Charlie Baker’s office. We asked if they would issue us a state proclamation for an  ME Awareness Day for the Bay State on May 12. If we were to get it, it would be Massachusetts’s first such state proclamation.

Luckily, we had a few prior success we could point to in our initial letter to the governor: Only a few months earlier, western Massachusetts ME activists and I had 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.

Lastly, we told the governor’s office, just a few months earlier, at a packed meeting, that Sen. Ed Markey (D.-Mass.) had publicly declared his commitment to advocate for people with ME. His first step was to sponsor a congressional briefing, offering any interested Capitol Hill health-policy staffers an opportunity to learn more about ME.

To our delight, Governor Baker’s office granted our request for the proclamation. In the end, it required some back and forth with the staff on timing and exact wording of the proclamation, but we got it!  See this link. And, to our relief, we got it in time for a May 12 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 that  if we could secure that, we could then disseminate the photo to news 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  Lt. Gov. Karyn Polito and  Senate President Stan Rosenberg, and their staff. This was a real coup!

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 (picture of it below) 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 before the photo op, just long enough to allow for introductions. We explained that we hoped  that this meeting could be a precursor to a longer meeting at a later date, when 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 9, 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 State House with Mr. Rosenberg’s  health-policy staffer, and we met with the senate president for much longer than we had originally expected. The meeting lasted half an hour, with us 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 news 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 that 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 that ME is commonly known as Chronic Fatigue Syndrome — but that many found it a belittling name. We explained 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 million-20 million worldwide, he seemed to take in the enormity of the situation.

After about 30 minutes, in walked  Lt. Governor  Polito, accompanied by  Senate President Rosenberg. They seemed 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 lieutenant governor asked about the fact that 75-85 percent of those with ME are women (she was reading from the fact sheets we brought); 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  government leaders and their staff just how hard it is to live with the severe neuro-immune disease that is ME, and how it affects the lives of not only the direct victims but also of their family members. At the end of the meeting, the senate president told Charmian that he wanted to hear more about the needs of our community and how the state might help. Thrilled, we are now 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 that 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 the Senate president tweeted about ME on May 12.

All in all, we feel quite satisfied with this start of our  State House strategy. We know that 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.

Yet even so, we will continue our advocacy efforts on Capitol Hill. In fact, just last week saw a new victory: Massachusetts Congressman Jim McGovern agreed to fight for people with ME at the federal level. And Senator Markey held his congressional briefing on ME with staffers from around Capitol Hill attending. Senator Markey opened the briefing, which you can watch  here. 

Not unlike earlier battles to get other health conditions recognized as serious diseases, such as Multiple Sclerosis and Parkinson’s, the battle to help ME victims will make big progress. In the near future, people who are struggling to live with the devastating illness that is ME will be able to leave behind, with great relief, the 30 years we spent in the shadows, mistreated and neglected by the medical community and government.

Rivka Solomon (@RivkaTweets) lives in Massachusetts and is a volunteer at MassCFIDS/ME & FM Association and #MEAction. Both organizations seek volunteers to do the important work of fighting for people with ME. Ms. Solomon is  writing a book about her 27 years with ME, much of it spent bedridden and homebound.

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