Rivka Solomon: Mass. recognizes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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.

In the Massachusetts State House: 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. Gov. 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).

Llewellyn King: How to get around Washington's arrogant gatekeepers

There must be a special place in hell for the gatekeepers -- with a special circle for the Washington gatekeepers. These nonentities man the gates in Washington and, by design or simple obduracy, pervert the purposes of government.

They also fuel the lobbying industry. The name of that game is “access” and it is sold openly. If you have worked on Capitol Hill, or in a Cabinet secretary’s office, bingo! You have access.

Chances are the general public, journalists or others who need to speak to the principals, whether elected or appointed, will not get a look in because of the gatekeepers: those busybodies who take it upon themselves to affect things by blocking messages or meetings.

In Washington at present, the gatekeepers have more power than I have seen in 50 years. You have the constitutional right to petition your elected and appointed officials. But that right is abrogated if you cannot get through the door.

That is where the lobbyists come in; they can get through the door and influence the principals.

None of this is new, but there is a new dimension. Time was when you could get into federal buildings and walk around. That meant you had a chance of literally bumping into people you might want to buttonhole. Now surly guards demand appointments and IDs. A chance encounter with an assistant secretary is no longer in the cards.

There are channels that are harder for the new face to navigate than for those who have access. As most of us do not have this means of entry, we must settle for not being heard or getting routine rejection from the staffer manning the gate.

I have never known a time when the bureaucracy was so indifferent to the public when it comes to access. If a reporter does not cover a particular department regularly, your request for an interview will be sidelined or ignored. And if you represent a publication that does not have the weight of The New York Times or The Wall Street Journal, you will be dismissed.

Friends of mine work who for a charity dealing with a terrible and under-reported disease, Myalgic Encephalomyelitis, have found the gatekeepers not only unhelpful but obstructionist at the Department of Health and Human Services and one of its agencies, the National Institutes of Health.

When I managed reporters in Washington, I urged them to find ingenious ways around the gatekeepers, such as riding back and forth on the subway that carries members from the Capitol to their office buildings. Eventually, you would have a word with a congressman. And, surprise, surprise, he or she would be happy to oblige, unaware of the barriers erected around them by their gatekeepers. I have known senators who would sit in their offices hoping to see a new face, while their staffers turned them away.

Unfortunately, the phenomenon of out-of-control gatekeeping is not confined to the government and Congress. It is now rampant throughout society.

But it is the isolation of government from the people that is damaging and pernicious. It is that which creates and feeds the wrongs of lobbying and establishes the power of the elites.

Officialdom knows that saying “no” has more power than saying “yes.” The gatekeepers, who decide who should be heard and who should be denied, have always been with us. Witness the courts of Europe.

To get around the Washington gatekeepers, here are some extreme measures:

· Get a home address for the person you want to talk to -- there are many services that will sell you armfuls of personal information, including home address and telephone numbers.

· Join the person's church -- public piety is in.

· Go wild on social media -- shame the person.

You could, I suppose, try sending a drone with a message through the window of the unfortunate one you have been denied access to. But I would not advise that, just yet.

Llewellyn King ( lewellynking1@kingpublishing.com), based in Rhode Island and Washington, D,C., is executive producer and host of White House Chronicle, on PBS, and a longtime publisher, columnist and international business consultant. This piece first ran on InsideSources.

Overseer’s note: I can testify to the fact that it is much more difficult now to talk to government officials in Washington than when I worked there from time to time in the ‘80s and ‘70s --- Robert Whitcomb.

Llewellyn King: The case for American knighthoods

I may have a faded English accent, but I am a true blue American, and I have been for five decades. I do not think that everything that comes across the Atlantic from Britain ought to be adopted here.

I do not believe that there is any virtue in driving on the other side of the road. And I do not believe that every British television program is unassailably wonderful.

While I think that the House of Commons is a fabulous entertainment, but it is not necessarily the best way to govern the United Kingdom, particularly in this time of nationalist stress. I have lived in London, but I do not yearn to take up residence there again.

However, there is one feature of British life that I think would benefit the United States substantially: the introduction of an honors system to reward exemplary people in our society.

What titles we have in the United States are clung to. Former senators still call themselves senator; governors, governor; and ambassadors, ambassador. A few Ph.D.s persist in calling themselves Dr., and most people would like to have a title other than Mr., or Ms. in front of their name. Even firmly republican countries in Europe, like France and Italy, have clung to their aristocratic titles.

Well, we do not want an aristocracy here, but it would be grand if we could single out contributions to our well-being with a nifty title. Various eminent Americans have been awarded honorary titles, but they can not use them. What is the point of a title, if you can not call a restaurant and say, “Sir John Doe, here. I would like a table by the window.”

Here are some exceptional people who I would make honorary knights or dames:

Arise, Sir Brian Lamb, creator of C-SPAN and a massive contributor to television and the understanding of American politics.

Arise, Sir David Bell, a dedicated general practitioner, who treats victims of Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, in the northwest corner of New York state. Bell has tended indigent patients since the disease broke out in the village of Lyndonville, N.Y., in 1985.

Arise, Sir Joe Madison (The Black Eagle), activist and broadcaster, who has championed the cause of justice for African-Americans and has fought modern slavery in Africa.

Arise, Dame Marin Alsop, music director of the Baltimore Symphony, who is a visionary conductor and a great contributor to the public good through her promotion of American music and classical music, her mentorship to young musicians, and her founding of OrchKids, a music education program for inner city Baltimore children.

Much of the British system of honorary titles should be left in Britain. Twice every year, on the Queen’s Birthday and at New Year, a list of new honorees is published, and long-serving but unrecognized civil servants and military personnel hope to be on the list. The types of honors include: Knights and Dames, The Order of the Bath, Order of St. Michel and St. George, Order of the Companions Honor, and Orders of the British Empire.

Just in case you are getting confused, these honors do not include the ancient titles of duke, marquess, earl or lord. But the monarch does mint a title now an again, like Her Highness Duchess of Cambridge, conferred on Prince William’s wife, Kate.

No, you have to keep the honorary title simple: knight or dame, awarded for exemplary achievement or service. On my honors list I would include distinguished people in the arts and sciences, educators, entrepreneurs and inventors, humanitarians, retired politicians (provided  that they promise not to run for office again). I think we should have Sir Bob Dole, Lady Olympia Snowe, and, if she were alive today, Lady Barbara Jordan.

On my watch list for recognition are Warren Buffett, Elon Musk, Wynton Marsalis and Dean Kamen. If you would want to recognize someone in journalism, Sir Llewellyn King has a nice ring.

Llewellyn King (lking@kingpublishing.com) is a long-time editor, writer, publisher and international business consult. He is also exeeutive producer and host of White House Chronicle, on PBS.

Llewellyn King: Chronic Fatigue Syndrome takes victims hostage

  T.S. Eliot may have had it wrong: The cruelest months are November and December, when the holidays are upon us, not April. For those who are broken – broken in all the ways that people can be broken -- the holidays are a special hell.

The bedridden, the incarcerated, the mourners, the maimed from accidents, disease or wars, the heartbroken – either those who have had their hearts broken by lovers or others, or those who have had no one in their lives -- endure the holidays in anguish, hurting even more than the permanent hurt that has become their lives.

You may find the broken in the corners at parties, sitting glumly at the table. But the real suffering is unseen; the real sufferers cannot make it to the table – or dare not for fear that the outing will cost them later. The brave face can mask the deepest hurt.

They are the permanently sick. Those who will be sick today, sick tomorrow and sick in the next holiday season as they were in the last.

There are people who suffer constant illness in all the myriad ways that a body can be afflicted or fail. No afflicted cohort is more deserving of understanding than another; none has a greater call for science to redouble its efforts for a cure than another.

But the effort to find cures is woefully skewed by the institutions of medicine, by the pharmaceutical companies and by those diseases that have celebrity champions, informing the public and the politics of research institutions. Yes, there is always politics and so there are winners and losers. Celebrities can help: Elizabeth Taylor did so for AIDS, Jerry Lewis for Multiple Sclerosis, and Michael J. Fox is doing so for Parkinson’s disease.

I write and broadcast about one disease in particular, Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome. It is a disease largely orphaned by the medical community which has no test for it -- cannot say with assurance that a patient has it until months of debility validate that it is ME. In medical parlance, there are no biological markers. What is known is that it is almost certainly a disease of the immune system, and that there is no cure. It also has no celebrity benefactors and no lobby in Washington.

I think of it as a terrorist disease, which takes its patents hostage and confines them in an alternative world of muscle pain, headaches, diarrhea, dizziness, brain fog and almost permanent collapse. Some are  hurt by light, others by sound.

One sufferer says that having ME is like being an engine without fuel: Your tank is empty and you hurt in new and refined ways almost daily. Sufferers go through long periods of disability where they cannot function at all. “I thought I was already in my coffin,” another told me.

The joys are few and sometimes from little things, like a pet or nature observations. One sufferer, Elisabeth Tova Bailey, wrote a wonderful book, The Sound of a Wild Snail Eating. It is about the habits of a snail in a terrarium next to her bed, during two years of sustained collapse.

This is a disease that steals lives, chains them up in dungeons of despair where loneliness and suffering reach “excruciating proportions,” according to my colleague, Deborah Waroff, whose life was snatched by this disease 25 years ago. Together Waroff and I established a YouTube channel on ME, mecfsalert.

The loved ones, and the caregivers – if there are any -- are enslaved by this disease, seeing those they care about in a place where neither love nor medicine can reach them. Literally and figuratively, they must fluff the pillows once again and mouth the empty words -- lies really -- of encouragement that we all utter in the face of hopelessness. Those who live on their own, often in poverty and sloth they cannot ameliorate for themselves, suffer what one woman told me was such sustained loneliness that she prayed nightly for death.

Thanksgiving, Christmas, Hanukah, Kwanzaa and New Year's Eve are on the way. Sadly, while the rest of us are suffused with joy, the permanently ill take stock and find their lives are terribly wanting and isolated on the holidays.

Llewellyn King (lking@kingpublishing.com) is executive producer and host of “White House Chronicle” on PBS.