Llewellyn King: ‘Long COVID’s’ baffling sister

CFS vitim demonstrates for more research

WEST WARWICK, R.I.

“Long COVID’’ is the condition wherein people continue to experience symptoms for longer than usual after initially contracting COVID-19. Those symptoms are similar to the ones of another long-haul disease, Myalgic Encephalomyelitis, often called Chronic Fatigue Syndrome.

For a decade, in broadcasts and newspaper columns, I have been detailing the agony of those who suffer from ME/CFS. My word hopper isn’t filled with enough words to describe the abiding awfulness of this disease.

There are many sufferers, but how ME/CFS is contracted isn’t well understood. Over the years, research has been patchy. However, investigation at the National Institutes of Health has picked up and the disease now has measurable funding -- and it is taken seriously in a way it never was earlier. In fact, it has been identified since 1955, when the Royal Free Hospital, in London, had a major outbreak. The disease had certainly been around much longer.

In the mid-1980’s, there were two big cluster outbreaks in the United States -- one at Incline Village, on Lake Tahoe in Nevada, and the other in Lyndonville in northern New York. These led the Centers for Disease Control to name the disease “Chronic Fatigue Syndrome.”

The difficulty with ME/CFS is there are no biological markers. You can’t pop round to your local doctor and leave some blood and urine and, bingo! Bodily fluids yield no clues. That is why Harvard Medical School researcher Michael VanElzakker says the answer must lie in tissue.

ME/CFS patients suffer from exercise, noise and light intolerance, unrefreshing sleep, aching joints, brain fog and a variety of other awful symptoms. Many are bedridden for days, weeks, months and years.

In California, I visited a young man who had to leave college and was bedridden at his parents’ home. He couldn’t bear to be touched and communicated through sensors attached to his fingers.

In Maryland, I visited a teenage girl at her parents’ home. She had to wear sunglasses indoors and had to be propped up in a wheelchair during the brief time she could get out of bed each day.

In Rhode Island, I visited a young woman, who had a thriving career and social life in Texas, but now keeps company with her dogs at her parents’ home because she isn’t well enough to go out.

A friend in New York City weighs whether to go out to dinner (pre-pandemic) knowing that the exertion may cost her two days in bed.

I know a young man in Atlanta who can work, but he must take a cocktail of 20 pills to deal with his day.

Some ME/CFS sufferers get somewhat better. The instances of cure are few; of suicide, many.

Onset is often after exercise, and the first indications can be flu-like. Gradually, the horror of permanent, painful, lonely separation from the rest of the world dawns. Those without money or family support are in the most perilous condition.

Private groups -- among them the Open Medicine Foundation, the Solve ME/CFS Initiative, and ME Action -- have worked tirelessly to raise money and stimulate research. The debt owned them for their caring is immense. This has allowed dedicated researchers from Boston to Miami and from Los Angeles to Ontario to stay on the job when the government has been missing. Compared to other diseases, research on ME/CFS has been hugely underfunded.

Oved Amitay, chief executive officer of the Solve ME/CFS Initiative, says Long COVID gives researchers an opportunity to track the condition from onset and, importantly, to study its impact on the immune system – known to be compromised in ME/CFS. He is excited.

In December, Congress provided $1.5 billion in funding over four years for the NIH to support research into Long COVID. The ME/CFS research community is glad and somewhat anxious. I’m glad that there will be more money for research, which will spill into ME/CFS, and worried that years of endeavor, hard lessons learned and slow but hopeful progress will be washed away in a political roadshow full of flash.

Ever since I began following ME/CFS, people have stressed to me that more money is essential. But so are talented individuals and ideas.

Long COVID needs carefully thought-out proposals. If it is, in fact, a form of ME/CFS, it is a long sentence for innocent victims. I have received many emails from ME/CFS patients who pray nightly not to wake up in the morning. The disease is that awful.

Llewellyn King is executive producer and host of White House Chronicle, on PBS. His email is llewellynking1@gmail.com. He’s based in Rhode Island and Washington, D.C.

whchronicle.com

Brain imagining, comparing adolescents with CFS and healthy controls showing abnormal network activity in regions of the brain

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: Gifts to us from 'The Overcomers'

Certain gifts are given to us year in and year out. They are the gifts that keep on giving and they come, to my mind, from people I call “The Overcomers’’

This Christmas week A. A. Gill, one of Britain's most extraordinary newspaper columnists, died at 62.

Gill was nominally a food critic. He used that position as a launch pad for some of the most entertaining and acerbic writing anywhere.

His column in the Britain's The Sunday Times was a weekly joy. But Gill didn’t get there easily. First, he nearly died from alcoholism at 30.

He wrote a book about it.

Gill straightened out his drinking, but he never straightened out his awful spelling and severe dyslexia. He overcame them largely by phoning in his columns.

Gabriel Garcia Marquez, one of the greatest literary talents to come out of South America, struggled with terrible spelling, which he detailed in his extraordinary autobiography, Living to Tell the Tale. But it didn’t stop him from authoring masterpieces like One Hundred Years of Solitude and Love in the Time of Cholera.

Willard Scott, who had a successful career in radio in the Washington, D.C., market before making it as a personality and weatherman on NBC's Today show, suffered acute stage fright. He testified before Congress so that his experience would help others.

But in my random selection of overcomers, the biggest is Laura Hillenbrand, the author of two nonfiction bestsellers, Sea Biscuit: An American Legend and Unbroken: A World War II Story of Survival, Resilience and Redemption. Both were massive works of research and narrative writing.

The back story, though, is one of suffering, terrible unrelenting suffering. Hillenbrand is afflicted with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome.

This is a disease that knows no mercy; a life-sentence disease without a cure and no proven therapy. It punishes sufferers for any effort, even mild exercise, condemning them to bed, often for days. The symptoms are extreme fatigue, migraine headache, aching joints, hyper-sensitivity to light and sound, and dysphasia. Some patents are bed-ridden for years.

Hillenbrand missed her own wedding because she was unable to walk downstairs or to look down. Yet, this overcomer researched and wrote two extraordinary books. Just as important, in a seminal July 7, 2003 essay in The New Yorker, she told her own story, comforting fellow sufferers and prompting the medical world to take ME more seriously.

My favorite overcomer was a waiter at the National Press Club in Washington, D.C., known simply as Mr. Blue. He was a man of such innate dignity that everyone called him “Mister,” and no one seemed to know his first name.

Blue had had a hard life as an African-American with no education. In fact, he was illiterate and I was one of the few to find out.

At the club in the 1970s, when I knew Blue, the waiters carried loose, paper checks on which members wrote their orders and club numbers. Blue survived by feats of memory, remembering who had written out which check by keeping them in order. One day, his system failed: He dropped his checks. Mr. Blue was distraught to tears.

Shame is a powerful censor and, like most censorship, it neither helps the sufferer, nor does it do anything for the body politic. No one wants to be famous for their inadequacies or their sickness. But going public comforts and is a gift. It is the gift, so important in the holidays, of saying: You are not alone.

In that spirit, I have to go public with this: I am, for a broadcaster, a bad sight-reader. I have mild dyslexia, and I've been humiliated by my terrible spelling all of my long life in journalism. Happy holidays!

Llewellyn King, based in New England and Washington, is executive producer and host of White House Chronicle, on PBS, and a veteran publisher, columnist and international business consultant. His e-mail is llewellynking1@gmail.com. This piece first ran on Inside Sources.

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.