White House Chronicle

News Analysis With a Sense of Humor

Memo: Mothers and Others March on Washington

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To: ME/CFS Community

From: Llewellyn King

Date: June 8, 2014

Subject: Mothers March on Washington

Since I wrote and spoke about the need for a Washington presence for ME/CFS I’ve received many e-mails which ask, in essence, what next?

Here is a modest proposal of what I think should be done, and what can be done with a minimum of effort and a big impact: schedule a Mothers March at the U.S. Capitol on May 12, 2015.

I envisage about 100 mothers of ME/CFS sufferers walking through the Capitol wearing distinctive sashes; a very dignified demonstration — with lots of handouts for anyone who wants one.

Marchers don’t have to be confined to mothers. But if mothers predominate, there will more media attention than if it is just a general demonstration. I think if everyone is wearing, say, white with a blue sash, and women far outnumber men, that will have impact.

There is a long and effective history of mothers en masse changing history: South Africa and Northern Ireland are two examples.

The aim of this demonstration should be to inform the 113th Congress and serve notice on the agencies of government that the ME/CFS community wants parity in research dollars with other diseases that are more in the public eye – and right now.

This demonstration – and there is nearly a year in which to plan it — should be seen as the beginning of something big and enduring, not just a one-time or even an annual event.

My thinking is: If we can generate the right publicity in the major media (and I mean across the spectrum, from NPR to the big newspapers), we may attract the patronage of a major foundation. This would support the creation of a national association for ME/CFS, devoted to lobbying and educating on behalf of the disease until it is established as a medical priority in Congress, the administration and the media. The need is urgent.

I was once sent a wise saying by the mystic Rabbi Nathan of Bratislav which said, in effect, “You will never leave Egypt, any Egypt, if you start by asking how will I make provision for the journey?” There is a life lesson in that — and a lesson for the ME/CFS community.

Maybe a benefactor with time and resources will emerge to organize this mothers demonstration. But, if not ,why not do it anyway?

Suppose right now you decide to go to Washingon, and make your way to Capitol Hill, wearing white with a blue sash (I choose blue because it stands out against white) and walk the halls of Congress, handing out literature that you have downloaded. That is the bare minimum, and it’ll have an impact.

If an organization emerges before then, so much the better, but it is not essential. But as a general proposition, a Committee of 100 is a well-tested, public-pressure device.

The thing is to commit, as individuals, to doing it now.

There is nearly a year to build passion, to get the local CFIDS associations engaged and to make the grand, seminal event of the Mothers March happen. If not en masse, go alone. But go. Start the movement with your white outfit and a blue sash, scarf or shawl.

The best organizations start with determined, committed, like-minded individuals. The power of one is awesome once that person empowers herself or himself. A leaderless demonstration is not leaderless if everyone agrees.

You asked me what should happen next, and my answer always is “Start something, if you are well enough or if you are an advocate. Just start.


Commencement: What Graduates Won’t Hear

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No one having asked me to give their commencement address this year, I have decided to give it anyway. Here.

I have been reading reports of these addresses, mostly given by public figures, some stirring debate, demonstrations and boycott. All in all, the passion is wasted because most of these addresses are not worth the fuss, the fee or the honorary degree. They occupy the unhappy space between a Sunday sermon and a sales meeting. Having exhorted the students to heights of moral rectitude they urge on them a manic menu for striving; of getting to the top of the class of life by making a lot of money and keeping America in front of China, India and, on a good day, Germany.

To read these addresses is to be told that life is a marathon in which most of the participants are from Asia and the United States is on the slippery slope to oblivion, and it missed the starter’s pistol shot.

With fine irony, it is many of those who have made a hash of national policies and foreign adventures who feel the most obliged to urge the bewildered young people of the class of 2014 to sally forth and do great things. I would humbly suggest they sally forth and live their lives: less striving, more living.

My commencement wisdom:

Do not be defined by where you work, but by what you do. Working for the dominant institution in your field may sound swell at a cocktail party, but it is almost guaranteed to be less fun and less invigorating than a lesser institution, which is not inhabited wholly by strivers. Strivers can be very tedious.

The same goes for the institution you are leaving. Worry less about where you studied and more about what you learned.

The best thing I can advise any young person is to have a well-stocked mind. It is a bulwark against adversity, a comfort in disaster, and a place where you can find strength all the days of your life; in success and disaster, in helping to heal a broken heart – and there are going to be broken hearts aplenty in this class, as there have been in all the preceding graduating classes.

Life has stages and it is worth knowing them, without being dictated to by them. In your twenties you will suffer Cupid’s arrow, the ecstasy and pain of love, make your professional mistakes, and begin the intriguing business of finding out who you are.

The thirties are the great decade: the idealism is intact, most of the mistakes are in the past, and you have the enthusiasm and energy to make your move in life. It is a golden decade when everything starts to come into focus.

The forties are for consolidating, watching children grow and deciding what is possible.

From age 50 on, you are in the harvest years. Harvest the rewards of being good at what you do, the respect of your peers, while as ever stocking your mind — the permanent joy of learning, and especially of learning that you have not taken the human pilgrimage alone.

I have known too many people who do not know the reward and sanctuary of reading. Prodigious readers, like Teddy Roosevelt and Winston Churchill, would read in the five minutes before a meeting, or while waiting for a call to come through. It was the secret life that balanced the public life.

My father was not a lettered man, and reading was not something that came easily for him. As result, he missed the great community that is open to all with the good fortune to know how to read.

Do not fence yourself in — and do not let others do it for you. Do not believe that you have aptitude for this or that on a hunch: Please find out.

I have made a living as a public speaker and broadcaster for many decades. But a lawyer, in a traffic case, once told me that she would not put me on the stand because she felt I was not good at speaking in front of people. The terrifying truth is that I accepted her judgment – and lost the case.

Besides being corralled by false knowledge of ourselves, the other great monster lying in wait for you is rejection. We all dread rejection, not just those who meet it constantly like writers and sales people. Fear of rejection is a great disabler; fight it, you are not unique that way. Treat “no” as the prologue to “yes.”

Good luck. — For the Hearst-New York Times Syndicate

Elite on Edge in Turkey

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ISTANBUL — The skyline of this most cosmopolitan of cities also tells the political narrative of Turkey and the strains that may decide its future. Minarets from a thousand mosques implore the skies in the name of Islam while multistory buildings proclaim the secular ascendancy that is the 20th century heritage of this country.

Modern Turkey — population 74 million — was the creation of Mustafa Kemal Ataturk who, with his band of "Young Turks," took the ruins of the Ottoman Empire and by force of will and vision decreed that Turkey would put aside Islamic governance and favor the secular ways of the West.

He left a powerful military that has acted, since the creation of the state, as the guarantor of the secular tradition he founded. When the government in the nation's capital, Ankara, has wavered, the military has stepped in.

Starting in 2003, a different kind of strong leader has dominated Turkish politics and has both swung the country toward its Islamic roots and brought about a decade of economic expansion. He is Recep Tayyip Erdogan, who heads the Justice and Development Party (AKP), an unashamedly Islamist-leaning political concoction.

Erdogan draws his strength not from the prosperous elites with their expensive apartments in Istanbul and their equally expensive summer homes in seaside resorts, like Bodrum on the Aegean, but from the pious rural peasantry, who have been forgotten in the rush to modernization.

As you move East in this country, you move away from this city with its stylish women and international stores to a land that is more religious and feels more threatened. Or go from the beaches of the Aegean, where tourist girls frolic topless, to a few miles inland where many women are covered from head to toe in black robes, and nearly all wear headscarves.

It is not just that Erdogan has found a neglected and distraught base of support in rural Turkey, but he is also an uncommonly attractive leader. The word "charismatic" is, in his case, truthfully applied.

Watch him on television and, even if you do not speak a word of Turkish, you can see why he has been politically unassailable.

Now his term as prime minister is about to come to an end, as he bumps up against term limits. He is expected to do as Vladimir Putin did in Russia, sit out a few years as president, which has become a more powerful office under a constitutional change.

He will leave behind a state that is more Islamist, prosperous and determined to be an even greater regional power than it already is.

But despite Turkey having the largest military in NATO, after the United States, and being a firm U.S. ally, the West cannot look to Turkey for axiomatic loyalty, as has been the case in the past. Erdogan has defanged his own military — which has been the guardian of the secular state — by appointing officers loyal to him, and loosened the once firm ties with Israel. He has largely abandoned any hope of Turkey being allowed into the European Union.

Turkey has priorities of its own. Just two of these are settlement in Cyprus that will allow Turkey to become a conduit of natural gas from the Eastern Mediterranean to Europe, and a settlement with the Kurdish minority after years of insurgency.

The large gas fields lying off the coasts of Egypt, Israel, Lebanon and Cyprus, have geopolitical ramifications for the Middle East and far into Europe — all the way to Russia.

Ataturk essentially held Islam at bay. He prohibited men wearing the brimless hats that Muslims favor for prayer, adopted the Roman alphabet, barred women from wearing the veil in public places and relegated religion to the mosques.

Erdogan has re-established religious rights and not discouraged Muslims to wear traditional dress, while pushing forward an industrial society. Sometimes, as with the recent mine disaster in Soma, where 301 miners were killed, the price of this push to free-market industrialization has been high.

Erdogan has been held accountable, but will almost certainly survive politically — as he has survived corruption scandals.

"The elites forgot about the people and he reached out to them," an observer, who has lived the elite life, told me.

One way or other, it is unlikely that we have heard the last of Erdogan when he leaves the prime minister's office in August.

He may not be another Ataturk, but he has modified the vision of the father of his country and left it straddling two visions — the way it straddles the Bosporus between Europe and Asia.— For the Hearst-New York Times Syndicate

Small Charities Tackle ‘Disruptive’ Cancer Research

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No diagnosis strikes fear into people as thoroughly as cancer. It is the sum of all fears when it comes to health.

My mother died in 1961, when treatments were few, in great pain from cancer of the uterus. Four treasured friends died of cancer more recently, but in equally awful ways; Barbara of bone cancer, Grant of colon cancer, Ian of brain cancer, and JoAnn of melanoma.

Cancer deserves its position as the most feared disease, even if it is not as lethal as it once was and many cancers can be treated. To know someone in the throes of cancer is to know something terrible. Heart disease kills more of us, but cancer is enthroned as the ultimate horror.

Yet we are, in some measure, winning the war on cancer; to medical science, it is less mysterious and more conquerable. But it has been a long battle against an implacable enemy.

The war on cancer is war with many theaters; cancer itself being a misnomer, as there are many cancers with very different profiles, rates metastasis and treatments.

So it is both puzzling and appalling that Congress has allowed funding for government biomedical research to languish and has made it subject to the blunt tool of sequestration. Less money means everything slows down; research projects are drawn out or cancelled, and scientists are discouraged.

Nothing is as fatal for research as uncertain funding. You cannot shut down a line of research and start it up again as funds become available: It blunts the picks.

Scientists at the hard-rock face of research cannot be expected to sustain commitment when they do not know if their research grants will be renewed in the next budget cycle. Lawyers can anticipate steady work, why not can cancer researchers? When we implore young people to study biomedicine, we are asking them to take up a career of uncertainty.

Enter the non-government funders, from giants like the American Cancer Society to small but determined outfits like the National Foundation for Cancer Research (NFCR).

This organization, according to its president, Franklin Salisbury, Jr., believes in “adventure funding.” Although he eschews the description, Salisbury’s efforts might be called seed funding at the genomic and molecular level; understanding the role of genes in cancers and finding the mechanisms that control cells. He emphasizes the gap between science and medicine, and the need to provide funding to bridge that gap.

Salisbury also underscores the need for regular funding, rather than large periodic and unpredictable infusions. His organization, founded in 1973 by his father, Franklin Sr., a creative entrepreneur, and Albert Szent-Györgyi, a Hungarian-born physiologist and biochemist who won the Nobel Prize 1937, has been keeping research alive for some researchers like Dr. Curt Civin of the University of Maryland Medical Center and Dr. Harold Dvorak of Beth Israel Deaconess Medical Center in Boston.

NFCR is just one — and a small one, with a $15 million annual budget — of hundreds of cancer-related charities. Its uniqueness and what it portends for the whole future of research is its willing support, within the research community, of disruptive biomedical technologies as well as its appreciation for long-term support for particular scientists. These scientists are part of establishment teaching hospitals like Massachusetts General, as well as an honors list of top universities from Harvard to Oxford and across the Pacific to China.

Increasingly, China is becoming more important in biomedical research. American dollars are finding their way into Chinese research Institutions, as a new wave of collaboration outside of traditional channels is being established. These are sometimes housed in open medicine centers, six of which NFCR supports.

With the pressure here on government funding, researchers fear the government will fund only the safe and sure projects. This is being felt across the broad range of biomedical research in the, as scientists are turned away in larger and larger numbers from the National Institutes of Health empty handed. Respected researchers are turning to innovative funding sources, including crowdsourcing. A renowned virus researcher at Columbia, Dr. Ian Lipkin, is trying to raise $1.27 million, having been turned down by NIH, by crowdsourcing

For better or worse, cancer research is going retail. — For the Hearst-New York Times Syndicate

May 12: A Disease Gets Its Day, but Who Cares?

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May 12 is not a day that is written into history. It is not a day when there will be, like clockwork, a presidential proclamation, or a moment of silence. Yet, for some, it is a day of recurring infamy.

Since 1992, it has been the day on which Myalgic Encephalomyelitis (ME) sufferers — and those who care for them– have marked the disease. It is, for these people, a day of sorrow, of remembrance and of yearning. They remember those who have died, or committed suicide.

They are angry — often too angry to be persuasive — that ME is not on the national radar. They are angry that after more than three decades, the federal government is still seeking to define the disease, which afflicts about 1 million people here and 17 million worldwide; that research funding, at $5 million, is so low that in the world of Washington expenditures, you practically need an electron microscope to find it; and that the suffering goes on unmitigated.

They are angry that the government, through the Centers for Disease Control, abandoned the old name, Myalgic Encephalomyelitis, in favor of the dismissive new name, Chronic Fatigue Syndrome. They believe this trivializes the disease, and favors those who want to define it as a psychological affliction rather than a real disease.

They are angry that distinguished researchers, like the virus hunter Dr. Ian Lipkin of the Columbia University Medical Center, has had to resort to crowdfunding to continue his work that might help ME patients.

Why does the ME community observe May 12? It is the birthday of Florence Nightingale, who may have suffered at the end of her life from a variant of ME.

So this May 12, Mary Dimmock, a mother of a suffering son, will endeavor to unfurl a banner made of pillowcases on the grass outside the U.S. Capitol. Her goal: Get recognition for the disease, so the long work of finding answers and a cure can be accelerated.

What is known is that ME is a disease of the immune system, and it starts with flu-like symptoms or with collapse after exercise. In extreme cases, as with Dimmock's 26-year-old son, Matt, the patient becomes almost totally incapacitated with mental fog, painful joints, terrible headaches, intestinal upset, and extreme sensitivity to sound and light. Matt Dimmock has to spend his days on a bed set up in a closet.

Patients go through periods of extreme debilitation for two or more years, sometimes recovering enough to function for several hours a day. What a healthy person would consider to be normal activity — like going to dinner or a movie with friends — can result in two days in bed for a ME patient.

Doctors, on the whole, know very little about the disease.

Mary Dimmock is an unlikely protester. She has presence: tall and distinguished. She is a scientist, who took early retirement from a large drug company to care for her son and has become an advocate for this disease, which has confiscated so many lives.

Although ME knows no age or gender, the National Institutes of Health (NIH) has lodged what little effort it makes under “women's health.” One patient said, “Maybe they think we are hysterical women, who are just making a fuss.”

Dimmock is the antithesis of an hysterical woman. She became an activist when she found, after her son fell ill four years ago, that where ME is concerned, the system is broken. She told me, “It has been profoundly disturbing to watch the world around my son, especially the medical community, ridicule and even brutalize him for believing that his disease is real and serious.”

Around the world, the ME story is the same: Doctors who do not know anything about the disease and governments that do not want to know anything about it, or want to believe, for economic reasons, that it is a psychosomatic affliction, when there is ample evidence that it is an immune system disease.

I have interviewed many patients, and some of the small coterie of doctors who are working on the disease. They all wish the Department of Health and Human Services would take a proactive role through its agencies, the NIH and the CDC. More and more dedicated researchers have been forced to turn to crowdfunding because the agencies of government, charged with the public health, have turned out to be selective in their sense of who is sick. — For the Hearst-New York Times Syndicate

Step on the Gas, Europeans Plead

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To hear Brenda Shaffer, a peripatetic academic specializing in European and Eurasian energy issues, currently on a research fellowship at Georgetown University, natural gas is the predominant fuel of the 21st century, and it will be used copiously as time goes on. It will become the fuel of transportation as well as heating, manufacturing and electric generation.

But, at this point in time, moving natural gas from supplier to user presents special problems. It is not as easily transported as oil, and it is not as fungible.

Ideally, natural gas is transported by pipeline. Less desirably, it is converted into a liquid at -260 F and shipped around the world, where it has to be regassified. The freezing and the regassification processes for liquefied natural gas (LNG) require hugely expensive plants: over $5 billion at the originating end, and half that at the receiving end. This makes the gas expensive and its shipment inflexible.

Oil is put on tankers and unloaded wherever it is needed. LNG is shipped in special cryogenic tankers to dedicated terminals on long-term, take-or-pay contracts.

The United States is in the middle of a natural gas boom of unprecedented proportions; the result of extraordinary reserves in shale and the development of sophisticated hydraulic fracturing (fracking) technology linked to horizontal drilling. The pressure to export is on, balanced by environmental concerns and the fear of manufacturers tat the price will rise.

In the current crisis over Ukraine, a question has arisen as to whether we can help our European allies by shipping them LNG. The answer is “yes and no.”

We do not have any terminals ready to begin exports; the first LNG exports will be loaded from the Sabine Pass terminal in Louisiana late next year and will be shipped to Asia. Nor does Europe have enough receiving terminals.

But the Europeans argue strongly that the mere presence of the United States as a player in the natural gas export business will have a huge impact on the world market, signaling that we are on the way and, hopefully, warning Russia that its captive gas customers in eastern and central Europe are looking at alternatives, and want to lift the yoke of dependence on Russia.

With the invasion of parts of Ukraine by Russian troops or their surrogates, gas has become a weapon of war. Russia's giant, state-owned gas monopoly, Gazprom, has been an arbitrary supplier to Europe for years. Most troublesome is that the bulk of Europe's gas supplies transit Ukraine, and that Gazprom has never behaved like anything but an arm of the Kremlin, dangerous and capricious.

In 2009, Gazprom cut off supplies over alleged contract and payment issues; in the cold of winter, the Russian bear was merciless. Also, it posts a different gas price for each customer, regardless the distance from Russia's border or cost of delivery.

Desperately, Europe is looking for a defense against Russia freezing supply to Ukraine this winter and cutting off some countries, particularly those wholly dependent on Russian gas, like the Baltic states and Slovakia.

That is why the Visegrad Group, consisting of Poland, the Czech Republic and Slovakia, under the chairmanship of Hungary, has been intensively lobbying Congress to pass a bill that would simplify and speed up the licensing of export terminals in the United States. At present, seven terminals have provisional licenses from the Department of Energy, and Sabine Pass is fully licensed.

Visegrad members swarmed Capitol Hill this week, lobbying for the legislation. They were accompanied by officials from Bulgaria, Croatia, Latvia, Romania and Ukraine.

Their message was simple: the legislation would convince the Russians that they had to play by market rules because the entry of the United States as a player in the world of LNG — even if the gas cannot be offloaded in Europe in the near future — will send a strong market-stabilizing message.

Where possible, eastern and central European countries are improving their interconnections and adjusting their systems so they can reverse the flow of gas to help Ukraine in a dire emergency. But no one believes that it will make enough of a difference; besides, as most of that gas will have originated in Russia, some Russian contracts specify the use of the gas.

Almost all of the gas in the region is used for heating rather than electric generation or manufacturing. Central and eastern Europe is dreading winter and imploring the United States to send strong signals, even if it will be a long time before Pennsylvania or Ohio gas warms the people of Ukraine and its neighbors. — For the Hearst-New York Times Syndicate

 

A Bold Proposal for a Suffering Community

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I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease. The manifesto states what I think should be done now.

And “now” is an important word.

There is a story that Winston Churchill, when he was very old and sick, summoned the gardener at his beloved country home in Kent, Chartwell, and asked him to plant an oak tree in an open space.

The gardener, looking at his enfeebled employer, swallowed and said, “But, sir, an oak tree takes a hundred years to grow.”

“Then you’d better plant it now, hadn’t you?” said Churchill.

During World War II, Churchill used this same execution imperative approach to work. Churchill used to stick little, pre-printed notes — long before the days of Post-it notes — on his paperwork for staff that read, “Action This Day.”

One of the first things that struck me about ME/CFS, when I started writing and broadcasting on the subject, was how slow the pace of progress was, even as the suffering suggested the need for immediate action. The second was how stingy public and private funding for research was then and is now.

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime — and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.

One year, the CFIDS Association of America was able to declare proudly that it had raised $2 million. The National Institutes of Health, a federal agency that should be pushing research, granted a paltry $5 million for ME/CFS in 2013. By comparison, in that same year, I learned that a consortium of foundations was sponsoring a green power marketing initiative at $6 million a year.

I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than $60 million year-in and year-out for nuclear fusion research — and I see nothing wrong with that.

But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable. To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to willful neglect; an abrogation of the high purposes of Hippocrates’ calling.

Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders. These governments have been seduced by the fraudulent blandishments of the psychiatric lobby. If a ME/CFS patient refuses to accept a psychiatric diagnosis, he or she can either be imprisoned or forced to suffer the insinuation that they are not physically sick, even if they cannot get out of bed. There are cases in Europe where patients refusing the prescribed psychiatric treatment have been imprisoned, as happened most recently to Karina Hansen in Denmark.

The United States is experiencing a boom in natural gas production and the deployment of solar panels on rooftops. These successes are the manifestation of substantial research money committed in the 1970s, and sustained since then. Science needs certainty of support, both political and financial, to triumph.

The key is sustained funding; a splash here and a dash there just won’t do — it won’t do anything. ME/CFS researchers need to concentrate on their work, wherever that work takes them, free from the stress of insecure funding.

ME/CFS deserves the level of effort that might lead to success. It is not getting it now, and it never has had it.

It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowdfunding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg. Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science.

If we, as a nation, are to believe that we are in the forefront of science, we must be in the forefront of biomedical research as well as the forefront of computers, telecommunications, materials and physics. We almost humbled polio, and developed powerful drug therapies for AIDS. We can transplant vital organs and gave hope to the leper. The advances came neither cheaply nor easily, but they have saved lives beyond counting and eased suffering beyond enumeration. Why not for ME/CFS? Why not?

There is eloquence in the voices of the community. But they are widely distributed and, sadly, they fall mostly on ears of those who already know them — the sick, their families and their advocates.

The voices need to be heard widely, need to be channeled and need to be focused. A million points of light won’t do it. A laser, a great beam, will do it.

There are three principal reasons why these voices are not heard by those who need to hear them:

1. ME/CFS is a hard story for the media to grasp.

2. ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson’s Disease.

3. ME/CFS has no presence in Washington.

Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take.

To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.

Happily this would amount to one very visible person, who strolls the halls of Congress, lunches at the clubs and restaurants, like the Cosmos or Metropolitan clubs, or the Monocle Restaurant on Capitol Hill. Once, I was mentioned in the Wonkette blog because I was spotted entering Bistro B, a favorite restaurant of the powerful, and those who think they are powerful.

If your children attend one of the power schools, like St. Alban’s or Sidwell Friends, contacts can be made and deals can be done at the events. A friend of mine enlisted President Bill Clinton’s help for a cause because their children went to the same school.

It may strike you as banal, but it is the Washington political game. Learn to play it.

Washington is a society of people who are impressed with each other. It is important to be known. If you are invited to the annual White House Correspondents’ Association or Alfalfa Club dinners, you are known. The next step is to be known for ME/CFS advocacy.

Once known, the perfect advocate/lobbyist will morph into a resource, a voice for others in Washington: a source of information for congressional aides trying to understand the budget requests of agencies, and a source of information for reporters writing about diseases of the immune system.

A voice in Washington puts pressure on government agencies to do the right thing, and on members of Congress to authorize and appropriate money. The advocate/lobbyist can learn, through the hearing process, about the diligence and transparency of the agencies and the quality of their operations; to see if they are doing the job or treading water, to see how transparent their operations are and the quality of professionals operating programs.

Another salutary source of pressure in Washington is the press corps. It covers not just politics but also the functioning of government. The pinnacle of power in the corps are still The Washington Post, The New York Times and The Wall Street Journal. But the news agencies, The Associated Press, Bloomberg and Reuters, followed by a veritable media army that cover politics and programs, including Politico, The Hill, Roll Call, National Journal, and the specialized medical publications also play important roles.

Fifty years ago, the center of media activity was New York. Now it is Washington. A professional advocate for ME/CFS needs to cultivate the media and to be comfortable with the currency of Washington and to trade in it. That currency is information.

Washington is a great information market. The successful lobbyist/advocate is, by the nature of the city and its functioning, an information broker.

The sums of money that will be needed to accelerate research cannot be calculated and could be very substantial. Research funding, above all, needs to be sustained at predictable levels.

The pharmaceutical industry figures that a new drug can cost upwards of $1.2 billion. I mention it only to hint at the vast amount of money needed for drug research and development.

How much ME/CFS will need and for how long is an existential question. Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS.

In the United States, that success may be a long time in coming – too long for those for whom today will be a living hell, as yesterday was and tomorrow will be.

I figure that for as little as $1 million, a start toward a Washington presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows.

I operated a small business in Washington for 33 years, and I am confident that a new ME/CFS presence there will reverse the disease’s funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others — have in Washington and the nation.

If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public.

ME/CFS needs a place on the national agenda if it is to be understood and cured in reasonable time, and if the very best minds are to be attracted to the task and to stay with it. That Churchill oak needs to be planted now, and in sight of the U.S. Capitol.

Llewellyn King is the creator of ME/CFS Alert on YouTube, which he co-hosts with Deborah Waroff. Their video work is being supported through donations on the fundraising Web site GoFundMe.

 

The Need To Redistribute Income Is Real

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If you want to get people riled up, whisper "redistribution."
 
Well, sorry about this, but that is what we need. We need to re-establish what might be called "the comfortable class." Those are the people we used to call the middle class until the politicians, with a helping hand from the media, characterized everyone who worked as middle class.
 
When we had a working class and a middle class, the working class could aspire to join the middle class, and the middle class could aspire to join the upper middle class, which might also be thought of as the managerial or professional class.
 
The professional class is still mostly intact; it includes doctors, dentists, corporate lawyers and some scientists. But the rest of us, unless we are protected by government employment, are standing on the edge of a precipice, and some are already on the way down.
 
There are many problems with our social structure today, not the least of which is that many forms of work have been endangered or have disappeared. Look around you.
 
You do not have to look far to see whole swaths of employment that have disappeared; either moved overseas or have fallen prey to the predations of the computer. I treasure my electronic reading device, but every time I switch it on, a parade of ghosts passes before me: book designers, papermakers, printers, bookbinders, warehousemen, drivers, sales assistants and store cleaners. Well, they are just the book people who the clever device has rendered obsolete.
 
Then there is the whole issue of the future of retail in general, and shopping centers in particular. A young person told me recently that the mall was for hanging out, but shopping should be done on the Web. Retailing has always been poorly paid but, even there, the middle class had a foothold with its managers, marketing specialists and all those aspiring sales assistants.
 
A new book is all the rage in circles that care about such things, and it is causing economists to rethink the inequality that wage-fear has made possible; the fact that the minimum-wage and low-wage structure now prevails in many states and is spreading.
 
The book is "Capital in the Twenty-First Century" by Thomas Piketty. It lays out how money is being concentrated in fewer and fewer hands with more of it belonging not to those who earned it, but to those who inherited it. With sound, but not spectacular investment, the owner of a few billion dollars will almost certainly pass even greater wealth on to his or her heirs in a never-ending column of money, creating the greatest concentration of wealth in history.
 
Yet there is nothing pushing up our earnings.
 
Instead, there are many forces pushing them down — from the inability of the unions to adjust to the times to the constant endeavor by states, such as Texas, to suck high-wage jobs out of other states and beggar the workers. Employers do not want to pay more than necessary and, of course, there is computerization.
 
Lower wages mean less spending, more low-wage jobs, fewer people in the middle class, fewer "comfortable" people.
 
Martin Wolf, the esteemed columnist of the Financial Times, points out that where redistribution is practiced as a continual part of the political process, as in Scandinavia, there is generally universal prosperity and a measurable middle class, enjoying a lot of social services. In Latin America, where you have an oligarchy of the kind forming here, there is little prosperity and consequent human suffering.
 
In history, there have been savage periods of redistribution. Henry VIII seized the abbeys because that was where the wealth was; Oliver Cromwell had the same idea. The French overdid it terribly in 1789, the Russians in 1917. And the British ran taxes up to 90 percent of income after World War II with predictable, devastating results.
 
Societies work best when they are flexible without rigidities; the rise of incalculable billions in the hands of the very few while general incomes are falling creates a cruel and dangerous rigidity. Worse, concentrated wealth overwhelms democracy.
 
Whisper it: "redistribution."  – For the Hearst-New York Times Syndicate
 

Scotland and England: Should Auld Acquaintance Be Forgot?

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What looked like a kind of harmless beauty contest, the vote on Scottish independence in September is shaping up to be something quite otherwise: the death struggle for the United Kingdom. The polls are showing a surprising narrowing between those who would vote for Scotland to become an independent country and those who would vote for it to remain part of the United Kingdom, dominated as it is by England.
 
Since the Act of Union in 1707, England and Scotland have been one nation, but with important differences. For a start the Scots have maintained their own distinctive way of speaking, although it is unlikely that the Scots language can be revived or whether it should — you know when you are in Scotland. The country is predominantly Presbyterian with a substantial Catholic minority.
 
Scotland has its own legal system, based on Roman-Dutch law rather than English Common law, and it has kept alive the traditions of Scotland — sometimes enhanced by English commercial interest — such as the marketing of whisky, the celebrating of New Year, and the jokes about haggis.
 
The Scots always had their nationalists, including those who stole the Stone of Scone from Westminster Abbey on Christmas morning 1950, and took it back to Scotland. The 336-pound stone, according to one Celtic legend, was the pillow upon which the patriarch Jacob rested at Bethel, and for centuries was associated with the crowning of Scottish kings. Four months after the stone was stolen, it was returned to the abbey. And in 1996, the British government returned it to Scotland.
 
But Scottish nationalists have never posed a threat to the union with England; not that the Scots haven't always denigrated those living south of the border as “Sassenachs.”
 
In my experience, as someone brought up to respect Scotland’s traditions (its music, literature, and its brews and distilled spirits) the distinct disinterest of the two peoples in each other is quite dumbfounding.
 
The English will flock to the continent on their vacations, but not to Scotland. Once in Peebles, a town near Edinburgh, a friend asked if I was staying for a local masonic parade and festival. I asked if there would be a lot of English visitors. He replied: “I don't think so; they don't come here. And we're not very nice to them when they do.”
 
When my wife and I were planning our annual trip to Scotland, an otherwise well-traveled and erudite Englishwoman living in London asked us, “Why would you go there?” Think about how Canada is ignored in the United States.
 
Scotland is, in fact, a tourist treasure with great beauty, fabulous vistas and wonderful traditions, even if they get a periodic upgrading from the Scottish Tourist Board.
 
Probably the greatest period of harmony was ushered in by Queen Victoria, who liked Scotland a lot; after the death of her beloved husband, Prince Albert, she spent long periods in Balmoral Castle. Some even suggested she had a romantic relationship with her Highland manservant, John Brown. There are those who have suggested that if Queen Victoria had had the same affection for Ireland, it would not now be a separate country.
 
The present crisis has occurred because of the determination of two men: Scotland's first minister Alex Salmond and former British prime minister Tony Blair. Blair believed in the “devolution” of power to the regions. He was warned against this by his predecessor, John Major, who was appalled at the idea. “Utter folly,” he called it.
 
Salmond believed in independence for Scotland; it had been his life's passion. He was ready and when Scotland was granted a legislature of its own by Blair's Labor government in 1998, he saw the chance and began to push for referendum.
 
Like most divorces this one won't be easy, if it happens. Just a little over 5 million people live in Scotland (64 million live in England), but it occupies one third of the land mass of the United Kingdom.
 
Then there is the question of borders, currency, and the status of the Queen. The Scots want to keep the pound and the Queen. But if Scotland votes to quit the union, England might say no: Our pound, our Queen.
 
The case for Scotland staying in the union is economic, as was the case for them being coerced to join in the first place. The case for separation is nationalistic.
 
The patron saint of Scotland is St. Andrew, and the patron saint of England is St. George. They have stood together in war and peace for 300 of history's most remarkable years – an empire, the Industrial Revolution, and two world wars.
 
Now they stand apart — at the opposite sides of an impending referendum. “Should auld acquaintance be forgot,” as Robert Burns, poet and Scottish nationalist, wrote. The polls are not encouraging for unionists. — For the Hearst-New York Times Syndicate

The Growth of the Tipping Culture and What It Says

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So you think the federal minimum wage is $7.25. Well that is for people who do not get tips, or rather for those who are not recognized to get tips.
 
If you are restaurant waitstaff, your minimum wage is just $2.13. That is because it is assumed tipping will make up the difference.
 
Now if you are tending bar at a top restaurant in a big, prosperous city, that is probably a pretty good deal — so long as you are healthy and can show up to work regularly. Cocktail waitresses in the right establishment can do even better. Gender counts here, and as out-of-town businessmen on expenses enjoy their beers, their affection for waitresses can grow and show itself in lavish tips.
 
That is the high end, where money and booze are at work. Likewise in expensive restaurants, waiters can make a passable living, even a good living, so long as they get to work the hours they want. Breakfast sucks, lunch is not what it used be in the days of three martinis, and dinner is still waiter Eldorado.
 
The rub (isn't it always?) is down the line, where there is less money sloshing about. So-called family restaurants, individually owned, or in chains like Denny's and IHOP, it is a different reality. No one gets rich bringing out the hamburger and fries or French toast.
 
In the world of tipping, taxis are incongruous. If tipping, as allegedly it was defined by the great wordsmith Samuel Johnson, means “to insure prompt service” then taxi drivers should lump it. They drive, you pay and there is no element of special service detectable in most cases. But tips are expected, even if the chap has been on the phone to God-knows-where at the top of his voice for the entire trip. The car is jalopy and he does not know the way. Hand over.
 
Barbers get a little extra and in beauty parlors, tips are very important. On pleasure fishing boats, well, as the sign, says “the mate works for tips.”
 
Not only do a lot of people work for tips, but they are, for the most part, the working poor and frequently the hours are bad.
 
It seems that the number of tipped jobs is growing. Or, to be more correct, the number of jobs where the employees are trying to supplement with tips, appears to be on the rise.
 
In all kinds of places, like bakeries, convenience stores, gas stations, glass jars with improvised signs seek your benevolence. More and more people who serve the public are trying to supplement meager incomes with tips.
 
The French, long ago, institutionalized tipping in restaurants by including it in the bill at 12.5 percent. But in Japan, tipping is not part of the culture. In the United States, 20 percent has become a kind of standard; while New York is higher at 25 percent. When I worked as waiter in Manhattan, the word was that men with brown shoes, and their female equivalents, were from the sticks and expected you to genuflect for 10 percent. Didn't happen.
 
Where the bulk of someone's income is from tips, there has been a transfer of wage responsibility from employers to customers. Some hotels, especially in resort areas, urge you to tip the maid. Of all the tipping, that is the one I do most willingly. Maybe it is because of my own aversion to housework, and especially to making beds, that drives me to open my wallet. It is also that no one who does housekeeping in an hotel is on an upward arc in their lives, methinks.
 
As tipping spreads, as it appears to be, so does the sense that, like much of the Third World, we have become a country that is for sale, one person at a time: low wages, low standards, low expectations. That glass jar on the counter soliciting tips tells a story, and not a pretty one. For “Tips” read, “need.” — For the Hearst-New York Times Syndicate