“There have been some medical schools in which somewhere along the assembly line, a faculty member has informed the students, not so much by what he said but by what he did, that there is an intimate relation between curing and caring.”
So remarked Ashley Montague, the British-American anthropologist and humanist.
The millions who suffer from what is termed Chronic Fatigue Syndrome in the United States, and Myalgic Encephalomyelitis in the rest of the world, await day that the medical establishment cares enough about the disease to cure it.
They await that day with an anxiousness that is unimaginable to those who have not been afflicted by the disease.
The two commentaries on CFS/ME that Llewellyn King wrote for the Hearst-New York Times Syndicate (and posted on this Web site) have elicited a terrible cry from the afflicted, including a woman who called herself “an unburied corpse.”
These cries called out for a special edition of “White House Chronicle” on CFS. That edition, featuring Deborah Waroff, a New York author, and Dr. Paul Plotz, a National Institutes of Health clinician scientist, first aired on television Oct. 8, 2010.
“I hope the television special and my syndicated columns push the National Institutes of Health and the Centers for Disease Control, and its political masters, to take action on this life-robbing disease,” said King, executive producer and host of “White House Chronicle.”
Here are some of the viewer responses to the CFS/ME special that we have received so far:
Thank you so much for your broadcast featuring ME/CFS.
I am a Canadian ME/CFS patient who has suffered from this disease for over 12 years. I am involved in research looking to see if there is a connection between the newly discovered XMRV retrovirus and neuropsychiatric disease in my child. The thought is XMRV may have been passed onto my child by me and played a role in expression of her condition.
I am waiting for general XMRV research to learn if the retrovirus played a role in cancer I was diagnosed with four years ago as well. I am wondering if I will develop other cancers and wait anxiously to learn more about ME/CFS and cancer.
I would like to state here, in my experience, CFS/ME is not biologically benign, and highlighting CFS/ME on your show is significant. Perhaps you may help move research forward and thank you in advance for this.
I am immensely appreciative, since as you can imagine, I am anxious for research to help my family understand our poor state of health.
I am a most grateful U.S. neighbor.
I can’t thank you enough for the attention you have brought to ME/CFS suffers.
I have had to deal many times with the ignorance and intolerance towards this illness. It is such an isolating illness and it is well and truly about time that more attention is given to it.
It would be so much easier to deal with if we had understanding and support.
Again thank you!
Thank you so very much for your willingness and openness to bring new light to ME/CFS on your show.
We need you. We are desperate to have our voices heard. I can only tell you from my experience that no one would want to have this horrible, life-stealing illness.
I was a very active social worker and church and community volunteer before contracting a virus in 2004 that never went away. It took so long to get an accurate diagnosis that by the time that I did, I was completely bedbound, not being able to leave my home for weeks at a time.
I have to travel over 1,000 miles for medical care, since I am unable to find a doctor here that believes me.
In January of this year, I had to crawl out of my bed to fight breast cancer. With a compromised immune system, I worry about it coming back and not being strong enough for more treatments.
Cancer was a breeze compared to the battles of ME/CFS–and I do not say that flippantly.
Please continue to bring this horrible illness and the injustices to the public. It is a crime against humanity to be made to suffer like this with no answers.
God bless you, Mr. King.
How is “epidemic” defined at the White House?
When is National XMRV Testing Day?
How much longer do you think I can hold out before Chronic Fatigue Syndrome induced dysautonomia shuts down a vital central nervous system?
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Guest: Barry C. Lynn, New America Foundation
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Sarah m’dear, it’s not about the party. It’s about the tea.
For those of us of the British persuasion, tea is black tea. It was the tea on which the British built the empire.
It was also, I might add, the tea that Margaret Thatcher served at No. 10 Downing Street. I enjoyed some with her there. A Conservative traditionalist, she served it with milk for certain and sugar as an option.
Thatcher did not ask her guests, as bad hotels do now, what kind of tea they would like. Tea to Thatcher was black tea, sometimes known as Indian tea, though it might have been grown in Kenya, South Africa, Zimbabwe or Sri Lanka. It was neither flavored nor some herbal muck masquerading as tea.
The former prime minister knew that good tea is made in the kitchen, where stove-boiled water is poured from a kettle onto tea in a pot, not tepid water poured from a pot on a table into a cup with a tea bag.
Boiling water in a kettle, or pot, on the stove is important in making good tea. In a microwave, the water doesn’t bubble. Tea needs the bubbles.
While the Chinese drank green tea hundreds of years before Christ, the British developed their tea-drinking habit in the 17th century. In 1600, Queen Elizabeth I granted permission for the charter of the British East India Company, establishing the trade in spice and silk that lead to the formal annexation of India and the establishment of the Raj.
Initially, tea was a sideline but it became increasingly important and started to define the British. The coffee shops–like the one that launched the insurer Lloyds of London around 1688–continued, but at all levels of society tea was becoming the British obsession.
By the 18th century, tea drinking was classless in Britain. Duchesses and workmen enjoyed it alike.
Tea was the fuel of the empire: the war drink, the social drink, the comfort drink and the consolation drink. Coffee had an upmarket connotation. It wasn’t widely available and the British didn’t make it very well.
Also as coffee was well established on the continent, it had to be shunned. To this day the British are divided about continental Europe and what they see as the emblems of Euro-depravity: coffee, garlic, scents and bidets.
Although tea is standardized, the British play their class games over the tea packers. For three centuries, most tea has been shipped in bulk to various packing houses throughout the British Isles. But the posh prefer Twinings to Lipton.
Offering tea with fancy cakes, clotted cream and fine jams separates the workers from the ruling classes. One of Queen Victoria’s ladies in waiting, Anna Maria Stanhope, known as the Duchess of Bedford, is credited as the creator of afternoon tea time; which the hotels turned into formal, expensive afternoon “teas.” The Ritz in London is famous for them.
The British believe that tea sustained them through many wars. “Let’s have a nice cup of tea. Things will get better.” I’ve always believed that America’s revenge against the British crown was to ice their beloved tea. Toss it into Boston Harbor, but don’t ice it. If you should have the good fortune to be asked to tea at No. 10, or at Buckingham Palace, don’t expect it to be iced.
Incidentally tea bags are fine, and it’s now just pretentious to serve loose tea with a strainer. Of course, if you want to read the political tea leaves you’ll have to use loose tea.
If you’re serving tea to the thousands at your tea parties, Sarah, remember that unlike politics, tea is very forgiving. It can be revived just with more boiling water. –For the Hearst-New York Times Syndicate
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Workaround is a made-up word that came to us from the computer industry – at least, that is how it came into general usage. In that industry, a workaround can be a crafty piece of engineering to get the results you want without infringing on someone else’s patent.
Watching President Barack Obama at last week’s prime-time news conference, one had the feeling that he was engaged in a workaround. He was selling a vague health care reform proposal. His spiel was very long because he was selling something that is still a work in progress. Worse: Whatever Obama gets is not going to be the real thing. It is going to be a workaround.
One has the feeling that congressional pusillanimity has the Democrats and their leader working around what at heart they know is the only solution to the challenge of health care – a strong federal role. Call it the solution that dare not speak its name, like Oscar Wilde’s love.
One had the feeling in the East Room last week that the president wanted to lay down the burden of political gamesmanship and say, “National systems work from Taiwan to Norway, Canada to Australia; why, oh why can’t we face this reality?”
The first answer is that no one has the courage to face the Banshee wails of “socialism” that already echo from the right and would intensify to the sound of a Category 3 hurricane. Politically, it would be seen as a bridge too far. Had Obama said in the presidential campaign that he was for a single-payer option, the Democrats on Capitol Hill might have had the temerity to investigate what works remarkably well in Belgium and Japan, among dozens of other countries.
Globally, the single-payer option – or, let’s face it, nationalization – has brought in universal coverage at about half of what the United States spends today; let alone what we will spend with the clumsy hybrid that the president is selling and Congress is concocting.
Under nearly all state-operated systems, private insurers have a role. My friends in Britain and Ireland all have private insurance for bespoke medicine above that available on the state system. Sure, state systems are criticized, especially in Italy (along with everything else), but not one country that has a state system has made any political move to repeal it. State systems are popular.
In Britain, where I have had most experience with the National Health Service, it is the third rail of their politics. Even the great advocate of free enterprise, Margaret Thatcher, did not dare to even think of touching it. Every British Tory wants to make it more efficient, but none wants to repeal it. Thatcher repealed anything that had the whiff of socialism about it and privatized much, including the railways, but the health system was sacrosanct.
The issue should not be whether we can keep every insurer alive and whether we should continue to burden employers with the health care of their staffs and their families, but whether a new system will deliver for all Americans at reasonable cost.
It is probably too late to rationalize the system all at once. There are too many interests, too much money at stake and a pathological fear of government, fanned by the loud few. No matter that the Tennessee Valley Authority works well, that the Veterans Administration is a larger, and probably better, state program than those in many countries. It is not just in health care that Congress and the administration are engaged in workaround. Cap-and-trade in energy is another piece of avoidance.
Utility chief, after utility chief, after utility chief–among them, John Rowe of Exelon and James Rogers of Duke–has said that a simple carbon tax would be more effective and cheaper than cap-and-trade. But the same people who yell “socialist” get severe arrhythmia at the mention of “tax.” Workaround. –For North Star Writers Group
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