White House Chronicle

News Analysis With a Sense of Humor

  • Home
  • King’s Commentaries
  • Random Features
  • Photos
  • Public Speaker
  • WHC Episodes
  • About WHC
  • Carrying Stations
  • ME/CFS Alert
  • Contact Us

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

May 8, 2014 by White House Chronicle 22 Comments

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

Filed Under: King's Commentaries Tagged With: CDC, Centers for Disease Control, CFS, Chronic Fatigue Syndrome, Columbia University Medical Center, Dr. Ian Lipkin, Florence Nightingale, Mary Dimmock, ME, Myalgic Encelphalomyelitis, National Institutes of Health, NIH, U.S. Department of Health and Human Services

White House Chronicle on Social

  • Facebook
  • Twitter
  • Vimeo
  • YouTube
Police Beatings Deserve Outrage, but It Isn’t Easy Being Blue

Police Beatings Deserve Outrage, but It Isn’t Easy Being Blue

Llewellyn King

Police excess gained huge attention after the death of George Floyd in Minneapolis in 2020 and again after the alleged beating death of Tyre Nichols in Memphis last month. But police excess isn’t new. A friend, who had been drinking and could be quite truculent when drunk, was severely beaten in the police cells in […]

IRENA Panel Urges Youth To Move from Anger to Action on Energy Transition

IRENA Panel Urges Youth To Move from Anger to Action on Energy Transition

Linda Gasparello

ABU DHABI, United Arab Emirates — Greta Thunberg, the Swedish climate change canary, didn’t participate in the 13th assembly of the International Renewable Energy Agency (IRENA), held in Abu Dhabi on Jan. 14 to 15. Perhaps it was because she was otherwise engaged in protesting against the razing of the German village of Lützerath for […]

Big Tech First Cornered the Ad Market, Now Practices Censorship

Big Tech First Cornered the Ad Market, Now Practices Censorship

Llewellyn King

Big tech has siphoned off advertising and wants to be a global censor.  The Department of Justice has filed suit against Google for its predatory advertising practices. Bully! Not that I think Google is inherently evil, venal or greedier than any other corporation. Indeed, it is a source of much good through its awesome search […]

Going Green Is a Palpable Need but a Tough Transition

Going Green Is a Palpable Need but a Tough Transition

Llewellyn King

ABU DHABI, United Arab Emirates — I first heard about global warming being attributable to human activity about 50 years ago. Back then, it was just a curiosity, a matter of academic discussion. It didn’t engage the environmental movement, which marshaled opposition to nuclear and firmly advocated coal as an alternative. Twenty years on, there […]

Copyright © 2023 · White House Chronicle Theme on Genesis Framework · WordPress · Log in