Sunday, March 2, 2014

The Strange Case of NIH and an Elusive Disease By Llewellyn King

The Strange Case of NIH and an Elusive Disease

By Llewellyn King

The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.

So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.

According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.

ME/CFS takes healthy -- often athletic -- people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.

It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, "With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie."

From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.

One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.

But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.

Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.

To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.

The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world's top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.

So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.

Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.

There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, "first do no harm." When people are in pain and despair, inaction is palpable harm.

A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them.

Llewellyn King is executive producer and host of "White House Chronicle" on PBS. He is the creator and co-host of ME/CFS Alert on YouTube. His e-mail is

Llewellyn King

Executive Producer and Host,
"White House Chronicle" on PBS;
Columnist, Hearst-New York Times Syndicate;
Commentator, SiriusXM Satellite Radio
Web Site:
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I keep telling people I'd rather have cancer -- not only there's something doctors can do about it, but also I'd qualify for all sorts of assistance based on the diagnosis.

There's a cleaning service that does free cleaning for women with cancer.  I wrote to them, not naming the disease, just describing that I'm more disabled than someone undergoing chemo, would they consider coming to clean for me?  No response, despite the number of people who are "suuuuuuuure" that all I have to do is contact the agencies/companies offering stuff to cancer patients and they'll be happy to give me the same things.  No, not one single charity or company or government agency has ever agreed that if I'm as sick as a cancer patient I deserve the same assistance they get.

Let's get one thing straight: in most cases, cancer is no longer an automatic death sentence.  You have surgery, endure a few months of chemo/radiation, and life goes on pretty much as before.  As opposed to ME/CFS, where there's no surgery, no treatment, and life never goes back to normal because you're never able to do what you used to.  Even at my best stage of remission, I never got back to more than about 85% of my old self. 
And there have been times that I was so sick I couldn't get out of bed ... my legs crumpled under me when I tried to stand up to walk the few feet to the bathroom.  But unlike friends who were that weak for a day or two after a chemo session, I didn't have friends or family here to help me -- I had to manage alone.  No one coddled me, no one cooked for me (and the suggestion "when I don't feel well, I call out for pizza" didn't take into account that when I'm that sick, spicy acidic foods like pizza won't stay down), and once I felt well enough to investigate what was in those boxes in the guest room, I discovered that instead of washing the dishes in the sink, some of the hired help were boxing them up and hiding them! 
That's a far cry from the experience of a friend who recently had cancer -- her family, friends, and neighbors made sure that she was never alone on the day post-chemo weakness hit.  A doting husband took time off work to be with her (when I had a husband, he refused to change his schedule to be home with me), and even knowing that he was looking after her, the neighbors washed dishes (and laundry) and brought over casseroles on those nights.  In 14 years of being disabled, only once has a neighbor brought over any food -- they had too many party leftovers to fit in the fridge, so she brought over what wouldn't fit ... and I had to refuse because it was something I'm allergic to.  It's not that my neighbors "don't know" I'm disabled; it's that the idea of helping me out has never crossed their minds.  The only one who's ever even asked about my diagnosis later asked "how's your carpal tunnel syndrome?" -- she knew I'd said something about a syndrome that starts with C, but didn't even care enough to remember what it was. 
One of the other neighbors, on being told I'm disabled, verbally abused me "you wouldn't be disabled if you weren't fat."  Didn't even know (or care) what my symptoms or diagnosis is, but somehow she knew that the sole cause of my disability is my weight.  I weighed 125 when I got sick ... that's 10 pounds less than someone of my height should weigh; I didn't get fat until doctors started prescribing things with weight gain as a side effect.  I'd rather be fat than dead, so I took the pills.
Oh, yeah, and the American Cancer Society regularly contacts me asking me to spend my OWN money printing and mailing their fundraising letters to my neighbors, but when I ask their employee to ante up the same amount of their own money to donate to medical research into my condition, even without knowing what that condition is, they are offended that I want to divert money from their cause to mine.  Now you know how I feel, when I'm asked to divert my money from one of the least-funded diseases to the best-funded.
Yes, I'd rather have cancer.  And I say that as the daughter of someone who had cancer -- he got it fixed and went back to work full-time; at 85, he was in better physical condition than I was, because doctors could do something for him other than tell him "go home and learn to live with it".

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