I never thought I'd succumb to this. And yet, like so many others with ME-CFS, I have become obsessed. I want to believe there is a way to prevent getting worse. I want to believe there is a way to get better. I want to believe I have control over my fate.
As I ride over the crests and down into the valleys of this illness, I'm convinced my tendency to obsess has much to with the current lack of understanding, or to be more accurate, misunderstanding about this illness. In the U.S., ME-CFS is misdiagnosed and greatly misunderstood. The misunderstanding about it comes as much from politics as it does scientific ignorance. And the two work symbiotically, like Siamese twins, inseparable from one another.
The history of this mess is beautifully documented in Hillary Johnson's book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Hillary is a journalist who, with an incredible eye for detail and controversy, pulled together a stunning history of the first decade of CFS in the U.S. Her accounts reads like a combination mystery and thriller, as she describes the efforts of physicians and researchers to alert the CDC to an epidemic threat, the CDS's dismissal of evidence, diversion of research funds, and ultimate decision to trivialize the disease as psychosomatic. Hillary's blog oslersweb.com continues to advocate for ME.
A few days ago, I read a blog by another young woman who, at the early stage of her illness, was advised by her Doc to push through the fatigue. As a result of his misguidance, she went from mildly ill to bedridden.
A similar thing happened to one of my best friends. She went out skiing when she felt better, unaware of the serious risk to her already compromised health. She came home with a case of Lyme-induced ME that has kept her nearly bedridden and severely cognitively-impaired for four years. To her great regret, an acupuncturist advised to take it easy and avoid exercise. But as a member of our exercise-obsessed society, and without support of mainstream medicine, she didn't listen.
If both women's doctors had been informed about M.E., two individuals would have avoided many years of suffering. And their families, friends, and businesses would have benefited as well, for each individual's experience ripples out in circles like water does in a lake when a pebble is dropped. In our current politico-medical situation, the very diagnostic criteria for CFS --"Six months of unexplained fatigue" -- and the practice of treating with SSRI's and other antidepressants, guarantee that many more individuals will suffer a similar fate.
All of us with ME-CFS have stories about well-meaning advice that nearly killed us. Most of us have suffered as much at the hands of medical professionals as we have from our own attempts, however misguided, to self-diagnose and self-treat. We’ve had crazy reactions to drugs and to supplements. Who can we trust to guide us?
I saw a physician Thursday who specializes in fibromyalgia. He does research in the field of chronic pain. As a result, he treats all the CFS patients who come to the hospital clinic. Despite his many years of experience, he still thinks of our main symptom as ‘fatigue.’ I know because I asked about getting script for low dose naltrexone.
“I don’t recommend it,” he said.
“Why not?” I asked.
“It won’t do anything for your fatigue,” he replied.
Now why was he focusing on fatigue when, for the past 10 minutes, I’d been recounting the trials of my summer, one infection after another (or one detox crisis after another, depending upon your point of view)? I told him I wanted to try low dose naltrexone to help my immune system.
That’s what a name does. Chronic Fatigue Syndrome. And it’s one of the main reasons people minimize and misunderstand our illness.
"I’ve been really tired too,” a friend might say in sympathy. Her intention of providing support through empathy makes me smile. But I can’t hear those words without getting angry. Why? Because fatigue doesn’t come close to describing the symptoms of this illness. Because the Canadians adopted accurate criteria for ME in 2005 and the US has done nothing seriously towards adopting the same reasonable, scientifically valid criteria. Because the CDC is still lumbering along the path of a psychological stress illness, triumphantly touting the importance of their newest study results: more people with CFS were sexually abused as children than normal controls.
Wow! That’s a revelation! A few percentage points more than the general population. Now they can justify diverting funds from CFS research to sexual abuse…
Is there any chronic illness for which childhood trauma is not an increased risk factor?
(BTW, the article New perspective on chronic fatigue syndrome: lessons from developmental neuroscience, by Christine Heim received a whipping in Hilary Johnson's commentary)
Sarcasm aside, the issue of where to funnel research monies is a serious one. Many of the physicians who treat us and do ME research are as frustrated with the government criteria as we patients. (Perhaps we should be called impatients!). Peterson, one of the first physicians to see the illness in 1986, and the one who called out the CDC to investigate the epidemic in Incline Village NV, has set up his own research center and is raising private funding.
It has been a frustrating journey for me to look at the studies which have come out on CFS over the course of the past 15 years. I am always looking for something that will help me to understand what is going on in my unpredictable body, and always disappointed at the narrowness of the research studies, with their limited criteria.
I remember being excited when I saw that several groups of researchers were looking at HPA axis issues in CFS (HPA = hypothalamus, pituitary, adrenal axis) They found that we had problems regulating -- something any impatient with ME could have told them --but didn't figure out why. The adrenals make 40 different hormones but they only measured one. Labs all over the country have shown that salivary hormone tests are more accurate for the adrenals, because they test the free, active hormone levels, but the studies used the old standby, blood (serum). No studies used florescent markers to study whether hormone molecules made it from the blood into the cytoplasm or nucleus of the cells where they have their effects. No one even tried to determine what interventions might help the body to recover HPA axis regulation. It was depressing to see how little was done with such a huge outlay of funds. It is as if the scientific method has become a huge, unwieldy, obese bureaucrat that waddles around scratching its own ass.
What are your pet peeves? Where do you think ME-CFS research funds should be funneled? Do you think changing the name will make a difference?