ME/CFS Awareness Day: Some basics

On Sept. 17, 2010, I fell ill and, barring a medical miracle, will never fully recover. It took more than three years to get a diagnosis: “chronic neuroimmune dysfunction,” better known as chronic fatigue syndrome or myalgic encephalomyelitis. Since it’s ME/CFS Awareness Day, I thought I’d share some basic information about this disease.

What is ME/CFS? Sufferers have unique constellations of symptoms, with one or three common features. The only universal symptom, as far as I know, is post-exertional malaise. This peaks 1-3 days after someone with ME/CFS ‘overdoes it.’ For some people, overdoing it consists of sitting upright; for others, it means riding a bicycle too fast. Malaise is a crappy term for severe decreases in a person’s ability to perform basic functions, such as breathing, along with other symptoms that differ among people. In my case, I feel a unique kind of ache, often quite severe, radiating in my torso; it’s like kryptonite. Other people have it worse: problems standing and/or thinking.

Striking a characteristic pose

My other main symptom results from repeatedly ‘overdoing it’ without lots and lots and lots of rest between bouts of exercise. This has led to a severe, long-term decline in my energy (housebound on bad days) and immune response (lots of infections). That is, my muscles get stronger but I get weaker.

These physical difficulties often lead to frustration and to social isolation. Facebook friends might be the only friends a person has.

The problems with my immune system deserve more attention, because they could lead to worse(!) diseases later. All the major parts of my immune system are there, in the correct numbers, but some are working overtime while others aren’t doing much at all. The most widely noted example of this is natural killer cells. The NK cells of ME/CFS patients are much less effective at clearing infections than those of other people, and this problem usually correlates with the severity of other ME/CFS symptoms. Here I’m an exception: when tested, my NK cells function at an abysmally low level, yet I function at relatively high one.

How does ME/CFS start? For a large subset of people, including me, it began with a severe infection, such as mononucleosis. In my case, food poisoning or norovirus was compounded because I hiked up and down a really tall mountain while ‘losing weight rapidly,’ to put it delicately. The triggering disease goes away (mine did in two days), but the ME/CFS remains.

Some young people seem to recover fully. Many other people improve to a near-normal level, but all of them risk relapse. This has happened to me at least three times.

There are other people whose ME/CFS starts differently and/or progresses differently. Some get sick gradually, or maybe there’s no clear infection that triggers the problem. And, most tragically, some people slowly get weaker until they die. Others commit suicide.

Yet there’s hope! News reports will state that there’s no medication for ME/CFS, but that’s not exactly true. There’s no cure, and there’s no FDA-approved drug, but plenty of physicians and patients swear by a class of antivirals. I’m one of those patients.

A large subset of sufferers have abnormally high levels of antibodies to Epstein-Barr Virus and/or HHV-6. Mine are consistently off the charts. These viruses, like chicken pox and other herpes viruses, remain latent in nervous system cells or immune system cells and reactivate given enough stress. This appears to be a major component of many people’s ME/CFS. The antivirals valganciclovir and famciclovir attack these viruses, thus improving sufferers’ symptoms (until the next relapse). The catch is that the stronger drug, valganciclovir, is “preventive chemotherapy,” as one of my doctors put it. It also can be very expensive.

More awareness

Phew, giving a basic description of the disease takes up too much space. Here’s what I’d hoped to focus on:

• For years, I wasn’t aware that I could have ME/CFS. If someone matches the basic description, s/he should get checked by a specialist. Regular physicians rarely know much about testing for the disease.
  • And, if you’re sick, don’t climb a mountain!
• A growing variety of non-fakeable tests reveal wide differences between people diagnosed with ME/CFS and other people, whether healthy controls or patients with other problems.
• I’m now more aware that people who seem healthy, as I still do, might be hiding a severe problem. That person shuffling slowly down the sidewalk might feel ecstatic just to be out of the house and among other people. In short, ME/CFS has made my heart more generous. Maybe it has made some people kinder to me, too.