What are you, kidding me? Good news in the land of ME/CFS? Surprisingly: yes.
Every patient has her own nomenclature for her illness, because “chronic fatigue syndrome” has stuck around so long as a garbage diagnosis, and myalgic encephalopathy/encephalomyelitis has never been solidly defined. But now we have both a name and a set of criteria that make solid sense and should greatly aid research efforts.
The International Consensus Criteria was developed by scientists from 13 countries, after exhaustive research. (For a good summary and analysis, see this article by Kimberly McCleary, president and CEO of the CFIDS Association.) Here are some very important points.
1. The illness is defined foremost by the symptom that disables so many of us: post-exertional malaise, now with an even more specific name, post-exertional neuroimmune exhaustion (PENE). This is major. The popular perception of ME has been that it’s all about fatigue, due largely to the term “chronic fatigue syndrome,” which is both vague and misleading. Yes, we are certainly fatigued, but it’s because of PENE.
This is why all that “we can cure fatigue” quackery is so wrong at its very foundation. They intentionally conflate CFS with “fatigue,” which is shooting at the wrong target. I’m actually in the mood now to go pick a fight with one of them, like Teitelbaum, by asking “how does your fatigue product address neurosensory, perceptual and motor disturbances?” (Of course treating fatigue is part of ME, especially for people with milder cases who need help through, say, a work day.)
2. The definition of ME here is specific, yet flexible enough to allow for the range of symptoms that patients experience. The criteria call for a certain number of symptoms in a certain number of categories, all fitting inside the three broad categories of neurology, immunology, and energy production. All current patients can learn whether they meet the criteria for ME, and people who don’t know anything about it can be given a solid diagnosis by their doctor.
This means that one of the biggest problems with ME/CFS research — how the patients are identified as having it — has just been reduced quite a bit. Researchers will be able to use the consensus criteria to replicate each other’s studies, something that has been difficult in the past. People can find out if they’ve been misdiagnosed in some way, since ME symptoms can mirror so many other illnesses, including mental ones.
Now don’t close this page in a fit of red-hot fury or anything; I have the same disgust for Simon Wet Parsley* that so many of us do. But it is certainly true that patients with major depression and even bipolar disorder have been misdiagnosed, in both directions. This is unquestionably good, because those patients can likely get much better treatment for their illness. Additionally, people who have self-diagnosed ME/CFS because they feel tired all the time can now rule it in or out, and get the proper treatment for a different problem or illness, if needed.
3. It’s true that this consensus has only just been published in the Journal of Internal Medicine, and it may certainly end up being debated on both a large and a small scale. But a great deal of the animosity surrounding XMRV rests so squarely on the vagueness of defining criteria, so this is in any case a great step towards removing some of the argument. If you have been reading any ME/CFS discussions lately, that’s a Herculean victory.
I recognize that my excitement about this consensus comes partly from the fact that it’s designed and worded in a way that matches my own educated guesses about ME/CFS. I’m not completely unbiased — and please, if you have a different take on this, do post a comment as I personally have not heard any naysayers yet, and I want to know what problems, if any, exist with this. I remember reading the news of the original XMRV paper, and feeling cautiously optimistic. This, on the other hand, made me joyous. So my predictions are premature, but I don’t think they’re impossible.
Patients who match the criteria now have an excellent rebuttal to any “It’s all in your head” they might receive. It’s also an answer to another chestnut, “You just need to get more sleep.” It’s probably too optimistic to hope that some patients may also quit turning to quacks and snake-oil salespeople, now that the diagnosis/treatment situation has been better clarified, but what the hell, I hope this too.
I’ve called my illness “chronic fatigue syndrome” because of the impression that patients whose symptoms are predominately immune fell into that category, while “ME” was for people with predominately cerebral symptoms. I was partly right about the focus on brain dysfunction, but have learned since that many of my immune-seeming problems are in fact due to just that. (Insert joke here.)
Going through the criteria was surprisingly emotional for me. It’s one thing to fall into a vague category of patients; it’s another to show objectively that I meet the criteria for a much less vague illness. There were symptoms listed that I have in spades but haven’t previously seen described so perfectly, such as “recurrent feelings of feverishness with or without low grade fever,” under the category of “Loss of thermostatic stability.” In a sense it was like having someone validate my symptoms, some of which I’m prone to think are all in my head. By the time I was done reading and rereading the paper and the criteria, I’d decided to identify myself as having ME from now on, while referring to the illness in general as ME/CFS.
Although nothing at all has really changed, it feels a little like a change in identity. A change that I deeply appreciate.
* Real name Simon Wessley, the much-maligned U.K. doctor who insists that the etiology of ME/CFS starts in the mind. He’s close; it does start in the brain, but not the thinking part of it. Apparently his name becomes far more apropos when translated into and then out of another language, and thanks to Linda for pointing this out!
I’m worried that patients are leaping onto the XMRV bandwagon before the science is anywhere close to verifying not only the presence of the retrovirus in CFS patients, but even whether it can be treated at all. It seems to me that since we’ve been relegated to trying alternative and even fringe treatments if we want to find relief, the idea of a science-based answer is so attractive that the actual scientific process is being ignored.