Deep down in your heart of hearts (or whatever you want to call it) — do you believe/think there will ever be a cure for CFS? Or at least an understanding of causes for it?
which I like because I feel more comfortable talking about my beliefs and speculations than the hard science. And then the timing was funny as this story came out yesterday. It’s a report on a study published in the Proceedings of the National Academy of Sciences (PNAS), detailing a replication study seeking XMRV in patients with chronic fatigue syndrome. The PNAS paper had been held for some time, frustrating and angering patients, and now that it’s out, the results are interesting. Although the researchers did not find XMRV, they did find a related family of retroviruses. This isn’t going to end the controversy over XMRV anytime soon — there are many questions remaining about the selection of patient cohorts, why other studies were unable to find XMRV, and so forth — but more information is always good.
This is part of my answer to the question, this fact that right now there is more interest in CFS research than there has been in years. For one thing, this is obviously directly good news for people who want a cure. Even if XMRV or MLV turn out to be complete red herrings, who knows what else may be discovered along the way. And a major side benefit of this research is that more people — physicians and otherwise — learn that CFS is a true somatic problem that warrants research. The disease and the people who have it receive validation, which may lead to better care and further research as well. So these are all positive signs even if there are some very questionable aspects, such as patients starting dangerous treatments for things they don’t even know they have yet.
The problem with CFS is that, although we patients tend to insist on it being treated as a disease, it is not one. It is a syndrome — an association of related symptoms — and those symptoms and their severity differ enormously from person to person. (It’s important to note this does not mean that anyone with a few fatigue-related symptoms has CFS. There are several sets of different but related diagnostic criteria.) Some patients have mostly neurological symptoms, and tend to identify as having ME (myalgic encephalopathy), while others like me exhibit almost exclusively post-viral symptoms. There are endless debates over the name of the syndrome, and whether it should or shouldn’t be lumped together, as it often is, as ME/CFS. This is why I remain skeptical about XMRV: does it really seem possible that a single retrovirus, or even a family of them, could cause such an enormous disparity in etiologies, disease progression, symptoms, and so forth? Possibly in one particular set of patients, but what about everyone else?
So I don’t really envision a vaccine or gene therapy anytime soon or ever that will wipe out CFS, although I do expect better therapies and treatments. I think what is more likely to happen is that as we increase our understanding of various illnesses, especially autoimmune ones, patients formerly diagnosed with CFS will be found to have something else. This happens frequently enough now (although sometimes in the other direction, as in patients with depression who are later found to have CFS as a somatic cause), and there’s no reason to think it won’t continue. As medical science becomes more knowledgeable about autoimmune disorders, demyelinating disorders, and many other related areas, I think CFS patients will continue to be rediagnosed with more specific — and hopefully treatable! — illnesses. In this sense, medicine will “cure” CFS by redefining patients into other categories, and with luck, having no more use for this “garbage can” of a diagnosis.