Unfortunately, CFS is not the only illness whose existence the medical profession generally refuses to admit. There are a host of other syndromes or symptom constellations that doctors can't find markers of and thus call psychosomatic. Generally, people suffering from these conditions congregate on message boards where they develop a culture and community. Sometimes this is truly productive research sharing and emotional support and sometimes it promotes alternative treatments of dubious efficacy and speculative science based on amateur readings of research. What's really overwhelming is the disconnect between the medical profession and the people they exist to serve. These people need help and yet doctors seem to push them away because doctors are too uncomfortable with a state of not knowing or not understanding.
At some point you start edging out of the realm of medicine and into the realm of expectations.
So you're feeling bad, and you go to the doctor. The doctor listens to your symptoms, and does some tests -- blood tests, MRIs, listening to your chest, whatever -- for the most common causes. They come back negative. So he talks to some colleagues, reads his old reference books, Googles around a little, and comes up with a longer tail list of possibilities. Runs some more tests, they come back negative.
Now what?
Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment.
A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help? With no known underlying cause, CFS is as likely to be a variety of different problems, with similar, overlapping symptoms, as it is to be a single disease or condition. Some people "diagnosed" with CFS may actually have the same, currently-unidentified problem; some may have a different problem; some may have an atypical presentation of a disease or condition that we know about, and can treat.
That last one is especially troubling: by labeling a constellation of symptoms, you have created a monolithic condition, in peoples' minds. If you tell someone they have CFS, because they match the constellation of conditions, they will stop looking for any other answer. If what they actually have is an atypical presentation of a known condition, they might never be diagnosed with it, because they miss the significance of new symptoms as the condition progresses.
That's why a lot of good doctors treat unknown conditions in such a way so many patients find so unsatisfying. They rule out the likely problems, make sure you don't have anything unlikely that would kill you if left untreated, and then ... wait for more information. Wait for you to develop new symptoms, wait for new well-defined diseases to be discovered, and try to manage the symptoms as best they can be.
This is why, as someone with a mild case of this illness, I greatly prefer the recently suggested name "Systemic Exertion Intolerance Disease". At the very least, it is a more precise description of the most distinctive attribute of the illness: that for someone with it, overexertion causes a particular cluster of symptoms: headache, brain fog, general malaise. (Those symptoms are nonspecific by themselves, of course, but they way they show up after overexertion -- often hours later -- is, AFAIK, unique to this disease. The threshold of overexertion varies from person to person and perhaps even from day to day.)
I think you're probably right that there people with other conditions, which present somewhat similarly, who get diagnosed with CFS even though their condition has a different cause from what I have. I'm not even sure that fibromyalgia, often discussed in the same breath with CFS, is the same illness I have (I've never had muscle pain with this).
I don't have a problem with doctors saying they don't know what they can do and waiting for more information. It's the ones who can't admit they don't know, and therefore say it must be psychosomatic and should be treated with antidepressants, that I have trouble with. Fortunately my doctor never did that.
Generally the solution is to come up with a descriptor like "Irritable Bowel Syndrome" or "Ideopathic XYZ" - these labels basically say that "you have some of so-and-so set of commonly co-morbid symptoms and we can't pin down a cause in your case". Not useful for cures, but useful for lumping together research projects and for managing symptoms. "Chronic Fatigue Syndrome" is one such label, and may be a cluster of diseases that present similarly.
The problem is when doctors and researchers lump these things into the "crazy patient" bin and time spent helping these patients as wastes of their time, rather than just hard cases.
> Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment.
I think the thing that I see missing most in medical treatment is a sense of empiricism. That's part of why I really value my doctor - he's less about "what particular disorder", and more about "how is your quality of life?"
If I go to him with a particular problem, we focus on that problem, but he's always referencing back to overall quality of life and management, rather than "fixing a problem" and walking away. Every time I see him there's a recheck on any existing or recently addressed problems, and usually a screening for something that they're trying to reduce on a patient-population basis (alcoholism, for example)
> A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help?
I don't know that that is really all people want. But even the name itself is helpful, yes -- it gives you something you look up and understand what is happening to you, it helps you find and connect with others, and for practical purposes (say, negotiating reasonable accommodations at work) being able to name a disease you've been diagnosed with is obviously helpful.
>and slap a name on it, like CFS. But does that help?
If after 10+ years of being told there's nothing wrong with you while struggling with every aspect of life, and as it opens up the possibility of getting financial assistance from the state - yes. It helps immensely.
That's not being particularly generous. If there is no evidence of a physical problem, you get kind of stuck. Doctors have tried hard to find a physical cause for a number of these illness.
As an example, the CDC spent years investigating Delusional Parasitosis, despite evidence it was mental illness, precisely because the sufferers were so insistent they were truly sick (See bottom of https://en.wikipedia.org/wiki/Delusional_parasitosis). They didn't find anything, and the treatment remains antipsychotics, which do appear to work.
