5 ms·

1) You diagnosed yourself with CFS 2) Your condition matches a number of viral and post-viral conditions which would explain why your chosen treatment worked

• cfshacker 15y ago
  "I still think it's a mental illness." Why? What does "mental illness" mean to you? You go on to say it's a diagnosis of exclusion, and you don't know for sure what you had/have -- isn't that the point? I guess we need to be careful with our definitions of "mental" in "mental illness". For example, major depression responds rapidly to ketamine (http://www.newscientist.com/article/dn9696-ketamine-relieves-depression-within-hours.html http://www.newscientist.com/article/dn9696-ketamine-relieves...), and other NMDA antagonists may prove clinically useful in treating that "mental" illness. However, there's also the "maladaptive beliefs" side of "mental illness" which may be applicable to depression -- change how you think, change how you feel emotionally -- but their application to CFS as anything other than a mild management technique is absurd and has been proven time and again to be a dead end. Nevertheless, the implication from the psycho-social CFS school is that if you change how you think about your illness, you can think yourself out of your condition. That's absurd. They talk in terms of validation, needing respect, and saving face by coming up with symptoms; i.e. that you, the patient, are neurotic. It's pernicious nonsense. The focus on viral aspects is far from a dead-end - see the work of Dr Martin Lerner and his use of valacyclovir and valgancyclovir, for example. There was also research done in Australia that CFS may be a "hit and run" brain injury cause by a virus or viruses -- is a physically damaged brain a case of mental illness or just plain illness? Either way, it's not something that changing "maladaptive beliefs" will solve.
  • ZoFreX 15y ago
    In my case I mean, what I had was almost certainly mental. I strongly agree with you that mental illnesses have a very strong physical component, if not being completely physical. I think it's incorrect that they are sometimes thought of as being "imaginary" or "in your head". You don't tell someone their heart disease is "just in your heart", and you certainly wouldn't tell someone with a brain tumour to buck their ideas up! > their application to CFS as anything other than a mild management technique is absurd and has been proven time and again to be a dead end Given that CFS is not defined, I would strongly challenge anyone claiming that such-and-such is "proven" with regards to it. I know the viral aspects are a big thing, at one point my doctor suspected I had post-viral fatigue syndrome (which affects people who had mono that just.. sticks around a bit after?) Another interesting anecdote of mine is that one of my friends "had CFS" and was "cured"... she had anaemia. Like, basic, common-or-garden iron defeciency. You would not believe how many health officials she went through before a chance conversation with an ex-nurse led to the correct diagnosis. So I do wonder how many poor souls out there are suffering from crippling fatigue that could be quite simply solved!
    • ScottBurson 15y ago
      > one of my friends "had CFS" and was "cured"... she had anaemia Just so we're clear, this point is not in debate at all. There are indeed many possible causes of fatigue which need to be looked into. I'm sure many of them get lumped into the catch-all category of CFS before someone realizes there is a less obscure cause than EBV/HHV-6 infection. On the other hand, my case was characterized by two phenomena which, AFAIK, are quite specific for EBV/HHV-6. (And yes, I mean "specific" in the statistical sense: they are rarely associated with any other condition, and thus, as diagnostic cues, would generate few false positives.) The first is the fact that my symptoms began after a flu-like illness, and were clearly not present before that illness. The second is that I would have the symptoms as much as 48 hours after exercise. I'm not a doctor or medical researcher, but I have yet to hear of another disease with that property. Many illnesses make exercise unpleasant, but they tend to do so at the time the exercise is taking place, or right afterwards. A 48-hour delay is bizarre. (My SWAG(†) is that it has to do with the release of growth hormone during the post-exercise recovery process. Growth hormone triggers neurogenesis, among other things, and I suspect that the virus is somehow taking advantage of or interfering with neurogenesis. Just a thought.) († SWAG = Scientific Wild-Assed Guess) > Given that CFS is not defined, I would strongly challenge anyone claiming that such-and-such is "proven" with regards to it. Fair enough, but cfshacker also has a point: some doctors have tried for years to treat CFS as a "mental illness", with very limited success. Now to the main point: > I strongly agree with you that mental illnesses have a very strong physical component, if not being completely physical. Well, if that's where you're coming from, why even use the term "mental"? If you think that your condition was rooted in a neurotransmitter imbalance or something like that, why not just say that? Then we're not debating whether it had an organic cause, we're just debating what kind of organic cause. The irony is, I absolutely do believe in psychosomatic illness. But I believe its causes are emotional. If the cause is actually physical, it seems to me this contradicts the very definition of "psychosomatic". EDIT: formatting.
• ScottBurson 15y ago
  Of course you are right that CFS is a catch-all term for what is probably a number of conditions. If you say that you had something that fell under that rubric that you are sure was of emotional origin, I would be the last to argue with you. But what you need to hear, evidently, is that a common cause, I would guess the most common cause, of symptoms that also fall, for lack of better diagnosis, under this category, is clearly organic. I didn't come up with the idea of taking valacyclovir myself; drugs in this class are being used to treat this particular type of CFS by researchers such as José Montoya at Stanford Medical School: http://med.stanford.edu/news_releases/2007/january/montoya.html http://med.stanford.edu/news_releases/2007/january/montoya.h... So the fact that "CFS" is really a catch-all for several poorly-understood conditions is really the key point. You can see from that link (fourth paragraph from the bottom) that researchers like Montoya are keenly aware of this. The Economist story, in contrast, leaves the impression that Wessely is approaching CFS as a unitary condition; this could be the reporter's error, but it doesn't much matter: the story is still objectionable. You are actually the first person I have seen on the Net saying that you have been diagnosed with CFS that you are convinced is psychogenic. Again, I have no desire to argue with you about your own case. I think, though, that cases like yours are a minority among CFS sufferers, probably a small minority. (Stories like mine are not hard to find at all.) But as far as who is holding whom back, I couldn't disagree more. Firstly, I know the connection between EBV and (many cases of) CFS has been suspected for at least 20 years, because I have found historical references to the possible connection. Acyclovir, the first of this class of antivirals, dates back at least to 1982. Yet it's only in the last few years that doctors like Montoya have been experimenting with antivirals for CFS. I think that part of the reason it has taken so long has been the belief, at one time fairly widespread in the medical community, that CFS is always of psychogenic origin. Secondly, I don't know what kind of research someone like Wessely could do that would be of any help to you. What you need, by your own argument, is a therapist to help you get in touch with the emotions whose repression is causing your symptoms. What could Wessely do to facilitate this process? I would ask you to be careful when throwing around statements like "They enjoy having a label they can hide behind". While this could be true in some cases, you don't know that these people don't have an EBV or HHV-6 infection, or some other physiological problem. And I don't know how you would think that I would "mock and denigrate" people with CFS. The only people I am mocking and denigrating are those who claim that CFS is necessarily always psychogenic. I have CFS myself, did you get that? (And BTW my doctor agrees; he's tested me for everything else; this isn't just a self-diagnosis.)
• ScottBurson 15y ago
  One more point. It sounds like we agree that the term "Chronic Fatigue Syndrome" is not terribly useful. Personally, I don't think "Myalgic Encephalopathy" (or "Encephalomyelitis") is any improvement; I haven't had any myalgia. The term we should be using, I suggest, for the subset of these cases that we hypothesize to be caused by EBV or HHV-6, is "Chronic Viral Encephalitis". That term has been used for certain rare infections, which I gather are more severe than what usually winds up being described as CFS. Still, the meaning of the term is quite clear: a chronic viral infection of the brain. And that is what we're talking about.