Chronic fatigue syndrome
economist.com
economist.com
Anyway, in the third week of that March I had a flu-like illness. It wasn't too different from the dozen or two other such illnesses I've had in my life, although it was perhaps among the more severe, lasting a full week.
After giving myself a couple of weeks to recover I attempted to resume my previous level of activity. But I was beset by a persistent malaise and severe headaches. After a few weeks it became clear that anytime I exercised, somewhere between 12 and 48 hours later I would have these symptoms.
To make a very long story short, I eventually figured out that these were common symptoms of CFS, a condition I had heard of (20 years ago I knew someone who had it) but had known next to nothing about. Further poking around on the Web led me to think that it was probably caused by an Epstein-Barr infection.
While I had originally hoped it would get better on its own, eventually it became clear that it was getting worse. I asked my doctor for a prescription for valacyclovir, an antiviral drug, and he agreed. I started taking it at the beginning of (this) March. It has helped quite a bit, though I'm not completely cured -- I've been exercising some, and I still get the symptoms afterwards, but they're not nearly as severe.
I'm relating all this to explain why I think it's ludicrous to suggest that this illness is hysterical. I was indeed under a lot of stress at the time I contracted it; I was between jobs, my previous job having ended in a particularly stressful way (it was a startup that ran out of money). If you wanted to say that my stress level was a factor in the etiology of the infection, I'd be the first to agree. But that's very different from saying it's a mental illness.
There is a certain institutionalized arrogance in the medical establishment. Some doctors -- not all! -- when faced with a patient whose symptoms they can't explain or treat can't stand to admit that modern medical science still doesn't know everything about the human body. So rather than admitting their ignorance and powerlessness, which would be hard on their egos, they say the disease doesn't exist. Now, which of us has the mental problem?
I don't begin to condone death threats. There's no excuse for such behavior. But there's also now plenty of evidence for an organic cause of many cases of CFS. The working hypothesis, as I understand it, is that it's a viral infection of the brain, where the virus is a member of the herpes family, usually either Epstein-Barr or human herpesvirus 6. Hence the use of valacyclovir or valgancyclovir, which were invented to treat herpes infections.
BTW, before trying valacyclovir (and indeed before realizing that I had CFS) I did try other medications, which did nothing. I seriously doubt my improvement can be attributed to the placebo effect.
So although, again, I don't condone death threats, I also have very little patience with those who, in 2011, are still putting forth what by now is a discredited theory, one that doctors should have been too ashamed to advance in the first place.
(Someone is going to point out that some patients have felt somewhat better when given antidepressants. Let me tell you, this is a depressing disease, so I understand how that might happen. I have not heard of anyone being cured solely by antidepressants.)
(I have no idea if CFS is "in your head" or not. But even if it is, it can still be totally real.)
Sure. In-your-head diseases exist, and they're very real. Placebo effects, for instance, have been very conclusively shown to be extremely powerful - there's no question about the reality (though some still do...). But the odd recurrence of Epstein-Barr is very odd if it's all in your head.
1. The effects of the disease aren't in your head at all, they are very real, and
2. The cause happens to be in the brain rather than some other organ of the body, but it is not available to the conscious, thinking mind.
That doesn't mean that we should stop researching non-psychogenic causes for common ailments, as has been mentioned, ulcers and even some forms of CFS have been shown to have a clear cause and treatment. However, it seems a shame that this entire line of research has pretty much been abandoned...what happened, after all, to the hysterical diseases that Freud was successfully addressing in the early part of the last century? I doubt very much that they just stopped occurring.
Thanks.
BTW I couldn't see an email address in your profile.
I was treated for depression (with drugs) which did help, and antibiotics for the strangely recurring strep-like diseases and a few other misc things I don't remember. It took about a year and a half to really feel all the way better. I had to drop out of that year of school and go back later.
It sucked huge, but no one ever suggested that my fatigue or depression was "in my head". I guess I was damn lucky.
All in all, it was as stressful a time as I can recall ever having experienced.
Again, I'm sure this contributed to my susceptibility to this infection. I just don't think it was the entire cause of my condition. My life now is certainly far calmer and more stable, yet my symptoms are not gone.
2) Your condition matches a number of viral and post-viral conditions which would explain why your chosen treatment worked
Sorry, but your post is in no way, shape or form an argument that CFS is not a mental disorder.
I've been diagnosed with CFS. It sucks. A lot. I still think it's a mental illness. The difference between me and most people is that I don't think that makes it "fake" or "not real" in any sense at all, but I'm sure if you told your boss you were too tired to get out of bed because of a mental illness, you'd be laughed at. So what? The same could apply with major depression, less people would argue that depression doesn't exist.
People like you are holding us back, people using reasoning similar to yours are justifying this campaign of harrassment upon researchers that are just trying to find the truth. They're not trying to prove people with CFS are lazy, or making it up, or even that it's all in the head - they want what everyone who has the disease should want - to find out what it is.
An additional warning to anyone wanting to compare anecdotes: CFS is a "diagnosis of exclusion". This is a fancy way of saying that actually, we don't have a definition for this disease. It's entirely possible that multiple poorly-understood diseases with similar symptoms are leading to a single diagnosis ("CFS") at present, which complicates any effort to share experiences.
On the front of these people sending in death threats... I know quite a few people that claim to have CFS. Some of them quite clearly do not have the same thing as me, were not diagnosed by doctors, and would resist quite violently any attempts to re-classify them. They enjoy having a label they can hide behind, I guess.
Lastly I want to say: This is a real thing, or at least, there are things we don't understand and this is the label that gets put on it. I don't know for sure what I had, I don't know if it was physical or mental, but it was real. I've encountered many people, including licensed doctors, that mock and denigrate people with this condition, and if you are one of those people I would implore you to rethink your position. We know very little about the connection between our physical and mental well-being, but at this point it's incredibly clear that there is a very strong link, and that mental issues can cause very real, physically observable and empirically testable problems.
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...), 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.
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!
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.
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.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.)
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.
IANAD, but if your symptoms are exercise-induced, then maybe you have Clinical Endocannabinoid Deficiency and not CFS? The reason why I suggest this is that if you're getting flu like symptoms after exercising, to me this suggests a possible role for inflammation. And it would possibly explain why your symptoms are exacerbated by stress.
There isn't enough research on CECD that doctors are able to yet diagnose people with it, but I think the research that does exist so far is pretty compelling.
But I do agree that's it's highly plausible, indeed very likely, that inflammation plays a role.
I suppose I could get a medical marijuana prescription, but that really doesn't appeal to me. My case is relatively mild anyway, I gather, compared to some of the nightmare stories I have read.
I don't know anything about the validity of the research being done in this case. That being said, when people are talking about mental illnesses they aren't referring to hysteria. That is not a mental illness.
In Wessely's own words on a related illness "Sufferers from mysterious condition that lie outside conventional medical practice no longer consider themselves to be oppressed by spirits and demons but by mystery gases, toxins and viruses. This is particularly visible in the changing nature of mass hysteria." http://www.cfsinfo.be/Documentatie/AA%20%20Strijd%20classifi...
Wessley's highly controversial views and work have been subject to much criticism -- absolutely none of which is reflected in this disappointing puff piece. There's plenty of more news-worthy stuff that's been happening in the CFS world (both good and bad) in recent times than years-old revelation that people don't much like Simon Wessley.
The core problem is simply that this conclusion isn't true: "But a psychiatric explanation would not delegitimise CFS. And it might improve treatment and help patients get better, at last." Wessley's theories have been studied. They offer very little to very sick people. They don't get better. It does delegitimise the extremely severe nature of the illness. If they did legitimise, and -- far more importantly -- cure sick patients, great! That would be wonderful. But they don't. We know they don't. Shame on the Economist for not saying so.
Psycho-social explanations of CFS seem to be nothing more than "hysteria" rebadged for more modern times. It's easier to say "Well, maybe it's your fault!" than to accept the hopelessness of not knowing what's going on.
Actually, that's not true, there has been (and is) plenty of work on the physical abnormalities. For those interested in current happenings in the CFS world, it's worth following: http://phoenixrising.me/ .
> It does delegitimise the extremely severe nature of the illness.
How does merely positing a psychosomatic origin for the syndrome "delegitimise" its "extreme severity"? Or is it you thinking that mental health is somehow less important than physical health, which doesn't even make sense considering the brain is an organ too?
> Psycho-social explanations of CFS seem to be nothing more than "hysteria" rebadged for more modern times. It's easier to say "Well, maybe it's your fault!" than to accept the hopelessness of not knowing what's going on.
Uh huh. And it's easier to take the idea of mental health being relevant as a personal insult, like people are saying it's one's own fault, than to accept the hopelessness of not knowing there's a magical cure as soon as the doctors discover the sole physical cause.
Again, I really want to read further on research being done on CFS and other subjective and idiopathic syndromes. It's interesting from a medical and social standpoint and I'm close with several people who suffer with such issues. But I've also seen their blind spots related to the issue. I'd like to hear more on the work that's disproven psychiatric origins of the syndrome, since while the editorial touched on Wessley it seemed more to be talking about the need to explore all possible causes and solutions of a problem affecting many.
The kind of "mental illness" we're talking about here with CFS & the Wessely/UK psychiatry school of though though is old school _neurosis_. You're not sick, you're neurotic. You want to save face by coming up with symptoms. You need validation from a doctor. You remain sick because of the 'secondary gain' you receive in terms of attention. You need to avoid personal responsibility and blame, and so on.
It's horrible stuff. For quotes from the horse's mouth, see: http://www.cfsinfo.be/Documentatie/AA%20%20Strijd%20classifi... , and hopefully you can see why his views have been so controversial.
It's true that CFS is something of a catch-all for a variety of illnesses, from post-viral syndromes (see Dr Lerner), hypothyroid problems, diet and gut-related illnesses (undiagnosed coeliac patients, for example), neurological syndroms (some people are helped by neurofeedback, and Jay Goldstein wrote some fascinating books on the neuroscience of CFS/ME), hormone disorders (e.g. adrenal, but also others), possible retroviruses (XMRV looks 95% unlikely, but a handful of people did well on antiretrovirals), possible hit-and-run viral brain injury (as Australian research has indicated) and on and on. Hell, I recently came across a guy who recovered almost immediately and totally after 30 years of debilitating fatigue by taking a relatively recent IGE-binding drug (Xolair). Plus, there's the potential of an underlying viral or other cause that in turn causes a differing array of symptoms.
The problem is not just that we don't know what CFS/ME is (to the extent that it's a uniform thing), but we're pretty lousy at dealing with all the other surrounding illnesses as well. (Hypothyroid is a great case in point, IGE is relatively new, etc etc,.)
What's pretty clear, however, is the vast, vast majority of these patients, whether suffering CFS for known or unknown reasons, are not neurotic, and for The Economist, or anyone, to insist that "neurosis" should be taken seriously as a basis for medical diagnosis and treatment in 2011 is simply appalling.
edit: ugh, Wessely, not Wessley. my bad.
But he's not just a part of the global scientific community, but also a researcher at a prestigeous university in the UK, where the poltical climate of the last few years has happily called everything off mainstream antisocial. The UK is a country where there was a serious discussion about not calling obese people obese anymore, because it is not insulting enough, but that one should call them fat. In such an environment, a theory among many, stating that CFS is caused by mental illness, can easily be spun into CFS sufferers just being lazy folks who don't want to work, because science says so. (Ignoring that mental illnes, like a physical illness, is actual illness and not a bad character trait)
This is a problem with the UK, not with this researcher.
My last doctor (a very good, well-known Rheumatologist in my area) spent a long time working with me. After months of trying everything he knew, he put it to me like this:
* You have Chronic Fatigue Syndrome. Name sucks, but that's what it's called right now.
* What you have is real, it's not "in your head".
* A typical outcome is that you will start to feel better when you turn 50 or 60. In other words, my best outcome is to hang on for another ten to twenty years and hope that I feel better then.
I've been dealing with this since college, but this is the year that I finally had to admit I was failing, and had to quit my job.
http://www.treatmentcenterforcfs.com/
He recommends a collection of tests which could confirm a diagnosis of EBV or HHV-6. (My doctor and I agreed to skip the tests because my symptoms were not nearly as severe as yours and the tests are not quite as reliable as one would like; it seemed simpler just to start me on valacyclovir and see what happened. But for a more severe case like yours, the tests are probably a good idea, I would think.)
Symptoms are as real as the patient feels it. It's not over until they feel cured. Anybody who's struggled with something outside their power knows that strength of will can work miracles but only get you so far.
My brother and I both got CFS at the same time, with similar initial-diagnoses (tested positive for Mono), and we've been fighting off the effects for quite a few years now. For myself, I went from soccer-playing high-energy kid to going between bed and the couch for about a year and a half, in the span of a few days.
What changed after a year and a half was that I was getting ever-deeper in a depressive cycle, and managed to recognize it and escape - I realized it was literally a lethal path if I didn't fix something. Very good motivation, that. From then, I basically spent 5 years wasting a little more energy in everything I did, and very very slowly got some stamina back - it took me about 5 years from the start of it all to get to the point where I could go back to school for a couple hours a day. The remaining year and a half got me back to almost regular hours.
I still have some problems, but am able to get around most of them now because I have very acutely learned the difference between being fatigued and literal physical exhaustion. And I've become extremely patient / stubborn in my progress - a few years to make a small improvement isn't all that long any more. I still waste energy left and right, but it's no longer a necessity.
I am a rare exception, and I count myself lucky, not strong-willed. Getting to where I am now hasn't been entirely my doing - it has faded on its own to a fair degree.
---
So, throughout all this, I've kept watching the research a bit, and one thing sticks out like a sore thumb - the umbrella term. Studies have a hard time finding individuals, and a hard time finding ones with possibly-similar causes, because it manifests so many different ways (my brother had and has severe migraines, I've had digestive and muscle pains). And if it doesn't help everyone, it's not a cure. It's disorganized and counter-productive, and the same thing happens to almost every umbrella term in every field.
And due to all of this, we've had tons of blood tests, left several doctors who take the stance that it doesn't exist, and found a surprising amount of people with similar experiences. Doctors who can't accept things they didn't learn in school disgust me - I'm very glad we've found a couple that don't. They've been wonderful.
For my brother and I, I can say this: we don't know how to manifest positive tests for Mono using our minds. The rest of it is possible, but I find it unlikely, and neither of us were under odd stresses prior - both good at school, had friends, no real family troubles, etc. No doubt some of it is psychosomatic, but it varies by person, and there are definitely other factors in play in many cases. I very highly doubt many (most?) CFS cases are entirely psychosomatic. I have no problem with it being psychosomatic (really, it wouldn't bother me - it'd mean less wasted on tests and more on attempts), I just doubt it's the main cause.
If we find the cause or a partial cause of a syndrome, it will get a new label. That is why "AIDS" has given way for "HIV infection", "Scurvy" for "Vitamin C deficiency", etc. CFS, being a syndrome, may Or may not have a single cause. We simply do not know.
A (IMO) problem with such vague syndromes is that, in general, it pays of to claim to be part of a a larger group. It is more accepted to say your son has ADHD than to say he cannot concentrate well, or that one has CFS than that one is lethargic., does not feel like doing much, etc.
Net effect is that, even if there is a group of true patients with well-defined symptoms with a common cause, it is hard to separate them from "me too" persons (a group that may include persons that have a different unknown ailment with similar symptoms)
Granted. But medical doctors are people too. And I can tell you from my experience in the completely different field of technology that I'm far more willing to work with clients who are willing to listen, appreciate effort on their behalf, and are grateful for a solution or workaround that helps them even if it wasn't what they were hoping to hear.
If a client made death threats to me (I've had some go off the deep end but never that far) I have to say I think that'd be a swift end to the working relationship.
Yes. And did prove conclusively that XMRV is not the cause for CFS.
> Scientists haven't decided not to study CFS because someone on the internet hurt their feelings.
No. Funding for research is what makes scientists study anything. Direct your anger to raise more funding for CFS research and you will get closer to knowing the patho-physiological cause (whether you like the answer or not means absolutely nothing).
>Medicine isn't omniscient.
Just like any other human endeavor.
> Blaming extremely sick people for the lack of research into their predicament is absurd.
The blame is very justified when you start receiving death threats.
Talk of biting the hand that feeds. Jeez!
CFS, in the UK, is a wastebasket diagnosis based on very loose and broad criteria. It's absurd for anyone to suggest it is one condition. I know of people who have been diagnosed with CFS, but then subsequently diagnosed with MS, bone disorder, and other conditions. ME, however, looks to be a specific subset. CFS and ME are not the same - ME is a smaller sub section of the patient population.
In the absence of a biomarker and test, we are however reliant on diagnosis based on symptoms, and so I'm pleased to see the new ME International Consensus Criteria published this month. These diagnostic criteria were created by 26 researchers and doctors from thirteen countries, with 400 years of professional experience, who have treated 50,000 ME/CFS patients. Their view is that the correct diagnosis for many patients is ME, not CFS, and that ME is a very specific illness involving multiple systems. There's a copy hosted here: http://www.wpinstitute.org/news/docs/me-international-consen...
Shiven, no sensible person is condoning attacks, but you have completely misunderstood what is happening. The reason people are so angry with the likes of Wessely is that in recent years ALL of the very small amounts of UK gov money going into ME/CFS research has gone to psychiatrists, when there's plentiful research showing (when patients are properly classified using proper criteria) they are physically very sick indeed with significant dysfunction in the immune system amongst others. It's indefensible. The majority of sensible patients are saying that they want biomedical research. It's absurd to suggest, as you are, that all ME/CFS patients are being self-destructive and stopping research by attacking researchers when it's a tiny minority. That kind of stereotyping is offensive, in any context. Let's not, as the press have blindly done this week, tar all patients with the same brush.
The poor results shown by The PACE Trial, even despite its sizeable cost, show the limits of what psychiatrists are able to do to treat ME patients (or even CFS patients). The psychiatrists are not succeeding in treating these conditions, and so clearly more work is needed.
If Prof Wesseley was threatened in the way he says (I've seen no evidence or heard of prosecutions) then those responsible must be prosecuted and if necessary jailed. However this drama created by Wesseley apparently putting out a press release (why?) is distracting us from the real question, when will the UK gov start putting funding in place to (additionally) look at biomedical causes of ME, which is a quietly devastating disease?