2002 paper: Physical or mental? A perspective on chronic fatigue syndrome [physical]

[Don Quichotte]

Where are you coming from DQ

That's a fair question.

This is a long story, I didn't want to bore you all with.

I think it will suffice to say that I was nearly bed-bound and required frequent respiratory support for nearly a year, due to the "excellent" treatment I received from a "leading expert" (this was after 4 years in which I had an "unexplained illness", which he brilliantly diagnosed).
It took me time to realize that he attributed the severe deterioration in my condition (which he couldn't personally understand) to "emotional problems". He was brilliant in playing with words and managed to jeopardize my care and nearly destroy my marriage for a long time.

I will be glad to tell you more, if you want.

Are you a doctor?

Yes I am and despite my physical disabilities I still work, though very part time.

At some point (when I gradually found better ways to manage my illness, using my own clinical skills and finally reached an excellent team of physicians, I could trust) I really wanted to " move on" and forget everything I have been through.
But, I realized that I can't do that.

I hope this answers your questions.

And thanks for letting me join your discussions,

 

[alex3619]

You are welcome here Don Quichotte. We need people who care and who are prepared to look deeply at the issues. I wish you didn't have to go through that though. I wish nobody had to experience this kind of thing. In my experience most who take MUSes seriously have experienced one, either themselves or in someone very close to them. Best wishes, Alex

 

[Don Quichotte]

You are welcome here Don Quichotte. We need people who care and who are prepared to look deeply at the issues. I wish you didn't have to go through that though. I wish nobody had to experience this kind of thing. In my experience most who take MUSes seriously have experienced one, either themselves or in someone very close to them. Best wishes, Alex

Thanks Alex,

 

[Don Quichotte]

I was just thinking that if it true that most who take MUSes seriously have experienced it personally in some way, this may be an edge of the rope to understand why others don't.

I mean you don't have to experience leukemia, Alzheimer, Parkinson's or schizophrenia in order to take it seriously, so why do you have to experience MUS?

 

[Esther12]

Just reading the Tyreman reply:

It is uncontentious that health care practitioners
work to improve patients functionality.

I think that this is a really important point, and that a lot of the problems surrounding CFS stem from a belief that a pragmatic focus upon the measures of 'functionality' chosen by researchers in uncontentious. It's very difficult to measure the functionality of a human being, and doing so can leave a lot of room for researchers to impose their own prejudices, values and beliefs upon their work and patients.

He expands:

The
purpose of treatment and the aims of management
are to enable patients to live their lives and achieve
their goals as effectively and efficiently as possible
by minimizing suffering and enhancing physical
and mental ability

It's just madness to believe that doctors are able to manage their patients in this way. Doctors cannot manage themselves in this way, and neither can anyone else. It's very difficult to understand and pursue ones own goals, never mind trying to do this to someone else who you've only spent a few hours with! It would only be sensible to approach patients in this way if you were confident that they were so incapable of deciding for themselves how they want to live their lives, that the inevitable problems of paternalism, manipulation, etc, were not worth worrying about. They really seem to think these matters are uncontentious.

I think that this is a worthwhile analogy for the understanding some have of functional problems:

To take an analogy:
I may have a computer fault that is the result of
software being incompatible with the hardware.
Because there is no fault per se with either, is it a
physical or a mental problem? The answer is
neither; it is the wrong question and the fault lies
at another level, in a bigger system of organization
that includes (among other things) design. There is
something about the way the whole operates that
is dysfunctional and not explained by examining
either part.
We do not just have to be dealing with a fully
dysfunctional system. Suppose I find that a new
application that I have installed on my computer
causes my printer to crash. The application does
what it is meant to do, so it is not dysfunctioning,
but I have this irritating phenomenon that is functional
in the sense that it is a consequencealbeit
unintendedof the application functioning. The
explanation for why my printer keeps crashing
is that it is a functional consequence of using the
application. My argument is that there are parallel
situations in human health.

one that
is distinctive of my own profession of osteopathy.

An alternative guy? A bit of a surprise. I don't really know anything about osteopathy.

Loughlin reply:

I thought this was the most worthwhile bit.

If I am in the
predicament of having to learn what I think, or
anticipate my own actions, based on some manner
of observational or inferential process, then I am
estranged from my own actions, experiencing
a diminution of my own agency. In such cases a
person may rightly be regarded as psychologically
ill/malfunctioning, with a consequent loss of autonomy.
The language of causal accounts, events,
and processes, may come naturally to those used
to dealing with people in such a predicament,
but they should not make the error of assuming
such language is the normal or appropriate way
to discuss human behavior, in the absence of (as
Sykes puts it) positive evidence to the effect that
the person has a psychological problem. Obviously,
the fact that someone has some manner of
problem (whose specific nature is unknown) does
not justify classifying them in a way that entails
assuming their status as responsible, autonomous
agents has been diminished, especially if they seem
capable of giving good reasons for the things they
do. So Sykes is right about the psychogenic inference
and its ability to sanction the diagnosis of
nonexistent psychological problems.

This reading explains why chronic fatigue syndrome
suffers are right to feel misunderstood,
disparaged, and insulted by the presumption
that their behavior, whenever it varies from the
norm (such as wearing a cap when others in
the vicinity do not) requires a psychological
explanationfor to move into the vocabulary
of psychological causation is to assume, without
argument, that they are no longer functioning as
responsible agents. It is (as the examples cited by
Sykes confirm) to be predisposed not to listen to
their reasons for their actions, and to interpret
any objections they make to diagnoses as further
symptoms, as irrational resistance to therapy
and a further problem to be solved. So there is an
obvious ethical/political dimension to this issue,
as people are finding that their right to be treated
as responsible persons is being implicitly called
into question, with consequences for their rights
to question medical diagnoses and ultimately how
they are treated, but, as Sykes shows, without adequate
evidence. Their status as rational beings is,
in effect, being defined out of existence. Unsurprisingly,
they protest against this treatment.

I read Syke's reply too, but didn't think that there was anything that needed pulling out.

There were some worthwhile points, but overall, these papers seemed less interesting and thoughtful than many of the threads here. CFS papers often seem a bit poor.

 

[WillowJ]

I was just thinking that if it true that most who take MUSes seriously have experienced it personally in some way, this may be an edge of the rope to understand why others don't.

I mean you don't have to experience leukemia, Alzheimer, Parkinson's or schizophrenia in order to take it seriously, so why do you have to experience MUS?

That's a good question, DQ. Good questions are always a great place to start. I don't have an attempt at discussion tonight; just wanted to highlight the question.

Also, ditto to Alex in post #42

 

[Enid]

Just popped in - this is a 2002 paper - physical or mental - surely long past the ignorance of this question in the first place.

 

[Don Quichotte]

That's a good question, DQ. Good questions are always a great place to start. I don't have an attempt at discussion tonight; just wanted to highlight the question.

Also, ditto to Alex in post #42

Thanks,

I can try and answer regarding myself and maybe it will help.

First, I haven't encountered many patients with "unexplained medical symptoms" .
My training was in internal medicine, which is mostly working on medical wards and seeing relatively ill hospitalized patients with known diseases.
My specialty is hematology, which is one of the most precise fields of medicine, so we rarely have patients with medically unexplained disease.

So, I really wasn't aware of the extent of this problem. And, even less so of the way in which it is managed.

In fact, when my treating neurologists told me in the early days of my illness, that there is nothing physically wrong with me, I was quite happy to hear that.

I only started questioning their decisions after a 3 week hospitalization (part of which was in the ICU).
But, even then, their unquestionable confidence made me ask myself if I somehow managed to confuse the ICU team and myself to think that I was truly ill.

I consulted an excellent psychiatrist and told her that I either have serious emotional problems (that make me do such unreasonable things) or all those people are a bunch of idiots. I also told her that I find it hard to believe that all those neurologists (some considered experts in the field) who have independently reached the same conclusion are idiots. She asked me why did I find it so hard to believe that they are all idiots with regards to understanding my illness.

This was the first time I learned about this tension among neurologists and psychiatrists and the way neurologists tend to attribute what they can't understand to "emotional" problems. But, I still thought it was a rare occurrence. I also wasn't sure (at that point) who is correct.

Later, I was told by another neurologist that about half of the patients seen by an average neurologist have "non-organic" diseases. I was quite shocked to learn of the extent of this problem in neurology and also of the indifference of neurologists to the fact that they are unable to explain about half of their patient's diseases. I realized at some point that they do not see it in the same way that I do- patient's who are ill and they don't know why, but as patients who are not "really" ill.

I was also surprised to see how strong those beliefs are, so that even when "objective" evidence for my illness were eventually found, I was thought (by some "leading experts") to have both. In fact, I realized that this too was not a rare occurrence. A recent study "showed" that about half of the patients with a diagnosed neurological disease, also suffer from MUS.

As my MUS happened to be life-endangering respiratory symptoms it became clear to me that I have to start being my own physician and stop trusting those who are considered "experts" in the field.

It took me nearly a year of being nearly bed-ridden and requiring frequent respiratory support. (and times in which I was not sure I will be able to survive) until I gradually managed to have some improvement in my condition so that I could even go out of the house for a few hours (with a wheelchair and my respirator at a safe distance).
I have since had a very slow and gradual improvement, but have not recovered to the extent that I am physically independent.

During that time I promised myself that I will do everything that I possibly can, so that no patient in the world will have to go through this kind of ordeal.
Although, I returned to work in my own filed of practice (very part time) I keep on dedicating some of my time and limited energy to that cause.

I know that I was overall very fortunate and had I not been a physician, I may have not been alive today.
I feel that it is my duty to understand why this happened and to find the way to do something so that less fortunate patients will be treated properly.

I know that most physicians I have discussed this with, either don't believe it (think I am exaggerating and couldn't have been that ill) , or think that this is an extremely rare occurrence, so there is nothing to learn from it in general. Surprisingly, many patients think the same.

In a way I can understand why they are reluctant to believe this-
For physicians it is hard to accept the fact that with all the advances of modern medicine such things can happen on a regular basis with no one noticing. It's like it was hard to accept that death during childbirth was the result of those physicians taking care of them not washing their hands. It was much easier to accuse Semelweiss that he was insane in thinking of something like that. http://en.wikipedia.org/wiki/Ignaz_Semmelweis

For patients it is very scary to think that if and when they become ill they may be treated in such a horrible way. It is much easier to believe that patients who are treated like that somehow bring it on themselves.
It is also (as was for me) much easier to believe that possibly you are not as ill as you think, then to realize that you are to deal on your own with a serious illness, in which your physicians can cause much more harm than good due to their lack of understanding and ignorance.

 

[WillowJ]

thanks for that, DQ. this almost deserves its own thread, though it still goes with the topic of the paper.

that's amazing: half of neuro patients have 'MUS'? ... and yet they are still so arrogant towards us all. It must be very difficult to get into and then go through and graduate from each of med school and speciality school and become a bigshot brain doctor, and then get to real world practice and find you have no idea what's wrong with half your patients or how to help them.

and wow, you've been through a lot; I'm sorry for that but it speaks volumes that you decided to become an advocate. You do fit with us. Some of us are determined to fight the case of all 'MUS', for as long as it takes or as long as we have breath.

It is far past time for med schools to teach: we do not know everything; there will be patients you cannot diagnose, and you must help them as best you can and contribute to research, if you can, so that one day they may be better helped.

 

[WillowJ]

I understand why you are saying that Skyes is ambiguous here and there, and I understand complaints that he in other places at other times betrays us, but I don't understand why it is said that in this paper he ultimately goes with the dark side. He states:

The point is to show that, even if you take a sympathetic view of the concept of psychological causation, there are no sufficient grounds for saying that, in general, CFS is due to psychological factors. Consequently, there are no good grounds for saying that, in general, CFS should be classified as a mental illness.

he does leave open 'CFS' having some persons so labelled who might have mental illness (and I agree that some people with the CFS label, incorrectly so labelled, might have primary psychiatric-classified disease--and who would have somewhat better care if properly diagnosed with their actual disease title), but he specifies that it should not generally be considered so, in his opinion in this specific paper.

When a symptom or condition has no known physical cause, there is a strand of medical thinking which makes the assumption that it must have a psychological cause. This assumption has had a long and troublesome past in the history of medicine, but it is time that it is finally declared unacceptable.

again in this specific paper, no more 'MUS'.

whatever else he may argue elsewhere, this could still be a useful citation, as e12 has mentioned also.

But this is a 2002 paper - why are we bothered now.

fwiw, the title of the thread does say "2002 paper" Sorry for posting this in the "latest" research section; there doesn't seem to be an "old but possibly useful ME/CFS research" section.