Psychiatry Advisor: Addressing depression in ME/CFS, 2018, Cindy Lampner

Depressive states are normally divided into reactive and endogenous and the two tend to be very different in presentation although in both cases despair is often expressed. I do not have any hard information but I have come across much to suggest that PWME have endogenous depression more than other people. On the other many PWME express a reactive depressed state - and it would be very surprising if not.

I have not looked at this article but it looks like a completely ill-informed muddle. Major Depressive Disorder is not as far as I know associated with ME, as I say.

To me, neither of these is 'psychogenic'. A psychogenic illness is in theory an illness actually caused by the mind. Reactive depression is caused by adverse events producing a normal mental reaction (which is also a biological reaction). In some cases the reaction seems more than perhaps expected but I don't think that has anything to do with what is called psychogenic. Psychogenic is normally used to refer to illness that is 'invented' by the person's 'mind'. I don't think anyone would talk of psychogenic sadness but they might talk of psychogenic back pain.

 

My problem is that label is deceptive. The depression is, in my view, a biochemical change in the brain. The events trigger it, but the depression is the chemical changes, which we do not understand yet.

This is also an unproven hypothesis, but requires no invocation of unproven things like mental magic.

The problem when most psychiatrists discuss psychogenic events is the same as the MUS problem, or for that matter UFOs.

MUS is medically unexplained symptoms. The valid interpretation is that we don't know what is going on. Psychogenic proponents then infer, via a fallacy, that this means they have mental causation.

Similarly with UFOs. I believe in UFOs. Anything that appears to be flying and is unexplained is a UFO. This does not prove the existence of alien visitors, or even flying saucers. Their existence requires additional evidence.

In both cases we need more data in order to understand what we are seeing.

When sensory inputs trigger depression is described as psychogenic I think it misses the point. Even the limited sensory input to a worm, or an amoeba, results in internal changes that change organism behaviour, including internal chemistry as behaviour. Their evolved and learned responses, rooted in biology, determine what they react to or do not react to. Certain signals may trigger internal changes, but those changes are inherent in the organism, in its biology. A reaction such as depression is most likely internal changes in the chemistry such as different signalling. Its just vastly more complex in humans, which is why they still have not figured out reliable biomarkers. Its not easy to do that.

Using the term psychogenic is potentially a category mistake. It allows, by inference, too many unfounded claims, and many psychiatrists (but not all) make all sorts of inferences about mind and mental effects accordingly. While the BPS brigade give some limited credence to the biology, they focus on the psychology, and by extension the psychiatry. Biology is often ignored.

So stimuli can trigger changes, but the problem is not the stimuli but the response to the stimuli. Particularly if that response is persistent.

Its similar to the concept in ME epidemiology that ME can be triggered by viruses, but not caused by viruses. What happens to the biology both during and after the infection seems to be what is important. I am still waiting for an actual causative pathogen to be found. However changes in signalling, T cells, or metabolic switches, are what actually are important in a lot of current research.

Just to remind everyone, discussion of reactive and primary depression should not confuse the two.

This is not just sophistry. Mechanisms matter. Psychogenic disease claims are typically mechanism free. If we can discover specific molecular mechanisms then we can have targets for intervention. Psychogenic disease is a wastebasket diagnosis, with currently no proven medical benefit, but lots of unproven claims. It does however have financial benefit to some organisations.

In the early days psychosomatic medicine was about discovering what the connection was. Charcot and then Freud changed that, and we are still trying to sort out the mess more than a century later. I have no problem with the early investigation, it was asking questions not providing answers, but once we think these claims provide answers, without proof, we can be fooled by the rhetoric.

I do not think these issues will be fully resolved until we have much better brain scanning and testing technology.

Similar issues arise in a discussion of stress versus stressors.

 

Depressive thoughts != MDD. It's not normal for people to be cheery in desperate situations. Hopelessness by external factors, grief, sadness, sorrow, despair, those are not the same thing as clinical depression, unfortunately most useful meaning has been stripped out of the term. The vast majority of physicians cannot tell the difference between fatigue and depression, including the so-called "experts". What is labeled depression in a clinical context is rarely the same thing as MDD, other than looking superficially alike.

Depression is a very vague term, it's not differentiable from grief or other disastrous life events. Brought about by external events forced upon someone is the literal opposite of psychogenic, though.

 

Now THIS is what a competent BPS model would be about. Not some lousy unspecific questionnaires massaged by ideological analysis.

 

Sigh. Were it not so!

 

Yes, it's good to bring up precise definitions of terms.

I am not entirely sure whether the term "psychogenic" encompasses both psychological factors as well as psychosocial factors, but I certainly mean to include both.

One example of a psychological factor that might cause depression is the belief (whether true of false) a teenager might have that they will never be good enough to attract the opposite (or same) sex for dating. Beliefs like that can cause depression.

Thank you, I was not aware of those terms, but they are exactly what I mean.

This article summarizes it:

 

I think that's making the assumption that impeding death will always cause depression.

The thought of death does not automatically lead to depression. In fact in people who suffer depression, the thought of death (or the making of plans for suicide) often brings comfort.

Is it perhaps the stigma of mental health that people are worried about? Perhaps people don't mind being described as depressed, but if that depression is classed as a mental illness, then the well-known stigma of mental health comes in.

My feeling is this stigma of mental health may come into play when ME/CFS patients discuss depression. When ME/CFS patients say "it's my very limited life circumstances that are causing by depression, nothing else", then they are tacitly implying "I have a good reason to be depressed, so clearly I am not mentally ill".

Whereas if you say "physical illness processes in my brain are causing my depression", well then perhaps it's harder to escape the label of mental illness in that case. So possibly this could be one reason that ME/CFS patients prefer to think of their depression as being caused by life circumstances, rather than by brain dysfunction.



Mental illness stigma is a powerful thing, and can greatly and detrimentally affect self image.

I've suffered from various mental health conditions for around 22 years now (some predating my ME/CFS, others which only appeared after I caught the virus which triggered my ME/CFS).

Nowadays I've got over much of the stigma involved, and I am happy to openly talk about my mental symptoms on forums, etc. But to start with, I did not want to admit even to myself that I had mental health problems. Because none of us like that mental health label.

 

That's interesting. It took me quite a long time to understand (and to stop misunderstanding) a symptom of my wife's ME/CFS. She would go very quiet and apparently withdrawn, introverted and uncommunicative. It was quite a while until my wife helped me to understand that when she is this way, it is because she simply feels bl**dy ill, and it is her way of dealing with it - turns in on herself to get through it. I used to misunderstand and think she was upset about something.

 

The term "reactive depression" that Prof Edwards mentioned above I think is the correct one here, and a better term than psychogenic.

 

Thank you Hip.

I appreciate that many things are possible, but I think the fact he was dying and it was imminent, and that he was leaving behind a distraught wife and children he loved dearly, and all the plans they had made for their future together were not going to happen, and that his body and dignity was failing him and he felt dreadful, etc, etc, would be more than enough to make someone severely depressed. Any other factors would have been far less significant I think.

And you are right, I cannot know this, but I'm nigh on certain that if a proper well-run trial ever investigated this, the truth would be very close.

 

That was my mistake, I presumed you knew the difference so did not explain it. My bad. Nobody disputes reactive depression, I was even diagnosed with it once. Its just that, again, we still don't know what depression really is, any of it. All the old theories failed. I am not up to date on current research though.

 

I think my main problems with any diagnosis of depression or mental health issues is that

a) Normal emotions that make sense within the context of the patient's circumstances and experiences are often pathologised, and made out to be a problem originating with the patient themselves.

b) The drugs that patients get given for mental illnesses are almost uniformly awful, have awful side effects, are addictive, and doctors dismiss the patient's experience of these mental health drugs and disbelieve that side effects occur at all. Actually, they do those things with all sorts of drugs, not necessarily just mental health-related drugs.

c) Doctors rarely seem to know which physical conditions cause mental health problems. So, for example, people with hypothyroidism are treated for depression when what they actually have is untreated or inadequately treated thyroid problems. I get anxious when my iron levels drop - and when that happens I need iron pills not anti-depressants.

d) Once a doctor has decided that a patient is depressed all other efforts at treatment and diagnosis are usually stopped, in my experience. I have multiple experiences of being told I'm depressed or mentally ill when the problem was a physical one that could have been discovered years earlier than it was. This is why I'm so anti-mental health diagnoses. They are often based on incompetent and lazy doctoring that leaves people physically suffering for years.

 

Yeah it's not at all a matter of mood or choice or retreating inside, it's hard to explain but the feverish onset of a flu is just about the most relatable common experience, you just feel everything draining out of you, everything is sluggish, thoughts just stop, movement just demands too much energy.

It was so frustrating all those years to experience this and people saying "I guess you fell asleep" or whatever. Doesn't matter what you say, doesn't matter in my case that falling asleep is hard and never happens spontaneously. I literally never sleep during the day and I still get comments or questions saying they thought I was sleeping. Doesn't matter how many times I say it's not.

Serious food poisoning is probably a good relatable experience too, when you start feeling awful everywhere, shaky, hot and cold. Has nothing to do with emotional state and thoughts are pretty much shut down so they play no significant role at all. State of mind doesn't change, it just kind of gets shackled.

 

It seems to me "depression", like "fatiigue" is so widely used (and abused) that it generally causes more misunderstanding than not.

I understand reactive depression from bereavement, being made redundant etc.. Although we use the same word "depression" to describe a biochemical imbalance or issue within the brain itself and to describe a symptom of conditions such as hypothyroidism are we really describing the same thing?

Not only can "depression" be reactive or endogenous, it is sometimes used to describe a symptom and sometimes a disease.

Then there is the psychiatric "mission creep" of medicalization or pathologicalization of normal human reaction such as bereavement.

As per usual when psychiatry is involved the definition is a mess and that seems to be just how they like it.

 

I think an important difference between depression and ME/CFS is,

that feeling depressed is a completely normal experience, and everybody can sufficiently understand how it feels (perhaps not the exaggeration). This does neither say that depression is not developing upon physiological influences (this even may be obviously enough), nor that it can´t be influenced - I don´t know to which degree - by psychological influences - well, a lot of diseases also can.

whereas ME/CFS, although consisting of non-specific symptoms, shows such an unusual combination of abilities that no one is able to imagine it, even between PwME it might be difficult in concrete details.


Most strikingly maybe:

• depression affects the motivation
• ME/CFS affects especially the operative ability, and only additionally some anxiety or maybe a depressive mood are induced, or a fight-or-flight-reflex.

My tiny impression is, reading posts from PwME now for a while, that PwME mostly aren´t really depressed. I find it wise to mention that there might develope a "secondary depression" (I got this expression from some article), and as I understand it this means that the situation patients faced with is somewhat sad.

 

Somewhat sad - wonderful euphemism. This is where language matters.

 

Thinking positive - only 200 years ago the half of the people had died by being 50 years old, today considered to be young. And this even counts only these ones who hadn´t died until their 10th birthday, which had been a very lot.


(Facts by memory, so can´t provide a source, I think it was an evaluation of the situation in Europe.)

 

Very true.
Unfortunately quantity of life is often at the cost of quality of life.
We invent new conundrums .

 

Mentally mankind is not up to date. For now I fear it will take a couple of centuries to deal spiritually with new technical possibilities, let alone the it is even not clear if we are going to deal successfully with the technical consequences that arise from advanced technical possibiliites.

Sometimes I think we also should invent some old conundrums.

 

An important thing to remember in any discussion of ME and depression is that the symptoms of ME are taken as being the symptoms of depression.

I've just done the
https://assets.nhs.uk/tools/self-assessments/index.mob.html?variant=42 mentioned previously

These are the questions.

1. Have you found little pleasure or interest in doing things?
2. Have you found yourself feeling down, depressed or hopeless?
3. Have you had trouble falling or staying asleep, or sleeping too much?
4. Have you been feeling tired or had little energy?
5. Have you had a poor appetite or been overeating?
6. Have you felt that you're a failure or let yourself or your family down?
7. Have you had some trouble concentrating on things like reading the paper or watching TV?
8. Have you been moving or speaking slowly, or been very fidgety, so that other people could notice?
9. Have you thought that you'd be better off dead or hurting yourself in some way?

My score was 18 and it said I could have depression and to contact a doctor, yet I am not depressed at all.

Only questions 2 and 9 are unique to depression, while 1 and 6 are ambiguous for ME. I sometimes feel a failure because ME has taken away my chance to make anything of myself, not because I am depressed for instance. Any way you look at it I have failed by most people's standards.

The rest, 3, 4, 5, 7, and 8 are specific symptoms of ME and I answered "nearly every day" to them. So the diagnosis of depression in ME depends on the doctor being savvy enough to disentangle signs of ME from signs of depression. They use questionnaires that are not suitable for us.

It is very likely that the rates of depression in ME are no higher than those in any other illness.