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

[Snow Leopard]

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.

The difference is that this is just a self-assessment, and hence the lack of specificity doesn't matter too much, since it is medical professionals who are supposed to be the ones making the diagnosis. The problem is that many doctors are mediocre at their job and almost never know the sensitivity or specificity of the various diagnostic tools that they are using and this is doubly so for questionnaires.

In Australia, many GPs diagnose depression (for government subsidised access to a psychologist) if the patient claims they have been feeling sad for a while and a sufficient score on the Beck Depression Inventory (which also lacks specificity compared to other illnesses.)

 

[Invisible Woman]

1. Have you found little pleasure or interest in doing things?

I got into a massive argument because of a question with similar wording to this:
Have you found little pleasure or interest in doing things you usually enjoy?

(Bolding to emphasise the difference).

This was one of the experiences that led to me refusing to fill in questionnaires.

I asked the doc what this meant- I would have loved to take part in my hobbies and physical activities, but I felt so ill when doing them and even worse after there was little point. I was still interested though and wanted to do them. He told me to answer no.

Then he turned round and told me I was obviously depressed because I answered no!

I countered with - if a golfer breaks their leg, playing golf until they are sufficiently recovered would be a painful, miserable & counterproductive experience. Would that mean all golfers with yet to be healed broken legs are depressed?

Quite an argument ensued!

The problem is that many doctors are mediocre at their job and almost never know the sensitivity or specificity of the various diagnostic tools that they are using and this is doubly so for questionnaires.

And some have a vested interest in playing to the BPS tune. Or these days IAPT.

 

[chrisb]

I always work on the assumption that anyone who can complete a questionnaire has either not understood the implications of the questions or of their answers.

 

[alex3619]

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

Yes, these are broad terms. Fatigue, depression and pain are too broad in themselves. Pain at least can often be localised or connected to injury or disease, but not all the time. These are generic terms that are used in place of specific descriptors, in part because we still do not really understand even basic fatigue, depression or pain, though many mechanisms have been identified.

 

[alex3619]

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.

Yes. Its a huge problem. There is no differentiation as to cause, and many doctors do not consider the alternative of ME (or many other diseases).

 

[Hip]

I got into a massive argument because of a question with similar wording to this:

Have you found little pleasure or interest in doing things you usually enjoy?

(Bolding to emphasise the difference).

This was one of the experiences that led to me refusing to fill in questionnaires.

I asked the doc what this meant- I would have loved to take part in my hobbies and physical activities, but I felt so ill when doing them and even worse after there was little point. I was still interested though and wanted to do them. He told me to answer no.

Then he turned round and told me I was obviously depressed because I answered no!

Sounds like nobody understood the purpose of that question.

The purpose of the question is to determine if you are suffering from anhedonia — the loss of the ability to enjoy activities which you previously found enjoyable. Anhedonia can be a symptom of depression (though anhedonia is not always present in depression). Anhedonia is thought to arise because of malfunction of the brain's reward pathway.

If you were unable to perform a physical activity that you once enjoyed because of say PEM repercussions, then it's not that you lost pleasure or interest in it; rather you are physically unable to do it, which is a different thing.

In these circumstances, it would be appropriate to examine activities that you can still do with you ME/CFS limitations. If those activities also bring no pleasure, or much reduced pleasure, then you would answer yes to that question. That then suggests anhedonia, which in turn suggests depression (or schizophrenia, as anhedonia is also a symptom of schizophrenia).

 

[Mithriel]

This is a good example of how trivial much of medicine is becoming. Once, a doctor would have questioned the patient to see if they had depression, now they get you to fill in a questionnaire, and score it without any reference to ambiguities. Or they do a blood test with figures taken as absolute and not as a guide for diagnosis.

 

[Snow Leopard]

Sounds like nobody understood the purpose of that question.

Isn't that the point? The question as stated is too non-specific. No one bothered to ask if the question as stated is relevant/understandable/useful across a variety of different patient groups.

 

[Invisible Woman]

Isn't that the point? The question as stated is too non-specific. No one bothered to ask if the question as stated is relevant/understandable/useful across a variety of different patient groups.

Exactly.

When I found the question ambiguous and asked for more information I was told to answer no. Even though I would have loved to carry out those activities. Having answered no, as advised literally 5 minutes before by the same individual, the meaning was twisted to answering no meant I no longer had any interest in those activities.

Therefore the interpretation was that I was a depressed patient in denial, rather than the reality of that particular doctor being a slippery lying git.

 

[Invisible Woman]

Once, a doctor would have questioned the patient to see if they had depression,

But even when they did this they made judgements and drew conclusions they were not qualified to make. For example I was asked about employment history.

My job was a very technical one and training to maintain professional certification and keep up to date was very expensive. Sometimes employers would need a certain level of expertise, but no more than that. So, for ongoing career development, you would either have to move on or risk stagnating and let your skill set become outdated.

Sometimes, I would take a job with lower pay because in doing so I would gain experience with certain equipment, or with slightly different responsibilities.

So, it really bugged me to have someone knowing nothing of how my industry worked looking at the number of job changes and assuming that those changes indicated something was lacking in my personality. Ignoring the fact it was normal for those pursuing a career in my industry, that my career was developing and progressing all the time and that my employers invariably told me I was welcome back anytime and asked me to stay in touch.

Even when doctors ask questions they don't always realize they are making judgements beyond their experience. In this situation the doctor was receptive when I interrupted him as he tried to move on, but if I hadn't been well enough on the day to explain the wrong conclusion would have been made.

 

[Hip]

Isn't that the point? The question as stated is too non-specific. No one bothered to ask if the question as stated is relevant/understandable/useful across a variety of different patient groups.

I guess unless you know about anhedonia, you might not get what that question was about. Ideally your doctor would understand the context of the question, and would be able to advise you.

I guess each question could have an explanatory paragraph or two, to provide context, which people could read in cases where they did not understand what the question was about.

 

[Cheshire]

I guess unless you know about anhedonia, you might not get what that question was about.

I think everyone here perfectly understands what anhedonia is, the problem is that this question is not properly worded to differentiate between anhedonia and inability/difficulty to perform an enjoyed task because of physical constraints.
And you often answer questionaires without someone around to explain. And anyway, questions in questionaires should be as less ambiguous as possible and not require two paragraphs to explain what is meant.

 

[Hip]

I think everyone here perfectly understands what anhedonia is, the problem is that this question is not properly worded to differentiate between anhedonia and inability/difficulty to perform an enjoyed task because of physical constraints.

I think the question on the NHS website depression questionnaire is reasonably worded:

Have you found little pleasure or interest in doing things?

It does not ask about your physical ability to do things, but whether you enjoy doing things. There are dozens of little things you do each day which bring pleasure, pleasures that most people do not even realize are there — until you get anhedonia and these pleasures vanish.

When I had severe anhedonia (which is something you would not wish on your worst enemy), every single thing in the day was without pleasure. For example, if you come back home from a cold and rainy day outside, and you make yourself a nice warm cup of tea or coffee with a biscuit, drinking it is one of those tiny pleasures. But with anhedonia, that and every other pleasure is replaced by an empty vacuum of mind. It's a dire existence.



But I agree that since some of the symptoms of ME/CFS do overlap with the symptoms of depression, you would have to be careful in using these questionnaires on ME/CFS patients.

It might be better just ask ME/CFS patients one single question: Are you depressed? In most cases, people have sufficient introspective skills to know if they are depressed or not. So just asking them if they feel depressed should be sufficient.

When ME/CFS patients were asked about depression on a PR poll, If I remember correctly, around a third reported being depressed. That figure roughy tallies with studies on depression in ME/CFS.

 

[Cheshire]

It does not ask about your physical ability to do things, but whether you enjoy doing things.

Not, it does not ask about your physical ability, and that's a problem. Because someone prevented to do a thing by pain for example could answer positively while not experiencing anhedonia at all.

But with anhedonia, that and every other pleasure is replaced by an empty vacuum of mind. It's a dire existence.

To be more acurate, a question supposed to detect anhedonia should be centered about these feelings of emptiness that are more specific to anhedonia. And the question should be tested to see if it descriminates properly people with an without this symptom.

It's a dire existence.

Yes, it does seem a difficult thing to live with. I'm sorry you had to go through this.

 

[Hip]

To be more acurate, a question supposed to detect anhedonia should be centered about these feelings of emptiness that are more specific to anhedonia.

Anhedonia is in essence a lack of (or reduction of) pleasure or reward from normally enjoyable activities. That's it definition.

I've only described anhedonia as an "empty vacuum" in a metaphorical sense, because human existence is normally filled full of little pleasurable and rewarding feelings all day long, pleasures that most people are not even aware of. So when those pleasure and reward feelings are taken away, you feel a horrible "vacuum", and nothing makes much sense, as so much of what we do is geared to pleasure or reward. Someone with severe anhedonia for example would feel nothing on winning the lottery.


It's interesting that anhedonia can be absent or present in depression; but when it is present, that tends to result in treatment-resistance depression — depression that does not improve with antidepressant drugs. Anhedonia itself is more-or-less untreatable: there are almost no drugs which can improve it.

Anhedonia is divided into two subtypes: consummatory anhedonia (the feelings of pleasure or reward you get during an activity, or on its completion) and anticipatory anhedonia (the feelings of pleasure you get when you look forward to something nice, like looking forward to a holiday).

 

[Invisible Woman]

I'm sorry @Hip, that sounds very bleak. Horrible.

I've only described anhedonia as an "empty vacuum" in a metaphorical sense, because human existence is normally filled full of little pleasurable and rewarding feelings all day long, pleasures that most people are not even aware of.

I think this is it in a nutshell. I could easily describe my life as living in a vacuum - no job, no longer able to enjoy (by which I mean participate) in hobbies. All the previous milestones I measured my life by gone.

However, further enquiry would reveal I do get a lot of joy out of small things. Lying on my bed post shower - oh, that lovely clean feeling. Clean sheets. Both together is simply luxury. A couple of squares of chocolate. Snuggles with my dog.

Without the further enquiry I might seem to suffer anhedonia.

It reminds me of a friend who had a few bad headaches and when I described a migraine to her she was unsure. I told her, if she wasn't sure it probably wasn't a migraine. A few months later she actually had a migraine and told me, yeah, I was right.

So with the ambiguous wording the only people who could really answer accurately are the ones who have really experienced it. Many others might think they are answering honestly and accurately, but will be giving "false positives" .

 

[Hip]

However, further enquiry would reveal I do get a lot of joy out of small things. Lying on my bed post shower - oh, that lovely clean feeling. Clean sheets. Both together is simply luxury. A couple of squares of chocolate. Snuggles with my dog.

Yes, I think you understand what I mean, that there are hundreds of tiny pleasures throughout the day. Even if I tidy my desk, and then I look at the neat result, it gives a little sense of pleasure and reward.

Nowadays thankfully my anhedonia is only mild, so I can now enjoy some of these tiny routine pleasures.

But like you I've lost a lot pleasures I once really enjoyed because of the ME/CFS.

So with the ambiguous wording the only people who could really answer accurately are the ones who have really experienced it. Many others might think they are answering honestly and accurately, but will be giving "false positives"

Yes, that's why these questions would be best answered in the presence of a psychological expert, so that they can explain it in detail.

Though I think people do recognize it themselves when they no longer get the same pleasures they used to from their hobbies and interests. I sometimes see on forums people stating things like "I don't seem to enjoy anything I do anymore, what's happened to me?". When I see that, I usually suggest they consider whether they may have anhedonia.

 

[Hip]

Wow, and by complete coincidence, just after writing the last paragraph just above, I noticed a new post on PR where someone is asking why they have lost interest in their hobbies!

 

[Invisible Woman]

Yes, that's why these questions would be best answered in the presence of a psychological expert, so that they can explain it in detail.

And there's the rub....in cut price medicine they don't want to pay for expertise. The questionnaire is used instead of. It shouldn't be, but it is.

 

[Mithriel]

When I was less affected and undiagnosed I was able to look after my children and run the house. I felt the illness didn't stop me doing anything it just took all the pleasure out of life. Things I would have enjoyed were just got through before I collapsed.

I still feel I might answer yes to "Have you found little pleasure or interest in doing things?" I love to read, but I lose concentration and my eyes hurt. A lot of the time nothing is worth the pain and consequences. It is a cold equation not an emotional response.