Questionnaires that can differentiate depression from chronic symptoms

Many questionnaires used to measure depression ask about general symptoms such as fatigue, sleep, appetite, concentration etc. People with a chronic illness such as ME/CFS already have those symptoms and are thus more likely to score high on these depression questionnaires, even if they are not depressed at all.

I vaguely remember some past work on improving this issue (e.g. removing the questions from that focus on the somatic symptoms of depression) but I can't remember. Does anyone know of depression questionnaires that help differentiate depression from chronic illness and symptoms?

I found this article that describe the issue at play:
Assessing depression in those who are chronically ill - Counseling Today

Many thanks in advance!

 

Yep, this is a real problem. I had some counselling a couple of years ago and told them how confusing their scoring systems were—both GAD-7 (anxiety) and PHQ-9 (depression). I said: do you want me to answer based on my mental health symptoms or just in general (i.e., including all my ME symptoms)? My counsellor wasn't really sure and it seemed like they hadn't been asked this before. In the end I asked that any scores not be used and not reported in my GP record. What's worse is that these scores are the primary (perhaps only) metrics via which they judge if the 'treatment' has helped.

 

Sorry @ME/CFS Skeptic I can't answer your question!

 

I did look into this at one point. Try the PHQ-2 https://www.hiv.uw.edu/page/mental-health-screening/phq-2
This drops all the somatic symptoms, and instead focuses on two simple qualities:
– feeling low.
– lack of pleasure
There is some published research that compares the PHQ-two with the longer PHQ-nine from which is derived in a population of people who I think did not have chronic illness. The PHQ-two performed on this as well as the PHQ-nine.

Sorry, Digging out the details is beyond me.

I don’t know this if this does exactly what you want, but it does prevent somatic symptoms from confounding a diagnosis of depression.

 

Thanks @Simon M and @InitialConditions !

I agree the PHQ-2 seems the least problematic, but it is only 2 questions and was mainly intended as a first screening tool.

Frequently used questionnaires for depression such as the PHQ-9 and Beck Depression Inventory focus a lot on somatic symptoms. The HADS seems to have less questions about somatic symptoms but is still problematic with questions such as "I can enjoy a good book or radio or TV program" or "I still enjoy the things I used to enjoy".

How frustrating that we have all these papers by psychiatrists and psychologist on ME/CFS, but that none have tackled this problem. This should have been the first thing on their list.

 

it was, but it seems to be very accurate. In other words, it’s not clear that this somatic symptoms are particularly helpful in diagnosing depression, while they drag in lots of non-depressed people with chronic illnesses.

ultimately, you need a clinician to diagnose depression, and I’m not convinced that’s other depression scales (I think have looked at most of them) add very much to the screen – certainly not for anyone who doesn’t have good physical health.


When decode ME was looking at this with a lot of patient involvement (and helped by a thread on this forum), the consensus was that the PHQ – two was, the best option by far, not least, because it wasn’t tiring to complete.

However, I stepped down from that group a long time ago due to ill health, and things may have moved on since then.

 

I've been asked to do the HADS numerous times, and it's only just struck me that I've always based my responses on the assumption I had the energy to enjoy things (which I do for some of the time). But that might be because I recognised it as a depression scale, and I know depression's not something I normally have to contend with.

If I thought I was only being asked about my capacity for enjoyment at that moment—wiped out and probably grumpy because of having to go to an appointment—or even for the majority of the time, I'd have been scored very differently.

 

There is often a display of the multiple dimensions (the spider web thing) and they usually find that on the mental axis pwME are fine. Which, considering our horrible quality, is actually a testament of how irrelevant it really is. We are resilient AF.

It's specifically when it's added up as a single number, with disregard for the dimensions, that it becomes misleading. And of course that's exactly how it's misused in BPSland, on purpose.

 

My two cents on the PHQ2

I can have little interest in doing things when exhausted. Resting an hour or several is often enough to reverse that. Sometimes it takes more rest over several days. It's easy to see this is nothing like depression because the advice for people with depression is not to lie down in bed for a while until feeling better.

Symptoms such as pain, fatigue, or orthostatic intolerance (reduced blood flow to the brain) can also make activities unpleasant. But that's very different from anhedonia which this question is about.

I do feel hopeless at times, especially when pain is high and I can't see any realistic way of stopping the progression of the illness. The question obviously refers to feelings of hopeless that aren't appropriate to the situation, which I don't think I have.

In my opinion if these questions are interpreted without context then a ME patient could score higher than a healthy person. Maybe enough to cross the scoring treshold for depression.

 

It is worth noting that lack of pleasure can be associated with apathy in neurological illnesses (ME included) that have nothing to do with depression. Feeling down can also happen (especially when you can see doctors don't understand your problem and can't help) without you having depression. These questionnaires are heavily flawed no matter how you look at it.

 

Lenny Jason probably came up with the best "screening" tool to distinguish depression from chronic illness: simply ask a patient "if you felt well tomorrow, what would you do?" Someone who is depressed is almost invariably going to shrug and mumble something like "I dunno." Someone with a chronic illness is going to give a laundry list of things they want to do.

I've noticed in the last few years that it is becoming standard practice to have patients fill out a depression screening questionnaire when filling out the usual paperwork at a doctor's appointment (i.e. meds, symptoms, family history, etc.). I made a decision about a year or so ago that I will no longer fill it out. No one has ever asked me since then why I haven't filled it out, though when my primary care clinic was verbally asking me the screening questions for depression a little over a year ago, I did explain my concerns about the conflation of typical chronic illness symptoms with depression. Indeed it was after that encounter that I finally asked myself why I was bothering to fill them out as I was under no compulsion to do so.

Maybe we need to organize a chronic illness patient "strike" in filling them out?

 

This may be violating the "no politics" rule so I understand if it gets deleted but I do think the union movement needs to think beyond trades and work. There is solidarity to be had in more situations than just labor. And there are a whole lot of us who are excluded from labor for one reason or another.

 

Unions are always built from the ground up, by the people who benefit from them, and fought hard by the people who have to make concessions. There's a good reason workers' unions are the most influential: all healthy people of working age. It's hard work and needs a lot of money, both things that are stacked against us.

If we want such a union, we need to do it ourselves, but the denial and minimization from medicine makes it impossible, they fight us as every turn and it's far easier for them than for bosses to go against their employees, whose work they need. Most chronically ill people don't even know what they have, let alone that there are millions of people like them. Meanwhile workers meet every day at work and have the exact same simple needs. And even then it's hard.

Maybe with AIs helping us connect beyond what even social media allows. Probably, even. There's no need for boots on the ground for this stuff, it can be done at an information level, but it needs something/someone to do most of that work.

 

This is true but they also usually involve a paid union organizer (the Amazon warehouse union may be the exception that so far proves the rule). And in the case of the chronically ill, an organizer would be even more necessary.

That said, any union is going to see our concerns as rather niche compared to, say, structural capitalism. So we would indeed need to do it ourselves, starting with "no decision about us, without us." The idea of organized withholding of treatment compliance is certainly an interesting one.