Depression Questionnaires in ME/CFS

[Valentijn]

An editorial article I saw at Cambridge Journals Online while scanning the freebies: Chronic fatigue syndrome and depression: conceptual and methodological ambiguities

It talks about the relationship between CFS and depression in general (does one cause the other, result of illness, etc), but also has a section on the problems of using depression questionnaires which include symptoms that could be attributed to physical causes:

Such symptoms are legitimate criteria for the assessment of depression in the absence of physical illness, but their status is ambivalent when the possibility of this has not been excluded.

A key problem in the case of an ambiguous disorder such as CFS is that the appropriateness of standard measures of depression will depend upon the assumed nature of the illness, while our concept of the latter may be shaped by the results obtained from such measures.

Thus BPSers will assume any questionnaire is fine, because we have no physical disease, and in the process of using those questionnaires may incorrectly conclude that ME/CFS is psychological, because the questionnaire says so.

In a recent study, which employed a variety of measures, CFS patients showed elevated
scores particularly on those affective scales which included somatic items as a large component (Millon et al. 1989). Future studies should employ measures appropriate to the context of medical illness, at least in parallel with other measures, in order to allow for such distinctions to be made.

This suggests that the assessment of depression among ME/CFS patient depends, to some extent, on the questionnaire being used.

The author specifically recommends some scales:

• The Hospital Anxiety and Depression Scale: (this one isn't too bad, but ME patients will score a few points for physical and cognitive symptoms).
• The Profile of Mood States: from wikipedia: "The long form of the POMS consists of 65 adjectives that are rated by subjects on a 5-point scale. Six factors have been derived from this: tension-anxiety, depression-dejection, anger-hostility, fatigue-inertia, vigor-activity, confusion-bewilderment."
• The SCL-90: I have no idea why she likes this one. Looking at the questions it seems like almost 40 out of 90 questions could be attributed to physical causes, and only 12 of those are intended to be somatization questions. Also a lot of "Feeling nervous/afraid of situation involving physical/cognitive activity X".

And she also specifically points out problems with the long version of the Beck Depression Inventory (very popular in CFS studies), which has a subsection for somatic complaints, and suggests omitting that section:

A study which adopted this procedure (Cavanaugh et al. 1983) found that medically ill patients had lower scores than a psychiatrically depressed group on the cognitive-affective subscale, while the somatic subscale failed to distinguish between the two groups. Indeed, these research workers noted that most vegetative symptoms on the Beck Depression Inventory did not discriminate well for overall severity of depression in either group.

Generally I think the author is on the right track, but has a limited understanding of ME/CFS, due to the case definitions she's looking at: for example, the Hospital and Anxiety and Depression Scale is probably a bigger problem than she seems to realize. As a result she congratulates Wessely for removing fatigue-based questions from one psychiatric questionnaire, but doesn't spot the same problem with relation to PEM, GI problems, sleep problems, pain, OI, cognitive dysfunction, etc.

So applying her basic theory to CCC/ICC case definitions and cohorts could result in obtaining very different results regarding the prevalence of mood and other psychiatric disorders in ME patients, compared to modifying questionnaires based solely on CDC or Oxford criteria.

The citations she lists above are for:
Cavanaugh, S., Clark, D. & Gibbons, R. (1983). Diagnosing depression in the hospitalised medically ill using the Beck Depression Inventory. Psychosomalics 24, 809 815.
Millon, C, Salvato, F., Blaney, N., Morgan, R., Mantero-Atienza, E., Klimas, N. & Fletcher, M. A. (1989). A psychological assessment of chronic fatigue syndrome/chronic Epstein-Barr virus patients. Psychology and Health 3, 131-141.

 

[alex3619]

I suspect that for many questionaires if every problematic question were to be removed the entire questionaire would be gutted and pointless. These questionaires cannot reliably differentiate from physical disease, there is no objective way to validate them.

 

[Valentijn]

I suspect that for many questionaires if every problematic question were to be removed the entire questionaire would be gutted and pointless. These questionaires cannot reliably differentiate from physical disease, there is no objective way to validate them.

I think the Profile of Mood States might have some promise, since it sounds like reactions to simple words, so it wouldn't have loaded questions like "but how do you FEEL about this physical/cognitive activity?!?" But I haven't see a copy of it, so who knows

Maybe we could create our own psychiatric questionnaire for use in ME!

 

[Valentijn]

A patient in the CDC's multi-center CFS study contacted me who wishes to remain anonymous. They have read this thread and wanted to contribute a copy of a relevant email they had sent to Dr. Unger during the recent CDC CFS teleconference:

I have two questions for Dr Unger:
I am an M.E. participant in your multi-center CDC "CFS" study. I meet all the criteria for CCC and ICC M.E. While I was delighted to receive V02 Max testing, immune/virological panels and post-exercise gene expression, I was dismayed at the volume of leading questions in the CDC surveys used, which I believe are biased to an inappropriate diagnosis of depression.
These are my questions:
1) What measures is the CDC taking to remove investigator bias torwards depression with respect to M.E., when the following questions currently used by the CDC do not differentiate between normal feelings towards chronic illness and disability, versus symptoms of depression?

Eg. Multidimensional Fatigue Inventory
“I have a lot of plans”
I have a TON of plans, but given my current debilitated health status as an M.E. patient, I understand that in the short and medium term I may be unable to execute them.

SF36
“I expect my health to get worse.”
This question doesn’t differentiate whether the patient is expecting to receive treatment (eg. Ampligen or Rituxan) or not. Without treatment, I expect my health to get worse; this isn’t me being pessimistic – it’s a rational assessment based on my past worsening trajectory (including cardiac, cancer risk, and PENE etc), and understanding of the biomedical M.E. research. With treatment, I am extremely hopeful that my health will improve.

Zung Depression Scale
“I still enjoy the things I used to do.”
This question is poorly worded for the M.E. population, and doesn’t differentiate between intelligent avoidance of PENE, versus anhedonia. I dream about the things I used to love doing. But I know objectively – after years of predictable PENE– that I must for the most part abstain, or I will provoke relapse. But when I received a trial of biologicals (unfortunately not available in North America), within days I was once again doing the things I used to love, like going for walks with the family and our dogs. So I still enjoy the things I used to love – but judiciously avoid them, to avoid PENE. How will the CDC make this distinction?

2) Given the above concerns about poor sensitivity and sensitivity of current inventories used by the CDC in M.E. research, how will this be addressed in analysis and discussion of the CDC’s pending research findings on CFS, particularly since this will reflect a significant departure from the depression-focused tradition for the CDC in its CFS research?

Thank you! I really am encouraged by the CDC’s increasing interest in the biomedical findings in M.E. I hope this will also be achieved by listening to M.E. patients, and by being aware of – and addressing - the CDC’s longstanding investigator bias towards an inappropriate diagnosis of depression.

I am not signing this email, as I do not wish my name to be publicized in your webcast.

ADDITIONAL BACKGROUND FYI

Here is a shortlist of leading questions used in the CDC's multi-center CFS study, that I have concerns about, when used in research for M.E.. This is just the tip of the iceberg.

Multidimensional Fatigue Inventory
- “I have a lot of plans” – As an M.E. patient, I have a TON of plans, but given my current health status, I understand that in the short and medium term I may be unable to execute them.
- “I think I do a lot in a day” – Taking into account my severely abnormal anaerobic threshold, I actually do a lot. Relative to the general population, I’m a laggard. Does the CDC interpret this as a sign of depression?
- “Physically I feel I am in a bad condition” – Objectively yes. Does this mean I’m depressed?
- “I dread having to do things”
o Not because I don’t want to live life anymore, nor because I don’t enjoy the things I used to. Who wants to cause themselves to feel sicker, when it is a predictable response to activity? If someone were compelled to hit their hand with a hammer every time they did "things", they would come to dread doing things. It's a normal, rational response to predictable pain.
o So in the questionnaire, I said yes to this, because I become predictably more sick the more I do – I’d do them in a snap if I didn’t feel so sick.
- Physically I feel I am in a bad condition.: - Is this interpreted as a sign of being depressed, or a sign of being realistic about objective progression of the disease?

SF36
I expect my health to get worse
- Personally I don’t, because I believe that I may be able to access treatment in the future.
- But untreated – YES – it’s the typical progression for M.E., and anyone remotely knowledgeable about the condition knows that

Zung Depression Scale
“I feel that I am useful and needed” – a ridiculous question to a person who is bed or housebound, and no longer working. How does this question differentiate from the normal feelings of any severely disabled person, and a depressed person? Yes, a disabled person can feel useful, but this involves significant acceptance of drastic limitations in quality of life, and ability to contribute tangibly to family, work, and society.
My mind is as clear as it used to be – Again, is neurocognitive fog in M.E. going to be interpreted as a sign of depression?
My life is pretty full – Yes, my life is pretty full –given the limitations of M.E. But compared to a healthy person, it is pretty empty.
I still enjoy the things I used to do – Geez!

Lifetime Anxiety and Depression Scale
Over the last 2 weeks, how many days have you had little interest or pleasure in doing things?

They also attempted to contact to Dr. Unger via the clinic in which they participated in the study. No response has been recieved.

 

[Valentijn]

A patient in the CDC's multi-center CFS study contacted me who wishes to remain anonymous. They have read this thread and wanted to contribute a copy of a relevant email they had sent to Dr. Unger during the recent CDC CFS teleconference:

So based on the questionnaires, it looks like the study might be set up in a way that allows the results to be spun if necessary. "Oh yes, some physiological abnormalities, but lets see how they correlate to depression, which has been shown in these patients by using the typical questionnaires." Etc.

To clarify, it looks like the Multidimensional Fatigue Inventory has the following statements as indicative of "Reduced Motivation":

I feel like doing all sorts of nice things
I dread having to do things
I have a lot of plans
I don’t feel like doing anything

The rest of that questionnaire doesn't look bad - they're assessing fatigue and activity levels. Well, not that I like the focus on "fatigue" ... it's way to vague. And the sections on fatigue and activity are confusing issues by prefacing statements with "I feel".

The SF-36 seems pretty good generally ... they have different questions asking whether your limitations in activities are due to physical or emotional problems. I think the biggest issue is that "Vitality" and "Social Functioning" are considered to be part of the Mental Health part of the test, though they should probably be interpreted as how physical (or mental) symptoms are affecting those aspects of life. Using those scores to label someone as having a mental illness would be highly inappropriate, and is not what the test is designed to do. These questions (brief versions) include:

Social Functioning:
20. To what extent has your physical health or emotional problems interfered with your normal social activities?
32. How much of the time has your physical health or emotional problems interfered with your social activities?
Vitality:
23. Do you feel full of pep?
27. Do you have a lot of energy?
29. Do you feel worn out?
31. Do you feel tired?

The Zung Self-Rating Depression Scale (made by a huge drug company) just seems completely inappropriate with any physical illness. Out of 20 questions, 14 can be completely attributed to physiological or neurological symptoms:

Morning is when I feel the best
I have trouble sleeping at night
I eat as much as I used to
I still enjoy sex
I notice that I am losing weight
I have trouble with constipation
My heart beats faster than usual
I get tired for no reason
My mind is as clear as it used to be
I find it easy to do the things I used to
I am more irritable than usual
I find it easy to make good decisions
My life is pretty full
I still enjoy the things I used to do

And several more could easily reflect the result of analytical calculation, rather than depression:

I feel hopeful about the future
I feel that I am useful and needed
I feel that others would be better off if I were dead

That leaves a grand total of 3 questions that might be applicable solely to depression in someone with a severely disabling physiological disease:

I feel down-hearted and blue
I have crying spells or feel like it
I am restless and can't keep still

I think the Lifetime Anxiety and Depression Scale mentioned above might refer to the PHQ-8, in which case 6 or 7 of the 8 questions can easily have solely physiological origins to positive answers.

 

[alex3619]

I get tired for no reason: NO. I have ME with PENE and sleep issues, there are plenty of reasons.

I feel down-hearted and blue: NO, only about stupid questions.

I wonder if we should take some of these questionnaires, remove every irrelevant or misleading question, and post the remaining questions as a revised questionnaire?

Thank you whoever you are for posting these emails here via Valentijn. It helps to show the points we have been making for quite a while now. The use of stupid, irrelevant, misleading and ambiguous questionnaires has to be exposed.

Alex.

 

[Enid]

And who has the time or inclination or energies to think how one thinks or feels about things - just getting on with basic daily living is enough - taking enough "thinking" on it's own. Having just managed a bath - zzzzzz to the lot of them.

 

[Valentijn]

I get tired for no reason: NO. I have ME with PENE and sleep issues, there are plenty of reasons.

Obviously you haven't had enough CBT!

I feel down-hearted and blue: NO, only about stupid questions.

I wonder if we should take some of these questionnaires, remove every irrelevant or misleading question, and post the remaining questions as a revised questionnaire?

Now that would be fun Especially if we mix up the questions in the most senseless manner possible.

 

[alex3619]

Lol Valentijn, for a satirical article mixing it up would indeed be fun. For something more serious I would want to keep it as close to the original as possible.

I have also, for many months now, been wondering if we should not rewrite some of the statements released, including press releases, to be factual. Making them factual, without hyperbole, would also make a point.

Yes clearly I have CBT deficiency disease. If only it came in a simple pill.

 

[Purple]

Talking about questionnaires - I can't remember which one I had to fill in - but it had questions like "Do you have problems ignoring your anxious thoughts when you are in pain?" I couldn't answer. Answer YES and you are saying you have anxious thoughts as well as problems ignoring them, answer NO and you are saying you have anxious thoughts. I took this up with the therapist involved and was told "Everyone who is in pain has anxious thoughts".

 

[Valentijn]

Talking about questionnaires - I can't remember which one I had to fill in - but it had questions like "Do you have problems ignoring your anxious thoughts when you are in pain?" I couldn't answer. Answer YES and you are saying you have anxious thoughts as well as problems ignoring them, answer NO and you are saying you have anxious thoughts. I took this up with the therapist involved and was told "Everyone who is in pain has anxious thoughts".

I think some of these questionnaires may provide concrete proof that some psychologists are indeed hellspawn

 

[alex3619]

Talking about questionnaires - I can't remember which one I had to fill in - but it had questions like "Do you have problems ignoring your anxious thoughts when you are in pain?" I couldn't answer. Answer YES and you are saying you have anxious thoughts as well as problems ignoring them, answer NO and you are saying you have anxious thoughts. I took this up with the therapist involved and was told "Everyone who is in pain has anxious thoughts".

Everyone in pain has anxious thoughts - thats a nonsense. I can't speak for anyone else, but with constant long term pain there is no anxiety, its just existence, business as usual. Its occasional and fluctuating pain that is harder to deal with. You can get very fed up with the pain, but that is not anxiety.

 

[SOC]

Talking about questionnaires - I can't remember which one I had to fill in - but it had questions like "Do you have problems ignoring your anxious thoughts when you are in pain?" I couldn't answer. Answer YES and you are saying you have anxious thoughts as well as problems ignoring them, answer NO and you are saying you have anxious thoughts. I took this up with the therapist involved and was told "Everyone who is in pain has anxious thoughts".

Have you stopped beating your wife? That's a classic example of biased questioning. I thought this was taught in all sciences where questionnaires are used. We're talking kindergarten science here (as one of my profs used to say). Oh yeah, this is psychology, not science. They also use statistical packages like SPSS without a clue about how to use them, what the results mean, etc, etc, etc. Pseudo-science to the max.

 

[Esther12]

This sort of thing is a real problem. Well worth trying to draw more attention to it.

 

[Creekee]

Yes, I'm depressed... at the pathetic state of "science" when it comes to this disease.

 

[Tammy]

It seems to me like anyone who's task it is to make up a questionaire would get some feedback from people who are experiencing whatever the questionaire is about so that it doesn't end up being totally ridiculous and unproductive

 

[GracieJ]

Enough said!!

Will be printing this one out!!! The Mad Hatter strikes again.

 

[Valentijn]

It seems to me like anyone who's task it is to make up a questionaire would get some feedback from people who are experiencing whatever the questionaire is about so that it doesn't end up being totally ridiculous and unproductive

Yeah, some questionnaires have a definite problem in that area. But I think the more common problem is using questionnaires on physically ill patients when those questionnaires were clearly designed for diagnosis of mental illness in physically healthy people. But from what I understand of Evidence Based Medicine, it's only the numbers that matter, not logic and reason

 

[Little Bluestem]

How much of the time has your physical health or emotional problems interfered ...

So these people don't even know the meaning of the word conflate.

 

[Roy S]

A patient in the CDC's multi-center CFS study contacted me who wishes to remain anonymous. They have read this thread and wanted to contribute a copy of a relevant email they had sent to Dr. Unger during the recent CDC CFS teleconference:





They also attempted to contact to Dr. Unger via the clinic in which they participated in the study. No response has been recieved.

Hi anonymous. Thanks for letting us know.