1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Depression Questionnaires in ME/CFS

Discussion in 'Latest ME/CFS Research' started by Valentijn, Jan 28, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    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:

    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.

    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:
    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.
     
    ahimsa, SOC and Simon like this.
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,726
    Likes:
    12,655
    Logan, Queensland, Australia
    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.
     
    Enid and Valentijn like this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    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 :p

    Maybe we could create our own psychiatric questionnaire for use in ME! :lol:
     
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    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.
     
    ahimsa likes this.
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    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":
    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:
    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:
    And several more could easily reflect the result of analytical calculation, rather than depression:
    That leaves a grand total of 3 questions that might be applicable solely to depression in someone with a severely disabling physiological disease:
    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.
     
  6. alex3619

    alex3619 Senior Member

    Messages:
    7,726
    Likes:
    12,655
    Logan, Queensland, Australia
    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.
     
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    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.
     
    rosie26, peggy-sue and Valentijn like this.
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    Obviously you haven't had enough CBT!
    Now that would be fun :lol: Especially if we mix up the questions in the most senseless manner possible.
     
    ahimsa, peggy-sue and alex3619 like this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    7,726
    Likes:
    12,655
    Logan, Queensland, Australia
    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.
     
    rosie26, SOC and Valentijn like this.
  10. Purple

    Purple Bundle of purpliness

    Messages:
    1,400
    Likes:
    2,312
    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".
     
    rosie26, peggy-sue and SOC like this.
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    I think some of these questionnaires may provide concrete proof that some psychologists are indeed hellspawn :p
     
    rosie26 and SOC like this.
  12. alex3619

    alex3619 Senior Member

    Messages:
    7,726
    Likes:
    12,655
    Logan, Queensland, Australia
    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.
     
    peggy-sue and Valentijn like this.
  13. SOC

    SOC Senior Member

    Messages:
    5,369
    Likes:
    6,490
    USA
    :rofl: Have you stopped beating your wife? :rolleyes: 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.
     
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    This sort of thing is a real problem. Well worth trying to draw more attention to it.
     
  15. Creekee

    Creekee Senior Member

    Messages:
    143
    Likes:
    112
    Arizona
    Yes, I'm depressed... at the pathetic state of "science" when it comes to this disease.
     
    alex3619 and GracieJ like this.
  16. Tammy

    Tammy Senior Member

    Messages:
    371
    Likes:
    307
    New Mexico
    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
     
    Valentijn likes this.
  17. GracieJ

    GracieJ Senior Member

    Messages:
    509
    Likes:
    882
    Utah
    :eek::confused::cautious: :ill: Enough said!!

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

    Valentijn Activity Level: 3

    Messages:
    6,718
    Likes:
    10,236
    Amersfoort, Netherlands
    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 o_O
     
    alex3619 and peggy-sue like this.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,698
    Likes:
    2,030
    Midwest, USA
    So these people don't even know the meaning of the word conflate.
     
    peggy-sue likes this.
  20. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    447
    Likes:
    473
    Illinois, USA

    Hi anonymous. Thanks for letting us know.
     
    Little Bluestem likes this.

See more popular forum discussions.

Share This Page