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Preliminary ICF core set for patients with myalgic encephalomyelitis/chronic fatigue syndrome in rehabilitation medicine, 2020, Ekholm et al

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Jun 4, 2020.

  1. Andy

    Andy Committee Member & Outreach

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    Abstract only, https://www.medicaljournals.se/jrm/content/abstract/10.2340/16501977-2697

    Note
    @PhysiosforME , one of interest to you?
     
  2. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I wonder if this can be used to estimate disease burden weightings?
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Without looking at the details it's hard to say but this looks useful at first glance. Numbers appear a bit low, frankly, I'm not sure how one can have a diagnosis of ME without some form of impairment, other than in remission. What's hardest is in building a sample representative of the range and proportions of impairment, the ratios of mid vs moderate vs severe, which we don't even know about.

    Still, looking forward to reading this. Evaluation of impairments seems like the kind of things that should have been done decades ago, thoroughly and continuously supplemented and detailed.

    Since I had no idea what those words meant:
     
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  4. Medfeb

    Medfeb Senior Member (Voting Rights)

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    As noted, hard to say without seeing the full paper. One thing that will be key is if this framework has a mechanism to account for the impact of PEM on functioning and disability. That's been a critical piece in getting approval for disability in the US.
     
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  5. Simone

    Simone Senior Member (Voting Rights)

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  6. Hutan

    Hutan Moderator Staff Member

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    I agree with Medfeb's point about the variability of functioning over time. It's really hard to assess and quantify that.

    One thing I struggle with in assessments like these is wanting the reality of disability to be acknowledged but also wanting to see myself and be recognised as a person who can still do things.

    It's all too easy to see someone with a disease recognised as affecting higher cognitive functions or attention functions as not being able to make decisions for themselves. People can sometimes be unable to concentrate and then other times be able to produce really fine work. It's difficult for the person with ME/CFS and for the people around them trying to support them.

    In this paper, there's an assessment of Emotional function B152:
    Specific mental functions related to the feeling and affective components of the processes of the mind.
    Inclusions:
    functions of appropriateness of emotion, regulation and range of emotion; affect; sadness, happiness, love, fear, anger, hate, tension, anxiety, joy, sorrow; lability of emotion; flattening of affect​

    It was assessed by a physician. 23% of people were assessed as having no loss emotional function; 39% of people had mild impairment; 23% of people had moderate impairment; 12% had severe impairment.

    I feel that my emotional function is essentially ok. When I look at my son, I think his emotional function is essentially ok. There are times when we feel like we have the flu, and then our emotional function is probably similar to a person with good emotional function who has the flu. I've had 'flattened affect' written in my medical notes once when I was actually exhausted from sitting for a long time in the waiting room and politely masking my rage at the patronising attitude of the specialist I was seeing. My son has had 'flattened affect' written in his medical notes when he just couldn't be bothered using his energy to actively engage with someone he thought was stupid. He was definitely still quite capable of humour and anger when he chose.

    I wonder about the accuracy of assessments of emotional function, especially at times when people are grieving the loss of so much of what was important to them and especially by clinicians with prejudices about ME/CFS. Too little emotion might be wrong, too much emotion might be wrong, a particular emotion might be wrong...

    I can see that if someone has depression, then their emotional function is impaired. I guess high levels of stress can impair emotional function. But I've heard of people with very severe ME/CFS able to use their imaginations and memories to experience rich emotions. You only need to read some of the blogs of people with severe ME/CFS to know that these are people with amazing mastery and awareness of their emotions, in really dire circumstances.

    I've had fellow patients suggest to me that people with ME/CFS are emotionally labile, unable to regulate our emotions, with the inference that we can't trust our emotional responses. They have suggested that people with ME/CFS are quicker to take offence or can't communicate as well. But, as a moderator here, I see a range of personalities, with people appearing quite normal when it comes to emotional range and control. Many people with ME/CFS are incredibly emotionally steady and resilient.

    I guess I think that, in embracing some of these labelled disabilities, we may be diminishing our agency. A finding of 74% of people with reduced emotional function in one study doesn't mean that everyone with ME/CFS has reduced emotional function, or that they have reduced emotional function all the time. Or that, when they feel anger, that should be seen as just a symptom of the illness. We have lost a lot; I'm not sure that we also have to accept that our emotions are faulty.
     
    Last edited: Aug 26, 2020
  7. Ravn

    Ravn Senior Member (Voting Rights)

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    This seems to be what they're proposing to develop:
    https://www.icf-research-branch.org/icf-based-documentation-form

    Currently there only seem to be ICF core sets for a limited number of conditions.

    I had a play with the electronic documentation form tool (see link in quote), using MS as an example. The tool worked fine but the resulting form looked somewhat headache inducing.

    Which makes me wonder, are these forms actually used in practice - by doctors to document disability, by benefit agencies to assess eligibility, or by researchers to document treatment effects - or are they just a nice idea the WHO once had that never really took off?

    In other words, is it worth spending energy on trying to steer this research group towards creating the best possible core set? Or will whatever they end up producing just gather whatever the digital version of dust is anyway?
     
  8. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Looks interesting. This result stood out:
     
    Last edited: Aug 29, 2020
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  9. Cheshire

    Cheshire Moderator Staff Member

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    Had you reacted, you would have been written off as histrionic...
     
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