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Do labels matter? Implications of ongoing symptomatic chronic illnesses labeled as conventional diagnoses vs. functional somatic syndromes 2023 Smith

Discussion in 'ME/CFS research' started by Andy, May 24, 2023.

  1. Andy

    Andy Committee Member

    Hampshire, UK
    A consideration of chronic illness according to illness labels that are medically understood as opposed to being outside of medical understanding may reveal unique differences in how individuals understand their illness and how such lay understandings relate to health-related quality of life. Study aims are framed according to the commonsense model of self-regulation with a focus on characterizing illness representations according to chronic illness diagnosis type.

    Individuals suffering from symptomatic chronic illnesses (n  =  192) completed measures of illness representations, coping, and general health. Participants were categorized into one of two groups based on reported diagnosis/symptoms: (a) conventional diagnosis (CD) or (b) functional somatic syndrome (FSS).

    FSS participants reported lower illness coherence and greater illness identity than CD participants. Overall, illness coherence predicted negative coping which mediated the relationship between illness coherence and general health.

    Minimal differences were found in illness representations across FSS and CD groups with distinctions found only for illness coherence and identity. Illness coherence stands out as particularly important for coping and health-related quality of life for individuals with ongoing symptoms. Healthcare professionals should work carefully with chronically ill populations to address potential impacts of illness coherence, especially among FSS patients.

    Paywall, https://journals.sagepub.com/doi/10.1177/17423953231174926
    Peter Trewhitt and Trish like this.
  2. Trish

    Trish Moderator Staff Member

    It's hard to make sense of this without seeing the full paper and the questionnaires used. The abstract unhelpfully doesn't even list the conventional diagnoses included, or what diagnostic criteria were used for FSS. Let alone what they mean by the terms used, or which questionnaires were used. Looks to me like another cheap and easy but meaningless questionnaire based psych doctorate project.
  3. CRG

    CRG Senior Member (Voting Rights)

    Illness coherence seems to be a term developed out of the ideas of Antonovsky (Health, Stress and Coping) - explanation of which : The Sense of Coherence in the Salutogenic Model of Health and formalised in the Illness Perception Questionaire (IPQ-R) to which Moss-Morris has been a contributor: The Revised Illness Perception Questionnaire (IPQ-R) and further conceptually developed as "The common sense model of illness self-regulation" A conceptual review and proposed extended model

    Reference list for the Smith paper:

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  4. bobbler

    bobbler Senior Member (Voting Rights)

    True, need more info. Also given the investigators are the ones who categorised indeed who knows what is in the FSS group.

    I highly doubt that the label is anymore that one tiny factor in explaining any differences in the measures they have used given the vast differences we know about whether non-diagnoses, employment, medical, financial, social support and deliberate constructed outcast status and harmful therapies that act as conversion courses could be involved for those.

    Someone going to the media for decades suggesting all those with x are trolls who lie in bed all day and should be bullied with y unpleasant and untrue phrase meaning that individuals get that thrown at them as a contemptuous attitude day in day out because everyone around them has at least been given permission if not encouraged or been told to is going to account for a lot more of a shock in 'coping' - given noone could ever predict they'd face such dystopian bile 'in the name of mental health' (the 2 most important aspect scientifically for which as protective and helping factors have always been confirmed as: support network and situational ie not being bullied and having others help sort functional matters, NOT the opposite way around which this 'new system' of mental health in name only seemingly targetedly attacked to dismantle in its changes over the last decade) - than whatever little non-things they've put in their survey I imagine.

    So maybe it is correct to be done as a 'see what the whole bigotry of the system does' as a retitle, rather than any delusion the author has been given that it is either about labels individuals might have themselves or any internal factors to do with them. It will be describing who has been selected out by a system for nasty treatment and what it does to them surely? Not about 'coping' and not 'down to the individual' but about deliberate, concerted destruction of the self - which have been done explicityl because noone would survive it and escalated to ensure should they do it is made worse - based on presumptions and labels for no reason by others. And I guess therefore the what goes with the name 'in the system' is 'what's in a label'.

    Lets not make the victims of other's antisocial behaviour or unkindness (if I have to say it might be misguided or inadvertent but I do often feel it doesn't take much empathy if you are in a positin where your eyes should be open to what you do) take the blame for the intended consequences of it. Or for the industry to get away with rewriting such terrible actions as anything other than it is, what it causes to humans shouldn't be a surprise and if it is then the problem is with the person pretending they are surprised by it. Perhaps it shoudl be a psychological condition, but it isn't the patients and I suspect there is a vast constructed 'group psychology' pushing of it aspect. Now that would have been interesting to see.

    Of course they always ensure such labels are demeaning, derogatory and encourage more of the don't listen to them, but that is because they aren't intended for medical good or purposes just to achieve agendas and power differentials. So why wouldn't those who are effectively identified as 'targeted' by these things be apparently according to their term 'coping less well' according to mine 'more harmed due to removal of support and targeting with unkindness' - it is like a bunch of people who smashed up their toys writing a manifesto as to why it was the toys fault they've got broken toys as they must have been defective.

    So in a way it doesn't matter what the details are in that survey I doubt they are relevant or even rational to the real differences of experiences of those 'selected out for special treatment' and certainly not the 'why' or 'mediating factors', it simply provides proof that their doing it and focusing on it in the first place - which goes on way before they got to this researcher who I assume is following the same behind closed doors heuristics given for doing so - leads to behaviours and situations that are immensely harmful?
    alktipping and Peter Trewhitt like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Or they could also not do any of that useless mumbo-jumbo and instead do their actual job, if someone could somehow figure out how to hold people accountable and motivate the people wasting public resources on junk like this. Or just kick them out entirely for being useless. Should be an easy choice, but one requires actual work so I guess it's off limits.
    Last edited by a moderator: May 26, 2023
  6. bobbler

    bobbler Senior Member (Voting Rights)


    Yep. If it was in the common sense, does what it says in the tin language and method ecpected if business literature this one would surely be:

    do the people the medical profession single out and chuck under these horrible buckets fir bad treatment suffer more? Yes

    does it lead to really bad outcomes vs not doing that? Yes

    what is it that after labelling into these buckets that ideology then levels at these people to cause harm and take things away from them vs what those who aren’t put into those buckets get levelled at them?

    OK maybe we can conclude that ‘the label is just the name of what this system does to those chosen unlucky individuals as a pathway for outcast status’ and the ‘outcome’ is as they intended/THEIR responsibility. So looking for pretend internal factors is just denial. How much are those who make their money in some way from ‘people like this’ having spent on what they do because yes clearly it isn’t going to those who are accountable for anything other than focusing on why they deserve that treatment as PR and if they got worse from it maybe they are losers rather than the whole thing being transparently harmful to anyone.

    It would be unethical of course to take a load of people with cancer and heart disease and chuck them into the dystopia with a label telling them what they have isn’t true and here’s your new world where we control what others think of you and how poorly you get treated just to watch the same destruction bit by but occur. You could probably do it enough with well people by labelling them enough and rumour spreading with forced appointments some of them would lose their jobs and support networks and access to functional things everyone accesses normally to replicate that ‘added disability’ but what would the drop out rate and ethics be of that too. And they’d probably be left never escaping that label once damaged so their ‘I was well before all this’ claim would be rewritten.
    Last edited by a moderator: May 26, 2023
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  7. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Aotearoa New Zealand
    Link for ref for IPQ-R (#20 in CRG's list above) is: The Revised Illness Perception Questionnaire IPQ-R (Moss-Morris et al, 2010, Psychology and Health)

    Screenshot 2023-05-25 at 8.03.33 AM Medium.jpeg
  8. bobbler

    bobbler Senior Member (Voting Rights)

    Did they manage to make the assessment’blind’ without ‘face fits’ demographic info? That is often there in abstracts on these ‘new confitions’ to help front line staff know how many and what type of people they should be on the look out for.
  9. Trish

    Trish Moderator Staff Member

    Thanks for the list, @SNT Gatchaman. So what they mean by FSS is anything they aren't convinced is a physical disease - including ME/CFS, FM etc.
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  10. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Aotearoa New Zealand
    In case we don't have the IPQ-R, here are the questions they evaluated in the above ref (many read as a rating of the illness itself and medical capability/competence, rather than anything to do with the patient) —

    Timeline acute/chronic
    My illness will last a short time
    My illness is likely to be permanent rather than temporary
    My illness will last for a long time
    This illness will pass quickly
    I expect to have this illness for the rest of my life
    My illness will improve in time

    Timeline cyclical
    The symptoms of my illness change a great deal from day to day
    My symptoms come and go in cycles
    My illness is very unpredictable
    I go through cycles in which my illness gets better and worse

    My illness is a serious condition
    My illness has major consequences on my life
    My illness does not have much effect on my life
    My illness strongly affects the way others see me
    My illness has serious financial consequences
    My illness causes difficulties for those who are close to me

    Personal control
    There is a lot which I can do to control my symptoms
    What I do can determine whether my illness gets better or worse
    The course of my illness depends on me
    Nothing I do will affect my illness
    I have the power to influence my illness
    My actions will have no affect on the outcome of my illness

    Treatment control
    There is very little that can be done to improve my illness
    My treatment will be effective in curing my illness
    The negative effects of my illness can be prevented (avoided) by my treatment
    My treatment can control my illness
    There is nothing which can help my condition

    Illness Coherence
    The symptoms of my condition are puzzling to me
    My illness is a mystery to me
    I don't understand my illness
    My illness doesn't make any sense to me
    I have a clear picture or understanding of my condition

    Emotional representations
    I get depressed when I think about my illness
    When I think about my illness I get upset
    My illness makes me feel angry
    My illness does not worry me
    Having this illness makes me feel anxious
    My illness makes me feel afraid
    Last edited: May 24, 2023
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  11. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Aotearoa New Zealand
    Hope this answers —

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