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Closed Uni of Edinburgh: Irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and fibromyalgia in those aged 45 and older – the impact of emotions

Discussion in 'Recruitment into current ME/CFS research studies' started by Keela Too, Jan 4, 2022.

  1. Keela Too

    Keela Too Senior Member (Voting Rights)

    A sponsored link to this came came up on my Facebook newsfeed.

    “You are being invited to take part in research on how emotions and relationships impact symptom severity in people aged 45 or older who suffer from IBS, CFS or fibromyalgia. Stuart Airey at the University of Edinburgh is leading this research.

    “The purpose of the study is to explore the interaction between relationships, emotions, and the severity of symptoms, in people aged 45 or older who suffer from IBS, CFS or fibromyalgia.

    The impact of these common and debilitating conditions in later life is not well understood. Some research suggests that difficulties in processing emotions and differences in the way we relate to others can contribute to the severity of symptoms. In addition, people suffering from IBS, CFS or fibromyalgia often feel as though their symptoms are not taken seriously by others, including medical professionals. This may result in emotional and relationship problems.

    The study involves completing an online survey.”

    https://edinburgh.eu.qualtrics.com/...INHSfTzVIl9WcceO18juRXBVmfQ-udjpvpyJUrs1Prf6A

    Edited to bold a couple of bits. :(
     
    Last edited: Jan 4, 2022
  2. Keela Too

    Keela Too Senior Member (Voting Rights)

    I didn’t go further than the landing page. :(
     
  3. Trish

    Trish Moderator Staff Member

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    Sounds like he's decided in advance how he will interpret any association found between emotions and symptom severity. Does it not occur to such researchers that being sicker may be tough on our emotions, not the other way around. And feeding into participants minds a direction of causation may skew the outcomes.
     
    DokaGirl, sebaaa, rainy and 21 others like this.
  4. Kitty

    Kitty Senior Member (Voting Rights)

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    When I saw the title, it reminded me of a joke I sent to a Jewish mate at Chanukah...

    At it again.png
     
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  5. Trish

    Trish Moderator Staff Member

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    I started doing the survey to see what it's like. It's full of loaded ambiguous questions. For each symptom you are asked to rate how much you are bothered by it. That can be interpreted as how bearable the symptom is, or how much it impacts your life and stops you doing things, or how much it makes you unhappy or angry or some other emotion, or how much it worries you, or how much you catastrophise about it.
    The researcher is a PhD psychology student. I think I may write to him and his supervisor.
     
    Cheshire, DokaGirl, rainy and 28 others like this.
  6. dave30th

    dave30th Senior Member (Voting Rights)

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    The subtitle about "the impact" of emotions presupposes the conclusions. Unfortunately, given that it's a cross-sectional survey, it will be impossible to tease out cause and effect. It seems pretty clear that these illnesses will be associated with troubled emotions/relationships. We know that. So what's the point?
     
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  7. Trish

    Trish Moderator Staff Member

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    It really bothers me that people can get a PhD for this sort of stuff. If my high school stats students had designed a questionnaire like this and then interpreted correlation as causation, which seems to be intended here, they would have got very low marks.
     
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  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    As usual the direction of causation is wrong --- based on what the researcher would prefer.

    Rather than going through all that work of understanding that when people are ill over a long period of time it is the illness that affects how they can function in the world in all areas including emotionally.

    Way too much work. Better then to be a voyeur extracting from people their pain at not being able to function as a normal healthy person and then provide trite simplistic solutions that require little from the researcher. Follow-up is for the researcher to go on the cocktail party circuit and drop how often their research is cited. No need to share that it's often self-citation.

    #NomorePhDworkonChronicIllness

    It's like a bloody sausage factory. And they'll all get slotted to work in IATP treatment programs which will ultimately fail. Do these students even consider their future?
     
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  9. Kitty

    Kitty Senior Member (Voting Rights)

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    Isn't it—that's why it reminded me of the 'they're at it again' cartoon.

    Also, some research is trite shite.
     
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  10. kilfinnan

    kilfinnan Established Member (Voting Rights)

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    This is appalling. So ambiguous almost every question requires context.

    I saw a film once, years ago. The main character is on the run from an organisation not unlike the masons. Every person he felt he could trust happened to be members of the organisation. Always on the run, being told, it was all in his head.
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    Interesting to see the supervisor's research interests

    Research summary

    I am currently involved in research on persistent depression, with a particular focus on evaluating the validity and effectiveness of Cognitive Behavioural Analysis System of Psychotherapy (CBASP). This includes intervention studies using single-case methodology, along with cross-sectional studies aimed at validating McCullough's (2000) developmental model of persistent depression. I also have a broader interest in single-case methodologies for investigating mediators of psychological interventions.

    Past research interests
    My MRes and PhD research was focused on investigating whether overlaps exist between cognitive and behavioural processes that are known to maintain psychopathology, and whether a single core process might account for this overlap. This research focused on Perceptual Control Theory (PCT), a theory of human functioning and behaviour, and a form of psychological therapy based on this theory called Method of Levels (MOL).
    Dr. Timothy Bird | The University of Edinburgh
     
  12. CRG

    CRG Senior Member (Voting Rights)

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    And today's word is: Alexithymia - "a personality trait characterized by the subclinical inability to identify and describe emotions experienced by oneself". Wikipedia

    Alexithymia comes up frequently when combining "difficulties in processing emotions ...... contribute to the severity of symptoms" with "IBS" on a Google Scholar search. Fewer hits when replacing IBS with CFS but still a longish list of articles. Chalder is the most recognisable author name.

    Research philosophy seems to be "we can't fix the illness, so let's see if we can fix the patient".

    Also, this style of questionnaire research might be acceptable at graduate level, but I would have thought any self respecting Phd candidate would die of shame presented with this an option. And to not offer any prior patient review of the value of the study - even just a small focus group zoom meeting to gauge how IBS and/or ME/CFS patients view the research objectives - is a pathetic omission.

    I'm not generally in favour of arbitrarily inhibiting research outside of the usual IRB type controls but I wonder if the time has come for some kind of patient 'kite mark' without which participation is actively discouraged.

    kite mark = product quality assurance system.
     
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  13. Trish

    Trish Moderator Staff Member

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    I have now completed the survey. I did it because I wanted to see the whole thing, and you can only move on to the next page if you fill in every question.
    Here's my summary and concerns about each section:

    Q 1 - 11
    General demographic information, diagnoses of ME, IBS and FM, and how long you've had them

    My comment, to quote my earlier post:
    For each symptom you are asked to rate how much you are bothered by it. That can be interpreted as how bearable the symptom is, or how much it impacts your life and stops you doing things, or how much it makes you unhappy or angry or some other emotion, or how much it worries you, or how much you catastrophise about it. It's far too ambiguous to provide useful information.

    Most of these are also ambiguous and therefore open to misuse by a researcher with an agenda.

    For several of them, I answered on the basis of current scientific research, so for questions 2, 3, 4 and 7 my answers were based on facts

    1 - I have severe ME, so of course it affects my life a lot. There was no question about severity level, so this could be misinterpreted as me catastrophising, or giving in to symptoms.

    2 - there is no cure in sight in my likely lifetime, and people who have had ME as long as I have rarely if ever recover, so answering 'never' is a realistic answer, not an emotional one, but could be misconstrued as negativity, giving up, not trying to get better etc.

    3 - it is impossible to 'control' the fact that I have this illness or its severity level, except by day to day managing as best we can to try to avoid worsening - so the question is ambiguous.

    4. - there is no effective treatment, so what is the expected answer that won't be judged as not trying?

    5. No idea what is expected here. How much I experience symptoms can be taken to mean are they present all the time? or are they bad enough to dominate my life? or do I symptom focus too much? How will this be judged in correlating it with emotions?

    6. How concerned am I? Well, it would be very odd having a life changing illness not to be concerned. But how long is a piece of string? Do they mean do I spend all day ruminating on my misfortune? Do they mean I do I phone my doctor every week asking for help? Or do they mean do I spend a lot of my very limited energy following the research and helping to run a forum about my illness? I doubt they mean the latter. Again, will they judge participants negatively for saying they are 'concerned'?

    7. A stupid question. Nobody understands ME, so how can any patient do so?

    8. I have been ill for 32 years, how am I supposed to summarise the various emotions I have experienced about my illness over that period in a single number. Whatever random number I choose will be meaningless, and subject to abuse by a researcher with an agenda.

    More in my next post.
     
    Last edited: Jan 5, 2022
  14. Trish

    Trish Moderator Staff Member

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    Continued from my last post:

    I was very concerned about this section. It seemed to me very intrusive while at the same time not providing any information of relevance to the person's physical health. Collecting this amount of detail about what may be anything ranging from a current happy relationship to a far distant past failed relationship that happened before getting sick, to the relationship of an adult child to their parent/carer, to adults who have no relationships because of isolation in ill health - without asking anything about which of these applies - is remarkably insensitive and by jumbling all of that together becomes completely meaningless.

    Honest disclosure - in order to see the rest of the survey, that section had to be filled in, so I just went straight down the middle, selecting the same neutral answer for every statement.

    Again, an uncomfortably ambiguous and useless set of questions. Trying to lump together all emotions in this way seems silly to me. Do they mean just negative emotions? And whether one shares ones emotions with others can depend largely on one's home and life circumstances and personality, age, experiences, and the behaviour of others around us in ways completely unrelated to being ill. There's also a lot of judgement in these - is it a good or a bad thing to control emotions, or to look back on one's life and reflect on past experiences? Are they going to judge someone as emotionally inadequate if they keep their emotions to themselves, or is that a good thing?

    And finally


    This is clearly aimed at diagnosing anxiety and depression.

    I am concerned that all this huge pile of data from lots of people with the 3 named conditions will be misused by dumping the lot in a stats package, doing lots of correlations and cherry picking those that reach some arbitrary level of statistical significance and used to draw unfounded conclusions about causation.

    I'm going to write to the researcher with a copy of my 2 posts and asking for a copy of the research protocol and the statistical analysis plan.
     
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  15. JemPD

    JemPD Senior Member (Voting Rights)

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    I take major issue with participants not having to have a formal diagnosis! So everyone who thinks they feel 'tired all the time' & therefore believes themselves to have CFS but actually maybe have depression, and those who fart a lot & decide they have IBS, or those who decide they have fibro because their shoulders ache because they are constantly clenching them.... their info will be taken & extrapolated to those who actually have these conditions.... its grossly irresponsible.

    I mean ok they may not be able to check that a formal dx has been made, but hopefully if it said that paticipants must have a formal dx then only the diagnosed & the really dishonest would continue with the survey.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    If you want my ha'pennyworth as advice to this student: The main purpose of a PhD is to show that the candidate has learned what is bad methodology that just perpetuates your prejudices, and what is good methodology that shows you how to find out something new. With luck responses from patients will help to serve that purpose by making it clear that this project, in its current form, is firmly in the first category. You cannot infer impact from correlation.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    And yes, @JemPD, one could mention the shedload of other errors that make the investigation meaningless even as a correlation.
     
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  18. JemPD

    JemPD Senior Member (Voting Rights)

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    I hope you will write to them @Trish you have written very eloquently there.

    I wish Jonathan were overseeing these projects, if we could clone you thatd be marvellous :D
     
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  19. Kitty

    Kitty Senior Member (Voting Rights)

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    I know, and yet it's considered perfectly normal in autism. It's not fixable, any more than any other developmental difference, and it contributes nothing to symptoms other than the inability to identify and describe feelings verbally.

    But guess what—verbal skills are pretty low down on the list when it comes to communicating and interpreting emotions, as anyone who's spent more than five minutes with a toddler or a dog will know. Soooo, no need for a psychologist to fix it after all. Phew!
     
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  20. Trish

    Trish Moderator Staff Member

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    I have sent the following to the student and his supervisor:

    Dear Stuart Airey and Dr Tim Baird,

    re: Irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and fibromyalgia in those aged 45 and older – the impact of emotions and relationships on symptom severity.

    I am writing to you with several concerns about this study which I participated in today.

    My major concern is that I cannot see how the data collected from this study can fulfil the stated research aim indicated in the title. As you will be well aware, any correlations found between scores on questionnaires about symptoms, relationships and emotions cannot and should not be used to indicate a direction of causation. The title states that it you are seeking to find out 'the impact of emotions and relationships on symptom severity.' That implies a causal direction.

    If a person has both difficulties with relationships/emotions and severe ME/CFS, FM or IBS, there are several possibilities:

    1. Living with severe ME/CFS, FM or IBS and coping with severe symptoms and the life changes severe disabling illness causes may impact negatively the person's relationships, and may lead to natural feelings of sadness, anxiety and grieving for a lost active life, just as can happen with other chronic disabling diseases such as MS and Parkinson's Disease. The more severe the symptoms the more impact this may have on relationships and emotions.

    2. The biological basis of ME/CFS is not yet known. It is possible that part of that biological dysfunction may affect brain chemistry, thereby affecting mood in ways not able to be influenced by thoughts or actions.

    3. Lack of medical understanding, belief and medical and social care and support may lead to isolation, financial hardship, inappropriate or lack of care etc, which can lead to anxiety, despression, relationship breakdown etc. The more severe the symptoms the more impact this may have on relationships and emotions.

    4. Individuals with ME/CFS, FM or IBS may, independently of their condition, also suffer from other comorbid conditions, including anxiety, depression, or may have problems with bad relationships generated by other individuals such as coercive control. There may be no causal connection in either direction between the symptom severity and these other circumstances.

    5. Suffering from ME/CFS, IBS or FM may lead to negative changes in behaviour or thoughts which in turn lead to worsening symptom severity (I have seen no research evidence to support this last step).

    6. People with particular personality types and/or behavioural patterns and/or beliefs about illness may make their symptoms more severe, or believe their disease is more severe than it really is with a combination of negative thinking and unhelpful behaviours such as avoidance of activity and social interaction. (repeated research has failed to support this proposition - I can give you references)

    If you take the above items in turn and think about the causal direction in relation to your hypothesis, and your study, it should be crystal clear that there is no way your data from the questionnaires will be able to distinguish which if any of them may be correct. Your study title could equally have stated as its aim:

    – the impact of symptom severity on emotions and relationships.

    If you find no significant correlation between the answers on symptom severity and any of the measures you are attempting to find for relationship difficulties and emotional difficulties, I guess that would indicate that there is no causal explanation in either direction, or at least that your inadequate questions have not managed to elicit any.

    If you do find some statistically significant correlations, after correcting, of course, for multiple comparisons, what then? You clearly will not be able to determine any causal direction, so will not have advanced understanding of chronic illness in any useful way. You will have no way of distinguising any of the 6 possiblities I listed above, or any other I haven't thought of.
    _____________________

    I have specific concerns about some of the questions too, which I summarise below:

    Question 12:

    For each symptom patients are asked to rate how much they are bothered by it. That can be interpreted as how bearable the symptom is, or how much it impacts your life and stops you doing things, or how much it makes you unhappy or angry or some other emotion, or how much it worries you, or how much you catastrophise about it. It's far too ambiguous to provide useful information. There is no question about the severity of the disease.

    The recently published NICE ME/CFS guideline lists core symptoms, the most important of which, post exertional malaise, is not even included in your list. The guideline also lists severity levels with descriptors. If you want to rate participants disease severity, why not use these descriptors, or use one of the recognised severity level scales. (I can provide references).

    So how are you measuring severity? Question 12 will not enable you to do so.

    Question 13

    Most of these are also ambiguous and therefore open to misinterpretation by both patient and researcher.

    For several of them, I answered on the basis of current scientific research, so for questions 2, 3, 4 and 7 my answers were based on facts

    1 - I have severe ME, so of course it affects my life a lot. There was no question about severity level, so this could be misinterpreted as me catastrophising, or giving in to symptoms, rather than being severely physically disabled.

    2 - there is no cure in sight in my likely lifetime (I'm quite old), and people who have had ME as long as I have rarely if ever recover, so answering 'never' is a realistic answer, not an emotional one, but could be misconstrued as negativity, giving up, not wanting or trying to get better etc.

    3 - it is impossible to 'control' the fact that we have this illness or its severity level, except by day to day managing as best we can to try to avoid worsening - so the question is ambiguous.

    4. - there is no effective treatment for ME/CFS, so what is the expected answer that won't be judged as not trying?

    5. No idea what is expected here. How much I experience symptoms can be taken to mean are they present all the time? or are they bad enough to dominate my life? or do I symptom focus too much? How will this be judged in correlating it with emotions?

    6. How concerned am I? Well, it would be very odd having a life changing illness not to be concerned. But how long is a piece of string? Do you mean do I spend all day ruminating on my misfortune? Do you mean do I phone my doctor every week asking for help? Or do you mean do I spend a lot of my very limited energy following the research and helping to run a forum about my illness? I doubt you mean the latter. Again, will you judge participants negatively for saying they are 'concerned'?

    7. A stupid question. Nobody understands ME, so how can any patient do so?

    8. I have been ill for 32 years, how am I supposed to summarise the various emotions I have experienced about my illness over that period in a single number. Whatever random number I choose will be meaningless, and subject to misuse by a researcher with an agenda.

    Question 14 on relationships

    I was very concerned about this section. It seemed to me very intrusive while at the same time not providing any information of relevance to the person's physical health.

    Collecting this amount of detail about what may be anything ranging from:

    - a current happy relationship with a very supportive partner

    - a far distant past failed relationship that happened before getting sick,

    - the relationship of an adult child to their parent/carer,

    - adults who have no relationships because of isolation in ill health

    - a sick person who also has caring responsibilities

    - and a host of other permutations

    without asking anything about which of these applies is remarkably insensitive and by jumbling all of that together becomes completely meaningless.

    And nowhere do you ask a direct question about whether the patient thinks their disease has changed their relationships, or about whether some aspect of their relationships has affected their disease severity.

    Honest disclosure - in order to see the rest of the survey, that section had to be filled in, so I just went straight down the middle, selecting the same neutral answer for every statement, since none of them are relevant to me in the way implied by the research aim.

    Questions on emotions

    Again, an uncomfortably ambiguous and useless set of questions. Trying to lump together all emotions in this way seems silly to me. Do you mean just negative emotions? And whether one shares ones emotions with others can depend largely on one's home and life circumstances and personality, age, experiences, and the behaviour of others around us in ways completely unrelated to being ill. There's also a lot of judgement in these - is it a good or a bad thing to control emotions, or to look back on one's life and reflect on past experiences? Are you going to judge someone as emotionally inadequate if they keep their emotions to themselves, or is that a good thing? How can you possibly make a numerical score to use in statistical analysis from these questions without implying value judgements that may be completely inappropriate?


    Questions relating to symptoms of anxiety and depression

    Some of these may have more to do with the way others treat the individual and difficult home, financial and care circumstances. There is no way of telling whether these are related to the physical disease, social circumstances or comorbid unrelated anxiety or depression disorders.
    ___________________

    I would like to ask you for a copy of the research proposal, hypothesis being tested, statistical analysis plan and ethics approval for this study, as well as answers to the questions my comments raise. I have posted my concerns and will share a copy of this email on the Science for ME forum. You would be welcome to join us there to further this discussion. I will share your reply on the forum too if you give me permission to do so.

    In response to my comments about the study on the forum, Professor Jonathan Edwards, who was an expert witness to the NICE ME/CFS guideline committee, and whose statement can be read on the NICE website, said the following:

    The main purpose of a PhD is to show that the candidate has learned what is bad methodology that just perpetuates your prejudices, and what is good methodology that shows you how to find out something new. With luck responses from patients will help to serve that purpose by making it clear that this project, in its current form, is firmly in the first category. You cannot infer impact from correlation.​

    I trust that as a PhD student and supervisor, you are both eager to improve your research methods and to learn from the experience of expert patients, carers and clinicians who have been following ME/CFS research for some time and unsurprisingly want to see high quality research that can find answers to real questions of value to patient care. This detalied response is offered in the spirit of helping you in learning to be better researchers. I hope it will be received in that light.

    I look forward to your reply,

    With best wishes,

    Trish Davis

    https://www.s4me.info/threads/uni-o...-45-and-older-–-the-impact-of-emotions.24087/
     
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