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(Not a recommendation) Bath University, Volunteer for research investigating Chronic Fatigue Syndrome

Discussion in 'PsychoSocial ME/CFS Research' started by Indigophoton, Apr 23, 2018.

  1. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    This is Bath Dept.of Psychology. The supervisor is Jo Daniels, research interests,
    • Metacognitions and symptom severity in COPD
    • Emergency Dept frequent attenders
    • Early Intervention in fatigue
    • Health anxiety in Chronic Fatigue Syndrome/ME
    • Pain in Chronic Fatigue Syndrome/ME
    • Fibromyalgia
    http://www.bath.ac.uk/campaigns/volunteer-for-research-investigating-chronic-fatigue-syndrome/

    Let me guess. The idea is to show that people with CFS find carrying bags more exhausting than do regular people because they think the bags are heavier/that they are weaker/that there's further to go...

    So. much. waste.
     
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Frequent medical appointments- straight out of MUS
     
    Joh, Skycloud, Allele and 11 others like this.
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    What would Rowe and Montoya make of this?
    Words simply fail me...
     
    Joh, Skycloud, Allele and 11 others like this.
  4. Tia

    Tia Senior Member (Voting Rights)

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    It's like investigating how people with diabetes react when you offer them sugar compared with how people without diabetes react when you offer them sugar. You'll find differences but it will tell you nothing of use. A serious confusion of cause and effect.

    "Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a condition defined by a marked loss of energy on physical or mental exertion." Can't even get the definition right. :(

    I want to have a conversation with this phd student (I think it's a phd student) and explain to her what it's really like.... I, like all of us, would really like to move around more but when I do I get flu-like symptoms. Graded increasing of exercise, even very gradually, doesn't work. It's that simple.

    Also, I do wonder if this psychology obsession is fed by the poor standard of diagnosis. i.e. people who might actually have health anxiety/exercise avoidance/ possibly depression are being mis-diagnosed with CFS? They then do respond to psychological interventions and so the rest of us, who present very differently, are assumed to be in the same category? I don't have any evidence for this, just my wonderings, I find it so hard to believe!
     
  5. Trish

    Trish Moderator Staff Member

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    ''Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a condition defined by a marked loss of energy on physical or mental exertion.''

    So the study is on how you feel when you carry a shopping bag.

    They have no idea.
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    • Emergency Dept frequent attenders
     
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  7. anniekim

    anniekim Senior Member (Voting Rights)

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    Agree what a waste of funds...
     
  8. Lisa108

    Lisa108 Senior Member (Voting Rights)

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    Well, maybe I should become part of that trial. Went grocery shopping today, first time this year! It felt so great doing something that normal! And a bit contributing, since lately shopping became another task on my boyfriend's list...

    So listen, BPS crowd, carrying a shopping bag feels great and satisfactory to a ME/CFS patient (n=1). And I don't care if I'm worse tomorrow, cause it was totally worth it!
    Looks like you have to change your false illness belief!
     
    rainy, Jenny TipsforME, Joh and 20 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Ah, but you weren't carrying a shopping bag in a TRIAL. In a trial you would have thoughts about being a patient carrying a bag unlike th controls who would have quite different thoughts about being a normal person discovering what is like to think one is a normal person carrying a bag just or fun.

    And you cannot blind trials so that patients do not realise they are patients and normal people do not realise they are there just to take part in a charade.

    Maybe they should do atrial of psychologists carrying bags, as a positive control for barmy thinking.
     
  10. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    The important thing is that they haven't come up with a 'witty' acronym yet. Standards are slipping.

    I'm glad they spelt out fatigue for me in wooden blocks. Not patronising at all.
     
  11. Trish

    Trish Moderator Staff Member

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    I have an acronym for them to help them with their shopping bags: Bags up guys, gals, everyone ready, OK, feet forward...

    PS I'm a very polite old lady, I have no idea what that spells out...
     
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    will there be anything in the shopping bag? will you have to pay 5p for it? so many questions.
    Much too complex a study for a numpty patient to understand.

    Will the follow up study use a shopping trolley?
     
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  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    it may just confirm that ME patients have the physical capacity of a 70 year old....
     
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  14. Evergreen

    Evergreen Established Member (Voting Rights)

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    I think even in my early, most naive days if I’d been asked to parade around with an artificially filled grocery bag, then watch a video of myself walking with said bag and say how I felt, I would have been hard pressed to remain polite. What am I thinking? Eh, I’m thinking you’re a…

    What are they going to do when some of/many of their very mild, mild and moderate non-mobility-aid-using cohort have no trouble carrying the bag? Put stones in it until they report negative thoughts?

    I dislike the usual attempt to spin psych research as physical
    http://www.bath.ac.uk/campaigns/volunteer-for-research-investigating-chronic-fatigue-syndrome/

    This is an excerpt from the GETSET therapist manual that seems pertinent here (see full manual here https://www.qmul.ac.uk/wolfson/medi.../GETSET-therapists-manual-with-appendices.pdf):

    Mm hm.

    I feel the need for a stiff drink but my perceived intolerance of alcohol and consequent fear avoidance preclude it.

    Edited for clarity and links.
     
    Last edited: Apr 24, 2018
  15. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Great acronym @Trish
     
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Last edited: Apr 24, 2018
  17. Cheshire

    Cheshire Moderator Staff Member

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    No trace of another disease control group. So how can you know that these "thoughts and feelings" experienced by patients during the task and after are linked to having "CFS/ME" or to be sick? I guess carrying a bag is a whole different experience when you're healthy or when you have ME, MS or whatever.
     
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  18. NelliePledge

    NelliePledge Moderator Staff Member

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    Or in BPS speak mistakenly believe they have the capacity of a 70 year old

    Now if they had some physical measures.......
     
  19. Keela Too

    Keela Too Senior Member (Voting Rights)

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    What about comparing to a cohort that are first day out of bed after a full blown 'flu. Might those patients also have feelings about being asked to carry shopping bags for the amusement of some researchers. Might they too use @Trish 's trial acronym??
     
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  20. NelliePledge

    NelliePledge Moderator Staff Member

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    Yep sorry B not exactly the same but I meant it was all about the “drain on the NHS” angle MUS proponents espouse. Total BS as we all know we don’t use much by way of NHS resources at all cos we get push back if we bother trying.
     

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