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

Indigophoton

Indigophoton

Senior Member (Voting Rights)
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
we're recruiting participants for research into responses to physical exertion in Chronic Fatigue Syndrome.
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This research aims to improve our understanding of physical exertion in those with and without Chronic Fatigue Syndrome.
What we're doing
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a condition defined by a marked loss of energy on physical or mental exertion. The cause of this illness is not yet fully understood.

The purpose of this study is to look at how people with CFS/ME respond when asked to do a physically exerting task, and what thoughts and feelings they have while they are doing the task. We would like to compare responses to people without CFS/ME.

Similar research has been done in chronic pain and has helped to improve treatment. We are hoping to do the same in CFS/ME.
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What's involved
If selected, you will be asked to complete some questionnaires. These questionnaires will ask you about various things such as fatigue and mood. You will be given the choice to complete them online or have paper copies posted to you.

You will also be asked to attend a one-off testing session which will last no longer than an hour and during which you will be asked to complete a practical task. The task will involve carrying a shopping bag. This will be recorded and you will be asked to watch this back and answer some questions about it. This will take place at the University of Bath or Southmead Hospital, Bristol.

The study will take between approximately 60 minutes (including the questionnaires).
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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.
 
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!
 
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!
 
Lisa108 said:
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!
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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.
 
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
“research into responses to physical exertion in Chronic Fatigue Syndrome”
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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):

10. USING RATINGS OF PERCEIVED EXERTION (RPE)

While doing physical activity, participants will have a perception of how hard that exercise feels. This is called a rating of perceived exertion. This feeling reflects how heavy and strenuous the exercise feels to them, combining all sensations and feelings of physical stress, effort, and fatigue. They are supposed to not concern themselves with any one factor such as leg pain or shortness of breath, but try to focus on their total feeling of exertion.
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The rating of perceive exertion (RPE) (measured using the Borg Scale below35) is not discussed in the GET booklet and therefore is not something you need to discuss with the participant unless they mention it. It is a concept that is important to the participant in their overall success with GES because it is usual for CFS/ME patients to have higher Rating of Perceived Exertion (RPE) than those who do not have CFS.12,26,36 This may be related to sleep disturbance, deconditioning, enhanced interoception (increased awareness of body sensations), or mood disturbance among other reasons.12
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The RPE cannot therefore be used as an objective measure of intensity for this patient group, although it can be a useful tool alongside heart rate measurements in face-to-face therapy. After an exercise programme, research has shown that the RPE in CFS patients is normalised, and can at that stage usually be reliable as a measure of intensity.[my bold]12
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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.
 
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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.
 
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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