University of Liverpool survey: 'Emotional Distress in Chronic Fatigue Syndrome', 2019

lunarainbows

lunarainbows

Senior Member (Voting Rights)
Hi, This is Lunarainbow’s mum. She is too ill to type now. I came across this survey and told her about it. She wanted me to post this to alert people. It looks like another bps survey to reiterate that ME is psychological illness. This survey has been posted on ME Support Facebook page by a psychologist.

https://livpsych.eu.qualtrics.com/jfe/form/SV_7Qmtc2kcNN7d0aN
 
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It is from the University of Liverpool Institute of Psychology, Health and Society and is headed Emotional Distress and Chronic Fatigue Symptoms. It says it is looking for people aged between 18 and 65 who have been diagnosed with ME or CFS to complete their on line survey. But not a lot more information on the top page.

I struggled to get the link to work on my iPad, only accessing the page on the third browser I attempted.

I have read about this somewhere else, but am struggling to recall where at present, or be certain whether I am thinking of something else completely different.

Very wary now of anything like this so would be interested to hear anyone else’s comments. I suspect, with no evidence so far, that they are seeking to find a correlation between level of fatigue and emotional distress and then infer a spurious causation.
 
I decided to give it a go to see the questions got part way through filling it out then got dumped maybe it didn’t like my answers :whistle:

It was all HADS type stuff. Does worrying help you cope. What % of time do you spend focusing on your symptoms.

The first questions were hilarious thinking back over “the last month” how tired do you feel - slowed down - you know the sort of thing. A lot less, less, about the same, more, a lot more. Well the only sensible answer I could give was about the same to all of them. I mean how is a timescale of a month even relevant.

I think in a way we should fill it in because we’re aware of the issues with these questions and won’t be so easily tricked into giving the responses the survey is designed to elicit.
 
Trying it.

CFQ.

Some questions don't even have the option of e.g. "no worrying thoughts". Ridiculous.

Man, those questionnaires are such crap. Is there such a thing as embarrassment by proxy? Feeling embarrassed for how stupendously incompetent someone else is?

Weird focus on threats. "Things that you find threatening". Leading questions. Leading questions everywhere.

I'm not sure how a question about alcohol consumption can be put as a %.

There's a questionnaire that assumes constant worrying. Hard to answer that when it's not the case. Some questions are frankly the Rorschach test in text form, they are phrased so oddly. This is as uninterpretable as any random Buzzfeed "which GOT character are you?", you can make up any conclusion you want since there's no relation between the questions and the topic at hand. Some of the questions I have no idea how to answer, they're just so convoluted and could have any number of answers depending on how it's interpreted.

This is basically version #394634964 of fishing for emotional correlation. Boring.

If completing the survey did lead to you feeling any discomfort, you can also contact the Principal investigator Dr Peter Fisher, Senior Lecturer in Clinical Psychology. Email: peter.fisher@liverpool.ac.uk
Telephone: 0151 794 4160

Feedback on the study and the overall results will be available from the Student Investigator, Amelia Wright from October 2020. Please email: amelia.wright@liverpool.ac.uk
Click to expand...
 
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Do the compilers of this questionnaire understand that ‘chronic fatigue’ is a symptom of many very varied conditions from multiple sclerosis to CVAs to gulf war syndrome to depression?

Do they understand that ME/CFS has many symptoms only one of which is chronic fatigue and that for some/many it is not the most significant or the most disabling symptom of the condition? Indeed for a minority with condition, a moderate stable level of disability and who effectively manage their activity, fatigue is not a day to day issue.

When they talk about ‘chronic fatigue symptoms’ what do they mean? Surely fatigue is a single continuum so if they are granting it a plurality, presumable they are subsuming things that are not fatigue under the heading of fatigue symptoms. What do justification do they have for subsuming non fatigue symptoms under this ‘chronic fatigue symptoms’ umbrella? It feels that they are prejudging the issue right from the beging, before they even ask a single question?

[edited to correct grammar]
 
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Simbindi said:
So is it a first year undergrad project?
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My first year undergrad project was better than that! But I was at JMU Applied Psychology not Liverpool University Psychology. Remember also that Moss-Morris spent time at Liverpool Uni, in fact I think I may have filled in some of her stuff... But seeing as I failed to send the final questionnaire in time I didn't count. :)
 
Well, I screwed that up. I thought the Yes/No on the first page was about whether or not I wanted to be entered into a prize draw. I said No then got a "Thank you for your time response" and that was it! I can't change my answer either. (I haven't tried deleting cookies - I simply can't be bothered.)
 
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