Open An investigation into the associations between perfectionism, anxiety and fatigue in people living with ME/CFS, 2024, Westwood

[BenWesty]

Hi, my name is Ben Westwood and I'm an undergraduate psychology student at The University of Worcester in the UK. This is the link to my final year research project:

https://ucw.onlinesurveys.ac.uk/8svdjgru5x-11

Having spent most of my twenties living with ME/CFS and subsequently developing severe anxiety, I am interested, through this research project, in beginning to explore the difficulties associated with living with ME/CFS in particular, and chronic illness in general.

I previously posted a link to this research project on a thread introducing myself as a new member. A number of people have already completed the survey and there was also plenty of discussion and criticism relating to it. Many thanks for both. I'd obviously be really grateful to anyone else who was happy to take the time to complete the survey.

There are more details on the participant information sheet, via the link. If you would like to contact me directly, my university email address is wesb1_21@uni.worc.ac.uk .

Thanks

Ben

 

[EndME]

Thank you for coming here, being open for feedback and engaging with us!

Given that this is supposed to be a questionnaire on ME/CFS it would seem vital to me that one asks on which diagnostic criteria an ME/CFS diagnosis is based on since this is of vital importance and can completely change any study results. Similarly as mentioned by others (and I agree with what the others have said on the other post which I just stumbled across) this project rather seems to be about the prevalence of anxiety and perfectionism in patients with ME/CFS rather than about challenges managing chronic illnesses. As such I would be impossible for this study to tell us anything about risk factors associated with onset and persistence of ME/CFS, since it doesn't ask for symptoms before, during or even after ME/CFS (for those that might have recovered) and but only during ME/CFS (i.e. it can't tell the difference between someone having a symptom due to managing a chronic illness or always having been some way). You might be able to pick up some vague correlations, but causation will remain impossible from the get go.

 

[Trish]

The previous discussion is on a members only thread here.

As was pointed out on that thread, as an undergraduate project it is probably acceptable to use 'off the shelf' questionnaires, since it's about learning how to collect data and analyse it, showing the student can go through the motions of a research study. However, conclusions of any sort of validity cannot be drawn even about associations, let alone causation from the data, as the questionnaires are completely unsuitable for people with ME/CFS, for reasons we explained.

 

[EndME]

I agree. To some degree BSc projects are always somewhat like that I suppose, no matter what field. Students haven’t acquired the means yet to do research, but they are supposed to gain a first experience in how research would roughly work. Often a less enjoyable experience for the students that have to do something that sort of has to get done and at the same time a pointless experience for the supervisors who as a result of that spend very little time in guiding the student.

However, when a field suffers from a heavy replication crisis it would seem essential to try to not ingrain in students how to contribute to such a crisis. That is, teach them solid methodologies instead. However, it has to be the supervisors or more generally the field of studies task to ensure this, not the students.

No BSc supervisor would expect a mathematician, computer science or physics student to contribute anything at all to the field of study, most likely they’ll just be doing something that someone else already did 100 years ago, however their methodology has to be rigorous and the rest is then an exercise in learning how to write down their results.

To some degree I would think that one could learn a lot more on “how research should be done” by doing a BSc project in psychology (or a similar project in medicine) which scrutinises and thoroughly examines a published paper and finds all the existing flaws and errors in methodology and writes a response to the paper, than say essentially just re-writing existing findings in the natural sciences.

 

[Andy]

There is no way that I will use my precious energy and time on completing such a questionnaire. Just maybe there is the chance that this is intended to look at how pwME, due to their reduced energy levels, might adopt behaviours that compared to the average, healthy, norm are then considered 'not normal', but I don't intend paying the cost to me to find out.

 

[EzzieD]

I've just completed the survey and to be honest, it really doesn't have any relevance to the disease ME/CFS, or any other chronic disease, at all; the questionnaires used in the survey are for asking whether someone has psychological issues, entirely divorced from whatever their physical health state may happen to be. So it's hard to see how using them aimed specifically at ME would give any interpretable/meaningful conclusions as regards that particular disease. There was also a set of questions entirely focused on 'tiredness', omitting the other serious and disabling physiological symptoms people with ME contend with.

Having said that, I hope the project will be useful, as others said above, as a learning experience on data collecting and analysing.

 

[BenWesty]

I've just completed the survey and to be honest, it really doesn't have any relevance to the disease ME/CFS, or any other chronic disease, at all; the questionnaires used in the survey are for asking whether someone has psychological issues, entirely divorced from whatever their physical health state may happen to be. So it's hard to see how using them aimed specifically at ME would give any interpretable/meaningful conclusions as regards that particular disease. There was also a set of questions entirely focused on 'tiredness', omitting the other serious and disabling physiological symptoms people with ME contend with.

Having said that, I hope the project will be useful, as others said above, as a learning experience on data collecting and analysing.

Thanks very much for completing this EzzieD, despite your misgivings. It's really appreciated, for, as you say, this very much represents a (required) learning experience in relation to the subject & the methodology etc... .