Open impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults

Greetings!

Looking for Recruiting participants:

We are working on a research project that aims to explore the impact of chronic fatigue syndrome (ME/CFS) on identity during the transition into young adulthood at Sheffield Hallam University.

I am doing this research under the supervision of Dr Tria Moore C.Psychol, AFBPsS, who is Health Psychologist, Psychotherapist Senior Lecturer in Psychology and MSc Health Psychology Programme Director.


The study involves taking part in an audio-recorded online Zoom interview with me for up to 20-30 minutes. I will ask questions about your diagnosis and how living with this condition may have influenced your perception of yourself. There are no right or wrong answers, I am only interested in your own thoughts and feelings. You will need to sign a consent form to participate that will be sent by email along with the information sheet.






Approval for this study has been granted by the University Ethics Committee at Sheffield Hallam.

Thank you!

Researcher contact details:

Daniyah Alashari
Email: daniyah.alashari@student.shu.ac.uk
Sheffield Hallam University
Department of Psychology, Sociology, and Politics



Supervisor contact details:
Dr Tria Moore

Senior Lecturer in Psychology
Tele: 0114 225 2259
Sheffield Hallam University
Department of Psychology, Sociology, and Politics
Heart of Campus
Collegiate Crescent
Sheffield S10 2BP

 

Hi - I’m 25 and developed ME/CFS following a Covid infection. Would you accept people who have a dual Long Covid and ME/CFS diagnosis?

Also, what would participating involve - how large a commitment is it?

 

Can you explain what identity construction means?

 

I also help run a support group for young adults (18-33) with Long Covid and ME/CFS. But before participating or sharing this in that group, I'd want to know a bit more about the research.

I think it's potentially a really fascinating question. I fell ill when I was 22, and being significantly debilitated with ME/CFS has changed who I am in a very different way to, say, if I'd developed cancer or diabetes. Personally, I've gone from being a high achieving student who was v social to being largely bedbound. The illness has upturned my life, and learning to cope with the disease has meant having to significantly change who I am and what I see as important, at least until I substantially improve. There are lots of factors specific to ME/CFS that make it a particularly interesting in this respect; just how low a quality of life it is associated with; the entire absence of any effective treatments; the decades-long dismissal of the condition as psychological; profoundly negative societal attitudes towards ME/CFS; and what post-exertional malaise and pacing mean for young adult life. But all of that is contingent on exploring what ME/CFS - as a highly debilitated biological illness - means for young people.

There have been decades of low-quality research into the condition asserting that it's largely psychological. Strands of that research have also incorrectly suggested that certain personality/identity traits are correlated with the disease, for instance "type-A" personalities. If the proposed study belonged more to that psychosocial inclination- for instance, if the focus was on exploring the role of identity construction on the pathogenesis of ME/CFS as a psychosocial condition - I personally definitely wouldn't participate and wouldn't recommend it to people in the support group.

 

Hi @Dania Ala and welcome. It would be good to hear more of the background ideas and perhaps you could summarise for us in this thread or link to some documentation. (Echo Sean's point above - you definitely want to use "ME/CFS"!)

This section on the Wikipedia page may be relevant to the ideas —

 

That is what we call growing up. Or life.
ME/CFS plays havoc with growing up.

I would ask @Dania Ala to give us details of why this enquiry is being made.
Most enquiries of this sort seem to be part of psychology courses and research methodology in psychology tends to be very poor and heavily flavoured with preconceptions.

As everyone here knows, I don't have ME/CFS. All I would say is that for a health professional or prospective health professional just reading the threads here is all you need to know about how ME/CFS affects growing up. No need to do a study. Even if a study is required I would suggest just reading here for a month, not using questionnaires that miss the whole point. That way nobody is being asked to divulge things they might later regret got into a document they do not think is well interpreted.

 

Hi @RaviHVJ


I'd love to chat with you, and yeah, you can participate in the study. We'll have an online Zoom interview that will last around 30-60 minutes . We'll talk about your diagnosis and how it's shaped your self-perception.

Before we get started, you'll need to sign a consent form, which I'll email you along with an information sheet.
Looking forward to our conversation.

 

yeah, sure. The study aims to understand the experiences of young adults aged over 18 to 25 years old diagnosed with CFS. Also, it explores the influence of CFS on the formation of identity during the critical transition stage to adulthood for the participants. The focus delves into the introspection of participant’s self-perception, their reflections on childhood experiences, friendships, and familial dynamics, and an exploration of their interpretations of societal perspectives regarding their condition.

Please don't hesitate to let me know if you are interested in participating in the study or if you have any other questions.

 

Thanks so much for bringing that to my attention! You're absolutely right. I appreciate your insight, and I'll definitely use ME/CFS from now on to stay aligned with the terminology organisations like NICE use ( I've already change it).

Your feedback is invaluable, and I'm grateful for it!

 

Yes. I've attached it to this post. Please take a look and let me know if you have any questions; I will happily answer.

 

Dania,

I am a professor of medicine who has spent a lifetime in medical research. I am a member here because I am interested in improving research quality for ME/CFS.

Your study cannot do what you want it to do. You cannot increase the understanding of the science community about people's experiences simply by asking some questions. You may want to know more about ME/CFS but it you do, just listen in.

You cannot explore the influence of CFS on the formation of identity because you cannot establish any cause and effect relationship. This is typical bad psychological methodology.

Why are you prying into peoples childhood experiences and family dynamics. That smacks of typical psychological blame attribution - the very last thing people with ME/CFS need. Maybe you are not yet aware that all this family psychology stuff is unfounded speculation and often pernicious and damaging.

Perhaps the important thing would be to understand how the experiences of people with ME/CFS might impact on your own identity construction or growing up? Learning to see bullshit for what it is?