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

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Dania Ala

Established Member
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.



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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
 
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Dania Ala said:
Greetings!

Looking for Recruiting participants:

We are working on a research project which aims to explore the impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults aged 18 to 25 at Sheffield Hallam University.

If you’re aged 18 to 25 years old and have a confirmed diagnosis of CFS, we would love to hear your story. If you are interested in taking part or have any questions before considering taking part, please contact me.

Thank you!
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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?
 
Dania Ala said:
Greetings!

Looking for Recruiting participants:

We are working on a research project which aims to explore the impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults aged 18 to 25 at Sheffield Hallam University.

If you’re aged 18 to 25 years old and have a confirmed diagnosis of CFS, we would love to hear your story. If you are interested in taking part or have any questions before considering taking part, please contact me.

Thank you!
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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.
 
Calling it "chronic fatigue syndrome CFS/ME" is not a promising start. Might seem a trivial point, but labels matter, especially in this highly politicised area of medicine. NICE, and other institutions around the world and the peer review journals, are increasingly referring to it as ME/CFS. Best to use that.
 
Dania Ala said:
We are working on a research project which aims to explore the impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults aged 18 to 25 at Sheffield Hallam University.
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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"!)

Jonathan Edwards said:
Can you explain what identity construction means?
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This section on the Wikipedia page may be relevant to the ideas —

Jeffrey Arnett's theory[11] states that identity formation is most prominent in emerging adulthood, consisting of ages 18–25. Arnett holds that identity formation consists of indulging in different life opportunities and possibilities to eventually make important life decisions. He believes this phase of life includes a broad range of opportunities for identity formation, specifically in three different realms.

These three realms of identity exploration are:

  1. Love: In emerging adulthood, individuals explore love to find a profound sense of intimacy. While trying to find love, individuals often explore their identity by focusing on questions such as: "Given the kind of person I am, what kind of person do I wish to have as a partner through life?"
  2. Work: Work opportunities that people get involved in are now centered around the idea that they are preparing for careers that they might have throughout adulthood. Individuals explore their identity by asking themselves questions such as: "What kind of work am I good at?", "What kind of work would I find satisfying for the long term", or "What are my chance of getting a job in the field that seems to suit me best?"
  3. Worldviews: It is common for those in the stage of emerging adulthood to attend college. There they may be exposed to different worldviews, compared to those they were raised in, and become open to altering their previous worldviews. Individuals who don't attend college also believe that as adult they should also decide what their beliefs and values are.
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It was interesting to see this on the Sheffield Hallam University website - information for students:
Are you managing a long term health condition alongside your studies and a social life?
We have often found that in order for a student to access the support they are entitled to, they may first need support to identify their needs as important. Shame, stigma and upsetting history with chronic illness can prevent this, which is why Wellbeing Services work with Disabled Student Support to help students feel more confident about identifying their needs and accepting their condition.
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Which is good point, and nice to see a university making it.

It does raise a problem with the planned research though. A lot of young people with ME/CFS will not want to participate in the research that is the topic of this thread. People who have not accepted their illness or who prefer not to think about it are much less likely to participate. People who have suffered a lot from disbelief and stigma may not be willing to declare themselves as having ME/CFS and/or run the risk of contributing to a study with a harmful outcome. Not every young person who has ME/CFS is likely to even hear about the study. Therefore, it can only, at best, give a partial picture of the impact of ME/CFS on identity construction in young people.

It looks as though Sheffield Hallam runs some courses on 'Managing Long Term Conditions' and 'Infectious diseases and long term conditions'. It would be interesting to know what is taught about ME/CFS.
 
Hutan said:
It was interesting to see this on the Sheffield Hallam University website - information for students:

Which is good point, and nice to see a university making it.

It does raise a problem with the planned research though. A lot of young people with ME/CFS will not want to participate in the research that is the topic of this thread. People who have not accepted their illness or who prefer not to think about it are much less likely to participate. People who have suffered a lot from disbelief and stigma may not be willing to declare themselves as having ME/CFS and/or run the risk of contributing to a study with a harmful outcome. Not every young person who has ME/CFS is likely to even hear about the study. Therefore, it can only, at best, give a partial picture of the impact of ME/CFS on identity construction in young people.

It looks as though Sheffield Hallam runs some courses on 'Managing Long Term Conditions' and 'Infectious diseases and long term conditions'. It would be interesting to know what is taught about ME/CFS.
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Another point is that young people with ME/CFS may not have received the diagnosis within the correct age bracket. I developed symptoms around ~17 years of age, but weren't diagnosed until years later. In my country it is estimated it takes 5-6 years to get a diagnosis, and I wouldn't be surprised if it takes longer for teens-young adults ("school stress", "just mono", "depression" etc. used to explain symptoms in the meantime). Then again at least over here there has been some improvements in understanding ME/CFS in pupils, so maybe it is better than when I got ill.
 
SNT Gatchaman said:
This section on the Wikipedia page may be relevant to the ideas —
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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.
 
Edit: This post was written befor Dania edited the opening post to provide more information.

Hi @Dania Ala, welcome to the forum.

I think it's important that reseachers inviting people to participate in a study do so in a professional way, with details of their professional affiliation, supervisor if it's a student project, ethics approval, hypotheses being tested, information provided to participants, a published protocol if there is one, the method being used to collect information (questionniares, interviews, etc) and how the information provided by participants will be analysed.

The information and invitation to participate should include a professional contact address, and copy of an official invitation to participate. Just asking on a forum for people to contact you is not appropriate. How do our members and readers know if you are genuine?

In the case of ME/CFS, I think you also need to specify the purpose of the study, how you think the outcomes will be helpful to people with ME/CFS, and how you intend to insure that the sample is not heavily skewed and likely to provide distorted information.
______________

People with ME/CFS have, sadly, been subjected to decades of very poor quality research based on questionnaires and interviews, leading to decades of misunderstanding and gaslighting. We are therefore, I think you would agree, understandably suspicious of social science research that aims to draw conclusions about the beliefs, experiences, behaviour, and mental health of people with ME/CFS.

I think almost without exception questionnaire based studies I have participated in onliine or read published papers about, have been dire, with unsuitable questionnaires with leading questions, inappropriate questions, and false assumptions.

Here are links to threads on just a few recent ones that I participated in, with my critiques:

An investigation into the associations between perfectionism, anxiety and fatigue in people living with ME/CFS, 2024, Westwood
Also discussed on this members only thread.

The Living With a Long-Term Condition Study (LTC), King's College London

Uni of Edinburgh: Irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) and fibromyalgia in those aged 45 and older – the impact of emotions

And here is an example of a better study which still used questionnaires, but did not try to draw any false psychlogical or behavioural conclusions:
BMJ: Impact of ME/CFS on the quality of life of people with ME/CFS and their partners and family members.... Vyas, Muirhead et al, 2022

We have also seen examples of studies based on interviews, where the researchers used thematic analyses based on various sociological theories, and published their conclusions with short quotes from the interviews. With these, both the problem of leading questions in interviews, and the analysis and conclusions are, in my opinion far too subject to the biases of the researchers.

I've run out of energy to look for examples of good and bad interview based studies we've discussed. I'll try to come back later if no one else gets in first.
 
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RaviHVJ said:
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?
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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.
 
Jonathan Edwards said:
Can you explain what identity construction means?
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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.
 
Sean said:
Calling it "chronic fatigue syndrome CFS/ME" is not a promising start. Might seem a trivial point, but labels matter, especially in this highly politicised area of medicine. NICE, and other institutions around the world and the peer review journals, are increasingly referring to it as ME/CFS. Best to use that.
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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!
 
NelliePledge said:
Is there a protocol document
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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.
 

Attachments

Thanks for the adjustments to your initial post @Dania Ala
Is there a protocol document?
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Yes. I've attached it to this post.
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A study advertisement and a patient information sheet aren't protocols.

I haven't looked closely at the protocol template linked below, but it looks as though it could be useful. The study you are doing has human subjects and definitely carries a risk of causing harm to both the participants and people with ME/CFS more generally if not done well. So, a careful protocol seems warranted.
Qualitative Research Study Protocol Template (Word, 54 KB)
Date and Version No: Insert
Chief Investigator:
Insert name and contact details, including institutional affiliation

Investigators:
Insert names of key collaborators, including institutional affiliations

Sponsor:
University of Oxford/Oxford University Hospitals NHS Foundation Trust (Delete as appropriate)

Funder:
Insert details of organisation providing funding

Chief Investigator Signature:
The approved protocol should be signed by author(s) and/or person(s) authorised to sign the protocol


Please declare any/no potential conflicts of interest.
...


TABLE OF CONTENTS
1. SYNOPSIS
2. ABBREVIATIONS
3. BACKGROUND AND RATIONALE
4. AIM AND OBJECTIVES
5. STUDY DESIGN
6. PARTICIPANT IDENTIFICATION
6.1. Study Participants
6.2. Inclusion Criteria
6.3. Exclusion Criteria
7. STUDY ACTIVITIES
7.1. Recruitment
7.2. Informed Consent
7.3. Screening and Eligibility Assessment
7.4. Subsequent Visits
7.5. Discontinuation/Withdrawal of Participants from Study
7.6. Definition of End of Study
8. ANALYSIS
8.1. Description of Analytical Methods
8.2. The Number of Participants
8.3. Data Analysis
9. DATA MANAGEMENT
9.1. Access to Data
9.2. Data Recording and Record Keeping
10. QUALITY ASSURANCE PROCEDURES
11. ETHICAL AND REGULATORY CONSIDERATIONS
11.1. Declaration of Helsinki
11.2. Guidelines for Good Clinical Practice
11.3. Approvals
11.4. Reporting
11.5. Participant Confidentiality
11.6. Expenses and Benefits
11.7. Other Ethical Considerations
12. FINANCE AND INSURANCE
12.1. Funding
12.2. Insurance
13. PUBLICATION POLICY
14. REFERENCES
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Dania Ala said:
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.
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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?
 
Another thought is that with this kind of study, you should have some involvement of people with ME/CFS in the planning and the review stages at least. I know it's only a Masters project, but, as I said, this is a project with human participants on a sensitive subject and it may well result in a publication. For this type of project these days, I think good research requires co-design. It's the 'nothing about us, without us' idea.

Do you have a panel of young people with ME/CFS to help guide the questions you ask and give you feedback on the accuracy of your interpretation?
 
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