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

Hi Dania, I'm too old to participate, but just wanted to comment on this:

Zoom Interviews will be conducted for 30 to 40 minutes with breaks, ensuring the comfort and consideration of participants' symptoms throughout.

Taking breaks during a call doesn't help, in my experience - it just means the whole process takes even longer and gets even more complicated so you end up even more exhausted!

Maybe consider supplying participants with your list of questions beforehand, so that they can look through it at their own pace? Maybe also give them the option to answer in writing, so again they could do that at their own pace? That might help people give answers that properly represent whatever experience they're willing to share, compared to being put on the spot in an interview format (where it's easy enough to say the wrong thing when you're not prepared for a question even if you're fit and well, let alone when you're ill, fatigued and brainfogged!) It would also mean they're able to give a better-informed consent to participate, as they'll have a clearer understanding of what specific topics you're looking at.
 
Hi @Dania Ala welcome to S4 its good to have you here :)
Maybe consider supplying participants with your list of questions beforehand, so that they can look through it at their own pace?
please please please dont just consider it, pls do it. I know i have terrible problems absorbing a question, thinking it through & responding accurately, in real time, even when i'm not nervos or anything, its not anxiety its just my brain works at a snails pace.

Because the ME causes me to have delayed information processing speed. And i'm far from alone in that. So if you want your answers to be accurate you'll need to give a bit of time for the questions to be absorbed.

In addition, I am currently experiencing some considerable personal distress because i was recently asked a series of questions (it was discussing a surgery & the consent form) and i answered as best i could at the time, the nurse was nice & didnt rush me, but because the questions were things i hadnt thought through before hand, i gave some inaccurate answers and i said something that was very misleading about myself, because i was just so foggy i didnt word it correctly & am now quite upset about that.

(by 'correctly' i mean giving an accurate representation of how something affects me). And i'm in my 50s & used to be an educator so previously very experienced in verbal communication, but still i fouled it up & misrepresented myself about something important to me.

I'm concerned about that happening to study participants.

Please give these young people time beforehand to think about what they truly want to say to represent themselves right. They simply will not be able to do that in an interview situation. Having ME is like 'thinking through treacle' people need about 50 times as long, literally, as a healthy person or someone who is 'merely' very tired.

It would be unintentional harm you could cause in terms of the distress of 'oh no, thats not what i meant!!' if you expect them to just respond on the spot. Not to mention issues of getting accurate data.

I appreciate you want people to be authentic, but I feel confident to say for sure that unless they are at the *very* mild end of the spectrum, they wont be able to give all answers they dont later regret or wish they'd said differently, even if you give breaks, simply due to the cognitve difficulties of ME, unless you let them have some time to think it through before hand.

You know what it's like going to a job interview? if you didnt know what sort of questions they would ask you'd likely just blank out, & say the first thing that comes into your head... which you'd likely be squirming about later...

multiply that by 100 & imagine turning up to the interview after taking a strong sedative... & you'll get a rough idea.

That was likely rambling but i dont have strength left to re read & edit now, i hope it makes sense, perhaps someone else can clarify pls
 
oh, @Dania Ala i forgot to say that these videos that @NelliePledge linked to in the quote below
I recommend watching the dialogues videos

https://www.dialogues-mecfs.co.uk/films/severeme/
are really excellent and would help you learn a lot about ME/CFS in a very short space of time. I recommend watching them all, not only the one Nellie linked to. They were funded by the Wellcome Trust, are professionally produced and contain loads of interviews with doctors, scientists, researchers (including psychologists), people with ME/CFS and their families. They're a crash course in ME/CFS & you'll find them highly revealing & useful i'm sure.
 
It's a journey, and I'm taking my first steps to better understand and support those with ME/CFS.
Thank you, and thank you for continuing to engage here.

The research strictly adheres to the ethical guidelines set forth by the British Psychological Society (BPS), ensuring that No participants will be exposed to harm.
I'm sure that those people carrying out other research of this type that has definitely caused harm believed that their work would not expose their participants or the wider community to harm too. And yet it did. I'm not familiar with the BPS ethical guidelines, so I don't know if the problem lies with the guidelines or the researchers' interpretations of them, or both. We haven't seen anything yet about your research that suggests that people (and not just the people who end up participating - e.g. families, the wider community, young people who are subsequently treated with inappropriate interventions) will not be harmed. Simply saying that they won't does not make it true. The outcomes of other similar research suggest that harm is quite likely.

The research approach that you are applying is old-fashioned. I doubt that there are investigations into what it is like to be a young deaf person that don't include deaf people in the study design and implementation. I doubt that there are investigations into what it is like to be a member of a particular ethnic minority in UK society that have not been developed or at least have had input from people from that ethnic minority in roles other than 'participant'. I doubt that there are investigations into what it is like to be a woman in a predominantly male environment that include no women in the research team. If there are, then there probably should not be.

It's a patronising approach that is rightly frowned on these days - 'you tell me what you think it is like to be you, dear, and I'll interpret it through my prejudices and present it to the world'. Maybe it would be helpful to imagine for a bit that your study is in fact a study on what it is like to be a member of a racial or cultural group or a sex that you are part of, and then think about what safeguards should be in place to ensure that your experience would be presented accurately and safely?

One important safeguard is to select participants from a well defined subset of young people with ME/CFS. So, rather than putting a recruitment request out to the world, and greatly increasing the selection screening and the putative representation, you could talk with people from a very well defined group. For example, associated with particular medical practices in a particular city, or members of particular support groups and of particular severities. And then, when you present your findings, it is less likely that it will be assumed they apply to all young people with ME/CFS of all severities, from all backgrounds and regions.
 
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Greetings!

Looking for Recruiting participants:

We are working on a research project which aims to explore the impact of chronic fatigue syndrome ME/CFS on identity construction among young adults aged 18 to 25 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 30-60 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.

If you’re aged 18 to 25 years old and have a confirmed diagnosis of ME/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.




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, there's an excellent thread on this forum re measuring outcomes from interventions* - basically this community is strongly biased/focused towards objective outcomes - actimetry [Fitbit type devices] hours worked/attendance at school, college etc.
One of the problems with your study is that you're dealing with people who have a range of levels of disability:
  • --- unable to finish college --- working a few hours in the voluntary sector when they're well enough ---;
  • entirely bedbound --- needing care;
  • --- able to finish college, work --- but nothing outside that ---;
"identity construction" (don't know what that means) is likely to reflect levy of disability?

Since you can't objectively measure:
  • level of disability(?) i.e. within your project - correct?
  • "identity construction" - correct?
then surely this is subjective and therefore of no objective value?

Surely at best it will say --- if you become disabled then that has an effect on your life, options re work, study --- as per others who have another similarly disabling illness?

*
https://www.s4me.info/threads/which...-for-clinical-trials.29829/page-7#post-451866
 
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But @FMMM1, this is not a clinical trial of an intervention, so subjective versus objective outcomes is not the point here.
I think there's a general point e.g. if you can't objectively measure "identity construction" then I'd suggest that the whole exercise seems pointless (or worse i.e. misleading) - so the general point re ability to (objectively) measure is relevant re this project - "identity construction".
Also, "identity construction" is likely reflective of level of disability e.g. if you can't attend school then presumably there's a likely impact on social development - "identity construction"
Also the project really needs a [other illness] control group - comparable level of disability, social exclusion --- comparison of control group versus ME/CFS. The level of disability of the control and ME/CFS needs to be measured objectively.

I think we're shooting the breeze here - I accept your comment re my post!
 
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.

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?

The research strictly adheres to the ethical guidelines set forth by the British Psychological Society (BPS), ensuring that No participants will be exposed to harm. I have taken comprehensive measures to safeguard the mental and emotional well-being of all participants involved.


While this research has limitations, as with any study, it represents a valuable step towards advancing knowledge in this field.

And as I said before, While some of you might find this research area interesting, I understand that it might not resonate with everyone. That's completely okay, and participation is entirely voluntary.

I have been thinking about this again and have re-read the flyer and information for participants. Neither mentions anything about delving into childhood experiences or family dynamics.

Can I ask again what the point of this study is? Do you have a hypothesis you want to explore, or have some people with ME/CFS asked for this work to be done? Does the department you are studying in run an ME/CFS clinic and do the therapists there want to find out more that will supposedly help them to understand the challenges their patients are facing better?

We have seen some awful examples of therapists assuming childhood trauma is a predisposing factor in ME/CFS, which is completely unfounded.

We have also seen awful examples of ME/CFS doctors accusing parents of FII. Are you aware of any of this, and the fact that some young people being invited into this study have themselves suffered in this way?

There is so much history of misunderstanding and mistreatment of ME/CFS that it seems to me completely inappropriate for an inexperienced student to be inviting young people into such conversations, let alone trying to analyse the results of such conversations using thematic analysis etc.

I would be surprised if an ethics committee thought it was acceptable to invite people to participate with such a brief and incomplete explanation of what is actually going to be asked, and what the purpose of such intrusive questions is.

Finally, can you clarify what you expect to learn from this study, and in what way you envisage it being useful to people with ME/CFS.

It would be really helpful if your supervisor were to join this conversation. We are asking a lot of challenging questions which may be better answered by the supervisor who presumably dreamed up this project. I'd also like to know what sort of studies other masters degrees students are doing at the same time. Is there a particular focus on young people, or on ME/CFS...
 
Edited to add: Cross posted with @Trish

I do have a concern I'd like you consider please @Dania Ala

I'm pointing this out because you seem to be a researcher who is keen to avoid harms to your study cohort, & it may be difficult to envisage how such a harm could occur.
The field of ME/CFS research is littered with spurious conclusions from correlations, often inferring a causal link which is backwards.

For example in very simple terms I'm sure you'd be familiar with, when an association is found between say, depression & anxiety & ME it is assumed a causal link between having depression & devloping ME. When actually it should be obvious to any observer that being very ill, for a long time, will make anyone depressed. So its the ME causing the depression not the other way around.

So with that phenomena in mind...

If the results of your work show that due to developing severe ME as a teen & struggling with it in an ongoing way, being an ME/CFS sufferer becomes part of that person's identity, with those more severely affected having it become a bigger part of their identity, (simply because it has impacted their lives more & is a much bigger part of their day to day experience, & limits/controls their lives more - dictating what they can do in all aspects of life - social educational relationships etc. The more severely impacted & therefore restricted you are the more it is likely to become a significant part of identity as you mature).

I worry that those results could be presented as
'Having 'ME sufferer' as a larger part of a person's identity, is associated with more severe levels of illness'

Which will, in the current climate & context of widespread belief about ME be interpreted as meaning that having ME sufferer as a significant part of your identity is making you more ill. So (often well meaning) psychologists will come along, & think this a helpful target for modification. They will believe themselves to be helping when they give treatment given to young people to assist them in seeing themselves differently - ie not as ME sufferers but as people who have 'struggled with tiredness in the past' or whatever. Which will in effect be unintentional gaslighting - when CBT therapists attempt to 'adjust' the persons thinking that ME is less of a huge part of their lives than reality dictates. Thus interfering with natural identity formation & harming rather than helping.

This is an example of how an unintentional harm can come from the type of study. Confusing correlation with causation is a major flaw in a lot of research, of all flavours. And I trust that you'll want to ensure that your research isnt unintentionally weaponised due to poor wording.

So Please be wholly mindful of this when you report your results. It will be insufficient to simply say 'causal relationships cannot be fully determined', (or some other get out clause) when the wording of the abstract strongly suggests otherwise.
 
Hey everyone,

First off, a huge thank you for all the fantastic insights and advice. Being new to this community, I've learned so much from your contributions. I really wish I'd joined earlier; your perspectives would've been invaluable in shaping my research questions. Even though my research is finalized, I'm definitely taking your ideas on board for future work.

@JemPD, your thoughts on interview questions are spot-on. I'll be sure to use it once I have participants in the study.

@Hutan, thanks for the support and encouragement! I assure you that I'm taking all necessary precautions to minimize any risks associated with the research.

@Trish, I appreciate your interest and contribution to this post.

And I am happy to answer your questions.

The point of this study is to explore and understand the impact of Chronic Fatigue Syndrome (CFS) on the identity formation of young adults aged 18 to 25. The study aims to investigate how CFS affects their self-perception, interpersonal relationships, and overall sense of identity during this crucial developmental phase.

The study is exploratory in nature in terms of a hypothesis, aiming to generate insights and understandings rather than testing a specific hypothesis. The research questions guide the inquiry into the experiences of young adults with CFS, seeking to uncover themes and patterns that can deepen our understanding of their lived experiences. The study aims to contribute to the existing body of knowledge on CFS by exploring its impact on identity formation in young adults, with the potential to inform and enhance support, care, and understanding for individuals with the condition.

As for the motivation behind the study, it's part of my research project for my master's degree. I have a lot of interest in ME/CFS and wanted to explore it in depth ( but now I know reading from the literature is not enough); and there is no involvement of therapists or clinics.



I am struggling with participant recruitment for the study; any assistance with recruitment would be greatly appreciated.

Thank you!
 
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It's good to see you are willing to learn and open to hearing different views. I note you say you have a lot of interest in ME/CFS. I think you have indicated you are interested in working further on ME/CFS after you complete your Masters' degree. If that's the case, I hope you will continue to read and participate in this forum and look for other avenues for learning more about ME/CFS.

If you want to work with people with ME/CFS as a psychologist, I suggest you could spend some time first working for a care agency specifically to work as a carer for people with severe ME/CFS. Spending some time learning up close what life is like for people with severe ME/CFS could, I think, be a great learning experience for therapists.
 
Thank you, and thank you for continuing to engage here.


I'm sure that those people carrying out other research of this type that has definitely caused harm believed that their work would not expose their participants or the wider community to harm too. And yet it did. I'm not familiar with the BPS ethical guidelines, so I don't know if the problem lies with the guidelines or the researchers' interpretations of them, or both. We haven't seen anything yet about your research that suggests that people (and not just the people who end up participating - e.g. families, the wider community, young people who are subsequently treated with inappropriate interventions) will not be harmed. Simply saying that they won't does not make it true. The outcomes of other similar research suggest that harm is quite likely.

The research approach that you are applying is old-fashioned. I doubt that there are investigations into what it is like to be a young deaf person that don't include deaf people in the study design and implementation. I doubt that there are investigations into what it is like to be a member of a particular ethnic minority in UK society that have not been developed or at least have had input from people from that ethnic minority in roles other than 'participant'. I doubt that there are investigations into what it is like to be a woman in a predominantly male environment that include no women in the research team. If there are, then there probably should not be.

It's a patronising approach that is rightly frowned on these days - 'you tell me what you think it is like to be you, dear, and I'll interpret it through my prejudices and present it to the world'. Maybe it would be helpful to imagine for a bit that your study is in fact a study on what it is like to be a member of a racial or cultural group or a sex that you are part of, and then think about what safeguards should be in place to ensure that your experience would be presented accurately and safely?

One important safeguard is to select participants from a well defined subset of young people with ME/CFS. So, rather than putting a recruitment request out to the world, and greatly increasing the selection screening and the putative representation, you could talk with people from a very well defined group. For example, associated with particular medical practices in a particular city, or members of particular support groups and of particular severities. And then, when you present your findings, it is less likely that it will be assumed they apply to all young people with ME/CFS of all severities, from all backgrounds and regions.


Thank you, @Hutan, for your thoughtful insights and concerns. I genuinely appreciate your engagement and willingness to share your perspective.

I strongly agree with your points about the importance of involving the ME/CFS community directly in research. The insights I've gained here have highlighted gaps that the literature may not fully capture, emphasising the necessity of direct community involvement in shaping and conducting research.

Regarding the interview process, I recognise the challenges individuals with ME/CFS may face in holding lengthy conversations. Taking @JemPD's advice, I'm considering providing interview questions beforehand to facilitate more comfortable and manageable participation for those interested.

I appreciate your suggestion about recruiting participants from well-defined subsets, such as specific medical practices or support groups. This helps ensure that the findings are representative and applicable to the targeted group of young adults with ME/CFS.

The primary goal of my research was to identify and address gaps in the existing literature concerning ME/CFS, mainly focusing on young adults. I aim to contribute meaningful insights to enhance understanding and support for this group.

Your feedback is invaluable, and I'm committed to refining my approach to align with ethical considerations and community needs. I'll continue to seek guidance and feedback as I progress with my research.
 
It's good to see you are willing to learn and open to hearing different views. I note you say you have a lot of interest in ME/CFS. I think you have indicated you are interested in working further on ME/CFS after you complete your Masters' degree. If that's the case, I hope you will continue to read and participate in this forum and look for other avenues for learning more about ME/CFS.

If you want to work with people with ME/CFS as a psychologist, I suggest you could spend some time first working for a care agency specifically to work as a carer for people with severe ME/CFS. Spending some time learning up close what life is like for people with severe ME/CFS could, I think, be a great learning experience for therapists.


@Trish


I really can not thank you enough for your advice and encouragement.

The idea of working as a carer for people with severe ME/CFS sounds like a great way to truly understand the challenges and experiences faced by those with the condition. It's definitely something I'll consider as I continue my journey in this field.

I'm all about learning, so I'm excited to keep diving into this topic. Being part of this forum has already been eye-opening, and I'm eager to learn even more about ME/CFS beyond my academic studies.

Thanks again for your support and suggestions. I really appreciate it!
 
My two cents.

Young people with ME/CFS need to be allowed to have an identity that includes having a chronic illness. It's a part of who they are.

They need to be supported in developing a positive image of themselves as a person with a disability.

They also need to supported in maintaining and developing social skills and to make new experiences and experience different contexts (don't focus on education to the exclusion of everything else).

Failing to do this will destroy their self-esteem and connection with the world.

Also psychologization of ME/CFS is harmful. The problem is that it creates this expectation that patients can control the illness. If this is not actually true, you're setting the person on a path where they can only fail every attempt to improve their situation, and eventually lose all confidence.
 
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Thanks for the added information Dania Ala.
I do feel somewhat reassured after reading the attached files. My sense from them is that the primary assumption is that the disease and societal attitudes towards it affect young people's experience of the transition to adulthood. As opposed to an underlying assumption that childhood experiences and personality flaws cause the disease and that this research aims to find evidence to support that view. Is that correct @Dania Ala?

Background
Given the profound chronicity, ambiguity, and uncertainty of CFS, patients with this condition endure significant suffering. As Fennel et al. (2021) posit, the suffering results from the devastating physical symptoms, couple with ongoing trauma, grief, loss, and stigma. Other studies have also linked CFS with stigma and other casual attributions, such as the struggle to maintain a coherent sense of identity.
I didn't quite understand that last sentence though. With that reference to 'causal attributions', what is assumed to cause what? Will 'a struggle to maintain a coherent sense of identity' be evaluated as a cause of ME/CFS?

Past research, particularly examining 499 participants with self-diagnosed CFS, revealed a compelling link between perceived stigma and the perception of others' causal attributions (Froehlich et al., 2021). Studies have highlighted the psychological and emotional toll of living with a chronic and largely invisible illness. They emphasize themes of social isolation, stigma, and the struggle to maintain a coherent sense of self-identity especially in adolescents (Haines et al., 2019).
The theoretical approach to this research will draw from developmental psychology, focusing on Erik Erikson's theory of psychosocial development. Erikson posits that adolescence to early adulthood marks the stage where individuals grapple with identity versus role confusion (Branje et al., 2021). Understanding how young individuals with CFS navigate this crucial stage of identity development is essential for their psychological well-being. The present study will also utilize theories such as Positioning Theory, Social Learning Theory, and Social Constructionism Theory to explore how societal perceptions and internalized views influence their self-identity.
I doubt that the highlighted sentence is true - "essential" sets a very high bar for relevance. For thousands and thousands of years, most people muddle through from adolescence to adulthood, with the transition largely unobserved and ignored by science, and with the presence or absence of any formal understanding of the process having minimal impact on their psychological wellbeing.

Reflexive Thematic Analysis, building upon Braun and Clarke's approach, will be employed to systematically analyse and interpret the qualitative data gathered from these interviews. Additionally, Kathy Charmaz's work on "Loss of Self" in chronically ill individuals will guide the analysis, providing a framework to comprehend the impact of CFS on identity construction (Charmaz, 1983). In conclusion, this study aims to fill a significant gap in the current understanding of how young adults with CFS navigate identity formation during a critical developmental phase. The findings could have important implications for improving the psychological well-being of individuals with CFS.

Protocol
The main issue of note I think is the aim to do 7 to 10 interviews, probably mainly of UK university student volunteers. As I've commented before, it's really important to be aware of the limited understanding that this small self-selected sample will provide, and to not extrapolate it to all young people with ME/CFS.
The present study is a qualitative research study aiming to understand the experiences of young adults aged over 18 to 25 years old diagnosed with CFS. The study aims to explore the influence of CFS on the formation of identity during the critical transition stage to adulthood for the participants. The study also 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.

3. Describe any possible negative consequences of participation in the research along with the ways in which these consequences will be limited.
The list of negative consequences does not include the possible impacts on family, or on the ME/CFS community, should the conclusions made by someone without substantial knowledge of ME/CFS from a highly selected sample of 7 to 10 interviewees turn out to be wrong.

The researcher will send an email with debrief form (Appendix D) that provides the participants with further details regarding the purpose and aims of the study.
....The debrief form will be sent via email after conducting the Zoom interview (Appendix D), which provides clear details on the participant's right to withdraw from the study, and where to seek help if they felt too stressed or emotionally disturbed, reiterated multiple times during key stages of the research.

Furthermore, the researcher will ensure that participants have access to appropriate support services, including mental health resources, support groups, and medical professionals who specializes in CFS during the study and after by sending an email with the debrief form.

Dania, what information on the purpose and aims of the study do you expect the debrief form to contain that the information provided before the interview will not? Can we see Appendix D? Have you contacted the patient charities you list to confirm that they can actually provide timely support to anyone feeling in need of such support after the interview? I know some members have found that it is very hard to access support. What medical professionals who specialise in CFS will participants have access to during and after the study?


A suggestion for you. You could invite your participants to have a zoom call with you after you have drafted but not finalised your dissertation - a group call where you present the results of your study. It would be a way of being accountable, and double-checking that you have got things right. You could ask them to discuss their participation in your study - what was interesting, what could have been done better.

Again, thanks for responding so constructively to our comments. I hope your study goes well and is a useful experience.
 
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Dania,

Can you please tell me which paper this is from?

"Other studies have also linked CFS with stigma and other casual attributions, such as the struggle to maintain a coherent sense of identity".

It's the last bit I would like to know about.

I was once in your target age group and with ME. The last thing I was concerned about was my sense of identity. At that stage I was so very sick but at the same time unaware that this would be long term for me.
 
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