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

If there is a concern that making protocol available might cause harm (?) then maybe that is even more of a reason to make it available.

 

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

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

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

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.

 

does this have transcripts? i would like to send the link to my doctor in the hopes that she might glance at it, as i am in an extremely dangerous position with her for reasons i do not understand. but i have no speakers.

 

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

 

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!

 

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.

 

brief article about this here Article The Times 'Parents accused of faking their child's Long Covid' (talks about FII accusations in ME/CFS) | Science for ME (s4me.info)

 

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!

 

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.

 

@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.

 

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.