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

Even if the organisations gave permission, it's still not really adequate. Prising open difficult emotional issues and just walking away should always be avoided, especially with young, sick people.

Safeguarding means taking precautions to ensure the safety and wellbeing of participants, and setting out the steps to take if something goes wrong. It would need a meaningful assessment of the methods, ethics, and risks, and the capacity to signpost participants to meaningful (and available) support if necessary.

 

As one would hope psychologists would be particularly aware of.

 

Thanks for all the replies, and I do appreciate your input.

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.


I would also like to mention that this research has received approval from the university's ethical committee, BPS, and complies with the General Data Protection Act (GDPR).

This forum aims to be a safe and inclusive space for all members, including those who are new here.

Participation in this study is entirely voluntary. While some individuals may find this research area intriguing, others may not share the same level of interest due to its specialized nature. But if you find it interesting or have any thoughts to share, I'd love to hear from you.

Let's keep the conversation positive and constructive.

 

I think it would be important to mention in this study that you are already self selecting a cohort of less severe ME/CFS patients. For many people with severe ME, or even moderate, participating in a long conversation on potentially emotional topics is not possible due to Post-exertional malaise. A lot of authors fail to note this bias their studies may have so it would be great if you included a mention.

Also thank you for taking the time to get feedback from the community. This is very valuable to both your research and to us.

 

Thank you so much for your feedback! A valid point has been raised about the potential bias in my study due to the self-selection of less severe ME/CFS patients.

I understand the concerns about the challenges posed by Post-exertional malaise for individuals with more severe ME/CFS. Measures are being taken in my research to accommodate participants with varying degrees of severity. Zoom Interviews will be conducted for 30 to 40 minutes with breaks, ensuring the comfort and consideration of participants' symptoms throughout.

I'll definitely make sure to include this aspect in my study to ensure a more accurate representation of the ME/CFS community.

Thanks again for sharing your insights!

 

Interviews of 30 - 60 minutes, even with breaks, will exclude most severely sick ME sufferers. You sound over confident in your study design, and under informed about ME.

Your university's ethical committee and The British Psychological Society are not the experts on ME.

I would like to see the protocol too.

 

Yes, just so you know: many of the most severe sufferers, of ME, are unable to hold a conversation at all.

 

I appreciate your perspective and understand your concerns about my confidence and level of knowledge regarding ME/CFS.

I want to acknowledge that I'm still learning and open to understanding more about the complexities of ME/CFS.

I'll make sure to continue educating myself and considering different viewpoints as I progress in this area of research.

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.

Thanks.

 

You might benefit from reading the NICE guidelines. Specifically section 1.17 to give you an idea on severe ME.

https://www.nice.org.uk/guidance/ng...e-for-people-with-severe-or-very-severe-mecfs

 

I understand how challenging it can be for people with ME to engage in conversations.

Your insight is invaluable and helps me better understand the diverse experiences within the ME community.

I'm listening and learning to be more understanding in my research.

 

@Dania Ala Sorry, but you keep missing or avoiding the points we make. You keep reassuring the members here who have commented on your proposed study, but apart from correcting the name of the illness you don't appear to have taken much on board. We don't require reassurance. We require you to post the study protocol and respond to the concerns raised here. The reassurance just comes across as evasiveness, or that you think you know better than us.

Some pwME on this forum have long (decades) experience of being asked to take part in psychology students' research, in particular Health Psychology Students. The studies almost always suffer from preconceptions that are harmful to ME sufferers, and it's never clear *exactly* how the study will help ME patients.

Yet it is not clear that you are well enough informed about the disease ME to design a study on it.

Do you not think it would have been wiser to *fully* inform yourself about the illness before deciding to study it? Certainly before designing your study.

The people you seek to recruit are young, sick with a disease that is medically and socially neglected and subjected to medical and society stigmatisation/prejudice. So by definition they are vulnerable on multiple counts.

.

 

And some people with ME are psychologists, there may be some on this forum, along with psychology graduates.

 

@Dania Ala,

As the patient members have pointed out, we need a protocol.
Also, your attempt to reassure on the basis that it conforms to BOS guidelines seems naive and is likely to raise a smile with many members.

Everyone is trying to be constructive and positive in the sense of encouraging you to learn from the forum. Your comment sounds a bit precious to be honest. What is not appropriate is to expect positive comment about the quality of a bad or inappropriate study.

There is no way that you can ensure no harm occurs.

The members here know an awful lot more about psychology and ME/CFS than most psychologists and health care professionals working on ME/CFS. They also know a huge amount about bad research methodology.

You might do well to read Psychology in Crisis by Professor Brain Hughes - who has a special interest in ME/CFS. In simple terms BPS = bad methodology. If you can show that your protocol is rather better that would be positive and constructive.

 

@Trish

I can only imagine how tough it must be even to manage short conversations with ME/CFS.

You clearly understand ME deeply; I'm so grateful for your openness, engagement, warm welcome and wealth of knowledge from the community members here.

It's a journey, and I'm taking my first steps to better understand and support those with ME/CFS.