Closed UK: Research on how young adults (aged 16-24) with ME/CFS talk about their identity (Emma Williams, Final year trainee counselling psychologist)

Dolphin

Senior Member (Voting Rights)
Emma Williams - UoM ME/CFS researcher
@MECFSatUoM

Final year trainee counselling psychologist at The University of Manchester. Researching how young adults (aged 16-24) with ME/CFS talk about their identity


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Anyone know anything more about her and/or this project and whether this might be worth highlighting more widely?
 
I know some people are going to criticise the project, but it is worth researching - I still don't have a defined/comfortable identity and I was ill before I was 16.

I agree this is an important topic. I was in my 30s when my ME started and I had completed my education, had a career and developed a friendship circle. I am very grateful for the opportunities I had pre ME and know how different I would have been as a person had my onset been significantly earlier.

However, without more information it is hard to know if such research would progress our understanding and management of ME or cause more problems for young people with ME. It depends very much on the researcher. This reads potentially positive, but I delayed commenting in the hope that someone might know more.
 
Her later tweets don't sound v encouraging.

Emma Williams - UoM ME/CFS researcher
@MECFSatUoM

·
17 Jul

Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome or ME/CFS, is chronic, fluctuating condition with a wide range of symptoms. The most common symptom is extreme tiredness ME/CFS affects the individual's ability to recover after expending energy (even a small amount)

Hi, I'm Emma, a final year counselling psychology student conducting research into ME/CFS in young adults. Am super passionate about ME/CFS and have the privilege of working with individuals with ME/CFS day-to-day in the NHS
 
There's a nice tweet in reply by Anil noting that ME/CFS is not chronic fatigue. Can someone invite Emma here? She clearly means well, but could use some more information (especially given she works 'day-to-day' with people with ME/CFS in the NHS).
 
@Joan Crawford posted the following to the Sheffield ME and Fibromyalgia Group’s Facebook page:

Dear Joan

I’m emailing since I found your contact details the on the ME Association website. I understand you’re involved in the Chester and Wirral Area ME self-help group.

I’m a Trainee Counselling Psychologist in my final year on the The University of Manchester’s Doctorate in Counselling Psychology. I have several years’ experience working with individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and am currently on placement at Salford Royal’s Chronic Fatigue Service. I love working in this area and am passionate about supporting and advocating for individuals with ME/CFS.

My doctoral thesis focuses on how young adults (aged 16-24) with ME/CFS talk about their identity. Adolescence/young adulthood is time of change. Often individuals are independent for the first time and identity is formed and re-formed. I’m interested in how individuals with ME/CFS manage all this whilst also living with a chronic condition.

I’m recruiting individuals aged 16 to 24 to take part in my research. All individuals who take part must have experience of living with ME/CFS. A formal diagnosis isn’t required just experience of the condition. Participation involves a single Zoom meeting with myself. The meeting is split into two: first an initial screen where we’ll discuss research rights and issues of confidentiality and risk. I’ll ask about my participant's current emotional wellbeing and fatigue levels. Next will be the research interview. This will be recorded onto my computer and I'll ask individuals about their experience of ME/CFS. Screening and research interview should last no longer than 90 minutes.

I’m afraid there’s no financial compensation for taking part in the research, just the knowledge that you’ll be contributing towards valuable and much needed research. I’ve attached a participant information sheet where you’ll find further information regarding the research, if you need it.

I’d be more than happy to come to one of your group meetings and talk more about this research. Just let me know a date and time that’s convenient for you.

If you have any questions or queries please feel free to get in touch.

Thanks very much and best wishes

Emma

Emma Williams
Trainee Counselling Psychologist

Doctorate in Counselling Psychology
The University of Manchester

See https://www.facebook.com/groups/1463401580612062 (Sorry I could not work out how to link to the post itself, so you need to scroll down to a couple of days ago on the group page. Emma William’s contact details are in the original post.)

[edited to remove Emma William’s email and phone number because I was not sure if it is appropriate for me to share it]
 
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There's a nice tweet in reply by Anil noting that ME/CFS is not chronic fatigue. Can someone invite Emma here? She clearly means well, but could use some more information (especially given she works 'day-to-day' with people with ME/CFS in the NHS).

Hi Hutan,
I've been in touch with her and chatted with her about her work. I have mentioned this forum along with sources of history etc.
Bw
Joan
 
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