Open Comparing fatigue profiles between individuals with Acquired Brain Injury and Chronic Fatigue Syndrome, 2025, University of East Anglia (survey)

Kiristar

Kiristar

Senior Member (Voting Rights)
Not an endorsement - I have no connection to the project, but thought it may be of interest to folks....
SPOILER - it doesn't mention PEM/PESE..

"RESEARCH PARTICIPANTS NEEDED – Fatigue in CFS/ME and Brain Injury

I am currently recruiting participants for my doctoral thesis in Clinical Psychology at the University of East Anglia. I am in search of individuals who have been diagnosed with Chronic Fatigue Syndrome (ME/CFS), or are living with an Acquired Brain Injury (ABI). This study has received full ethical approval.

This study explores how fatigue presents in people with either ME/CFS or an ABI– and whether symptoms of fatigue might differ across these two groups.

What’s involved?
* A short, online survey (takes about 10–15 minutes)
* Questions about your experience of fatigue, mood, and other demographics
* Your responses are completely anonymous
* As a thank you, you can opt in to enter a £20 Amazon voucher prize draw

Who can take part?
* UK-based adults (18+)
* Diagnosed by a medical professional with either ME/CFS or ABI (e.g., stroke, traumatic brain injury, encephalitis, aneurysm)- if you also have a diagnosis of long COVID, you can still take part!

Why take part?
* Help improve understanding of fatigue and how it affects different conditions
* Contribute to research that could inform more tailored support for those living with fatigue
* Be part of a growing conversation about invisible illness and recovery

Interested? You can find more info in the poster, or take part here:

app.onlinesurveys.jisc.ac.uk

Comparing fatigue profiles between individuals with Acquired Brain Injury and Chronic Fatigue Syndrome

Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, online surveys is used by over 300 different organisations in the UK...
app.onlinesurveys.jisc.ac.uk app.onlinesurveys.jisc.ac.uk

If you have any questions or would like more details, feel free to get in touch: s.umarji@uea.ac.uk

Thank you so much for supporting this research!
 
3. Why are we doing this study?

Fatigue is common in lots of health problems. There are lots of symptoms of fatigue – it can make people feel tired, affect their concentration, give them flu-like symptoms, make them feel achy, and more. Two people’s experiences of fatigue could be very different, and yet we use the same word and approach their treatment in the same way.

Different health conditions seem to describe fatigue in different ways. We are not sure why this is, but it makes us wonder if the symptoms of fatigue might vary across health conditions. If so, this could help us develop more personalised treatments.

We want to see if some of these symptoms are more common in one group, and other symptoms more common in the other group. In other words, we want to see if the ‘profile’ of fatigue might be different.

There are lots of different conditions that cause fatigue. For now, we are focusing on ME/CFS and people with a brain injury because these are two of the most common causes.
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I don’t understand how this study is going to add any value at all. It also does not seem like they have a very good understanding of what ME/CFS is.
 
Some info on the supervisors:

Josh Blake is the lead investigator of this:
Improving anxiety assessment in Stroke and Acquired Brain injury: the validation of the Anxiety Intensity Scale Circles (AISCs), the Yale-anxiety, and Natural Language Processing (NLP) models

Sarah Reeve has done no work on ME/CFS or brain injuries. She has mostly focused on sleep:
 
I wouldn't go anywhere near this one. Usually psychology questionnaire approach to try and undermine ME patients. The slower they gain participants and the less they have the better for us all.

The South East seems to be a hotbed for this sort of bad studies and mistreatment of ME patients. From all the Royal Colleges in London, Keele and Anglia Universities and the complete lack of services in Essex and Kent with ICB boards refusing to provide stats to government on sufferers. Its just a hotbed of (B)PS thinking on the disease.
 
BrightCandle said:
I wouldn't go anywhere near this one. Usually psychology questionnaire approach to try and undermine ME patients. The slower they gain participants and the less they have the better for us all.

The South East seems to be a hotbed for this sort of bad studies and mistreatment of ME patients. From all the Royal Colleges in London, Keele and Anglia Universities and the complete lack of services in Essex and Kent with ICB boards refusing to provide stats to government on sufferers. Its just a hotbed of (B)PS thinking on the disease.
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Thanks. I had thought it might be OK because it was from at the same university as Invest for ME and Quadram institute are based at and because the comparator was ABI rather than fibromyalgia etc.
 
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