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Online questionnaire

Thursday 2 April 2009

University of Sussex at Brighton Aoife Tobin, a student at the University of Sussex at Brighton in the UK, is conducting a survey on language problems in people with ME/CFS for her final year dissertation.

Here’s a letter of introduction by Aoife’s supervisor, Lynne Cahill:


“University of Sussex at Brighton
Department of English
Arts B158
University of Sussex
Falmer, Brighton BN1 9QN

10th March 2009

To Whom It May Concern:

Aoife Tobin is a final year student in the B.A. in the Linguistics program at the University of Sussex under my supervision, planning a dissertation on language deficits in ME sufferers. She is interested in asking ME sufferers to complete an online questionnaire. We would be most grateful if you could help her.

Please feel free to contact me if you have any questions or concerns about Aoife or her project. I'd be happy to help you.

Yours sincerely,

Lynne Cahill, Ph.D.
Tutorial Fellow in Linguistics and English Language

Telephone: (01273) 678975
Fax: (01273) 625972


PDFDownload this letter (PDF, 88KB)


The questionnaire can be found at:

Questionnaire A - ME/CFS

Aoife has provided us with more details:

“I am doing research into the extent and impact of verbal memory and language processing problems for people with ME/ICD-CFS.

In my research I want to collate and analyse self-reported information from people with ME, and perhaps comparing to more common or more analysed forms of aphasia and language processing difficulties. What I've seen so far has similarities in presentation to Broca’s aphasia, for example, which can be caused by damage to the basal ganglia; interestingly, the basal ganglia have been found to be inflamed or swollen in some people with ME.

I would like to see how commonly reported verbal memory and language processing problems are people with ME; in what situations they forget words, and ask what types of words they tend to forget (is it, as I suspect, usually naming-words that go missing from the individual's lexicon), whether they confuse words, and what nature of confusion occurs (similar sounding words, similar meaning words, substituting antonyms instead of the word they want).

It would be helpful if people could report actual examples of aphasia experiences, and I would also be interested in hearing about what coping strategies patients are developing (describing the object instead of using the name, using near-synonyms for the word, using fillers like 'thingy' and 'whatsit', using a different language). I would also appreciate additional details of this symptom to be sent to me by patients answering the questionnaire, for instance if they have had personal educational psychologist reports into their verbal memory problems, it would be useful to see the reports (voluntarily and with personal data anonymised).”



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