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Pilot survey for attention and concentration study

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I am doing some research with King's College London into the attention and concentration difficulties that many people with CFS/ME experience. This research aims to understand these issues further by developing neurological tasks which assess attention and concentration.

...

Here's the link to the survey: https://www.survey.bris.ac.uk/kcl/cfs_me

Your participation would be greatly appreciated!

From the survey explanation:
The first set of questions are diagnostic criteria for CFS/ME, which are mandatory questions, but the rest of the questions are optional.

You will be asked to rate a list of words in terms of how personally emotive or distressing you feel they are. I.e. the degree to which the word brings to mind an unpleasant or distressing emotion related to your CFS.

My underlining.

Although I am familiar with multiple diagnostic criteria which are in active use, as well as some which have passed out of use, I am not familiar with a diagnostic criteria for either CFS or ME which involves distress or emotions to specific associations.

(Although I know of one which, along with pathological muscle weakness after exertion, does recognize a general "emotional liability", a wording which indicates a neurological problem and would be similar to emotional disturbances experienced in traumatic brain injury, multiple sclerosis, stroke, Parkinson's, complex migraine, seizure disorders, etc., but this does not seem related to what you are doing here.)

Can you please explain what diagnostic criteria you are using?
 
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@ME/CFS Researcher

Generally, researchers ask permission from the Phoenix Rising staff prior to asking members to engage in research.

Could you please answer the questions our members have posed RE: who is on the research team, who is funding the study, and who are you and what is your interest in ME/CFS.

Could you also respond to what member's have said.

I would suggest that members wait until ME/CFS Researcher has given us more information before completing the survey.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Can you please explain what diagnostic criteria you are using?

ps, I checked and I see you asked about Fukuda symptoms, but you did not ask about a doctor diagnosis or whether other diseases had been ruled out.

Studies lacking clinical diagnosis have been shown to result in higher heterogeneity of prevalence rate [1], likely indicating high rates of missed diagnoses [2].

1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3616604/
The current meta-analysis particularly illustrates that prevalence is more consistent across samples when clinical assessment is involved. Therefore, it is recommended that studies combine the use of a standard case definition with clinical verification of symptoms.

More specific definitions are now available, such as the recently released International Consensus definition.32 Their use to assess prevalence should also help produce more reliable estimates in the future.

2. http://www.ncbi.nlm.nih.gov/pubmed/21132135
This service evaluation examined the proportion of those referred to a specialist CFS service fulfilling the Fukuda diagnostic criteria for CFS and the alternative fatigue-associated diagnoses. The CFS database was interrogated to include every patient referred to the Newcastle service from November 2008 to December 2009.

All medical notes were reviewed and the diagnosis, sex and age recorded. Data were compared to a previous service evaluation (2005-07).

In 2008-09, 260 subjects were referred: 19 referrals per month (260/14), compared with 17 referrals per month in 2005-07 (375/24). The proportion of patients diagnosed with CFS increased significantly compared with 2007 (36% [20/56] vs 60% [157/260]; p < 0.0001).

Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses); 20% had primary sleep disorders, 15% psychological/psychiatric illnesses and 4% a cardiovascular disorder. Thirteen per cent remained unexplained (5.2% of the total referrals).
 

ukxmrv

Senior Member
Messages
4,413
Location
London
If this is the same researcher that posted to another internet forum then s/he claims to also have a sister with ME .....
 
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