None listed
Conditions
Brief summary
This is a study to determine if the FUNCAP 27 can be used as an instantaneous measure of perceived functional capacity in those with ME/CFS and Long Covid when at baseline and in a state of PEM(Post Exertional Malaise). We are doing this to establish a measure that can detect short term fluctuations in health that will be used in later interventional clinical trials. We aim to recruit 1000 participants for 2 questionnaires and 1 enrolment survey taking 6-20 minutes at enrolment (including reading the consent forms), 15-35 minutes when well and 10 -20 minutes in PEM. The questionnaire can be completed with the aid of a carer and paused for completion at a later time.
Interventions
The current FUNCAP 27 has established validation at 4 week intervals. We wish to determine if this questionnaire is useful as a reliable, instantaneous and repeatable measure of perceived functional energy utilisation and consequence capacity.
Assessment will take place over 2 situations. The first questionnaire will be completed when experiencing PEM (post exertional malaise) while the second will be completed once returned to baseline level of health and function.
This project should take b
The current FUNCAP 27 has established validation at 4 week intervals. We wish to determine if this questionnaire is useful as a reliable, instantaneous and repeatable measure of perceived functional energy utilisation and consequence capacity. Assessment will take place over 2 situations. The first questionnaire will be completed when experiencing PEM (post exertional malaise) while the second will be completed once returned to baseline level of health and function. This project should take between 30 minutes and 1 hour 20 minutes in total and is comprised of 16 questions at enrolment, 48 questions when in crash or PEM (post exertional malaise) state and 71 questions on the follow up recovered (when well) questionnaire. Participation in this project involves completing an enrolment questionnaire followed by a modified version of the FUNCAP 27 to reflect the measurement of perceived functional capacity, questions about your social and medical circumstances. Questionnaires will be delivered electronically via REDCap software and can be completed by smart phone, tablet or computer. We aim to recruit 1000 participants for this study and encourage the use of carers to assist in completion of the questionnaire. We are hoping to collect answers from all participants over 6 months
Sponsors
The University of Melbourne
Eligibility
Sex/Gender
All
Age
18 Years to 70 Years
Healthy volunteers
No
Inclusion criteria
An existing diagnosis of ME/CFS and/or Long Covid
Exclusion criteria
1. English language not considered to be at a proficient level 2. Not meeting all aspects of the NICE guidelines as below: a. Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest. b. Post-exertional malaise after activity in which the worsening of symptoms: is often delayed in onset by hours or days, is disproportionate to the activity, and has a prolonged recovery time that may last hours, day or weeks. c. Unrefreshing sleep and sleep disturbance (or both), which may include: feeling exhausted, feeling flu-like and stiff on waking, broken or shallow sleep, altered sleep pattern or hypersomnia (increased sleepiness affecting performance and function) d. Cognitive difficulties (sometimes described as 'brain fog'), which may include: problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
Outcome results
None listed