Hi everyone

Here’s an opportunity to help the direction of future research studies into the ‘Priorities of Adults with Fibromyalgia.’

This text is taken from the James Lind Alliance: Adults with Fibromyalgia Survey this explains the basic details of the study that can be found on the link given below:

‘The CIHR Institute of Musculoskeletal Health and Arthritis (IMHA) located at the University of Manitoba is funding a research project to help improve the treatment and quality of life of people with fibromyalgia. Responses to this survey will be used to identify the top research priorities of patients, caregivers and clinicians in the area of fibromyalgia. This study is being led by a steering committee which is made up of patients, caregivers, doctors, researchers, and staff members from CIHR IMHA, and a collaborator from the James Lind Alliance.

With this survey, we are inviting you to share your ideas about research to help improve the treatment and quality of life of people living with fibromyalgia. This survey has been approved by the University of Manitoba’s Health Research Ethics Board and will take about 5 to 10 minutes to complete.’

Study Title: Determining the Research Priorities of Adults with Fibromyalgia, their Caregivers and Clinicians: A Priority Setting Partnership for Fibromyalgia

Who may take this survey?

To take part in this study, you must be 18 years of age or older and must be included in at least one of the following categories:

1) Person who has been diagnosed with fibromyalgia;
2) Caregiver (e.g., a spouse, relative or friend) of a person who has been diagnosed with fibromyalgia;
3) Clinician or health care worker who cares for people with fibromyalgia (e.g., nurses, social workers, physicians, pharmacists, physiotherapists, etc.)

If you do not fit into any of these three categories, please do not complete this survey.

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Please complete this survey only one time.

Link to the survey:  via James Lind Alliance: Adults with Fibromyalgia Survey.

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A little more about this survey and a few of my own personal viewpoints:

This is a qualitative survey as they are looking for our thoughts and ideas for future fibro research. ‘The CIHR Institute of Musculoskeletal Health and Arthritis (IMHA) is funding research and we are being asked to put forward what research we’d like.

It is a marketing tool where numbers and figures aren’t important as it’s collecting specific information which can’t be Quantified like it can with tick-box or multiple choice surveys.

I didn’t answer all the questions and I didn’t write a lot either because I’d answered a lot of them on the first question already. It did take me longer than 10 minutes because the fog was interrupting but I didn’t find it terribly taxing.

I do personally think click and save so that we can come back to it would have been great but not a serious problem.

I do think click and save so that we can come back to it would have been great

We are constantly shouting about people not noticing us because Fibro is am invisible illness and here we are with the opportunity to help mould some new research into fibromyalgia. These kinds of opportunities don’t come along very often for us to give our ideas to the professionals themselves.

This is a fantastic way to raise awareness of #fibro #chronicillness #invisibleillness #Me/CFS plus any other similar illnesses.

Now is the chance to tell the researchers what you’d personally like to see being researched.
Now is also the chance to plant the seeds that may get you your answers

You just never know!

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Further Info:

Home Page:  Canadian Institutes of Health Research  (CIHR)

Wishing you all wellness

Sian 🙂