RESEARCH SURVEY: James Lind Alliance: Adults with Fibromyalgia Survey, Have you got the time to take part?

Hi everyone

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

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.

Please complete this survey only one time.

Link to the survey: surveygizmo.com/s3/2057354/...

Wishing you all wellness

Sian

Admin HU FMAUK

PLEASE NOTE: This post is not locked to the Communty and may be shared on Twitter or Facebook

Further Info:

Home Page: Canadian Institutes of Health Research (CIHR)

cihr-irsc.gc.ca/e/193.html

About CIHR Institute of Musculoskeletal Health and Arthritis (IMHA):

" The Institute of Musculoskeletal Health and Arthritis (IMHA) supports research to enhance active living, mobility and movement, and oral health; and addresses causes, prevention, screening, diagnosis, treatment, support systems, and palliation for a wide range of conditions related to bones, joints, muscles, connective tissue, skin and teeth.

Learn more about IMHA " - cihr-irsc.gc.ca/e/8603.html

James Lind Alliance: James Lind Alliance - Adult Fibromyalgia Priority Setting Partnership

cihr-irsc.gc.ca/e/49106.html

[secondhandrose2]

Done. Shame the questions were so very general. I appreciate the benefits of wanting to begin with the needs and wishes of patients but do also think a section with lots of questions created by the researchers and asking people with fibro to comment on them would also have been useful - like triggers for thought, as with fibro fog it is difficult to come up with ideas at the time but impossible to add them later on in the survey. Also a follow up link/e-mail would be helpful.

[Hidden in reply to secondhandrose2]

You can click back and forwards through the pages and take time over it but a save and come back option would be useful for the foggy minded. I didn't answer a couple of the questions and didn't actually notice whether you could save and come back.

This link takes you to the Canadian Institutes of Health Research that is Funding the study. They will post updates here I would imagine

cihr-irsc.gc.ca/e/13217.html

Fluffies and smiles

xxx sian

[lou1065]

I did try to get through this survey as it could be of benefit, may try again later xx

[Hartleyhare2]

I'm afraid I thought that was an awful survey. It was more like an invitation to write an essay! I used to design, collate, validate and give feedback on surveys and questionnaires. I have no idea how they will do that with this format apart from spot any trends.

I am stunned there were no closed questions, no yes or no answers, no tick boxes to those that apply or on a scale of 1 to 10 answers!

I should add that I have attended many University and Proffesional courses on this matter and this is ridiculously vague. My intention is not to be rude but realistic about the value of this exercise.

At the end of the day any research into Fibro even just to raise awareness is good!

Patrick

[Mdaisy in reply to Hartleyhare2]

Hello Hartleyhare,

I have mentioned some of the things you have commented on above in my other reply. Also I wanted to say as this study was kindly found by Zeb73 and was then passed on to us, we cannot help with any explanation about why it was set out the way it was.

If you felt inclined you may wish to contact them directly to express your feedback and they may or may not provide you with a rationale as to why they did not use a format you have described.

If you do please do feed back to us here

Best Wishes

Emma

Community Coordinator

[secondhandrose2 in reply to Hartleyhare2]

I agree - makes you think what the research will actually be like doesn't it. So many US Universities carry out research that has little validity then publish the results as if what they have found is fact! I wouldn't have got through the first year of research methods on my Psychology degree with this questionnaire let alone the 3rd year course.

[Mdaisy]

Hello All,

I am looking at it now and I can understand some comments about the way the survey has been worded with lack of yes/no questions. However, it is allowing you free range & is obviously basing this on your thoughts & experiences as a qualitative study.

It is quite lengthy and much space to provide our answers and I do not doubt that in fact it will take longer than 5-10 mins as estimated. As in life some may find that this is not the survey for them as usually due to time constraints people like easy click surveys! However, personally I am liking the free range and have already suggested the following to the first question; I may be a while as I have also added 6 suggestions too!

6 monthly blood tests post diagnosis for a set number of patients for a set period to review any changes ie: B12, Vitamin D Foliic Acid, iron & B6 deficiencies

I also think how often do they ask us what we feel needs to be better or researched further. I know that if you suggest doesn't mean they will do any such study but it has sown a seed and others may read the results of this survey - thus it circulates and you just never know,

Please remember to not use this as it may affect the survey results as it is supposed to be your opinions only - but as an example I have posted it here.

Best Wishes

Emma

Community Coordinator

[stumpedok in reply to Mdaisy]

Your suggestion chimes in with what I have been doing with my GP in last year ie 6 monthly global blood tests to allow some kind of monitoring for Fibro. ..I have had a tendency to dismiss things over the years as 'all down to my Fibro' meaning if anything had dropped which might be worsening my Fibro I would have been none the wiser that any corrective action might be needed! All part of me attempting to 'actively' manage my Fibro nowadays!

I call these my MOT tests!

[Mdaisy in reply to stumpedok]

Hello Stumpedok,

I do feel these are important as these deficiencies can make Fibro symptoms worse.

This poll here in the community 2 years ago may be of interest;

healthunlocked.com/fibromya...

All the best

Emma

[Hidden]

Hi Everyone

Apologies if it wasn't very clear about the kind of survey this is, which is to collect information not data and why it's not a tick box survey or simple yes/no answers.

The front page of the survey does tell us what they are looking for regarding our thoughts and ideas for future research projects, which can't be recorded using yes/no or tick-box methods of data collection.

Mdaisy has explained it fairly well also above

About this survey:

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 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 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. Like Emma's example above we have discussed it many times on the forum, does this cause that and that cause this??

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!

Any more Questions? just give me or someone a nudge

Apologies for any confusion

xxx sian

[lou1065]

Done xx

[Hartleyhare2]

Dear all!

I was in no way criticising anyone here nor indeed the owners of the survey. It was just my personal tuppence having done a lot of these. The purpose generally is to gather data that can be analysed and worked on. I believe this is so open that will be extremely difficult to do so. I completed it myself but was unsure which page my comments should be on.

I deeply apologise if I offended anyone but it is just my opinion based on past experience. I am sure positivity will come from all those who leave comments.

Patrick

[Mdaisy in reply to Hartleyhare2]

Please do not worry Hartley Hare - no offence taken at all

Just wanted you to know that we passed it on after Zeb73 stumbled upon it & that any feedback to the people conducting the survey would probably be well received. You are right for some with Fibro having no options and big spaces to fill with ideas might be daunting especially with bad Fibro Fog!!

However as you say any survey about field that yields positive results of some kind is of benefit

Best Wishes

Emma

Community Coordinator

[secondhandrose2 in reply to Hartleyhare2]

Me too. I wasn't intending to be critical of the study for no reason nor was I wanting simple tick box questions, but it would have been nice to have had some key words or ideas as prompters for the kinds of issues - an alternate way would have been to have been able to give an e-mail address and for them to send the survey as an attachment, then automatically I would have spent a lot longer thinking about what I thought was important. Doing what I thought was a fairly quick survey meant I hadn't given the matter deep thought beforehand and so the answers they got were a lot more limited than they might have been. That was really the point I was making. For me, they got a few quick thoughts but not the richness of ideas they might have had I had time to think more before replying.

Sue

[Hidden in reply to secondhandrose2]

I do agree with that because key words would have been great for spurring the brain, but I guess that's why they're asking us to tell them LOL

It took me a while to complete it

[secondhandrose2 in reply to Hidden]

Yes, would have been room for both - freedom to express but also sections with lots of prompt words like a brainstorm - probably should have done my own. Not a good idea to complete surveys in the evening by which tired I feel brain dead even if I'm not! The irony is that before fibro I used to write my best essays very late into the night - then re-write them the next day...

[Hidden in reply to secondhandrose2]

brainstorm! that's the word I've been trying to think of all night LOL

I used to do essays like that

I kinda still do work like that too but 4am after my 3.5 hrs sleep.

It's gonna be an early one for me tonight so I'll be back up by 2.30-3.00am nice quiet for thinking and working been up since 4am today haven't had a nap, don't even now how I'm still awake.

LOL

[secondhandrose2 in reply to Hidden]

I've had similar problems with being awake until the early hours of the morning and getting so little sleep. Must be something in the juice we are drinking

[Hidden in reply to secondhandrose2]

heheheeh yeah, possibly right

[rosewine]

I have filled it in and at first was thrown by having no guidance as to where the survey was going but as the questions did not lead me in any particular direction. Suddenly my mind started to "free range" and questions perhaps I had hidden quite deep suddenly started coming up and once my mind started to tick over I could barely stop typing.

[mattoid-mags]

Done, I found myself repeating myself through the questions xx

[tulips123]

I've looked at it, looks interesting. Brain fog not helpful, try again tomorrow. Tulip x

[TheAuthor]

Done and dusted! Thank you my friend x x