Neuroinflammation, Pain and Fatigue Laboratory: pain and fatigue questionnaire

[AndyPR]

From their Facebook page post - https://www.facebook.com/permalink.php?story_fbid=1847559355521815&id=1543963919214695

Help us with a pain and fatigue questionnaire study!

The Neuroinflammation, Pain and Fatigue Laboratory needs approximately 500 people to complete a 30-minute survey about their experiences with chronic pain and chronic fatigue. Anyone can complete the questionnaire, and we are particularly interested to hear from individuals who have symptoms of fibromyalgia, ME/CFS (chronic fatigue syndrome) and similar diseases. You do not need to have a physician diagnosis. Your responses are anonymous and there is no compensation for your participation. Of course feel free to share this questionnaire with anyone you know who struggles with pain and fatigue. You can respond to the survey by clicking on the box below, or copying the below link in your browser. Thank you!

- Jarred Younger

Questionnaire link https://uab.co1.qualtrics.com/SE/?SID=SV_0jhgKjz9t36YRfL

 

[Old Bones]

Done! Completing the survey took less than 30 minutes. Worthwhile to help one of my favourite researchers.

 

[shannah]

"Anyone can complete the questionnaire, and we are particularly interested to hear from individuals who have symptoms of fibromyalgia, ME/CFS (chronic fatigue syndrome) and similar diseases. You do not need to have a physician diagnosis."

I'm having difficulty understanding how their results could be meaningful.

 

[AndyPR]

"Anyone can complete the questionnaire, and we are particularly interested to hear from individuals who have symptoms of fibromyalgia, ME/CFS (chronic fatigue syndrome) and similar diseases. You do not need to have a physician diagnosis."

I'm having difficulty understanding how their results could be meaningful.

Well, I see your point, but how many people without those conditions are likely to bother completing it? I assume that they must have a reason for it to be so generic but it's not explained.

 

[Old Bones]

"Anyone can complete the questionnaire, . . . You do not need to have a physician diagnosis."

I'm having difficulty understanding how their results could be meaningful.

I suspect the results will be meaningful in the broader context of neuroinflammation, pain and fatigue (the focus of the clinic). Although we are familiar with Doctor Younger due to his interest in ME and FM, his research is not limited to these illnesses. Pain, fatigue and neuroinflammation are factors in many diseases.

Several of the questions related to level of acceptance/support received from others -- spouse, family, medical system, social services, and workplace (if applicable); and also the impact the symptoms and functional limitations have on the person's thoughts regarding their life, and future.

 

[shannah]

Thanks for giving us a glimpse into some of the contents of the survey @Old Bones

 

[valentinelynx]

I did the questionnaire, but had trouble with some of the questions. The one that asks what people at work think of my condition... I do not tell people at work how I am feeling. That would likely result in my not having a job.

 

[Hutan]

I guess talking too much about the detail or guessing at their hypotheses might affect the results. Hopefully the following does not ...


I had a problem answering one question that the researchers might want to be aware of.

We are asked 'How long have you felt pain?' Well, do they mean pain related to ME? Or the earaches I had as a child? They don't give any indication where they want us to draw the line between the pain we feel when we bruise a leg or have cramp in a foot and the kind of deep pain of full-on PEM or a migraine.

They don't specify 'chronic' pain, but even that would be hard to interpret. It could cover the mild lower back pain I had for months after childbirth that resolved with time and pilates.

Like everyone else, I have felt pain since I was born. There would be something very wrong with me if I had not. I can't see how the answers people give to that question will mean anything.


And there are questions about feelings about the future, feelings of control, hopelessness, blaming, irritability and other personality/behavioural attributes. While I trust these researchers a lot more than many to not twist the results, the problem of bias in the selection of the sample is a significant one.

The characteristics of the people who want to and are able to help Jarred Younger's team by completing a questionnaire are very unlikely to accurately reflect the characteristics of the PWME population. For a start, we are far more likely to be taking an active interest in research and therefore feel on average somewhat more hopeful than someone who is not.

 

[Mel9]

I did the questionnaire, but had trouble with some of the questions. The one that asks what people at work think of my condition... I do not tell people at work how I am feeling. That would likely result in my not having a job.

Just answer NA I guess

 

[valentinelynx]

Just answer NA I guess

That's what I did, but wish there was an option for, "Other (please explain" as I would think the NA answer would be interpreted to mean I don't work.

Actually, I think that all of the questions asking how people in certain relationships to me (spouse, family, work, medical professionals) treat me in regard to my illness should include an option to say that I have not told these people about my illness, or don't discuss it with them. I cannot be the only one who is "in the closet" at work or who doesn't discuss their ME/CFS with medical professionals in general (I only discuss it with those who are specifically treating me for it, although others "know" about it, they are generally happy enough to ignore it if I don't bring it up!)

There are other issues, too. This one applies to a lot of CFS questionnaires: some of the questions ask about the classic symptoms attributed to CFS (the standard list from the Fukuda criteria) including frequent/recurring sore throat, tender lymph nodes in neck and armpits, and headaches of a new type/severity. And while I did have those symptoms at the outset (first couple of years, maybe), I haven't for many years now (I've been ill for 24 years). The questions ask if I have the symptoms currently, where it might be better if they asked if I had had such symptoms at any time since becoming ill.

Well, regardless, I wish them well on their research. Wonder if they have advisors with long-term ME/CFS who can help with issues like this?