Seeking Respondents -- MECFS Initial Diagnosis and Health Indicators Survey (est. time 15 to 30 min)

[pwme_92]

I am a PwME (since 1992) and current IT grad student seeking respondents for a survey. While the survey is not endorsed by Phoenix Rising, the Moderation Team has given me permission to post it.

• The survey can be taken anonymously and there are no "cookies" and/or other identifying information that will be collected on respondents.
• Participants can skip over questions
• Completion time: 15 to 30 minutes (estimated)
• This is part of a academic project for the BIT 5564 (Health Bioinformatics and IT) class in the VT MIT program.

I, alone, will see the responses. All answers are submitted via secure web protocol, similar to that used in our private exchanges on the PR forums. The only place where the information from the survey will be shared is in the final paper I write for the course, which will be submitted to the professor, Dr. Lara Khansa, and her teaching assistant, Nicholas Brown. Virginia Tech is a reputable university but please let me know if you have further questions in this regard.

If you are willing to help, please complete the survey by visiting the following URL no later than Noon, EDT, Thursday June 28. (Sorry for the short notice!)

https://www.surveygizmo.com/s3/4430589/MECFS-Differential-Diagnosis-Survey

Thanks and feel free to contact me with any questions and/or concerns.

 

[Diwi9]

I would like to show my support to take this survey. While I cannot vouch for the examiner, I took the survey and it appears legit. It is a good opportunity to contribute your personal experiences with medicine to research. It does not take long.

@pwme_92 - Thank you for your interest in studying this aspect of ME/CFS care. I am sorry you are a part of this community, but hope that your studies can help progress quality inquiry into our condition and our shared situation.

 

[Mel9]

I would like to show my support to take this survey. While I cannot vouch for the examiner, I took the survey and it appears legit. It is a good opportunity to contribute your personal experiences with medicine to research. It does not take long.

@pwme_92 - Thank you for your interest in studying this aspect of ME/CFS care. I am sorry you are a part of this community, but hope that your studies can help progress quality inquiry into our condition and our shared situation.

Thanks for checking this out @Diwi9
I will take the survey too

Just noticed that two questions are for US patients only

 

[Sushi]

I took. A walk down memory lane!

 

[Lisa108]

Just noticed that two questions are for US patients only

@pwme_92 Yes, this stopped me from taking the survey. If being US citizen is mandatory, maybe it would be helpful to say so in the headline of the thread?

 

[Moof]

I answered all except the one question about the US healthcare system.

 

[Wishful]

I answered the US healthcare system question anyway, just based on what I've read from others. The whole survey didn't sound critical, so I thought they'd rather have lots of responses rather than just a few strictly correct ones. It may just be a first try on 'how to design a proper survey for ME/CFS', so giving unexpected responses might be useful. For the question of 'how many times a year do you see a specialist', it didn't offer zero, so in the following text box I added "I haven't seen a specialist in 5-10 years, because I gave up on the medical system".

 

[pwme_92]

Thanks to everyone who has completed the survey so far and for this thread.

To note, this is not a rigid survey or sampling from a statistical/methodology point of view; while I initially conceived of tracking US patients' responses and experiences within the American health system, feel free to enter your experience/response even if you are not in the US--or not. It's entirely up to you.

 

[maple]

Are you willing to post your essay when you are done?

 

[pwme_92]

Are you willing to post your essay when you are done?

Sure, with some caveats:

• This is a summer Health bioinformatics class and in no way, shape, or form should the fairly quick project I turnaround be taken or construed as a "serious" or "meaningful" academic paper (or study)
  
• That being said, this is a dry run (of sorts), ideally, I would love to develop more thorough questionnaires and procedures for different segments within the healthcare community

This is all very much a work in progress.

Thanks

 

[Wishful]

One thing I suggest for future questionnaires is adding more places for comments, such as "this question is 'a or b' but my response is neither a nor b".

Also, when I clicked the 'submit' button, it took me a while to realize that it rejected the submission due to the date in one question not being in the required format, which it didn't say was the only formal allowed. I nearly closed the page thinking I was done. Only by scrolling down did I realize that it was asking me to fix the error. The worst questions are ones that require a mandatory response in a specific format, which some people simply can't provide that specific response for. Questionnaires need to have 'soft failure' modes (it allows incorrect responses) rather than the unclear 'we reject your work so far' of this one.

 

[maple]

Thanks for being interested in this condition!

 

[Sushi]

Also, when I clicked the 'submit' button, it took me a while to realize that it rejected the submission due to the date in one question not being in the required format, which it didn't say was the only formal allowed.

I had the same experience.

The worst questions are ones that require a mandatory response in a specific format, which some people simply can't provide that specific response for.

For instance, I have had ME/CFS for decades so could not give an exact date of onset, so I had to "fudge" and just make a guess.

 

[pwme_92]

One thing I suggest for future questionnaires is adding more places for comments, such as "this question is 'a or b' but my response is neither a nor b".

Thank you for your feedback, I have changed the date of onset question per your suggestion.