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Jason: Questionnaire - Assessment of Demoralization & Depression-like Symptoms Experienced by [PWME]

mango

Senior Member
Messages
905
Leonard Jason on Facebook said:
Our recent paper “Mortality in patients with ME and CFS” found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer. This is an alarming issue and we would like your help understanding what factors may be contributing to this earlier mortality.

In addition to developing cancer and cardiovascular problems, some individuals with ME and CFS exhibit symptoms similar to demoralization and depression due to the major symptoms of their primary physical illness and the associated limitations and stigma experienced.

We would like your help for our research study in understanding what external factors may be influencing the development and expression of demoralization and depression-like symptoms.

We would like to invite all individuals 18 or older with ME and CFS to complete our questionnaire
(link below) assessing several factors including access to and quality of healthcare, illness severity, financial impact, and social interactions with both supportive and non-supportive people.

We hope the results of this study will help us better understand what you experience with your illness and the types of barriers to receiving quality care and support. This questionnaire will take approximately 90 minutes to complete.

You can access the survey at the following link:

https://redcap.is.depaul.edu/surveys/?s=TNPC3XR8HE

https://www.facebook.com/leonard.jason.12/posts/10208889497127699

(You can save your answers at any time and come back to it/continue later.)
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
https://redcap.is.depaul.edu/surveys/?s=TNPC3XR8HE

Dr Leonard Jason is asking for people to help him with this research.

An Assessment of Demoralization and Depression-like Symptoms Experienced by Individuals with ME and CFS
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Returning?
Please complete the survey below.

Thank you!

ADULT CONSENT TO PARTICIPATE IN RESEARCH

An Assessment of Demoralization and Depression-like Symptoms Experienced by Individuals with ME and CFS
Principal Investigator:
Stephanie McManimen, B.S., Research Assistant

Institution: DePaul University, Chicago, Illinois, USA

Department (College): Department of Psychology, College of Science and Health

Faculty Advisor: Leonard A. Jason, Ph.D. Department of Psychology, College of Science and Health

What is the purpose of this research?
We are asking you to be in a research study because we are trying to learn more about the factors that may contribute to demoralization and depression-like symptoms experienced by some individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). This study is being conducted by Stephanie McManimen, a research assistant at DePaul University.

This research is being supervised by her faculty advisor, Dr. Leonard A. Jason. We hope to include up to 1000 people in the research.

Why are you being asked to be in the research?
You are invited to participate in this study because you are an individual who is diagnosed with ME or CFS. We are looking to document your experiences, how others react to your illness, and the impact of several factors. You must be age 18 or older to be in this study. This study is not approved for the enrollment of people under the age of 18.

What is involved in being in the research study?
If you agree to be in this study, you will be asked to fill out an anonymous online survey for this research study. The survey will ask questions about your demographics and health history. The survey will also ask questions about your experiences with social interactions, access to and quality of healthcare, and attitudes others have towards your illness.


How much time will this take?
This study will take about 90 minutes of your time.

Are there any risks involved in participating in this study?
Being in this study does not involve any risks other than what you would encounter in daily life. You may feel uncomfortable or upset, because some of the questions are sensitive and the topic can provoke strong feelings or emotions. You do not have to answer any question you do not want to. If, at any point in this study you feel that any test question brought up feelings that would compel you to seek counseling outside of this study, you may ask for this referral at any time during the survey via phone or email. You may contact the PI, Stephanie McManimen (773-325-4962, smcmanim@depaul.edu) or the faculty sponsor, Leonard Jason (ljason@depaul.edu). If your need for counseling is urgent, you can also be referred to Response Hot Line (1-800-273-8255), a free and confidential local crisis counseling service. However, you would still be responsible for payment for any additional treatments and services provided by the referred clinician or for arranging payment through your medical insurance company or another source.

Are there any benefits to participating in this study?
You will not personally benefit from being in this study. We hope that what we learn will help individuals with ME and CFS and their friends and family.

Can you decide not to participate?
Your participation is voluntary, which means you can choose not to participate. There will be no negative consequences, penalties, or loss of benefits if you decide not to participate or change your mind later and withdraw from the research after you begin participating.

Who will see my study information and how will the confidentiality of the information collected for the research be protected?
The research records will be kept and stored securely. Your information will be combined with information from other people taking part in the study. When we write about the study or publish a paper to share the research with other researchers, we will write about the combined information we have gathered. We will not include your name or any information that will directly identify you. We will make every effort to prevent anyone who is not on the research team from knowing that you gave us information, or what that information is. However, some people might review or copy our records that may identify you in order to make sure we are following the required rules, laws, and regulations. For example, the DePaul University Institutional Review Board may review your information. If they look at our records, they will keep your information confidential.

You should know that there are some circumstances in which we may have to show your information to other people. For example, if a participant calls the research staff for counseling referrals and reports child abuse or neglect or poses a danger to themselves, we will have to report them to the appropriate authorities.

Who should be contacted for more information about the research?
Before you decide whether to accept this invitation to take part in the study, please ask any questions that might come to mind now. Later, if you have questions, suggestions, concerns, or complaints about the study or you want to get additional information or provide input about this research, you can contact the researcher, Stephanie McManimen (773-325-4962, smcmanim@depaul.edu) or the faculty sponsor, Dr. Leonard Jason (773-325-2018, ljason@depaul.edu).


This research has been reviewed and approved by the DePaul Institutional Review Board (IRB). If you have questions about your rights as a research subject you may contact Susan Loess-Perez, DePaul University's Director of Research Compliance, in the Office of Research Services at 312-362-7593 or by email at sloesspe@depaul.edu.

You may also contact DePaul's Office of Research Services if:

? Your questions, concerns, or complaints are not being answered by the research team.
? You cannot reach the research team.
? You want to talk to someone besides the research team.


Statement of Consent from the Subject:
I have read the above information. I have had all my questions and concerns answered via telephone or email. By clicking the box below, I indicate my consent to be in the research.
* must provide value

I Agree
I Do Not Agree
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mango

Senior Member
Messages
905
I am sorry @mango.:redface: I looked for it on the forum and it didn't come up. Perhaps a mod can erase this thread.

No worries, no need to apologise :) Let me know if I should change the title of the thread I made, to make it easier to find :)
Moderator note: Threads merged.
 
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Dechi

Senior Member
Messages
1,454
And do you want all patients to answer, the less severe to the most severe ?
 

Cinders66

Senior Member
Messages
494
Can there be research on this important topic which affects the severely affected that isn't going to take 90 minutes? I can do it saving it etc but it would be a whole week - 2 weeks concentration Energy.
 

RogerBlack

Senior Member
Messages
902
Can there be research on this important topic which affects the severely affected that isn't going to take 90 minutes? I can do it saving it etc but it would be a whole week - 2 weeks concentration Energy.
Well - there is an email there, and suggesting that may be a good plan.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I wish there was a way we could do this study but be able to leave out some areas completely if too hard to answer eg the part on income. My head has no idea of my yearly income.. to be able to answer the questions of income and lost earnings, its going to take me some time as Im going to have to go through files at home looking to find the answers.

what currency do aussies use? I have not a clue how to dollars and cents on this form and dont know what its called.

edit Right now my brain doesnt even know how many weeks in a year :/ I just managed to look up online the disability payment pension amount here its $1,289.80 per fortnight so now just have to look up how many weeks in year.

Not an easy form for those who have brain issues though the questions so far are clear.
.................................................

for anyone else stuck with the form and your brain.. its apparently 52 weeks in a year or 26 fortnights in a year.
......

so for an aussie disability pension im coming up with around $33540 per year with using online calculator to a rounded number. (i hope this is right, there is good chance Im putting down completely wrong numbers onto the form).

"The Australian dollar (sign: $; code: AUD) is the currency of the Commonwealth of Australia,"
..............

after 30 mins of trying to do this study and not able to get throu the first page, Im going to have to stop as I am screwing up my maths and cant figure it out. If anyone can help me figure out my figures so I can partake in this study I'd really appreciate as Ive had tons of crappy experiences around this illness and others so I'd like to do this study.

I just came up with a much lesser number for previous annual amount before getting ill compared to what im getting now and it must be wrong as Im seeing that previous fortnightly number as bigger (unless my brain is giving me false impressions of things).

details .. I was on an Aussie single parents pension before I got ill (is it same amount no matter how many kids? I had 2).. ($738.50 fortnight?) and now are on a disability pension ($1,289.80 fortnight) so trying to figure out my before ME/CFS and after annual finances with that..

***feeling so very frustrated I cant work it out myself without getting it confused and the numbers coming up on online calculator dont look right and I cant figure where Im going wrong**
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I just estimated the income stuff... too hard otherwise.

Im trying to estimate it.. hence the rounded number i was using when Im trying to use calculator, I couldnt transfer demimal points and non rounded number onto the online calculator to nearest $10 I was trying to use as it wouldnt allow me to just cut and paste it in.

Thing is one of the income numbers seemed to be "out by tens of thousands of dollars" compared to the other one and I couldnt figure out what Ive got wrong. Made no sense at all.

eg I got $19210 for a yearly amount every time I'm trying to work it out and my brain is tellling me it should be bigger (I dont know how much bigger) then the $33500 if my brain is making any sense of it. (so that is AT LEAST 14K wrong or maybe it is right and Im preceviing figure wrong..it could be 30K out, I've not a clue .. the answer could be double or triple the actual annual numbers Im getting cause I dont seem to be getting the maths right).

Having such brain confusion with the figures (possibly 10s of thousands out) I cant even estimate it.
..

"Later, if you have questions, suggestions, concerns, or complaints about the study or you want to get additional information or provide input about this research, you can contact the researcher, Stephanie McManimen (773-325-4962, smcmanim@depaul.edu) "

maybe I can contact them with the fortnightly figures and see if they help me come up with the annual amounts to put on form. they need a form help person.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I just mailed them and hope they can help with my maths so I can do form.. I tried to get my potential earning based on me at one stage working 60hrs a week in a job which pays around $23-24 per hour and was coming up with a yearly potential earning of only $1288 which is obviously way out (this is what I mean by I cant even estimate as I can see my numbers are so very wrong but cant figure out what Im doing wrong).

Can anyone tell me if there is other questions on that form if I can get some help to get beyond that first page which will probably get me stuck to?? (things i need good memory for or to work out?) or is the form easy going from there?

Obviously Im not gifted like the rest of you lol. Im just a ME dunce and frustrated. :bang-head: when it comes to doing forms
 
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daisybell

Senior Member
Messages
1,613
Location
New Zealand
I just mailed them and hope they can help with my maths so I can do form.. I tried to get my potential earning based on me at one stage working 60hrs a week in a job which pays around $23-24 per hour and was coming up with a yearly potential earning of only $1288 which is obviously way out (this is what I mean by I cant even estimate as I can see my numbers are so very wrong but cant figure out what Im doing wrong).

Can anyone tell me if there is other questions on that form if I can get some help to get beyond that first page which will probably get me stuck?? or is the form easy going from there?

Obviously Im not gifted like the rest of you lol. Im just a ME dunce and frustrated. :bang-head: when it comes to doing forms
The finances bit is probably the trickiest.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The finances bit is probably the trickiest.

thanks that's good to know. I think my elderly friend is going to be back from interstate sometime in coming week so I may be able to ask for his help, he's the one who usuallly helps me sort my bank stuff out (if I dont forget about this form entirely by then).