De Paul University - ME/CFS Mortality Study: Research Participants Needed

[Firestormm]

First published by ProHealth 16 March 2014

ME/CFS Mortality Study: Research Participants Needed

ProHealth Editor's Comment: Dr. Leonard Jason is a highly respected researcher in the field of ME/CFS. He is the only person in the U.S., to date, who has done epidemiological research on mortality in ME/CFS. He is now conducting a further investigation of mortality in the patient population. This research is badly needed because the disease is usually described as "benign" - that is, non-fatal.

Were you familiar with someone who had been diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)and has since passed away?

Researchers at DePaul University are looking to investigate issues related to ME and CFS mortality by hearing directly from surviving family members, friends, and/or caregivers of individuals who had ME or CFS and are now deceased.

Participation in this study is voluntary. We understand that this is a sensitive topic and that it might be emotionally difficult for some individuals to participate.

However, we believe the information we will obtain from this study has the potential to lead to a better understanding of ME and CFS mortality. The medical community and relevant government agencies need to be informed of the frequency and circumstances of deaths resulting from or associated with having ME or CFS. The purpose of this study is to document the severity and consequences of ME and CFS.

If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones.

Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. Participants must be at least 18 years old.

DePaul University has published many studies of ME and CFS and is a well respected source of information about the disease.
____________________

If you are interested in participating, please use this link to access the survey here.

If you have any questions, you can contact Abby Brown at

773-325-1164 or at DePaulMECFSResearch@gmail.com

DePaul University, Center for Community Research
990 West Fullerton Avenue, Suite 3100
Chicago, IL 60614

 

[Firestormm]

I guess you have to be a US resident (or the person who died had to have been a US resident), but I don't know without asking or completing the survey.

 

[justy]

I participated in one of their studies by questionnaire, so I wouldn't presume you have to be in the States. I'm glad someone will be looking at this important subject.

 

[Firestormm]

I participated in one of their studies by questionnaire, so I wouldn't presume you have to be in the States. I'm glad someone will be looking at this important subject.

I have had a flick through the survey now. On page 3 of the actual survey, it asks about nationality, and then if from the USA which state etc. So it would seem you can complete it from anywhere in the world

 

[xchocoholic]

Why aren't they just asking cfs researchers for this? That way they'd have med recs too.

 

[Little Bluestem]

I doubt that everyone who has died of ME/CFS had contact with a researcher.

 

[xchocoholic]

I doubt that everyone who has died of ME/CFS had contact with a researcher.

But cfs researchers have access to the medical records for thousands of properly diagnosed pwcs.

Statistically the odds of getting accurate data would be better.

I don't see the point of putting those who've suffered the loss of a freind or family member through this.

 

[catly]

Trying to revive this thread.

Dr. Lenoard Jason announced at the NIH Pathways to Prevention meeting that they are still looking for leads for people who knew patients who had ME/CFS and are now deceased. Click on the following for more information:

ME/CFS Mortality Study: Research Participants Needed

"If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones.

Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. Participants must be at least 18 years old.

DePaul University has published many studies of ME and CFS and is a well respected source of information about the disease."
____________________

If you are interested in participating, please use this link to access the surveyhere.

If you have any questions, you can contact Abby Brown at

773-325-1164 or at DePaulMECFSResearch@gmail.com
DePaul University, Center for Community Research
990 West Fullerton Avenue, Suite 3100
Chicago, IL 60614

 

[taniaaust1]

I rarely use my email but are considering it for this. There was a guy in my country town were I lived before I moved who I believe ME/CFS probably caused a role in his death. He was in horrible state and the hospital wouldnt believe he was sick, he just got admitted again in the week before his death but the week or two before that, they'd kicked him out of hospital again, not believing him he was sick.

. He thou due to our towns doctors not believing in ME/CFS (I wasnt able to get my diagnoses in that town, people in that town to this day if you have ME/CFS you dont have a dr there and he didnt drive so doctors elsewhere werent easily accessable to him). He only in his last years finally got a FM diagnoses but he certainly didnt just have the FM, he wasnt able to do much at all and always in bed. He was hardly eatting due to being too sick to cook etc so his diet was terrible.

To top that off while in hospital, he kept on missing his meals there (I know this as my father was a friend of his and he asked my dad to get him some food due to missing meals). They'd deliver his food while he was asleep (so he wouldnt know) and then he'd wake up, only to find they'd taken it away and the meal was over...so he was going hungry and not being fed in hospital.

I think his death was put down to organ failure (liver i think it was).. it makes me angry some just to think about it seeing they kicked him out of hospital just before yet again, not believing him. I wonder cause he wasnt getting food at the hospital in that last week (expecting him to be awake for his meals and ignoring him if he wasnt), if they contributed a bit too to his death.

 

[taniaaust1]

Maybe if they cant get enough for that study, they would have more luck in gathering together a group of ME people who are high risk and studying them to see how they all die and when. Im sure they could easily gather a high risk group of ME people to study. That would be a very interesting study. (Do the high risk group know they are high risk?? Could the researchers call for ME/CFS people who believe this illness is likely to kill them?)

I consider myself high risk due to this year my blood tests showing my kidneys werent working right at one point due to the POTS due to this (my body just dehydrates even when drinking a lot), the hospital doctor was quite concerned at the blood test and said my kidneys werent working well and at risk.

I'd have to also be at risk due to my BP issues (swinging and going up to 136/189) my BP issues with the dysautonomia just seem to be worsening and worsening as time goes by (BP swings like that are an added risk factor for a heart attack on top of the normal risks). I also go suicidal at times due to how I get treated by some (disbelief, contempt and other horrible reactions to me) due to me having ME/CFS.

Anyway, I think Im likely to die from ME/CFS due to one these 3 things (or from cancer which in my case would probably be missed due to all the other issues the ME causes).

 

[taniaaust1]

I just tried to do the survey for the one who died but I dont know if its due to my computer connection and computer issues (I have dialup still) but it wouldnt load next page and came up saying the following, so maybe you do need to be in the US????? as it mentions 10 digit US phone number

"
This value you provided is not a number. Please try again.
This value you provided is not an integer. Please try again.
The value entered is not a valid Vanderbilt Medical Record Number (i.e. 4- to 9-digit number, excluding leading zeros). Please try again.
The value you provided must be within the suggested range.
The value you provided is outside the suggested range.
This value is admissible, but you may wish to verify.
The value entered must be a time value in the following format HH:MM within the range 00:00-23:59 (e.g. 04:32 or 23:19).
This field must be a 5 or 9 digit U.S. ZIP Code (like 94043). Please re-enter it now.
This field must be a 10 digit U.S. phone number (like 415 555 1212). Please re-enter it now.
This field must be a valid email address (like joe@user.com). Please re-enter it now."

 

[Hope123]

Trying to revive this thread.

Dr. Lenoard Jason announced at the NIH Pathways to Prevention meeting that they are still looking for leads for people who knew patients who had ME/CFS and are now deceased. Click on the following for more information:

ME/CFS Mortality Study: Research Participants Needed

"If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones.

Participants will be asked to complete a confidential online survey and will be given the opportunity to volunteer for an additional in-person or phone interview. The online survey portion is expected to take up to 1 hour of a participant’s time. Participants must be at least 18 years old.

DePaul University has published many studies of ME and CFS and is a well respected source of information about the disease."
____________________

If you are interested in participating, please use this link to access the surveyhere.

If you have any questions, you can contact Abby Brown at

773-325-1164 or at DePaulMECFSResearch@gmail.com
DePaul University, Center for Community Research
990 West Fullerton Avenue, Suite 3100
Chicago, IL 60614

Thanks for bumping this up, Catly.

 

[alex3619]

Good data on mortality could do much to advance our cause. Part of the prejudice we face is that we are often considered to have just fatigue. Solid data showing early deaths would force some to take ME and CFS more seriously.