ME AND CFS MORTALITY STUDY
RESEARCH PARTICIPANTS NEEDED
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.
Documenting mortality associated with ME/CFS will highlight how serious this disorder can be.
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: https://redcap.is.depaul.edu/surveys/?s=DHxuYxScE
You can contact Abby Brown at 773-325-1164 or
at DePaulMECFSResearch@gmail.com with any questions.
DePaul University, Center for Community Research
990 West Fullerton Avenue, Suite 3100
Chicago, IL 60614
De Paul University Recruitment Letter
, 2014
To those of you with knowledge of ME, CFS and ME/CFS:
DePaul University’s Center for Community Research is currently recruiting respondents for a study on myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) mortality. We are looking to recruit surviving family members, friends, and/or caregivers of individuals who had been diagnosed with ME or CFS and are now deceased.
A number of patient organizations are now using the term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS ) to describe the disease, while others know the disease as Chronic Fatigue Syndrome CFS) or Myalgic Encephalomyelitis (ME). We would like your responses, regardless of what you call this disease.
Our intention is to document the experience of these deceased individuals, and the experience of their family and friends, to improve our knowledge of ME and CFS and to help those individuals who are currently suffering from the illness. We understand that more than one person may occasionally report on the same individual who has passed away, and that is completely fine. There has been almost no research done on ME and CFS mortality in the U.S. or internationally since it is not generally recognized that people die as a direct result of having ME or CFS.
Participation in this study is voluntary. We understand that this is a sensitive topic and it may be emotionally difficult for some individuals to participate. However, we believe the information we will obtain in this study has the potential to change the perception of this disease from “just being tired” or at worst not too serious to the reality of its life-altering disability for those who suffer from it.
The medical community and relevant government agencies need to be informed of the frequency and circumstances of deaths resulting from having ME and CFS. The purpose of this study is to document the severity and consequences of ME and CFS.
The study will have two phases: phase 1 will involve a confidential online study. At the end of phase 1, participants can choose to identify themselves and volunteer for phase 2 which will consist of an in-person or phone interview.
We would greatly appreciate your forwarding this email, along with the attached flyer, to your contacts with interests in or connections to ME and CFS so we can reach the largest audience possible. DePaul University has published many studies of ME and CFS and is a well-respected source of information about the disease.
If you meet the criteria for the study (knew someone well who was diagnosed with ME or CFS and is now deceased, and you are at least 18 years old), please use this link to access the study: .
You can also contact the study by telephone at 773-325-1164 or by email at DePaulMECFSResearch@gmail.com with any questions you may have or to receive a copy of the questionnaire by postal mail. Thank you for your time, consideration, and help. Although there is no financial incentive for this study, your participation can serve to help those still struggling with ME and CFS.
Sincerely,
Abby Brown, M.A.
Principal Investigator, ME and CFS Mortality Study DePaul University
Center for Community Research
990 West Fullerton Avenue, Suite 3100
Chicago, IL 60614
773-325-1164; depaulmecfsresearch@gmail.com
I think people will we shocked by the causes of death in ME patients and the average age. I suspect cancer, heartfailure and suicide will be the most common findings.I think ‘real’ ME and POTS patients will live much shorter. This is not a benign disease.
I think it’s really important to see what other disorders ME/CFS is associated with. Simmaron Research, I believe is doing a study looking what’s happened with people with ME/CFS who’ve had it for over 10 years. That should tell us something as well.
I suspect suicide, cardiovascular and autoimmune disorders.
Hi Cort,
I am able to tell you what has happened to me.
Acquired epilepsy which can be visualized on MRI scans, and now a B-Cell leukemia (incurable). This particular leukemia is usually reserved for those around the age of seventy and two thirds of patients are male. I was diagnosed in my early fifties and am female. I have had ME for twenty-six years.
I truly hope a well constructed study looking into the long term effects of ME and CFS is forthcoming. Even though it is too late for me, it will help in bringing awareness of the serious nature of this disease and its potential fatal outcomes.
As Gigi has said, “this is not a benign disease” – not by any stretch of the imagination.
Hi Claire, I’m so sorry to hear this, but thankyou for sharing. Sending you love and prayers. x
Thank you Carrie, that’s very kind of you x
I am pleased this survey is being conducted! Hopefully much will be learned about this horrific, “real”, disease!
At least 20 years ago I met a wonderful sweet lady at a CFS/Fibromyalgia meeting here in Atlanta. We of course had many things in common other than our CFS/Fibromyalgia.
She was very Proactive and very interested in getting better. We spoke by phone frequently.
For some reason don’t remember why we kind of drifted apart on our speaking by phone and I quit going to the particular meetings. I was working and I assumed she was busy too.
One day she called me out of the blue and sounded really depressed. She said her husband had lost his job and heir insurance and she could no longer afford her shots that were helping with her pain. It was Kutapressin. I spoke with her a few times after that and she said she would spend most days laying in bed or on her sofa.
I even offered to pay for her shots-she said no that they would get ins back as he was working again. I remember clearly about 6 mo later , her husband called me and told me she had commited suicide. She was 40.
years old. She took an overdose of her pain meds.
Had just had a new Grandchild. I will never forgive myself for not insisting on paying for the shots regardless. I think they were $35.00 a week .
She just gave up!!!
Everyone needs to know this is a Real Disease and it is Serious.
I will always remember Donna.
Carole
I need to reply to Carole’s note about her friend/co-sufferer who took her own life. In 2012 (after having ME/CFS & Fibro for 20 yrs) I suffered severe depression and thought seriously about suicide–even wishing a plane would crash into my house but not hurting anyone else but me. I felt this way even though my life otherwise was rich with loving people. I saw Drs & a psychiatrist and eventually was helped tremendously with ECT treatments.
My point is: How many of us patients of ME Fibromyalgia have ALMOST taken our lives? I believe that this is an important part of this study too–those who have ALMOST taken their life.
Lenny Jason is one of my heroes. First he focussed on the problems and history with definitions. Now this–another key issue. From what I have read, suicide, then heart problems, then some kind of lymphoma (B cell?) are the most common forms of death. I have also read that there is a much lower incidence of breast cancer than usual.
Can people from the UK contribute to this study? Many thanks
I’m a 32 woman years old, and ME/CFS sufferer since 6 years.
I read that 3% of EM died of heart failure and / or kidney.
Besides cancers that are caused by stress, and accelerate / tenfold by the oxidation problems facing our mitochondria.
Finally, I think the third question is: suicides.
Shared Study, thank you
I have contacted Aby Brown to ask about international participation and she says “We are definitely looking for international respondents”.
I think this research is just so important – people are dying all over the world and yet it is not even being recognised – their death certificates will most likely just list the particular complications they died of, but not the ME or CFS itself.
I also sent Aby a link to a story about a wonderful man who recently died of ME in New Zealand – it aired just last week on TV New Zealand, and shows how devastating this disease can be. If anyone would like to see it the link is below. (Aby will try to contact TVNZ to see if they can put her in touch with someone who can respond on his behalf.)
See http://tvnz.co.nz/sunday-news/mac-s-mystery-revealed-video-5861190
This is extremely sad Carrie, and unfortunately happens too often with this disease. So many with nobody to look out for them or care for them.
I hope this study reveals the true nature of the cause of death of those with ME/CFS. The death certificates should read “complications arising from ME/CFS”, in my opinion.
I am going to share this video, and thanks for posting the link.
Claire
It’s so difficult to live with this illness, I think that everybody think to suicide every day.
It’s very difficult to have any treatments
Since (18 years) I had 2 cancers and I’m a survivor but the CFS is still there.
Please help us before is too late.
Thanks.
Jacinthe