Leonard Jason, ME/CFS’s foremost epidemiologist and researcher/advocate requests that you tell him what the heck happens when you engage in physical and cognitive exertion.
The survey grew out of extensive discussions with the patient community during the public comment period on NIH’s common data elements. During those discussions Jason saw the need for a better understanding of PEM.
The study that will come out of this will help to underline the seriousness of this disease and the limitations it imposes.
You must be over 18. The front page of the survey does not mention any country restrictions. This is a long survey – Jason is known for his attention to detail – but you can stop the survey in the middle and then resume later. All ME/CFS patients – please take this survey..
https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH
done! now I have survey-PEM haha
me thinks there’s 2 types:
– when you get wired and get through your shopping or just having a chat with a neighbour on adrenaline, which mean dopamin/magbesium etc have been exhausted and now you’re getting the pem-payback until it’s back to it’s usual measly level
– flare up of Epstein Barr, usually accompanied by a sore throat and prolly triggered by type 1
Ha ha – survey PEM 🙂
Totally get this – for me muscle pain PEM and fluey PEM – two different things.
Totally agree!
Daughter and I could do this over time if on paper. If can’t be printed out, can’t. He will get only ME/CFS responses from moderately affected ME/CFS patients who do not have light sensitivity and can use the computer. Let me know if there is a way we can print it out. Thanks, Cort.
all I can think of is to email me the answers I could input them. I don’t know if you can do that and I’m not sure that its allowed. I’ll have to check
Thanks.
I started the survey this morning, had to stop early into it so got my re-entry code from the survey webpage. Have tried entering code in both re-entry links sent to me via email, and in link on Health Rising page, and am repeatedly being taken to someone else’s survey – those are not my previous answers and the survey I’m being taken to seems to be finished. I triple-checked to make sure I am entering the code as it was sent to me. Just thought someone should know there might be a glitch in that process. Will begin again.
I’ll inform Lenny
They are looking into that problem and the possibility of having someone do someone else’s survey.
just filled in the survey. I’m glad to see that at long last the CFS’s phenomena are accurately presented and explored. hope this is the first step in understanding the core causes of this illness and finding a cure for it.
From Lenny
Dear Patient Community,
First off, we would like to thank you all for participating in this study. In less than 48 hours, over 800 people have responded to our survey. This far exceeded our expectations and we appreciate your willingness to share with us. This survey will be open until the end of July.
To address a reoccurring issue, we would like to take a moment to explain the instructions on saving your survey so that you can return to it later.
1. When you would like to take a break, scroll all the way to the bottom of the webpage and click “Save & Return Later”
2. A window will pop up saying “’Return Code’ needed to return”. I suggest writing this return code down by hand
a.There is an option to send the survey link to your email, however, it seems that these emails are getting lost, or may have been sent to junk/spam mail
3. When you wish to continue your survey, go to the survey webpage https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH and in the top right corner, click the “Returning?” button and enter your return code to continue where you left off
We hope this answers some questions. You are welcome to continue sending us your feedback. We cannot guarantee that we will get the chance to respond to everyone personally, however we will be taking all comments and concerns into consideration as this study progresses.
We are proud that this questionnaire was developed in collaboration patients and we want you to feel heard.
Thank you Dr Jason! I had trouble with the link to the survey on my computer but it worked fine on my phone, altho that made me a bit dizzier than usual:-) Thanks for any general updates that you can report back here – over 800 responses in 48 hours, wow