Leonard Jason Wants You! (To Tell Him About Your PEM)

[Cort]

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. It's a long survey but you can stop it in the middle and then resume later. All ME/CFS patients - please take this survey..

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

 

[Diwi9]

I participated yesterday. It says it can take 1-2 hours, but it took me about 20 minutes. The font is small, so if you can increase the text on your screen, it will help.

The questions were good...it's good to see the more subtle aspects of PEM captured. This needs to get sorted out as it is the distinguishing clinical feature of this illness until a reliable biomarker is discovered.

 

[rel8ted]

It was not nearly as daunting as Cort made it sound.. Took me less than half an hour as well. That was all my cognitive energy for the day though.

 

[Seven7]

Took me 30min on good brain day.
It really worries me they think like pacing and symptoms are related when sometimes I PAcE the same and food, bad sleep and so on have more to do w PEM than anything else. They need to devide the PEM from the Worsening of symtoms from inmune reactivations, was all mingled toguether.
2) They assume how much last the onset has to do w you vs how it has changed overtime. When I was first sicknwould hit faster vs the longer I am w Cfs.
Also depends on how much I overdo by, how long I stay over AT....
3) worsening of symptoms is independent of PEM in the sense than I have way less symptoms now. I
Am sitting here as a normal
Person, feel
Nothing wrong but my PEM is as severe than when I am Cfs horrible.
PEM is pem
The wall is the wall
I am remitting relapsing

 

[Sushi]

I just took it but one thing I should have mentioned but didn't (anyone from the study reading this thread?). They ask for the year and age of diagnosis but don't allow for the fact that many of us had ME/CFS for years or decades before a doctor diagnosed us. Thus they may be getting a higher age at onset than is accurate. For instance, someone could have been diagnosed at 50 with and onset age of 30.

 

[Murph]

I thought this was a good question:

On a day you are recovering from symptom exacerbation, does it take less exposure than usual for a trigger to exacerbate your symptoms?

That's obvious to us but I'm unsure if it's obvious to researchers.

I think PEM-focused research is the future of this condition. It's inconvenient for labs to study but it's where the rubber hits the road in terms of acute symptoms and being distinct from other conditions.

 

[Murph]

I just took it but one thing I should have mentioned but didn't (anyone from the study reading this thread?). They ask for the year and age of diagnosis but don't allow for the fact that many of us had ME/CFS for years or decades before a doctor diagnosed us. Thus they may be getting a higher age at onset than is accurate. For instance, someone could have been diagnosed at 50 with and onset age of 30.

There was a question in there about how long you'd had the symptoms and a separate one about when you were diagnosed.

 

[Sushi]

There was a question in there about how long you'd had the symptoms and a separate one about when you were diagnosed.

True but their choices didn't reflect the history of a lot of long term patients. As I remember it went from "since childhood or adolescence" to 10 years (or more?). For many of us we started getting symptoms in our 20s or 30s and it seems that it would be good to be more specific than 10 years or more.

 

[maybe some day]

Done.. about 20 to 30 min

 

[Mel9]

I thought this was a good question:

On a day you are recovering from symptom exacerbation, does it take less exposure than usual for a trigger to exacerbate your symptoms?

That's obvious to us but I'm unsure if it's obvious to researchers.

I think PEM-focused research is the future of this condition. It's inconvenient for labs to study but it's where the rubber hits the road in terms of acute symptoms and being distinct from other conditions.

Yes, but I didn't know how to answer that because I do NOTHING inthe period of recovery now that I have learnt how to handle PEM.

 

[Sundancer]

started, but don't get the last row questions.

bothered by?

does that mean that you feel mentally bothered by not being able to do things, or that it impairs your daily living?

( I mean, most of the things I not mentally bothered about anymore. That would only take up energy. I am mentally bothered about still having cognitive problems, but the fact that the stairs have changed to an enormous hurdle, or that my home is a mess, or that I cannot go out... these are just the facts of life)

 

[blueberry]

I was really happy to be able to do this today, feel like I've finally done something useful for research

 

[maybe some day]

I was really happy to be able to do this today, feel like I've finally done something useful for research

I felt the same, it was worth taking the time