Leonard Jason wants ME/CFS patients to do a PEM survey

[Webdog]

Hi US folks how far is a block?

20 city blocks in a mile.

Hi I’m not familiar with how far 10 houses would be in USA. I think this exposes an issue with his questions. If he said approximately x 100metres or yards it would be a bit easier to understand.

Usually a "block" actually means a "city block", which is generally ~1/20 of a mile in the US, but it varies by city. Noncity blocks are usually double whatever a city block is.

Where I live, if I walk north/south, the blocks are 1/10 of a mile. If I walk east/west, the blocks are 1/20 of a mile. But I think of a "block" as 1/20 of a mile.

 

[Mij]

I'm going out for my 'power walk' tomorrow and I will count the number of steps for one city block downtown (Canada).

I'll let you all know

 

[Mij]

So, I didn't realize how difficult it was to walk, hold an umbrella and count my steps at the same. I kept getting distracted.

For reference, I'm 5 feet 3 inches tall so it added a few more steps.

 

[AliceLily]

I'm not up to doing the questionnaire yet but will when I have rested more in the weekend. Is there a time frame for doing it or cut off date?

 

[TigerLilea]

I'm not up to doing the questionnaire yet but will when I have rested more in the weekend. Is there a time frame for doing it or cut off date?

I didn't see a cut off date at all.

 

[Mij]

Done, it wasn't too bad and covered alot. I noticed no mention of crashes brought on from social interaction such as visitors or chatting too long on the phone. A real debilitating and horrible part of my illness. I did add it in on my notes.

That is an important point. I also added it to my notes. I experience exacerbation of physical symptoms (muscle weakness, equilibrium/gait problems, nausea etc) after talking on the phone for too long or sitting down figuring out my taxes.

Not all M.E. patients experience this.

 

[mango]

I'm not up to doing the questionnaire yet but will when I have rested more in the weekend. Is there a time frame for doing it or cut off date?

"This survey will be open until the end of July." according to Leonard Jason's post on Facebook.

 

[arewenearlythereyet]

That is an important point. I also added it to my notes. I experience exacerbation of physical symptoms (muscle weakness, equilibrium/gait problems, nausea etc) after talking on the phone for too long or sitting down figuring out my taxes.

Not all M.E. patients experience this.

Me too ...I’ve been working full time in my new job for 6 weeks now and the first really bad disconbob moment I had was after 3 121 people meetings in one day. I had been avoiding induction style meetings and staggering them slowly over time (luckily my new boss thinks they are a bit pointless) but ended up having a load back to back.

Now I’m completely laid up even though it was Wednesday last week. People are the worse especially new people!

 

[Manganus]

Hi I’m not familiar with how far 10 houses would be in USA. I think this exposes an issue with his questions. If he said approximately x 100metres or yards it would be a bit easier to understand.

I agree totally!
From the perspective of the questionnaire, we living "overseas" seemed to be more of disturbing exceptions than intended target group.

Still, I think it's a laudable initiative.

 

[Melanie]

sitting down figuring out my taxes.

I crumble doing them and my taxes aren't complicated.

 

[WillowJ]

Yeah cheers for that
What is the distance in feet or yards?

I agree, a "block" is a silly way to do measurements. Means any number of different distances.

I get that people are bad at estimating distances so they wanted to use something familiar, but not everyone lives in a city center, and probably not every city center has similar blocks.

Plus, as you pointed out, it doesn't go between countries.

 

[WillowJ]

I forgot to say in the notes an aspect of PEM that I experience is emotional upset. Chiefly depression, but other emotions, too.

 

[andypants]

I forgot to say in the notes an aspect of PEM that I experience is emotional upset. Chiefly depression, but other emotions, too.

I wrote in the notes that I get emotional exhaustion as well, where I don’t have the energy to process or filter emotions or reactions. Not fun, and not fun to be around

 

[Little Bluestem]

It's past my bedtime, so I will leave this for another day.

Is this asking if I COULD be sensitized? Or if I HAVE been sensitized?

I would think that the only way you would know that you COULD be sensitized is if you HAD been sensitized. So I would say the essential question is if you HAVE been sensitized. Odd way to state it, though.

Hi US folks how far is a block?

Just add to the confusion - in the part of the country where I live, city blocks are square, not rectangular. There are either 8 or 12 per mile.

 

[Andy]

Merged thread

New PEM survey from DePaul University.

We are conducting a research study because we are trying to learn more about the experience of abnormal responses to physical and/or cognitive exertion, which has been referred to as post-exertional malaise (PEM) in past research, in patients with Myalgic Encephalomyelitis (ME) and/or Chronic Fatigue Syndrome (CFS). Due to an ongoing debate about how to define and measure abnormal responses to physical and/or cognitive exertion, the patient community aided in the development of this questionnaire to try to understand how this symptom effects these patients health. We are asking you to be in the research because you have a diagnosis of ME or CFS, speak English, and are 18 years of age or older. If you agree to be in this study, you will be asked to complete a survey. The survey will include questions about your abnormal responses related to your ME or CFS. We will also collect some personal and demographic information about you, such as age, gender, race, marital status, income, level of schooling, and work status. The full survey can be completed online. If there is a question you do not want to answer, you may skip it.


This study may take 1-2 hours of your time. We understand that this may be difficult to complete, so you may take as many breaks as you'd like, and you may work on this survey over several days. Research data collected from you will be anonymous. Your participation is voluntary, which means you can choose not to participate. There will be no negative consequences if you decide not to participate or change your mind later after you begin the study. You can exit the survey at any time. Once you enter your responses, we will be unable to remove your data later from the study because all data is anonymous and we will not know which data belongs to you. At any time prior to submitting your survey responses, you can select "reset" below any question to remove your response to that question from the study.


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.


If you have questions, concerns, or complaints about this study or you want to get additional information or provide input about this research, please contact Carly Holtzman at 773-325-4154 or by email at choltzm1@depaul.edu.

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

 

[Invisible Woman]

Finally, I got it done.

Can I suggest that the next time someone has a questionnaire for people with ME they get patients opinion on the layout first? I don't mean to sound snippy. I'm glad they are doing this and I want to help and participate. The layout made it harder than it needed to be and may have affected how I answered.

Some things that would have helped me are:

Not using bold font throughout and use it only for emphasis.
Larger gaps between questions
Indenting the questions triggered by responses to previous questions would make it so much easier to review.

 

[AliceLily]

"This survey will be open until the end of July." according to Leonard Jason's post on Facebook.

Great. I thought it was end of June and had to race to find this thread today, but see it is open to the end of July.

 

[Forbin]

Leonard Jason is at DePaul University in Chicago, Illinois. Chicago apparently uses a version of "The Philadelphia Grid System," in which there are 8 blocks to a mile. So, if that's the metric - and I'm not sure that it is - a block would be 660 feet long. "A walk around the (square) block" would be half a mile (4 x 660 feet). A block would also be about 201 meters, with a walk around the square block being about 0.8 kilometers.

Again, I'm not sure if this is what Jason has in mind.


[ FWIW: The suburban block I grew up on in Southern California was 1/4 mile long and had 15 houses on each side of the street. ]

 

[Melanie]

Here are the results on the phrases portion that describes PEM.

I think if number one said Prolonged worsening of symptoms more than 24 hours after exertion or physical activity he would have really nailed it. But who knows. Number 1 is pretty good.

If it is called Post-EXERTIONAL Malaise, then I think EXERTION should be in the description. Just my 2 cents. Maybe is should be Post-ACTIVITY Malaise or Post-ACTIVITY (Input best word here).

And 24 hours later (although it is 24-72 as I usually have the bulk of my symptoms come on 36 hours later) is helpful. When I read 24-72 hours later a few years ago, I finally understood why I could never understand what was happening to me. The truth is, I have some sort of weird energy SURGE during the first 24-36 hours. Although, that SURGE is a symptom it is also pretty immediate for me, not delayed and I never interpreted it as a symptom although the 2-day CPET test I believe is showing our biological symptoms are going wrong.

But still, excellent community input and very good results.

 

[Trish]

I'm confused. The survey referred to in this thread started in April and is due to close at the end of July. The results @Tom Kindlon has quoted are from a paper published back in March. Tom started a thread on the March study here today. Can anyone clarify.