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

20 city blocks in a mile.

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.

 

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

 

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.

 

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.

 

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.

 

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

 

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!

 

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.

 

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

 

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.

 

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

 

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

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.

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.

 

Merged thread

New PEM survey from DePaul University.

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

 

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.

 

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.

 

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. ]

 

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.