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

I think it’s to the end of the street...unless it’s a small cul de sac

 

It could be a big block or a small block of houses. If a block is as large as 20 houses long before a road, I would half that amount and call 10 houses 1 block.

 

Here in the US they usually do say "block" when doing walking assessments. For instance, they will usually say "city block" which is pretty long. I always think about NYC and having to walk the block end to end. It is FAR. lol

So, I don't know if he meant a block in a neighborhood or a city block like in NYC so I went with city block as that is how my other walking assessments measured it. It doesn't matter much, most days I can't walk a simple neighborhood sidewalk and that is how I would refer that to a sidewalk, not a block.

I Googled city blocks in NYC and people are saying 20 blocks equals a mile. There are 1,760 yards in a mile. 1760/20 = 88 yards per city block. 88 Yards = 80.4672 Meters.

Hope that helps.

 

it seems to depend totally on the city, and sometimes even on which part of the city.

 

Done. It took me about 15 minutes.

 

It depends on your neighbourhood. Going around the block is basically going to the end of your street, turning left or right and walking down to the next street and then walking down that street and walking back to your street coming from the opposite direction you started in. (I hope that makes sense. I'm tired. )

 

I would also have liked to pick more than one description of the progression of the illness.

For me it started out fluctuating and mild enough that although something was clearly wrong, ME was not even considered. Then I stopped having remissions and it got progressively worse for years until mostly bedbound.

Now I’m stable, but I’ve had some small level of improvement these last few months that seems to be sticking but it is to early to tell for sure (why I haven’t been in here for a few months, it is hard work to balance out without overdoing it when you have an entire percent more energy, lol).

So, hard to pick one.

 

I haven't returned to the survey to finish it yet, but I also found the reference to 'blocks' confusing (and it sound s to me as though even Americans might be confused by that one) and I also was confused by the difference in my ME over time - it's relapsing remitting in a fluctuating manner and has overall been declining over the last 6 years. What on earth do I click??
What does a guitar string in the head feel like? Is it the same as what I've got going on in my head? Will leave it to a better day I think

 

I found the font uncomfortable and the questions repetitive, but tried not to overthink it and just answered instinctively.
Couldn't rate my top 3 worst symptoms in order so left that blank. I assume they could work it out from the answers given previously -I could've worked it out from the questions I'd answered previously if the font wasn't so uncomfortable!

 

I think if you were experiencing the guitar string in your head, you would relate to that question. I don't have that but I have heard of people feeling it. I put in the survey where it asks for other symptoms you may have that I get brain burning and sometimes so does my spinal cord and that it can feel hot too.

I would mention this in the area it asks about other symptoms. But overall, you are only answering the questions as to where you are at NOW with your illness.

 

I can't even remember this question. lol I may take a look at the survey again just to see this. I wonder what I answered.

 

I guess the guitar string thing is one of those if you get it you'll know it type of things?

I found the font very difficult. I've done a little bit and will go back to it. Might be easier to read on my computer rather than my laptop. Dense font in bold is very hard work.

 

Completed and now submitted.

The save and return feature worked fine.

I couldn't have done it in one go.

 

According to this one standard city block is approximately 200 steps.

 

And here it says 10 blocks equals a mile. Well, I don't know what a city-block is then. All the other references I saw said 20 blocks was a mile.

 

I thought first of all that they had accidentally repeated one of the questions but after reading them over a few times I realized there was a one word difference.