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

Discussion in 'ME/CFS research' started by Webdog, Apr 10, 2018.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Hi US folks how far is a block?
     
  2. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    2,092
    I think it’s to the end of the street...unless it’s a small cul de sac :D
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Yeah cheers for that :thumbup:
    What is the distance in feet or yards?
     
  4. AliceLily

    AliceLily Senior Member (Voting Rights)

    Messages:
    1,734
    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.
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    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.
     
  6. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    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.
     
    WillowJ, Manganus, AliceLily and 5 others like this.
  7. Louie41

    Louie41 Senior Member (Voting Rights)

    Messages:
    1,308
    Location:
    upper Midwest US
    it seems to depend totally on the city, and sometimes even on which part of the city.
     
  8. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    Done. It took me about 15 minutes.
     
  9. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    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. ;) )
     
  10. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,334
    Location:
    Norway
    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.
     
  11. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,187
    Location:
    UK
    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
     
  12. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    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!
     
    Chezboo, Jan, AliceLily and 10 others like this.
  13. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    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.
     
  14. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    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. o_O
     
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    10,280
    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.
     
  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,308
    Completed and now submitted.

    The save and return feature worked fine.

    I couldn't have done it in one go.
     
  17. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    Thanks
     
    Melanie and Invisible Woman like this.
  18. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,206
    According to this one standard city block is approximately 200 steps.
     
  19. Melanie

    Melanie Senior Member (Voting Rights)

    Messages:
    439
    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.
     
  20. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,816
    Location:
    Metro Vancouver, BC - Canada
    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.
     

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