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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. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    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.
    Melanie, Rosie, NelliePledge and 3 others like this.
  2. Mij

    Mij Senior Member (Voting Rights)

    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 :thumbup:
    Melanie, Rosie, andypants and 4 others like this.
  3. Mij

    Mij Senior Member (Voting Rights)

    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. City Block.png
    Joh, WillowJ, Melanie and 5 others like this.
  4. Rosie

    Rosie Senior Member (Voting Rights)

    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?
    Melanie, Invisible Woman and Sean like this.
  5. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Metro Vancouver, BC - Canada
    I didn't see a cut off date at all.
  6. Mij

    Mij Senior Member (Voting Rights)

    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.
    inox, WillowJ, Melanie and 4 others like this.
  7. mango

    mango Senior Member (Voting Rights)

    "This survey will be open until the end of July." according to Leonard Jason's post on Facebook.
    inox, Inara, Sean and 7 others like this.
  8. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    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!
    inox, Rosie, Invisible Woman and 2 others like this.
  9. Manganus

    Manganus Established Member (Voting Rights)

    Canary islands, Spain
    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. :)
    Invisible Woman and Melanie like this.
  10. Melanie

    Melanie Senior Member (Voting Rights)

    I crumble doing them and my taxes aren't complicated.
    Invisible Woman, Mij and Webdog like this.
  11. WillowJ

    WillowJ Senior Member (Voting Rights)

    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.
    Invisible Woman and NelliePledge like this.
  12. WillowJ

    WillowJ Senior Member (Voting Rights)

    I forgot to say in the notes an aspect of PEM that I experience is emotional upset. Chiefly depression, but other emotions, too.
    Invisible Woman and andypants like this.
  13. andypants

    andypants Senior Member (Voting Rights)

    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:blackeye::rolleyes:
    boolybooly, WillowJ, Rosie and 4 others like this.
  14. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    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.
    WillowJ likes this.
  15. Andy

    Andy Committee Member

    Hampshire, UK
    Merged thread

    New PEM survey from DePaul University.
    Last edited by a moderator: May 24, 2018
  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    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.
  17. Rosie

    Rosie Senior Member (Voting Rights)

    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.
  18. Forbin

    Forbin Senior Member (Voting Rights)

    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. ]
    Last edited: Jun 28, 2018
    adambeyoncelowe, Rosie, Inara and 2 others like this.
  19. Melanie

    Melanie Senior Member (Voting Rights)

    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.
    andypants and Inara like this.
  20. Trish

    Trish Moderator Staff Member

    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.

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