Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Participate in Leonard Jason's online PEM survey

Discussion in 'General ME/CFS Discussion' started by mango, May 14, 2015.

  1. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    Leonard Jason:
    "I invite those with ME and CFS to participate in an online survey (link below) for a research study on the patients’ experience with post-exertional malaise and how they define the symptom. The research survey will take approximately 30 minutes of your time. More information is provided on the first page of the survey.

    You can access the survey at the following link: https://redcap.is.depaul.edu/surveys/?s=oCPGRbIDTd

    Thank you for your assistance."

    Source: https://www.facebook.com/leonard.jason.12/posts/10205268556086436
     
    Last edited: May 14, 2015
    Jennifer J, WillowJ, oceiv and 7 others like this.
  2. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,781
    Jennifer J, WillowJ, oceiv and 5 others like this.
  3. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    thank you @Valentijn, i've edited the link in my post now.
     
    oceiv and Valentijn like this.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    12,777
    Likes:
    34,160
    UK
    Done.
     
    mango likes this.
  5. duncan

    duncan Senior Member

    Messages:
    2,022
    Likes:
    4,449
    I suspect I may take some heat for this, but I used to participate in Jason's surveys a few years back. But I grew disillusioned with his heavy emphasis on the whole tired thing - like he was validating the CFS CDC mantra to a certain extent.

    I realize many consider him a staunch ally. If it helps, I am not particularly a fan of Fallon either (a favorite Lyme advocate who happens to be a psych, too).

    People will ask how I would improve his questionnaire. As it is, he has added to stuff compared to when I participated five years or so ago, so that is good. But man! I would look at the various sensations that accompany PEM, like a poison feeling that can start in one's hands and spread throughout a body, even to a point of tasting poison, and stocking glove effect, and pins and needles in extremities, and sight deterioration, and vertigo and nausea, and migrating joint pains (where and degrees etc), and a full array of cognitive metrics like judgement and spatial issues and degraded response times, as well as math declines and speaking vs writing vs reading issues, and sudden lapses into dyslexia where before there had been known history, and dropping comprehension in the middle of a read or conversation, and severe memory issues that fluctuate and span short and long term memory.

    I would look more at weakness, although he does address this. But really drill down on it. Like inability to push up, to stand up, or to turn things with hands, to focus or concentrate etc.

    And how all this is part of daily life, only amplified and all mixed up with PEM - and depending on which activities have triggered the PEM (since this can govern which symptoms are exacerbated, too what degree, and for how long).

    I know tired/fatigue is a component, so it needs to be in there, but Geez! the degree to which he concentrates and dedicates really simply adds to an overall misconception of what this disease can entail, imho. I do appreciate that for some, fatigue IS the principle symptom worsened with PEM, but not for everybody, and I suspect, not for many. It is - for many, myself included - the entire..gestalt, the amalgam. And for me, I hate the cognitive deficits, because those are deficits that, in part, affect me as I define me, and as I think others used to define me as a person. We are as we think, not what we can do, or how we are perceived, so this particular symptom worsening is repugnant to me.
     
    Last edited: May 14, 2015
    Tammy, Chezboo, Sidereal and 7 others like this.
  6. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,781
    @duncan - The questionnaire spends a lot of time asking about preferred and acceptable terminology, so it's the perfect opportunity to have your say on that. I also dislike the "tired", "fatigued" and "unrefreshing sleep" crap, so rated those options as lowly as possible.
     
    WillowJ, SOC, ahmo and 2 others like this.
  7. cigana

    cigana Senior Member

    Messages:
    965
    Likes:
    777
    UK
    As usual, there were many things wrong with this questionairre. It comes from a healthy person's persepctive, and many of the answers were not self-consistent.

    Use of words like "exertion" and "physical activity" are wrong, because they mean something very different to a healthy person. There always needs to be a comparison to pre-illness levels.
     
    SOC, Chezboo and Nielk like this.
  8. cigana

    cigana Senior Member

    Messages:
    965
    Likes:
    777
    UK
    I really agree. To me, it's as if he doesn't "get" this disease at all.
    I realise he's an ally, but if that's the best he can produce after so many years working on this specific topic then I have to say I'm disappointed. One of these doctors needs to start asking patients to write the definitions, because healthy people fail every time.
     
    Tammy likes this.
  9. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,234
    Likes:
    21,347
    Albuquerque
    That was my impression while filling out the survey. I took every opportunity to point out areas they hadn't differentiated such as the type of exercise and the physical position while performing it. For instance, I can do a reasonable amount of leg exercise, lying down on a pilates reformer. I could not begin to do anything comparable while standing. They also didn't differentiate between aerobic and anaerobic exercise. I wrote about the importance of pacing with a HR monitor and staying below my anaerobic threshold. I hope someone takes note!

    They also jumped on their time of onset from adolescence to "the last two years," which misses many of us out.

    Sushi
     
    SOC, Mij, zzz and 3 others like this.
  10. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    i too had some questions about the details of this survey, so i totally understand what many of you are saying, and i agree with a lot if it.

    my personal impression is that he and his team are genuinely interested in finding out what we need, want and why; what our experiences are like. and to me they seem quite open and willing to learn from us, and follow to where we want to guide them, in order for them to understand where we are coming from. perhaps i'm naive, perhaps i'm wrong, perhaps it will change, but this is the impression i currently keep getting.

    for example, this is what lenny himself answered me in an email about this particular questionnaire: [this is exactly the type of feedback] "that we need to better think about what items are good and which are not good. We have put about everything in the phrases that we could think of, and fully expect to get some items and phrases that are really bad." (my emphasis)

    both lenny and his assistant have been very quick to reply to emails and questions, and they seem to really appreciate all kinds of feedback, so i'd like to encourage all of you to email your thoughts and questions to them, if you can't find a way to fit them into the questionnaire itself.
     
    Hutan, oceiv, Valentijn and 3 others like this.
  11. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    i would be very interested to know how you guys interpreted the question on page 6: "For the following questions, we would like to know how accurately you feel the word or phrase describes what leads to post-exertional malaise. For each word or phrase, please select one choice for accuracy."

    For example "Extracurricular activities, sports, or outings with friends". From my personal perspective I would say that's not at all accurate; it's a useless description because it doesn't give a fair/representative overall picture of things-that-lead-to-PEM, and it doesn't relate to my personal situation at all (I'm severely ill, totally unable to even try them).

    On the other hand, technically it is very accurate that those activities (and much much less) would cause me PEM (if I were well enough to try them).

    so, what kind of answer are they looking for? should i check 'not at all accurate' or 'very accurate'?

    how did you guys read that question?

    i did ask the research team through email and got replies from both lenny and his assistant. but i'm still not sure, haha! (yeah, that's a problem...) english isn't my first language, so it's possible that has something to do with it...
     
    oceiv and Valentijn like this.
  12. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,227
    Couchland, USA
    FYI Lenny was himself diagnosed with CFS.
     
    mango, oceiv and WillowJ like this.
  13. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,781
    Options can be technically accurate but still very misleading. And if they are misleading, they are not good options.

    My biggest current peeve is "unrefreshing sleep". Technically accurate, but I don't wake up and think "Alas, I feel unrefreshed this fine morrow!" Instead I wake up think, "I feel really damned sick ... AGAIN." Part of that includes being unrefreshed, but focusing on that completely misses the essence of what we experience.

    If otherwise accurate descriptions are minimizing or shifting our experience of the symptoms, then they aren't accurate enough. They need to be comprehensible to people without ME, and people without ME aren't going to get an accurate impression from "activities, sports, and outings" nor from "unrefreshing". Nor from "fatigued" or "tired", for that matter.
     
    SOC, Kyla, leela and 4 others like this.
  14. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    this survey is still running, it's not too late to participate!

    an excellent opportunity to let them know more about our experiences, in our own words, and for us to help guide them in the right direction :)
     
  15. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,459
    Sorry, I just couldn't do it. My research engineering-trained mind balked at answering questions inaccurately or incompletely. There was SO much wrong with so many questions in this questionnaire, that I couldn't feel that my answers would be interpreted in any way that would accurately represent my situation or condition. I didn't want to feel that I participated in something that grossly misrepresents ME/CFS.

    I really wanted to do this. I really did. I think Lenny Jason is one of the good guys and would like to help further his research, but this particular questionnaire was just so far off base I couldn't see the benefit. I know I could have spent a lot of time writing in all the places I thought it needed correction or clarification, but I don't have the time or energy to do that -- at least not to the extent I felt it needed. I would have had to spend days on it given my cognitive limitations.

    Knowing that Lenny understands ME/CFS pretty well, I wondered if this wasn't a graduate student project that Lenny did not review in great detail before putting it out there. Not criticizing Lenny here; lots of graduate research advisers don't micromanage research projects. But whoever wrote that questionnaire did not seem to have done anything like sufficient background research into ME/CFS symptoms or experience. As others have reported, it is written from the point of view of a person who has never experienced any kind of ill health, much less ME/CFS. It seemed completely clueless about what we face on a daily basis.

    I hope some good comes of it, but this is one piece of research I simply couldn't manage to participate in.
     
    Last edited: Jun 4, 2015
    mango, Sushi, ahimsa and 2 others like this.
  16. ahimsa

    ahimsa Sick since 1990

    Messages:
    1,844
    Likes:
    4,268
    Oregon, USA
    @SOC - thanks for posting your message.

    I thought it was just me that had trouble with that survey. Was it just a bad "brain fog" day? Was I being too picky about wanting to choose answers that fit my situation? I finally decided to quit the survey.

    I've been afraid to post about this because I don't want to be seen as being critical. I am not criticizing the study or the questions. I don't have the expertise for that. And I am so grateful for any research that people are doing on ME.

    I am just saying that *for me* it didn't seem to make sense and so I was not able to finish the survey.
     
    Tammy, SOC, Mij and 1 other person like this.
  17. duncan

    duncan Senior Member

    Messages:
    2,022
    Likes:
    4,449
    Hmmm...that is troubling. I participated in a L. Jason team phone survey about five years ago, and the same thing happened with me. I actually stopped the girl doing the interview several times to gently advise her the questions were dangerously vague and/or misleading. I was concerned about some queries contributing to common misconceptions, and I told her so.

    She said she would pass on my comments.

    Oddly, about a month or so later, I got another call from his team conducting a "follow-up" interview. I was having a bad brain day, but I was almost certain it was exactly the same questionnaire - as if they were trying to see if I would alter my answers.

    I voiced my confusion, but completed the survey anyway.
     
    SOC likes this.
  18. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,221
    Canada
    Not just you.
    There were a ton of questions where none of the options fit, and quite a few where I couldn't figure out what they were asking.

    There was one section that was a list of activities and how often you had been effected by doing them in the past week(something like that), but lots of things like playing sports which are well beyond my capabilities. So do you answer that you are very effected by it because you can't do it? Or not effected at all because I had not done it. Blerg, I can't even phrase what the question was or the problem with it. But it did my head in. Anyways, that is the point at which I quit.

    Maybe the whole survey is actually measuring brain fog and how far you can get in a frustrating test ;)
     
    SOC and mango like this.
  19. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,973
    @SOC and @ahimsa, there's no need to apologize or hesitate to share your thoughts on this! :) i get what you're saying, and i agree with a lot of it. also, i can't imagine lenny wouldn't be interested in this type of criticism too.

    i'll echo what i said before: they seem to really appreciate all kinds of feedback, so i'd like to encourage all of you to email your thoughts and suggestions to them, if you can't find a way to fit it into the questionnaire itself.

    you both have so much valuable experiential knowledge, insight and clarity about PEM to offer, and i believe that this team would really benefit from hearing what you have to share. having said that, i totally understand and respect your decision if you still choose to not participate.
     
    SOC likes this.
  20. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

    Messages:
    721
    Likes:
    4,221
    Canada
    Maybe there is some way we can tell the researchers that the questions are confusing?
     
    SOC and mango like this.

See more popular forum discussions.

Share This Page