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Online ME Quiz content help

Discussion in 'Advocacy Projects and Campaigns' started by Web Monkey, Apr 20, 2018.

  1. Web Monkey

    Web Monkey Established Member

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    Hi,

    I’m working on a new online quiz to help raise awareness and am looking for help with content/questions/answers.

    The idea is to have a very basic website, me-quiz.com, it will be aimed at the general public who have no prior knowledge of ME. the questions will focus on dispelling the common myths, like it’s not just fatigue, you can’t give blood etc. It will be multi choice and provide detailed answers to help educate people. Im thinking about 5-10 questions and and would love to get it in time for millions missing.

    Will try and post a link to a test website later today/tomorrow. I just wanted to see if anyone was interested in helping.

    Thanks
     
    Inara, Hutan, alktipping and 13 others like this.
  2. Graham

    Graham Senior Member (Voting Rights)

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    Nice idea! I'll leave my subconscious working on it this afternoon.
     
    Alvin, alktipping, Melanie and 4 others like this.
  3. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Good idea.
    One thing, though. You can’t/shouldn’t give blood.
    https://www.donateblood.com.au/faq/chronic-fatigue-syndrome

    http://me-pedia.org/wiki/Blood_donation

    https://www.redcrossblood.org/conte...d/how-to-donate/eligibility-requirements.html
    “You must be in good health and feeling well.”
    That would tend to exclude an M.E. patient even if we aren’t formally on the U.S. Red Cross list, like we are in Australia.
     
    Samuel, alktipping, TiredSam and 3 others like this.
  4. andypants

    andypants Senior Member (Voting Rights)

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    I'll help as much as I can:) Very limited cognitively these days though, so I have an easier time of it when there's someone else's suggestions to build on. Awaiting brilliant ideas to inspire me!;)
     
  5. Trish

    Trish Moderator Staff Member

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    If you want a source that most succinctly answers key questions, I think the new New York State department of health summary is the best I've seen.
    https://www.health.ny.gov/diseases/conditions/me-cfs/

    I think if I were starting from scratch designing a questionnaire, I might use that as a starting point. The topic can rapidly become overwhelming.

    Good luck with it. I'm sure you'll get plenty of helpful feedback here.
     
    EzzieD, Inara, Samuel and 7 others like this.
  6. Andy

    Andy Committee Member

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    Make sure you write down where you leave it Graham, you know what your memory is like.. ;)
     
  7. Web Monkey

    Web Monkey Established Member

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    Thanks sorry yeah that’s what I meant, damn brain fog, that’s why I need help with content :)
     
    Last edited: Apr 20, 2018
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  8. Web Monkey

    Web Monkey Established Member

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    OK heres gos.

    Its a first stab really, super basic, latin as place holder text for answers and info.

    I want to keep it simple, something a non ME person who is not an avid reader can learn a few key points in 5 mins. Something pwME can ask friends and relatives to try as an educational tool.

    It kinda feels like there's too many questions at the mo I’m not sure.


    http://me-quiz.epizy.com/index.php

    I want to add some facebook/twitter share score functionality and try and record answers in a db.

    Any feedback welcome.
     
    Last edited by a moderator: Apr 20, 2018
  9. Melanie

    Melanie Senior Member (Voting Rights)

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    Orthostatic Intolerance (as severe as POTS) OR Cognitive Issues are symptoms.

    GET and CBT has been removed from the CDC treatments page and from the NY Dept. of Health treatment recommendations.
     
    Inara, alktipping and Web Monkey like this.
  10. Melanie

    Melanie Senior Member (Voting Rights)

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    @Web Monkey Also, you could ask about the hallmark symptom of PEM and if they know that there is a worsening of symptoms, often 24-72 hours, after a patient exerts themselves.
     
  11. Adrian

    Adrian Administrator

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    Looks like a false alarm that they have corrected.
    https://reports.adguard.com/en/me-quiz.epizy.com/report.html


    Moderator note: A number of posts have been deleted from this thread related to the safety of the linked website. The website has been found by forum admin to not present a phishing risk.
     
    Last edited by a moderator: Apr 20, 2018
  12. Adrian

    Adrian Administrator

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    (Edited by moderator to reduce confusion that might arise resulting from deletion of other posts.)

    As a general piece of advice if you are concerned about a link it can be worth running it through virus total first before going there
    https://www.virustotal.com/#/home/url
    They run the link through a collection of different AV systems and normally flag up sites containing malware.
     
    Last edited by a moderator: Apr 20, 2018
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  13. alktipping

    alktipping Senior Member (Voting Rights)

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    unfortunately I got 8 out of 8 right but then I have more than28 years of m. e experience. sensible questions but how are you going to bust the media propagated myths.
     
    adambeyoncelowe likes this.
  14. Bill

    Bill Senior Member (Voting Rights)

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    Sorry, but I think the quiz perpetuates its own falsehoods and unproven assumptions.

    Bill
     
    oldtimer likes this.
  15. Graham

    Graham Senior Member (Voting Rights)

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    It's a fun little quiz, with a few typos, but the danger with this sort of thing is that, in an effort to create something simple, you end up with things that aren't quite right. There are two sorts of problems. The first is that, say, with the question on donating blood, or on research investment, the statements are true only for specific countries or specific years. The second is that there isn't actually any sort of formal proof or even general agreement about what ME is: the amount of aggro that is stirred up by just using the term ME/CFS instead of ME is impossible for an outsider to get their heads around.

    So, is it a reasonable taster for people who know nothing about ME? In my opinion, yes, it's good. Does it help correct wrong views? Yes, but we could do with some more daft answers, like exercise yourself fitter etc. Say a choice of 4 for most questions. It's on a par with lots of Facebook type quizzes. The idea is just to attract more attention to looking at things properly.

    Are you likely to get a lot of heavy duty flak from people who know much more about ME? With absolute certainty. Bill's comment is a fair and honest one - I'm thinking you would have to be prepared for some long and unpleasant tirades from people whose aggression is well-known.

    I think the tricky bit will be when you produce the comments underneath any right or wrong answer. It's really hard to be precise and brief with such a messed-up condition, but they will enable you to clarify the choice.

    I'm assuming your test is US based.

    So, have you done a good job? Yes. Do I ask too many questions? Yes.

    Now for the editing.
     
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  16. Bill

    Bill Senior Member (Voting Rights)

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    I'm finding it increasingly bizarre to read that some folks don't consider fatigue to be a major component of Chronic Fatigue Syndrome.

    And as to what kind of disease we are suffering from, we have little to no evidence that points to a cause, nor do we even have a biomarker.

    Absolutism without evidence is the enemy of scientific reasoning.

    Bill
     
    oldtimer likes this.
  17. Web Monkey

    Web Monkey Established Member

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    Thanks graham I understand the difficulties and feedback, that’s why I posted it here rather than just put it out there. I’m only a few years in and am certainly no expert.

    To be honest my focus is the development of simple web projects to help raise awareness. I was looking to see what people thought and if anyone more knowledgeable is interested in writing questions/content.

    The questions are just a quick sample I threw together to demo the quiz functionality. It might be worth adding some questions about the number of definitions and their differences. Or the quiz could just focus on the flaws with PACE if that’s possible.

    No It’s not US based the figures were just the closest to hand, maybe I could serve up different questions/content based on country. Or do different quizzes on different topics, or different sized quizzes.

    If the quiz is going to cause more trouble than help, I could work on something else I’m open to ideas as long they are not to big or complicated I only have limited capacity.
     
    Last edited: Apr 21, 2018
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  18. Trish

    Trish Moderator Staff Member

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    Hi @Bill, I can see your problem here as most definitions of ME and/ or CFS list chronic disabling fatigue as one of the defining symptoms.

    I suspect objections centre around 3 things.

    Firstly fatigue is a feature of many other illnesses, so it is not useful in separating ME from other conditions, whereas PEM seems to be pretty unique to ME/CFS.

    Secondly because we all seem to have different understanding of what fatigue actually is.

    And thirdly because people, including some researchers and the uninformed public, conflate CFS with the single symptom fatigue, to our detriment.

    If you want to, you could start a thread on the fatigue question so members can share their thoughts on it.
     
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  19. Trish

    Trish Moderator Staff Member

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    Hi @Web Monkey, I tried your quiz and as expected got 8/8, but that's not the point - you aim is to inform the uninformed, not ME sufferers who already know the answers.

    I think there is a problem with quick quizzes done on line 'in passing' by people with no particular interest in the subject - they become guessing games, and if done quickly without bothering to engage with the explanations that accompany the questions, may end up reinforcing misunderstandings.

    To give a silly example, I sometimes play Trivial Pursuit with my family. When a question comes up that I've had before, I am much more likely to remember the wrong answer I gave last time than the right answer, because the wrong one was the one I gave most thought to in choosing my answer, whereas the right one was just a signal that I'd lost my turn, and I paid it little attention. But maybe I'm odd. ;)

    What I'm saying, in my long winded way, is I'm not sure that the quiz format is a good teaching tool on subjects where the participant has no knowledge. They can be useful for testing how well someone has learned something.
    I guess one possibility would be to give them a short summary of key points about ME, then challenge them with the quiz to see how much they have remembered correctly.

    I commend your keenness to do something useful to contribute to the advocacy process of educating the public about ME.
     
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  20. andypants

    andypants Senior Member (Voting Rights)

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    Maybe the point isn't really to educate them, but just to spread awareness of the disease and some basic facts. Like your Trivial Pursuit experience, players may not remember anything significant about the disease, but possibly they will remember to have heard of this disease before (and that they didn't have the right answer).

    You are more likely to read an article or follow a debate on a subject you already know of. Maybe a quiz won't magically make the entire world aware of ME/CFS and the myths surrounding it, but every little bit counts. I think sometimes it's counterproductive to be too specific or detailed, they won't remember it any better and it could easily lead to overwhelm.

    @Web Monkey if this is something that you have the capacity for, and you will enjoy the process, I think it's worth doing. But do it for yourself, because you want to.
     

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