Online ME Quiz content help

[Trish]

Maybe the point isn't really to educate them, but just to spread awareness of the disease and some basic facts.

You are right, raising awareness is a worthwhile aim. It was the teacher in me wanting to go the next step as well and educate.

@Web Monkey, please don't let my comment put you off. It was simply a personal reaction to your idea, and quite possibly not a useful one. What I was trying to describe has a different aim from yours.

 

[Web Monkey]

It’s ok Trish that makes sense, it’s good to get a teachers perspective. It’s a shame there isn’t a good explainer video, a quiz would be good to test people after theyve watched it.

Andy yes the aim is to spread awareness, get people interested and talking about it. I find it hard to get my friends and family to understand and wanted something I could send them. It’s such a complex topic, it’s taken my dad a few years to start getting it, he got 6/8 which is pretty good for a nonMEep.

 

[arewenearlythereyet]

My thoughts about this is that it’s a great idea to do a quiz, but I think the quiz on its own would be a bit limited in its use. It might be better having the quiz after playing a video or a sequence of conversations/scenarios where you inform the wider issues and context, perhaps describing the difficulties of living with mild moderate and severe M.E.?

E.g Amy is a mild sufferer ...she works part time in an office ...she is finding it difficult concentrating today and is in a pain flare ...cut to a difficult conversation with her boss piling more work on her desk saying ...sorry Amy you need to stop what you are doing and get this done before my meeting at 3pm. You could visualise this with pictures and speech bubbles etc

You could do maybe 4 different scenarios to keep it interesting and give context to some of the more disabling symptoms and show mild and severe with some stats on number of sufferers?

 

[Web Monkey]

My thoughts about this is that it’s a great idea to do a quiz, but I think the quiz on its own would be a bit limited in its use. It might be better having the quiz after playing a video

A video would be great I looked into doing one, a lot of people are using https://www.videoscribe.co/en/ a video whiteboarding tool, that takes drawings and animates them as if theyre being drawn by hand. It’s pretty easy to use but sadly my drawing/design skills are pretty poor.

A supporting website could be useful that goes into more detail. I could help build it, but its the content I struggle with, my brain fog is just not compatible with writing content.

 

[WillowJ]

Thanks sorry yeah that’s what I meant, damn brain fog, that’s why I need help with content

Sorry, easy mistake to make whether it was a misconception you wanted to clear up or one you wanted to assert. I should have asked instead of guessing.

 

[Trish]

There may already be a video that would be suitable to recommend people watch before answering your quiz. Perhaps people could suggest some.

Edited to remove repeated phrase.

 

[arewenearlythereyet]

A video would be great I looked into doing one, a lot of people are using https://www.videoscribe.co/en/ a video whiteboarding tool, that takes drawings and animates them as if theyre being drawn by hand. It’s pretty easy to use but sadly my drawing/design skills are pretty poor.

A supporting website could be useful that goes into more detail. I could help build it, but its the content I struggle with, my brain fog is just not compatible with writing content.

I was thinking you could do comic strip style cut outs using stock photos with the main information being in speech bubbles and a commentary at the bottom. I realise though that might be more work and expense than it sounds but there might be a way to cobble it using free images?

 

[Web Monkey]

Good idea, but I’m not sure I have capacity.

 

[Trish]

I think I may have found a pretty good video that serves the purpose well:
Open Medicine Foundation, 7 minutes, 'What is ME/CFS'

 

[Bill]

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.

I'm not persuaded that because fatigue may be a symptom of other illnesses that for that reason it should be ignored as a major component of ours.

I think the quiz is attempting to conflate simple fatigue with CFS as a means of getting a negative answer and it thereby perpetuates a falsehood that people with CFS don't suffer from fatigue, and that that is a very poor idea.

If the desire was to have a name that somehow incorporated PEM into the name (admitting "malaise" is far more problematic a term than fatigue, the latter of which seems pretty clear to me) then the pseudoscientific alternative myalgic encephalomyelitis is even more of a fail than one that recognizes that we suffer from a syndrome.

Bill