JellyBabyKid
Senior Member (Voting Rights)
Really? I did not know that. That is disappointing as I keep being pointed to groups hosted on there and had hopes for some decent non-ME conversations.
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
United Kingdom: ME Association news
- Thread starter Peter T
- Start date
Really? I did not know that. That is disappointing as I keep being pointed to groups hosted on there and had hopes for some decent non-ME conversations.
Utsikt
Senior Member (Voting Rights)
It’s really dependent on the server in my limited experience.
ahimsa
Senior Member (Voting Rights)
That makes sense. It's not the platform at fault, it's who's running it and who is doing moderation (if any).
For example, I'll bet some groups use XenForo for forums that are full of garbage but I quite enjoy the Science for ME forum.
Kiristar
Senior Member (Voting Rights)
MEA and BHA (British Haematology Association - ifirc) respond to an article in the mirror about bloodletting...
meassociation.org.uk
The ME Association responds to unsubstantiated claims that bloodletting can treat serious medical conditions - The ME Association
An article in the Mirror explains that bloodletting involves drawing […]
meassociation.org.uk
Kiristar
Senior Member (Voting Rights)
The ME Association response to its criticism at the AG of not understanding is a survey for Pw severe ME. This is apparently open to non members as well as members so sharing here so people can complete it if they want. It is apparently rather long though!
meassociation.org.uk
Severe ME Panel Survey - The ME Association
Severe ME Panel Survey Severe ME Panel Survey Information This […]
meassociation.org.uk
I'll have a go at completing it later.
Just noting for now that they are also running a Zoom session for their members with severe ME. Good luck with that... I for one, even if I were a member, would not be able to participate in a Zoom session, and I'm at the moderate end of severe. I wonder how realistic it is for many with severe ME to participate meaningfully in a group session on Zoom.
Just noting for now that they are also running a Zoom session for their members with severe ME. Good luck with that... I for one, even if I were a member, would not be able to participate in a Zoom session, and I'm at the moderate end of severe. I wonder how realistic it is for many with severe ME to participate meaningfully in a group session on Zoom.
Sasha
Senior Member (Voting Rights)
The survey has 88 questions! For severely ill PwME!!!!!!!!!!!!The ME Association response to its criticism at the AG of not understanding is a survey for Pw severe ME. This is apparently open to non members as well as members so sharing here so people can complete it if they want. It is apparently rather long though!
Severe ME Panel Survey - The ME Association
Severe ME Panel Survey Severe ME Panel Survey Information This […]
Incredible
A mishap could happen? That's what Charles Shephard called it.MEA and BHA (British Haematology Association - ifirc) respond to an article in the mirror about bloodletting...
The ME Association responds to unsubstantiated claims that bloodletting can treat serious medical conditions - The ME Association
An article in the Mirror explains that bloodletting involves drawing […]
Patients could die from bloodletting when they already might have a lowered blood volume.
I have just bashed my way through the whole survey, in 2 goes.
By the end I gave up on the written answers.
It's a ridiculous survey with multiple variations on each question so I was repeating myself in some answers, and some questions are so open ended one could write a paper and others I had no idea what I was supposed to be answering.
I've no idea who designed it, but I give them Nil points.
By the end I gave up on the written answers.
It's a ridiculous survey with multiple variations on each question so I was repeating myself in some answers, and some questions are so open ended one could write a paper and others I had no idea what I was supposed to be answering.
I've no idea who designed it, but I give them Nil points.
sounds suspiciously like the PROM questionnaires
Kiristar
Senior Member (Voting Rights)
Yes, atrocious design and all on a painful white bg. Could have been massively simplified. Goes to show they do definitely need a panel of PwSME to sanity check what they produce!
MrMagoo
Senior Member (Voting Rights)
Mon dieu I have just done that survey.
The design was a “slider” where you move the dot along a line, from 1-10.
Except, the majority of the questions using this format required a yes or no answer, so no=1 and yes=10 or vice versa depending on the question
Do people not do training for their jobs any more? This is very basic questionnaire planning and formatting, why oh why make it harder for pwME by using a slider when a yes/no tick box would save energy? And…make sense generally?
Oh it’s in dark mode, whoop de do. We’ve made it accessible.
I can’t cope with dark mode either. It’s absolutely scrambled my eyes.