Discussion in 'MEpedia' started by Sly Saint, Aug 2, 2021.
Any chance someone could update the page?.
I hadn't read this before. It says Andy and I are the site owners. We're not. We're on the committee. The site is owned by Adrian who set up and runs the systems.
Perhaps the membership figure should be updated, too.
Edited to add quote from MEpedia:
Agreed. There's only about 50 to 75 active members who post regularly.
Well, the good and bad things about wikipedias is that anyone can edit them. Fortunately my computer remembered my login so I reverted the change. While I was there, I updated the membership to the latest figure (screenshot below taken this evening). Given that not all pwME will be able to post regularly, I see no point in artificially restricting our reported membership to those who do.
That's better, @Andy, thank you.
Could the first paragraph that says it is a British forum please be replaced with something like this (taken from the content of the forum welcome page)
Science for ME is an independent, patient-led, international forum for people with ME/CFS and similar illnesses, and for interested carers, clinicians, scientists and advocates.
I think it would be misleading not to include the figure of active members.
How would you define "active" members? I read every day but rarely comment as I'm too ill. I feel pretty damn active but the number of my posts after nearly four years of daily visits is not very high. I think Andy's right to not try and parse "active." It does leave out a lot of people who are unable to participate much.
There are ways to artificially inflate membership figures; not deleting the multitudes of spam applicants that flood in every week for example. Not saying that's what other forums do, just that reports of total members, or of active members at a particular time in a forum's history when many members were agitated about something, may not accurately reflect constructive activity. The daily number of posts, averaged over a year might be a better measure.
Besides, I don't think the size of a forum is the most important attribute. It's the old story of 'it's not size that matters but what you do with it'. The key thing is 'are we making a positive difference?'. That's a lot harder to measure, and different people will have very different views.
Relative to that, I think it might be worth mentioning on MEpedia that we have around 20 regional news threads, and a weekly ME/CFS news summary, connecting and informing advocates around the world.
I was curious though to see how many posts the forum has and how many Phoenix Rising has. We have 351,000. PR has 1,283,000. I think Science for ME is doing ok, given Phoenix Rising was created in 2003, and Science for ME was created in 2017 - and given that many of the members here contributed substantially to the Phoenix Rising post count prior to the establishment of Science for ME.
Of course, we could and should do more, to reach more of the people who share the forum's commitment to science and the advancement of the understanding of ME/CFS. But, there are lots of things that need to be done, and not enough energy or time for most of them.
Yes, of course it could, and I would be delighted if someone else did it. If it's left for me to do then I can't guarantee when it will be done.
I just wanted to second this opinion from Michelle. I'm new here, and barring major treatment breakthroughs, my cognitive dysfunction means I will never be able to contribute a great deal. I'm sure everyone like me feels an immense sense of gratitude and admiration for those who are able to do so much more, but I would still like to be 'counted'.
I, too, am unable to post all that much due to limited energy but am always here 'in spirit', reading every day and darned appreciative that this site exists. So I'd like to be counted as 'active' too.
Just a point of pedantry on my part: it started as a blog/website in 2003 but the forum did not begin until 2009.
Thanks Michelle, I didn't realise that - I just copied what a source - a source I can't recall - said.
I noted the number of messages before and after an approximately 24 hour period. For what it is worth, and all you keen observers of science will know that a single observation is not worth a whole lot:
Science for ME: 238 messages
Phoenix Rising: 202 messages
That suggests to me that, in terms of ongoing engagement, the two forums are roughly similar.
I think that S4MEs USP is, what many who have come here in search of information have described as, a Hive Mind.
historical events, specific research, who said what when, there is a strong likelihood that someone will have some info on the subject.
another main 'service' is acting as a hub where information can be shared for dissemination to the wider community.
S4ME has no doubt been successful in this respect, often highlighting issues that are then picked up by those best placed to give them the further investigation/coverage they need.
I'm not sure how this can be put succinctly but I think it is important that S4ME are not just seen as another 'support group' or 'bunch of militant activists'.
Indeed, I think a standard for websites is still things like Unique Users, visits and members - it is well-known with forums that there is an iceberg situation (seem to remember it being called 'lurkers' and there commonly be people who just comment every so often etc) re: those who comment vs those who read the comments. I think that reading comments is active, and if needed information on the Unique Users and visits is more appropriate than number of people who message as standard measures of that on the basis
Separate names with a comma.