How can we improve the quality of ME/CFS research and clinical care?

It might be good to do a list of the things we'd like to have and then prioritise (properly prioritise, by starting with just one project, as you say).

 

Or the government e-modules (although I prefer a more traditional format.
That was my thought too.
You just start with what's out there and make it better. There are enough things to change to make it unrecognisable by the time it's finished.

 

Can we come up with a version of this project in which publishing the outputs doesn't depend on having a website in addition to the forum? As you say, creating a website with the forum embedded would be a major undertaking and would depend on people who are already overstretched.

As an example of what we could do, we already have a 'read only' subforum of 'how to' instructions for various things. What about a new 'Resources' subforum (that would have a simple name such as s4me.info/resources, which would make it easy to advertise), with each thread titled with whatever the resource was ('Hospital passport for people with ME', 'What is ME/CFS?', 'Understanding orthostatic intolerance', etc.), and containing only a single post that contained the relevant document as an attachment?

If we can eventually produce a website, then great, but time is of the essence, let's not let the perfect be the enemy of the good, etc. - and it would be a huge boost to contributors to see their stuff going public as soon as it's ready rather than dependent on a website that may never happen.

 

Brilliant! Shall we start by making a list of this stuff to prioritise? (My favourite thing is to make a big list before narrowing in on the best project but I'm off to bed now!).

I'm really excited about this. I think this is what the forum was made for. We could make a really good contribution and help lots of PwME.

And hopefully get the charities to raise their game while we're at it.

 

One suggestion that might make an information section of the website easier to create is using MediaWiki software (same as Wikipedia and MEpedia).

Editing rights can be given only to specific people, so it's not a free-for-all like traditional wikis. Or most of the main pages can be protected, but anyone can create their own pages that are like "drafts" which are semi-hidden, and then request they be added to the main area when complete.

And there are many customizations that can be applied to make it visually look nothing like Wikipedia, if desired. (Never done much with this though.)

MediaWiki isn't too hard to set up (I did it a few days ago thinking it might work as a way to compile structured findings of studies, but I don't think it will work well for that), and I think once it's set up it would be less daunting to contribute, since it makes it easy for people to add a bit at a time and allow others to easily edit and add to the same documents. As opposed to if it was a more static site where only one or two people had edit access and if others have suggestions they have to go through them.

A basic start could just be setting up the wiki, adding a link to it in the top navigation bar next to Home and Forums, and making the wiki have the same header so it feels more like it's part of the same site.

Also just found something called VaultWiki which is more seamless with XenForo (this forum's software). An example of how it looks: link

 

Not your fault, obviously, @forestglip, but that VaultWiki page looks very cheap and tacky! Whatever we use, I think it's important that it looks as professional as possible, otherwise we're going to undermine the credibility of our materials. Design really sends a message.

 

Agreed, doesn't look great, but from what I can tell, the styling is customizable (colors, fonts, images).

The advantage is users don't have to make new accounts, the posting method is familiar, and wiki pages can be easily quoted on the forums like regular posts.

Maybe someone who knows graphic design can make it look nice - I'm awful at that.

Edit: This site uses VaultWiki and looks a bit more polished: https://crackedeggstudios.com/studio/

The first site I linked also uses a different forum software, vBulletin, which may be why it looks tackier.

 

Plus the added authenticity of there being a link to where discussions originated (even if it’s just the forum in general they get a sense of who is represented and depth of discussion etc)

I think being able to think about the content and starting with what as a combo effort we could do well (snd maybe within that some topics will seem urgent vs others) and one step at a time it

the quality would be a differentiator I’d hope but given many might be able to push through here or there for the odd thing then get payback and have to catch up on life I’m not sure any of us could predict easily a ‘sustainable’ level. Yet ie how many could be done well in what time without drop-off in diversity etc. On the other hand we might get a knack for ways of working /what works as an output.

the thing with website first might also be the need to have layout decisions/sections and then populate them (and you guess what ones you might have lots on or want to make the most of vs noticing feedback) so they don’t look empty vs it being organic to a point where it organises to sections which have a chunk of things. I guess it doesn’t mean that getting a domain etc and just having it there to play with (the embedding forum in seems like lots of possibilities there) is a bad idea in parallel to look into etc

 

Sub-projects like resources should probably be in a subdomain, ie https://resources.s4me.info

 

Here are some examples of sites with skins applied to MediaWiki (link text is names of skins):

Medik
Metrolook

These look more like standard web sites than wikis which might be better:
Tweeki
Chameleon

Honorable mention: Mask

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I think VaultWiki would be good, but I just noticed it's $15/month or $80/year, so probably too expensive.

I think using threads as "resources" looks very similar to regular actively discussed threads and not like polished final products. But probably the most important part is making sure people see that area. I basically don't think about the Resources forum at all as it's kind of hidden away.

Maybe there could be a home page that links to the forum part of the website as well as the resources part of the website. Maybe the home page would have one or two forum-related widgets such as "Most recent threads", and some high level info from the resources section, like links to categories, and most recent or most important resources.

Edit: I kind of frankensteined the top of S4ME onto the website with the Chameleon skin, and replaced the text with a page from the Resources forum. This isn't actually a webpage, I just stuck the code together in my browser to see what it would look like:

 

Hi everyone,

I just wanted to say that whatever you’re doing or planning to do to get the information from S4ME out into the “real world,” I’m all for it. I think it’s so important to amplify the work being done here, and I’d love to support that.

To help with this, I’d be happy to offer a donation if it could be useful in achieving that goal.

I’ve also always thought it might be a good idea for the forum to organize and fundraise for a single annual small (biomedical!) scientific project, something along the lines of the Ramsey Grant. If this would be interesting, I’d also be happy to help financially to some degree.

Thanks.

 

Thanks - that Cracked Egg Studios site looks much better.

I don't really understand the Wiki concept, though (tech dinosaur) and wonder if it would be better simply to keep things here on S4ME. The advantages that you list also apply to posting on a dedicated forum here, and it might be better initially to focus on producing outputs (or even just our first output) than putting effort into new infrastructure to show it.

 

Why? (Again, I'm a tech dinosaur!)

 

Same here, I never notice forums that aren't discussion forums because I only navigate by hitting the 'recent posts' button. But equally, I'd never visit that home page unless I had a reason. But a home page that links to the resources and the forum separately would be good, given that our main target is probably people who aren't already on the forum but the thousands of PwME outside.

 

When MEpedia was first set up it seemed a great idea. They initially asked me to help build basic resources but fairly soon after I was not contacted again, I suspect because I urged caution about some of the 'science' being posted.

I use MEpedia from time to time, probably mostly because it comes up early on Google searches and tends to have useful bits of information on people and dates, with citations. But we have not spent much time discussing their resources here.

I think the add-as-you go style of Wiki would maybe be easiest to use. We do not need to have pages on individuals (so you can look up who Tony Pinching is) or organisations. And it should not be an open access Wiki that all can edit. Presumably it would be possible to use Wiki style software in house and then have the result uploaded to pages that don't have the distracting editing tags and just look like finished educational documents?

 

So for instance if you start the page on MEpedia on ME/CFS, it is really awful:

https://me-pedia.org/wiki/ME/CFS

It is full of mistakes, typos and information only of interest to nit-pickers. It says nothing useful about ME/CFS.

The page on PEM drifts off into pseudoscience. It includes the sentence:

While in most fatiguing diseases patients experience symptom relief after exercise,[10][11] the opposite is true for ME/CFS patients for whom even minimal exertion may cause PEM.[12][13][14]

Which is nonsense.