Primer for family, friends and care providers - WIKIE MEpedia

Primer for family, friends and care providers - WIKI MEpedia

This Primer helps family, friends and care providers learn about ME/CFS in an easy to read format.

 

Thanks. I feel like I've not used MEpedia much until recently, and there's loads of good articles on there now.

I just started reading that, and wondered if it's a mistake to have the talk about what ME/CFS is not so early in the article, or to talk about the 'illness beliefs' model as being widely accepted in the UK?

 

I don't know. Do you edit? Anyone and everyone can jump in.

 

Oh, and if you do edit that page just remember that the Primers are basic and simple so people can get through them easily. If they want to know about Chronic Fatigue Syndrome or Post-exertional Malaise they can just select the links.

Unfortunately, the Myalgic Encephalomyelitis page is a mess, very hard to understand. That is a page that could use an overhaul.

 

I found it ok but a little too emotionally charged in places. There is quite a bit of editing I would do, but some of the issues (rephrasing CBT bit, changing the onset and diagnosis bit to include gradual onset rather than just focus on sudden infection route etc) would be so contentious that it probably would be a waste of time and be reedited backwards and forwards ad infinitum.

I think it would be good as a basis for your own personalised note to send to friends and family though. I wouldn't want to link to the site in case it's reedited after I've sent the link.

 

I never have. I could do though. Thanks, I'll bear it in mind.

 

It's a very heavy piece of work for an average person to read: the structure and style are aimed squarely at the well-educated and linguistically fluent. I honestly couldn't recommend it as a general primer.

In my experience (as a teacher), I find that most intelligent people have very little understanding of how difficult the average person finds such stuff, let alone those who struggle more with reading: they tend to describe their abilities in subjects other than their speciality as "average" when they are way above that. The Sun newspaper (UK) is pitched at the average 16 year-old.

Don't get me wrong: the content is very good, and thorough: I'm not knocking it, just redirecting!

A small group of us did try to provide a more basic introduction to ME on our meetup site (meetup.org.uk) under the "New to ME" tab. But even then there will be many people who find that too long and too complex.

 

Does anyone know if they're planning to add a section on worldwide rates of ME/CFS? I see there's a section on diagnosis and treatments for other countries, but I couldn't find an overview on comparative rates of illness...

 

Haven't linked to MEpedia to inform friends or family so far (and would need a German version) but find it extremely practical for myself. It's a quick way to find sources, links, citations, studies, info on people etc all in one place (e.g. I often use the PACE trial, exercise and PEM page). The main page is a little confusing and I can't see all topics there but use the search function. It's a work in progress and steadily improving.

I'd say it's definitely worth a try, if you're interested. This is not like the Wikipedia page where every edit is reverted in minutes, but a project amongst ourselves. I don't edit much on MEpedia, as I'm not a native speaker (so just add links etc), but I believe that editing is very, very welcome. I've checked the "discussion" and "view history" pages out of curiosity and there's no fighting/reverting (in comparison to the Wikipedia page where I've wasted my youth during the last weeks [on the German version]).

If you like you're welcome to just go ahead and add topics.

 

Thanks @Joh. If I knew the rates I would certainly be willing to add to the content. I've searched via Pubmed and Google scholar, and haven't found anything...yet.

 

I think it would be difficult to get comparative rates of illness because rates of diagnosis vary so.

 

Perhaps, but if we have a general idea in some countries like the US and Great Britain, I would hope there would be at least a few others that have similar estimates.

I did find this one, but it doesn't seem to be of very high quality:

https://www.jkom.org/upload/33-2 03(25-33).pdf

 

@dannybex - yes, we have to start somewhere with something.

 

https://twitter.com/user/status/945338515268755456

 

Can't say I particularly like "CFIDS Association says" or "Dr Bell says" as sources. It ends up a bit on the fringe in some aspects.

 

This Primer is very similar to the one written for the general public. There is one short very general article by Susan Jackson on what to do when someone you know has a chronic illness and one or 2 other minor references. As a carer this has no specific information and very limited general information for its supposed target audience. Very disappointed given the huge challenges involved in caring for someone with ME.

 

It can be edited by anyone but the text added needs to be referenced. The community is working on this and anyone who has information can add it.