M.E. Awareness NZ launches website

R

RoseE

Senior Member (Voting Rights)
Our social media post... :)

We are excited to announce the launch of our new www.m.e.awareness.nz website.
____________________________

We have high hopes that this site will help us to make M.E. more visible in NZ, become a reliable source of information for health professionals, support our advocacy work and bring meaningful change to the lives of people with ME in NZ!

Key information that can be viewed and shared...

+ What is M.E.?

+ Diagnostic Criteria in use

+ Management strategies

+ NZ specific Support, Advocacy & Research

+ Resources

This week, this website launch, is one step of many.

Please share widely. Use it as a resource. And we welcome feedback and ideas for content.
Click to expand...

We really would welcome any feedback at any time!

n.b. The website might look a little familiar with those that visited the 20000Missing.nz site that was used around May 2019 Awareness week in NZ (and set up by two parents of young adults with ME based in Wellington). They have kindly passed the website /resource over, and we are making it our own.
 
Which criteria is that 20,000 figure based on? The population of New Zealand is about 5,000,000 meaning 1 in 250 people have ME. Seems a bit high.
 
DigitalDrifter said:
Which criteria is that 20,000 figure based on? The population of New Zealand is about 5,000,000 meaning 1 in 250 people have ME. Seems a bit high.
Click to expand...
Thanks for the question /starting the convo here :). This is what we have included in the What is ME? page...

EPIDEMIOLOGY
ME is not a rare disease, only rarely diagnosed. There are an estimated 20 million cases worldwide.

NZ prevalence data has not yet been collected. Overseas data based on a relatively tight ME/CFS criteria have quoted a range of prevalence rates from 0.11% to 0.42%, meaning between 5,000 and 20,000 people could be affected in New Zealand. However newer data from the USA, based on actual insurance claims for ME and CFS, has suggested a 0.859% prevalence rate – which could mean there are more than 40,000 people with ME/CFS in New Zealand.

By comparison the established prevalence rate for Multiple Sclerosis in New Zealand is 0.0724% (roughly 3,400 people). ME/CFS could therefore be anywhere between 1.5 and 12 times more common than Multiple Sclerosis. Research has found that (as mentioned in above quote), on average, people with ME are more functionally disabled than people with MS.
Click to expand...

I will check with the team on the source for those stats, but the references we have included at the bottom of that page are;
Are you familiar with those papers?

From a quick search I haven't found a discussion on the first paper here. Just the second...
I guess we won't know until there is a reliable biomedical test and prevalence research based on that. I wonder how many 'mild' cases are out there too.

Actions for our website team:
  1. You have highlighted too the need for us to get onto inserting note numbers in the content that would clearly indicate what reference relates to what statement. Thanks.
 
Just including feedback /usability critique here in this thread, from the website announcement in the NZ news thread...
https://s4me.info/threads/news-from-new-zealand-and-the-pacific-islands.4230/page-14#post-192790

NelliePledge said:
Looks good in terms of content a couple of suggestions in terms of useability. Looking at the what is ME section it is quite a lot of scrolling to get through it to find particular topics. If possible it would make it easier to navigate if the contents list had hyperlinks to the relevant headings on the page. Also for me the text is a little dense if you could increase the space between lines slightly it would be easier to read.
Click to expand...

Actions for our website team:
1. Provide a hyperlinked Contents list on the What is ME? page, so it is easy to move between topics.
2. Space the lines in each paragraph out a bit.
 
Actions for our website team:
  • Someone has asked that we have a way to print out the What is ME? page nicely.
 
If anyone is willing, we wouldn’t mind a few eyes reading the following page currently being edited. Looking out for obvious errors or opportunities to articulate the research in more accurate or more layperson-friendly ways.
https://m.e.awareness.nz/research
Tate’s research in particular is not my wheelhouse. At the first iteration the page highlights notable NZ research. We aren’t looking to critique researchers but rather to highlight their positive contributions to the body of research. (Critique in private; praise in public, right?)
The second iteration will be to briefly feature some notable research published around the world. Suggestions of what you feel should be included among maybe 5 or 6 pieces of international research about ME would also be helpful.
 
You must log in or register to reply here.
Back
Top Bottom