M.E. Awareness NZ launches website

Our social media post...

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.

 

Thanks for the question /starting the convo here . This is what we have included in the What is ME? page...

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;

• Dimmock ME, Mirin AA, Jason LA (2016) Estimating the disease burden of ME/CFS in the United States and its relation to research funding. J Med Therap 1.
  
• Valdez A, Hancock E, Adebayo S, Kiernicki D, Proskauer D, Attewell J, et al. (2019) Estimating prevalence, demographics, and costs of ME/CFS using large scale medical claims data and machine learning. Front. Pediatric. 6:412.

Are you familiar with those papers?

From a quick search I haven't found a discussion on the first paper here. Just the second...

• https://s4me.info/threads/estimatin...arning-2018-proskauer-et-al.7279/#post-134215
  Seems to be a lot of doubt about the .859% rate.

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

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.