ME/CFS Advocacy Down Under in 2016

Share on facebook
Share on twitter
Share on email

2016 was a big year for ME/CFS advocacy around the world. As we turn over the page to the fresh new year, we wanted to reflect on some of the highlights of the advocacy efforts of the #MEAction Network Australia group in 2016.

AWARENESS RAISING:
  • We participated in many awareness campaigns and activities during May awareness month (including #UndiesontheOutside and #SockittoMe campaigns, developed by members of our group). Several group members also did media interviews, and others were involved in organising buildings around the country to be lit up blue on (or around) May 12
  • We participated in the development of an Australian May 12 website: www.may12th.org.au
  • We participated in #MillionsMissing campaigns in May and September, as well as developed a video for social media using Melbourne singer-songwriter Naomi Flanagan‘s Millions Missing song, and running a #MillionsMissing Tweetathon to ensure that the event offered an avenue for participation for people who are bedbound and housebound
SUBMISSIONS & REVIEWS:
  • We developed submissions for the review of the National Disability Advocacy Program, and for the inquiry into the Auditor General’s “Qualifying for the Disability Support Pension” report, highlighting the specific advocacy needs of people with ME/CFS
  • Group members attended the Disability Discrimination Commissioner’s community consultation sessions to ensure that invisible illnesses like ME/CFS are on the Disability Discrimination Commissioner’s radar
RESEARCH:
  • We wrote to each state society urging them to join the call for the release of the PACE trial data (from which two of the societies wrote to QMUL in London in support of the release of the PACE trial data)
  • Members of the group have written to Andrew Lloyd’s Fatigue Clinic, expressing concern about the online GET/CBT training program that he is planning to offer to health practitioners
  • Members of the group have also written expressing concern about a study aiming to look at video games as a mode of exercise-delivery for people with ME/CFS

We’ve only just begun, and there is a lot more work to do, but we have shown how much we can do from our couches and our beds! We look forward to continuing to raise awareness, and advocate for Australians with ME/CFS in 2017.


If you would like to get involved, join our Facebook group:
[button_color url=”https://www.facebook.com/groups/837041443073622/?ref=bookmarks” content=”Join #MEAction Network Australia’s Facebook Group” target=”https://www.facebook.com/groups/837041443073622/?ref=bookmarks”]


Or, to stay updated, follow our Facebook page:
[button_color url=”https://www.facebook.com/MEActionNetworkAustralia/” content=”Follow #MEAction Network Australia’s Facebook Page” target=”https://www.facebook.com/MEActionNetworkAustralia/”]  

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Sign petition To Fix ME/CFS tracking In US!

In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the

Read More »

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

Read More »

#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS

Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).  Today, ME/CFS does not exist in the US ICD-10-CM. Instead,  most US doctors assign the code for chronic fatigue

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top