Emerge Australia Releases Report on National Survey of ME Patients

Share on facebook
Share on twitter
Share on email

Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia.
Despite compelling scientific evidence that ME/CFS is a serious, complex, acquired, multi-system disease, there is significant underfunding of biomedical research, treatment and support for people with ME/CFS in Australia.
Emerge Australia’s new survey provides credible, hard evidence of the terrible impact that ME/CFS has on the lives of patients and on those caring for them.

  • 46% of patients surveyed report that they are mostly bedbound or housebound.
  • 57% of those who had a full-time job prior to becoming unwell were unemployed at the time of completing the survey.
  • 74% said the condition had a strong impact on, or stopped, their participation in paid work.

In addition to this, patients and their carers are not getting a fair go from doctors or the health system:

  • 44% of respondents rated their Doctor’s level of being informed as poor / very poor.
  • 42% rated the service provided by their Doctor as poor / very poor.
  • 80% reported that it took a year or more for them to receive a diagnosis.

An additional key finding was that the vast majority (89%) of ME/CFS sufferers stated that they felt worse after increasing exercise and/or activity:

  • 54% reported feeling worse straight away.
  • 35% reported feeling better initially, but worse later.
  • (just) 5% reported that increasingactivity or exercise helped them to feel better.

This finding adds urgency to Emerge Australia’s call for the Australian clinical guideline to be updated, which currently recommends Graded Exercise Therapy as a treatment.
Read the full report on Emerge’s website:
https://emerge.org.au/emerge-australia-health-and-wellbeing-survey-2018/

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on email
Email

1 thought on “Emerge Australia Releases Report on National Survey of ME Patients”

  1. Well done Oz , for recognising the truth about this insidious illness. Good lives, going to waste and a drain on the economy.
    My own son, suffering its effects for nearly ten years. A life spent mostly prostrate, so weak he is unable to cuddle his .daughter .
    The truth is, Governments , Insurance Companies and the world of medicine are afraid to admit to recognition of ME, because of the cost involved in its treatment.
    Top marks Australia.
    Keep flying the flag!

Leave a Comment

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

Latest News

Logo for NPR's All Things Considered

NPR Features #MEAction in Series about Long COVID

NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.”  MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex disease have been living with

Read More »
Press Jungle Featured Image

#MEAction Swinging Through The Press Jungle

Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying to get the attention of the media is not as impossible as legend had it! This is Adriane, and as your Press Scribe, I’m here to write our way through this next adventure and make sure

Read More »
Research Lagoon

#MEAction Swimming Through the Research Lagoon

Hi, everyone! It’s Jaime, the Director of Scientific & Medical Outreach at #MEAction. During this week’s #MEAction Giving Adventure we swam through the Research Lagoon as we surpassed our second fundraising level of US $20,000/UK£14,820. While our fundraising format this year is fun and lighthearted, the work #MEAction is doing to advance research and clinical

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