May 12, marks World ME Day – a day to shine a light on this debilitating complex chronic illness.
Watch this powerful new story by Zoe Madden Smith and read about Tammy and Glenys Rumsey’s story here: https://www.1news.co.nz/2025/05/12/mysterious-fatigue-illness-traps-people-in-their-bodies/
Watch here (16 minutes): https://www.tvnz.co.nz/news/news-in-depth-str-2wk511qgg0gjdnqqimytlj6ohfa-1746983905003/me-chronic-fatigue-syndrome-the-illness-trapping-people-in-their-bodies-in-depth
Watch Glenys Rumsey speak to Breakfast, alongside ANZMES President Fiona Charlton here (9 minutes):
At 12 noon, visit ANZMES YouTube channel, Facebook or LinkedIn page to hear Jaime Selzter from #MEAction speak (1 hour) about ME/CFS, diagnosis, severity, psychologising, and more.
Join the ANZMES Executive Committee as we ask the government to transform lives:
Journalist Lisa Davies will also cover ME/CFS on the 6 o’clock news TVNZ tonight. Stay tuned!
We’re seeing a sharp rise in cases globally. Some studies suggest prevalence has increased up to 15-fold and that nearly half of all people with long COVID meet criteria for ME/CFS. Some say it is now 1 in 22 people. While it may not be quite as dramatic here in Aotearoa, due in part to our early border controls, our estimates suggest the number has jumped from around 25,000 to a conservative 65,000, meaning thousands more are now living with this debilitating condition.
Since the pandemic, ME/CFS has gained more media attention, and increased research—particularly through long COVID funding, since both are infection-associated chronic conditions. But despite this progress, awareness is still lacking, especially for severe and very severe forms, like what Tammy and Rhiannon experience.
Raising awareness is crucial —but there’s still a long way to go. Healthcare professionals and policymakers need to be fully informed to ensure best practice guidance is followed in healthcare and policy decisions, including access to vital support services.
The government has not implemented reclassification despite ME/CFS meeting the government definition and the United Nations definition of disability. Even though, after our petitions, back in 2012 the Health Select Committee recommended reclassification and in 2023 advised Whaikaha to amend eligibility criteria for people with ME/CFS to access disability support services. This has not happened.
We’ve had two explanations for why ME/CFS still isn’t officially recognised as a disability. The first came from Health NZ the Chief Executive of Allied Health, speaking to the Health Select Committee on behalf of Te Whatu Ora. They claimed that the same support services are already available under Long Term Conditions. But in reality, that’s just not how it plays out for people with ME/CFS. The condition’s severity is often overlooked. NASC assessments for home help are designed for people either over 65 or requiring 24/7 care. But even those at that severe end only receive 21 hours of care per week—despite needing round-the-clock support.
The second explanation – and a vital clue as to why there’s been no change – came from Whaikaha during the Advisory Panel on eligibility criteria which ANZMES was a part of—before the new government disbanded it. They admitted that there simply wasn’t enough funding to include everyone who meets the definition of disability in DSS. In fact, Whaikaha was told it had overshot its budget and needed to cut costs.
What this really tells us is that the government has no idea how much funding is actually needed to support every disabled person in Aotearoa. But the solution is simple—they need to talk to us, listen to what’s required, and increase the budget accordingly.
If ME/CFS were officially recognised as a disability, it would bring much-needed legitimacy to the condition—hopefully putting an end to outdated and harmful ideas that it’s psychological.
For those at the very severe end, like Tammy, they can get 21 hours per week. But that leaves families taking on full-time care at enormous personal and financial cost. This disrupts entire families – leading to loss of income and independence, like we see in Glenys’s case. So more funding is required there.
But reclassification would also help the moderate-severe who currently don’t qualify for ANY home help but desperately need it to prevent their condition from worsening. We know that early intervention and appropriate support improve outcomes and would stop more people from ending up very severe.
This isn’t just about recognition—it’s about ensuring people get the care they need NOW before it’s too late. The cost of doing nothing is an increase of people requiring round-the-clock support, and the government has a responsibility to prevent this.
