Differently Normal NZ

06/11/2025

NZ research! Just published. A study examining Kiwi experience of accessing primary care. It painted a pretty bleak picture. 18 Kiwis were interviewed. (While a small group, the in-depth interviews revealed a lot of useful info). The main themes identified by the group:
*Gaslighting and validation (lack of understanding or recognition by health professionals)
*Lack of support and unmet need (not providing management, referrals etc)
*Inequity of available care (LC knowledge is inconsistent between clinicians)
*Lack of upskilling of health care staff (GPs are busy, stressed, there are no mandatory training requirements)l
*Let down by the Government (lack of NZ government action - policies, funding)
*Self advocacy and its cost (Patients have to lead their healthcare providers)
*Throwing money at it (long haulers seek out alternative options which are not always research based, and might be risky and costly.
These findings were similar to international studies. It's clear: Covid isn't going away and we all need to do better by patients.
They made a number of recommendations. Fingers crossed that these recommendations will be examined by the Government.
RNZ interview: Researchers say healthcare system failing long Covid patients: https://www.rnz.co.nz/news/national/577991/researchers-say-healthcare-system-failing-long-covid-patients
Experiences of accessing primary care by those living with long Covid in New Zealand: A qualitative analysis Rhodes & Douglas (Nov, 2025) https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0324489

Background Long Covid is the persistence of symptoms beyond 12 weeks following acute Covid-19 infection. It is estimated to affect one in ten people and can be extremely debilitating. With few publicly funded long Covid clinics, most people rely on primary care providers as a first point of contact....

05/11/2025

🧡 How to Self-Refer to CCI Support

If you're living with ME/CFS, Fibromyalgia, Long COVID, or related conditions, CCI Support is here to help. Whether you're in the Bay of Plenty, Waikato, Wellington, or elsewhere in New Zealand, you can access our services.

✅ Steps to Self-Refer:

Complete the Self-Referral Form
Fill out our online form to initiate support.
👉 Self-Referral Form

www.ccisupport.org.nz/for-me/

Wait for Contact
After submitting the form, one of our Health and Wellness Facilitators will reach out to discuss your needs and how we can assist you.

Explore Our Services
We offer a range of support, including:
* One-on-one guidance
* The Towards Wellness Programme
* Support for you and your whānau

📞 Need Assistance?
Phone: (07) 281 1481 or 0800 224 787
Text: 022 658 0251
Email: info@ccisupport.org.nz

Our team is here to support you on your journey towards wellness. Don't hesitate to reach out.

05/11/2025

The World Health Network (WHN) is gathering stories to raise awareness about Long COVID. We want to hear from those with lived experience — patients, caregivers, clinicians, and advocates — so we can share your stories and help others understand the impact of Long COVID.

If your testimonial is shared publicly (in full or in part), it will include your first name (or initials) and your location (if you choose to share it).

💬 Share your story here: https://docs.google.com/forms/d/1wedgYAwzTFKXRxTFdHeTDhKpS24nbQGgWXnzMQjd8Xk/viewform?edit_requested=true

31/10/2025

So often neurodivergent people are told their asking for more info is rude, confrontational, demanding etc. In actual fact we often need more information so we know what to expect, and can best manage join in and manage our needs. It's not a power move, it's a straightforward, literal request with no hidden agenda.

22/10/2025

As NZ stockists for Stickman, we are so proud of the work they do in demystifying invisible disabilities

20/10/2025

Chronically Jenni, talking about invisible disability communication, featuring Stickman resources.
FYI, Differently Normal NZ are NZ stockists for Stickman. You can order through us. And the sunflower lanyards can be obtained for free from the airports at Auckland, Christchurch, Dunedin, Hamilton, Invercargill, New Plymouth, Palmerston North, Queenstown and Wellington, which have adopted the Hidden Disabilities Sunflower. Prior to your travel, you can request a free lanyard from the airport company, which you can collect at the airport to keep and use on future trips.
https://www.facebook.com/share/r/1ETgutfsp1/

If you're departing from other international airports, or would like to know more, visit the Hidden Disabilities website.https://hdsunflower.com/au/?_gl=1*en05ry*_up*MQ..*_ga*MTU3MDk4MjI0NS4xNzYwOTg4MDU2*_ga_QH2Q9GE934*czE3NjA5ODgwNTQkbzEkZzAkdDE3NjA5ODgwNTQkajYwJGwwJGgw*_ga_9NBHMF5E90*czE3NjA5ODgwNTQkbzEkZzAkdDE3NjA5ODgwNTQkajYwJGwwJGgw

19/10/2025

You are seen. You are believed. You are not alone

19/10/2025

18/10/2025

There's a first time for everything! First time on a podcast, talking about why rest isn't for sissies: it's hard!

Wowsers! Another week disappeared before my brain fog could catch up. Thanks to those of you who tuned in last night, to Episode 9 on Manawatu People's Radio. If you missed it (because I forgot to remind you), you can find it at www.mpr.nz/show/sickandtiredaotearoa

15/10/2025

I'm all about polite, or I try to be. What a nice way to talk about disability parking 😊

Look what arrived today!

Thank you to everyone who gave feedback on the initial draft. I've tried to make it gentle enough that I wouldn't mind it being left on my car if I forget to put my badge out, but clear enough that someone not disabled might think twice before taking a disabled space again.

And our other parking flyers re pavement parking and dropped kerb blocking are also back in stock.

06/10/2025

Dyslexia
This week is Dyslexia Awareness Week.
🔸️Dyslexia affects how the brain processes written language, making reading and spelling more challenging despite normal intelligence and adequate instruction
🔸️Children with dyslexia often have strong verbal skills, creative thinking, problem- solving, and big-picture reasoning, but struggle specifically with written language tasks.
🔸️It's very common, thought to affect 7-17% of NZr's, although there are no national figures
🔸️Early identification and intervention will lead to the best outcomes
🔸️This year’s theme is "Raise the Volume," focusing on amplifying the voices and experiences of young people with dyslexia.
🔸️Stickman makes excellent resources to explain Dyspraxia. Available in NZ through Differently Normal NZ
🔸️Key events include a nationwide "Light It Up" campaign illuminating over 20 iconic locations in aqua
🚥The Cloud: Auckland🚥Nelson/Tasman : The Richmond Sundial Square, the Clock Tower on Trafalgar Street, the Suter Art Gallery, and the Nelson Provincial Museum 🚥Tauranga & Gisborne: Wharf Street in Tauranga and the Gisborne Clock Tower🚥Cambridge Clock Tower
🔸️Additionally, Learning Differences Aotearoa Trust is running a "Dyslexia Champions Project" to share positive stories of individuals with dyslexia
🔸️Online Events: Dyslexia Support South is hosting online forums for youth and adults, with meeting dates listed for the year.
Educational Resources: Organisations like The Study Nook are providing resources and information for parents about dyslexia

Dyslexia Foundation of NZ https://dfnz.org.nz/
Dyslexia Support South https://www.dyslexiasupportsouth.org.nz/parent-toolkit/emotional-impact/increasing-dyslexia-awareness/
Learning Differences Aotearoa Trust https://www.ldalearning.org/
https://www.serviceiq.org.nz/about-us/equity/dyslexia-awareness

03/10/2025

Interested in participating in PEM research?
There's a new validation study open for the
DSQ-PEM version 2 (more details about the DSQ-PEM below). If you experience post-exertional malaise (PEM) or support someone who does, you are welcome to participate. They estimate it takes 10-15 mins. I had lots of comments on it, which it welcomes.
https://www.dsqpem2.com/?s=08
🔸️What is the DSQ-PEM?
DSQ-PEM stands for the DePaul Symptom
Questionnaire - Post-Exertional Malaise.
🔸️What it measures: PEM presence, frequency, severity, and characteristic features - a core symptom in ME/CFS also reported in Long COVID.
🔸️DSQ-PEM 2.0 is an updated version intended to improve clarity and accuracy of PEM measurement for research and clinical use
🔸️Why measuring PEM matters
~Research quality: Reliable tools help researchers identify PEM consistently, compare groups, and evaluate treatments.
~Clinical usefulness: Validated measures support better diagnosis, monitoring, and personalised management.
~Policy and trials: Strong measurement tools are needed for clinical trials, guidelines, and to inform healthcare services

https://www.dsqpem2.com/?s=08&fbclid=IwY2xjawNLwshleHRuA2FlbQIxMQABHti5_XPAVOPP8LB8pkMiyEACB9bM6WyIbFLWw_dXhn9fXhfqF19BKyJCcn1n_aem_aO3G3IVPPHeqvqEPAobl0Q
Taken from the FB page: Covid-19 Research Involvement Group
https://www.facebook.com/groups/covid19researchinvolvementgroup/permalink/4098772763714140/?app=fbl