Lofty Health and Wellness

10/02/2025

It was such an honour to be invited as a speaker and also attend the other incredibly informative sessions at the .danlos Society Global Learning Conference in Brisbane over the past few days.

Caelum helped facilitate the POTS in EDS Workshop on Sunday, talking about an area he is passionate about - Heart Rate Variability. He also contributed to the Panel session on Saturday about Tech and Innovation.

Molly also attended the conference in person and was able to take away incredibly valuable information from each session.

Like many conferences, we were able to network (face to face!) with our amazing colleagues from interstate and overseas. Plus have so many wonderful conversations with the patient community who attended.

It's always a difficult decision for us to close down our usual work for a few days to attend a conference in person. We often feel guilty that we can't offer that time as appointments that we know our community needs urgent access to. However, we know it will help us to help our community in a better way than beforehand. And we are hopeful that other practitioners and people living with EDS/HSD receive some benefit from our contribution and networking.

Until the next one... 🦓❤️🦓

19/01/2025

Looking forward to being part of the POTS workshop (Sunday) and panel discussion about collaborative insights in the technology space (Saturday)

Plus a huge amount of collaborative learning to work with our EDS and HSD community 🙏

24/12/2024

As the year comes to a close, we want to take a moment to thank you for allowing us to be a part of your health journey.

A special thank you to all our amazing patients for trusting us with your care this year! We're honoured to have the opportunity to make a positive impact on your health and wellbeing.

This year has been filled with some challenges and special achievements. Your support has inspired us to do our best every day.

From our little team, we wish you a happy and healthy Christmas and a restful start to the New Year.

Thank you again for being part of our community in 2024. We look forward to the plans and opportunities to continue to help the invisible illness community in 2025

❤️ Molly & Caelum

04/12/2024

Super interesting preprint undergoing the peer review process at the moment.

For anyone using .health for monitoring to help with , this is a must read.

Findings demonstrate the use of mobile health tools for monitoring of symptoms and highlight the need for further research to integrate them into clinical decision-making processes.

01/11/2024

📢📢 Dysautonomia Awareness Month Fundraiser 2024 Final Update 📢📢

A huge thankyou 🙏 to everyone for sharing and donating to raise awareness and money for the Australian POTS Foundation.

As we are all aware, raising money in 2024 for charity is especially difficult with the cost of living. After a few donations yesterday, we are pleased to announce we reached the goal!

We're thrilled to announce the final amount raised was $1015. We have also made a $1000 donation, bringing the grand total to $2015!

🙏THANKYOU SO MUCH🙏

A few stats...
🚴‍♂️ 20hr01min & 260km ridden
🚶‍♂️ 11hr03min & 53km walked
🕑 31hours + 4min total time 🎯✅️
📏 313km total distance covered
🫶 17 donations from some amazing people
💰 $2015 raised for The Australian POTS Foundation!!!

Looking forward to planning next year's event!

13/10/2024

📢 UPDATE 📢
⏰️ Halfway through October!
🚴‍♂️ 14h13m/30 hours time completed
💰 $630/$1000 raised
🦵 2 sore legs 🤣
🙏 Thank you so much for sharing and donating 😊

Fundraising link: https://gofund.me/312bcfda

12/09/2024

📢 IT'S HAPPENING AGAIN 📢

I'm doing something silly (again) for and Lofty Health & Wellness are going to match every donation dollar for dollar up to the $1000 goal.

Although I love my mountain biking, and it's great for my POTS, this will be a challenge! I juuust managed to scrape through last year. I've done a few calculations and 30 hours will be very similar to the 500km last year.

Please share far and wide to raise awareness of Dysautonomia and POTS!

Fundraising link: https://gofund.me/01c18c72

12/09/2024

📢 IT'S HAPPENING AGAIN 📢

I'm doing something silly (again) for and Lofty Health & Wellness are going to match every donation dollar for dollar up to the $1000 goal.

Although I love my mountain biking, and it's great for my POTS, this will be a challenge! I juuust managed to scrape through last year. I've done a few calculations and 30 hours will be very similar to the 500km last year.

Please share far and wide to raise awareness of Dysautonomia and POTS!

Fundraising link in bio.

22/08/2024

Individualised movement plan for POTS, gets a big ✅️ from us! You can read a bit more below 👇

A group of doctors and physical therapists recently proposed a framework for approaching exercise rehabilitation in POTS and related autonomic disorders based on their collective experience working with our patient community. Rather than using rigid one size fits all protocols that many patients can't complete, they suggest: 1) comprehensive evaluation of the individuals patient's physiology and needs ; 2) individualized starting points for rehab based on the patient's physiology and needs; 3) the patient determining whether they are feeling well enough to advance to the next stage of rehabilitation; and 4) adapting commonly used rehab techniques to individual patient needs. Importantly, they note that exercise is only one part of an overall approach to treatment, which typically includes medication and other non-pharmacological measures as well.

We think discussing these concepts and sharing their experiences using an approach to rehab that is adapted to individual patient needs is an important step in the right direction, although understanding how this approach actually impacts patients will require more research.

Dysautonomia International is currently funding a study at University of Utah exploring the biological mechanisms of exercise intolerance in POTS. Understanding the biological mechanisms that cause exercise intolerance in POTS will help us develop treatments that address those mechanisms more precisely, which should lead to improved exercise tolerance and overall improved ability to function in our everyday lives.

Getting physical therapists and other rehab professionals trained on how to safely and effectively implement dysautonomia rehabilitation techniques will also require significant professional education efforts. Most dysautonomia patients are not being referred to skilled rehab professionals at all, and when we are referred, the rehab professionals we are seeing are often unfamiliar with our diagnoses or how to help us. Dysautonomia International is trying to change this by offering several in person and virtual clinician education programs throughout the year.

Read the journal article here: https://www.sciencedirect.com/science/article/pii/S2590109524000648

You can support Dysautonomia International's research and clinician education programs by making a contribution at https://www.CureDys.org or hosting a Facebook or IG fundraiser at https://www.facebook.com/fund/DysautonomiaInternational

22/08/2024

🗣 Most days when working with people who have POTS I get asked about my own journey. I can often share small snippets, but like many of us with POTS, it's not a short conversation.

🎙 I was thrilled to have the opportunity recently to share my story on the Challenges That Change Us podcast hosted by the wonderful Ali Flynn.

🎧 You can listen here: https://pod.fo/e/25f6bb.

🙏 As always, a big thank you needs to go to my wife Molly for being there the whole way through.

💙 Let's continue to work towards improving POTS awareness within health, medical, government and the wider community.

💙 This October is Dysautonomia Awareness Month and we are planning to support the Australian POTS Foundation with their 30BPM fundraising campaign - "Because POTS Matters". Stay tuned to see what we have in store! 💙

While you are visiting the Challenges That Change Us podcast page, be sure to check out all of the other great personal experiences that so many people have shared. Truly inspirational 🙌

25/03/2024

It was an honour to present a workshop for the during the Scientific Conference day on Saturday.

After attending the Better Together Conference for both the Consumer and Scientific days, this was a brilliant event and extremely well attended by both consumers and health professionals/researchers.

It was so great that Molly and I were able to catch up with so many clinicians from interstate that we work closely with.

Congratulations again to the Australian POTS Foundation for organising such a professional and informative event.

13/02/2024

Very much looking forward to this webinar and Q&A.

Next Seminar
Join us online Saturday, 24 February to hear Caelum Schild, Accredited Exercise Physiologist, whose professional and personal experience has shaped his passion to help those who are living with dysautonomia and invisible illnesses, speak on:
Pacing – understanding and using heart rate variability (HRV).

Following the presentation, there will be question time and then an opportunity to catch up with others.

Call opens: 1:30pm ACDT (time to acquaint yourself with Zoom)
Event starts: 2:00pm ACDT

Members and their carers are free. Membership is only $5.
If you are not currently a member and would like to attend the seminar online, please pay before 5pm Friday, 23 February.
Join or renew at: https://mecfssa.org.au/get-involved/membership
If you would like help in setting up Zoom on your device before Saturday, please let us know in the comments below.

We look forward to seeing you online.

If you are not able to attend on the day, members will be able to access both a recording of the talk and the slides from the presentation soon after, in the Member Resources area of our website.

EDIT: the video of Caelum's presentation is now available in the Member Resources area of the website. Caelum's presentation is simple, clear, practical, and ME/CFS-friendly.

For further details about the seminar: https://mecfssa.org.au/event/seminar-caelum-schild-exercise-physiologist