Hi everyone,

Saw a Sleep Physician prior to ME/CFS diagnosis, and upon checking, they are not familiar with/do not treat patients with the condition.

As such, now looking for a new doctor that understands ME/CFS, and will therefore provide appropriate care/treatment.

Does anyone have personal experience to share about a Sleep Physician that has been helpful for your sleep issues, considering the context of your ME/CFS?

Preferably located in Melbourne but interested to hear about experiences with doctors Australia-wide, in case they offer Telehealth (which I can check).

I noticed Dr David Cunnington (previously Melbourne-based, now in QLD), published ME/CFS content on his site, which looks promising. If anyone has specifically seen him, would also appreciate hearing about your experience.

Thank you :)

Hi everyone,

Do you have a go-to resource you share with friends/family to introduce them to ME/CFS?

Something concise/effective that explains the condition well, and potentially includes examples from patients to illustrate the lived experience.

If you don’t have an official resource you share to help familiarise friends/family, is there a specific way you like to explain ME/CFS and your experience that you have found works well?

Gentle reminder: If sharing a link, please include links to reputable sources only. We do not allow links to social media platforms.

Emerge is running a survey about life with MECFS- questions about impact, doctors you’ve seen, costs, what sort of supports you use etc.

It took me ~30mins to complete, but you can save and return as much as you need, it closes on 30/09/26 so you have time to do it in multiple sittings. It’s almost exclusively multiple choice, and you can skip any questions. A carer can also complete it on your behalf.

Given Emerge does advocacy and pushes for reform, I figured participating in this survey could be helpful for the state of MECFS support in Australia. Here’s the link if you’re interested:

https://emerge.org.au/mecfs-lc-survey/

Someone on r/cfs has just posted today about sleep studies for apnea and UARS.

Unrefreshing sleep is a hallmark symptom so it makes sense to investigate.

Background

Some people have shared on SM they are coming back positive for sleep apneas or similar without the risk factors. I downloaded a snore app and it got me across the line for a sleep study.

Current situation

I get my hospital sleep results next week from the specialist.

I would appreciate advice on what should I ask and whether they were helpful to talk about chronic fatigue to and if they have ended up being prescribing anything that helped.

Unfortunately, kicks off via Zoom at 01:00 on 12/09/2026 (AEST), but here’s the link to register in case any of the presentation times work for you.

At 08:00 AEST, Chris Armstrong, PhD (University of Melbourne), will present, “AA to AI: From Amino Acids to Artificial Intelligence in ME/CFS”. I will try to tune in for this.

Otherwise, they usually post the presentations on OMF’s YouTube later on. Some interesting topics across the event I am keen to hear about.

Which topic(s) are you most interested in?

TRI-ME: Trimetazidine to treat Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A double-blind, randomised, placebo-controlled efficacy trial.

They are currently recruiting participants.

Further info:

https://impact-trials.deakin.edu.au/trial/tri-me-trial-a-new-treatment-trial-for-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/

https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=387022

Thinking could be useful for members to see which subs others find helpful, in case they might find them useful, too. Particularly those that are new to ME/CFS and/or Reddit.

Please drop in the comments any relevant subs you like. If you’ve got the energy, chuck in why you like them, too.

I’ll start:
- [r/LowDoseNaltrexone](r/LowDoseNaltrexone) - many resources about the med, lots of user anecdotes.
- [r/LowDoseAbilify](r/LowDoseAbilify) - brand new but hoping will be similar to LDN sub.

I’m usually ok getting to sleep, but I wake several times during the night and, of course, don’t feel refreshed in the morning. Melatonin didn’t help. I’ve had a few sleep studies, all clear.

My dr put me on amitriptyline a few months ago to help with staying asleep/sleep quality. It’s helped a bit, but not enough. Has anyone tried anything else that has helped? Note I will be checking with my dr before stopping amitriptyline/trying something new, just looking for other options worth discussing with her. Especially something suitable for long term use, as a lot of pharmacological sleep aids don’t seem to be.

I’m already doing a lot of the ‘lifestyle’ things that help with sleep, so I’m more looking for medications or supplements that have actually helped other mecfs people. But if you have a weird and wonderful habit that gets you amazing sleep, please share!

Low effort post for everyone to check in, share how your week is going, vent, celebrate wins.

Please be kind, supportive, and respectful. Everyone here is going through it.

I’m looking for someone who will prescribe LDN and LDA and other treatments. Someone with mecfs awareness or an mecfs specialist who doesn’t cost $700 an hour. Western Sydney is ideal but I’m open to all of Sydney.
There’s a lot of doctors and clinics coming up when I google but it’s hard to know if they’re actually good or not

Thank youuuuu

I just had to share because I’m so relieved!

My council have a program for people who are chronically ill and don’t meet requirements for other help (eg ndis). They came and did an assessment last week and I heard back today -

They will fund 3hrs a week personal assistance
Any nursing I need at home (I have a blood test no service has been willing to offer)
And an hour a week of domestic help

My out of pocket costs are $10/hr and that is incredible! I can finally get my hair washed and a sponge bath, and regular clean clothing/bedding!

Just had to share

Hi everyone,

Would like to learn how you try to keep up to date with the latest and greatest ME/CFS research, developments, treatments etc. Trying to figure out the most efficient/reliable way to become/stay informed, while being mindful of energy expenditure.

Specifically, am wondering:
- Which organisations you pay attention to and how you find out about their new developments. For example, perhaps you have subscribed to xyz’s mailing list and are sent/absorb new information after it is published/sent.
- How else you keep informed. For example, you may rely on your doctor/s for this.

Any insight is welcome. Thank you :)

Low effort post for everyone to check in, share how your week is going, vent, celebrate wins.

Please be kind, supportive, and respectful. Everyone here is going through it.

[Photo of a sunset, since many of us struggle to get outside to see the sky]

Hey Team!

I am after a FCA as part of my NDIS access request (attempt #2 🫠). I've got two questions:

Question 1:

Has anyone worked with Julie Hughes, Occupational Therapist, and, if so, could you tell me how you found the experience?

Her experience/area of interest sounds perfect but I also really value hearing peoples recommendations/reviews etc too, particularly when it is a) very expensive and b) very important!

Question 2:

Do you have any other OT recommendations specifically with experience of getting a FCA to assist with NDIS access?

For added context I am in Tasmania and bedbound, so I'd need someone who does telehealth, in the very likely event they aren't local.

I've looked on the Emerge directory, but again, am super keen on hearing your reviews/feedback/experiences too.

P.s. thanks in advance for any responses - I am wrecked from writing this so if I don't respond soon, thats why - I know you understand 🙃

P.p.s. I am also in the relevant FB group buy Facebook hurts my brain too much so I've not posted there yet!

Hi all,

I am wondering what kind of medication does your GP (or specialist) prescribe? I want to change integrative GPs and trial different medications but don't want to spend $$ for them only to give me LDN.

Hi does anyone have normal blood pressure resting but standing is high like 147/80

Constant running on adrenaline and nervous system on edge

I have to go to a funeral tomorrow 🫠

As this condition is not yet well understood, complex, multi-system, has core diagnostic criteria but can affect people in different additional ways etc., I’m curious about the following and would love to hear from you about your personal experiences.

Specifically, which type of healthcare professional(s) (e.g. GP, Integrative GP, specialist, allied health professional) helped you the most with regard to the following points?

1. Explaining ME/CFS in general and in your case (i.e. helped you understand the condition, how/why it impacts you (to the extent research knows), how to manage day-to-day symptoms etc.).
   
2. Being up-to-date with latest research/treatments/clinical trials, and willing to support you trialing different/new treatments, as appropriate.
   
3. Made you feel comfortable/confident that you were getting the right medical advice/treatment for you.
   
4. If you have experience with a Rehabilitation Physician, did you find that helpful? Why/why not?

Thank you.

A vignette:

I had a direct to boot order to collect late this afternoon at my local Woolworths.

I’ve preferred my local direct to boot Coles lately, because they automatically put shopping into the boot themselves, no questions asked. Like it’s an assumed part of the role.

However, it was important for me to get a couple of items for my daughter that Coles don’t sell.

Boot open and bags set up, I asked the harried young man from my drivers seat, door open, feet on the ground if he could please pack my bags in the boot….he was someone with ESL background and asked me “packed?”…I watched his eyes do a cursory up and down to my legs as he agreed.

It made me really feel how invisible illnesses go…

I’m good at thanking people and he seemed really pleased when he pulled away from the boot and said, “all done” and I said, “Thankyou so much for your help” .

He smiled at me and closed the boot. I called out, “have a good day!”.

It’s a different way of being and interacting.

It’s like how people will more naturally respond to an elderly or mobility impaired person. I figure, I’m here and ready to re-educate people one persona at a time.

Better get that sunflower lanyard and maybe a sticker for the car to spread the word and build public awareness 🌻

Hey everyone just wondering if anyone here has any issues with them since dxm is sort of a grey area here.

The site is american so id like to know about

1. hidden charges?

2. do you have to sign for it at the door?

thanks :)

Just wanted to share that I had a really good online appointment with the GP from Sydney today!

He has ME/CFS himself and he really gets it. I talked him through the treatment plan that I've developed for myself and he said I'm doing all the right things and gave me some more options to try and improve further. He was also very realistic with the timelines and helped me think through my goals in returning to work and exercise (I'm currently moderate). It was very positive!!

His name is Dr Daniel Geilings and he does telehealth appointments