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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Melbourne members: Treatments - Neuro rehab group, Zebras, CFS in-hospital programs, any advice?

Hello All. I'm looking into all my options as best I can after a fruitless search diagnostically. Still considering connective tissue disorder and looking at getting a second opinion from a rheumy, but have to start somewhere with treatment to try to get my life back on track (and even if the diagnosis changes I'll still have to look into these sorts of therapies anyway to some extent).

Personally I'm worried that the places I'm considering, particularly the in-hospital chronic fatigue programs, might just try to 'educate' on the basics like sleep, diet yada yada (this was my experience at the Active Health Clinic, and I didn't feel they accurately assessed my condition at the time and I ended up going backwards as the exercise was too light and it just didn't suit my temperament at all as I prefer variety). I know all the basics are important but I'm hoping for a more strategic approach for the more complex issues, I'm sure there's workarounds if you can find the right people to walk you through them! A main problem for me is adjusting and strategising through the brain fog, visual issues, accompanying anxieties etc. We all have specific issues, and the places that are just going to do 'pacing' I really don't think are going to cut it. There's only so many times I can hear this concept preached to me...and just telling us to slow down without providing the support and strategies do so (eg. help us identify problems and make changes) is not really helpful.

So many of these places are very expensive too, so if the brain trust could weigh in I think this would be a really good thread to have. Will come back with updates.