Physiotherapy for severe ME/CFS

  • My partner suffers from severe ME/CFS and POTS and is bedbound, and is having more and more issues with pain, mobility and flexibility. So we thought a physio might be able to help with some passive exercises, massage, lymph drainage etc.
    Has anyone found a good physio in Sydney with relevant experience?
    If you're not in Sydney (and also if you are) and had physiotherapy or treatment from another allied health professional (for example a massage therapist etc.) you found helpful, what kind of exercises/techniques did the physio/allied health professional use?

  • Community Moderator

    Hi @Fee - I'm less impaired than your partner, but in case it helps, I once saw a physio (in the ACT) that helped with a series of stretches I could do in my recliner. The stretches helped a fair bit with muscle aches and pains. If this sounds like something they could manage (and it may well not be), there may be some value in investigating gentle stretches that they're able to do in bed. Massage was the other thing they recommended (and which helped me - not a big full-body massage or anything like that, but targeted massage of the muscles in question for relatively short periods, every now and again), so even if they couldn't manage stretching, learning some massages he could have could possibly help with muscle pain. Best of luck finding something that helps.

  • I see a physiotherapist from NSW via telehealth. I don't do hands on stuff, so it may not be what your after.

    He has been excellent for me and I feel he is a rare gem for people with ME.  We do anaerobic threshold monitoring (heart rate pacing) during the sessions of very gentle movement. He monitors for any signs of overdoing it.

    He has multiple severe ME patients and has come to recognise patterns in how our HR's can respond to movement. For example, occasionally my HR will rapidly drop in response to an exercise and he straight away will tell me to stop and rest. His noticed this happening in his other clients as a sign of overexertion and often appears to precede PEM.

    He is careful to avoid PEM and will not push you - in fact he has been very supportive of when I decide I've done the right amount. He says to put your energy towards life first and physio is the lowest priority. I never thought I'd find a health professional congratulating me on making the desicion to rest and respect my symptoms!

  • Community Moderator

    Hi @salty - we don't name health providers on the forums - too much of a legal quagmire in terms of the potential for it to be seen as recommended by (or criticised by, depending no the type of reference, but that's clearly not relevant to your post 🙂 ) Emerge. I've removed the name from your post, but strongly encourage you to PM Fee with their name 🙂