I have now completed the four group sessions with the Leeds ME/CFS service. My estimation on this has been a very mixed bag. First of all everyone has been great – in particular the other patients have been very interesting to listen to. Hearing other people’s experiences has probably been the greatest benefit to me – just knowing “I’m not alone” is the bigest thing here in my opinion. People listening to what I have said – and agreeing with me – giving some validation if you like to how things are affecting me.
However, it does seem that the bigest part of the sessions have been about “stabalisation” of the condition: Discovering where we are and what we can do to stabalise our condition so we do not “bust and boom” too often. This is useful maybe – however as I have been waiting a long time for diagnosis let alone any kind of therapy – I have pretty much “got there” already. I mostly understand how things work with me and what I can do to help – although I am not always the “best” at it – I know when I fail and what I am doing wrong.
Due to this, I do not feel I have learned a lot from the process itself. I’ve done a lot of reading and most of what I have got from these sessions is mindfulness and meditation and how to “float my problems down a stream on a leaf”. That may help some people – I am not those people!
I believe that the greatest thing for me to do – and what I try and do all the time anyway – is pacing. However, little has really been said about pacing. Most of the excerpts from published work that has been used in these sessions are from an 2013 book which unfortunately contains some out of date ideas that are now contra to the 2021 published guildlines for CFS/ME by the National Institute for Health and Care Excellence (NICE). I find this a shame – but I believe a large part of this is that one of the authors works for the service – so it does partly make sense. In my view it would have been better if more time had been spent dealing with pacing but very little time has been. (an excellent book on this is Classic Pacing for a Better Life with ME https://www.amazon.co.uk/dp/1999641817. This again was published before the new guidelines but as it deals with pacing it doesn’t really discuss the more problematic therapy of Graded Excercise Therapy – or the use of Cognitive Behaviour Therapy as a curative tool).
Much more time in these group sessions has been on relaxing and a more rigid definition of what relaxing and resting are, than giving ANY suggestions as to how to really PACE yourself. We have had numerous “forms” to fill in for how we relax, how we rest, how we can improve our rest – but almost ZERO guidance on pacing beyond acknowledgement that this is a good managing tool.
They’ve talked about mindfulness, meditation, deep breathing, imagining your pain floating down stream on a leaf…….. But nothing I would find in the slightest help. These are all things related to cognitive behaviour therapy and more to do with “feeling better inside”. I do accept that feeling better inside can help with any condition – just l ike worrying yourself too much can make any condition worse. However, you cant “imagine youself better” from a broken leg for example.
I remain very sceptical. Now all the group sessions are over and waiting to hear what the 1-2-1 sessions will be like.
