Earlier this year I completed all the group sessions for the Leeds ME/CFS Service – and also had two personal sessions with a occupational therapist from the service. The questions then are: What did I think of the service? Has it helped? Where do I go now?
For the group session perspective, I think it was an “ok” service depending on what you wanted to get from it. I did find listening to the experiences from the other patients very helpful. Didn’t give me really much to “do” but did confirm what I am feeling is expected from others etc. What I am doing, makes sense.
However there was – in my view – far too much “wishy-washy” talk of coping with ME by using meditations and “mindfulness” techniques like “Imagine a leaf floating down the stream – put your problems on the leaf and watch them float away from you and you will magically feel better”. I am not a violent person at all but whenever I hear things like that all I can think of is “Let me come and break your legs and then you can feel better by letting all that pain float away down the stream and it will all be good again”!
These come from a belief that ME is “all in the mind”. While they claim not to believe that – when their number one tool they push to people is “imagining it all better” – it’s clear that’s what they believe. I remember my initial consultation with them and how they said they aim to “make people better” – and ALL they’ve discussed is meditation and breathing.
While hearing people’s experiences have been interesting – there’s been nothing ACTUALLY helpful in the sessions. The nearest to helpfull is the talk of “breathing excercises” which I do believe in some fashion may be useful to get your mind and body relaxed – but thats IT. Notably absent from ANY discussion in the sessions was “pacing” which is widely acknowleged to be the greatest tool around to help with any energy limiting conditions including ME. What does that say about their service?
The follow up sessions (of which I believe could have been up to 5) I cut short after the second. The only thing we really discussed to help was ways to prepare food easier – buying prepared veggies etc. Of course – there was nothing there that was useful to me – they can’t really help me “make food”!!
I AM at a better stage than I have been since before my diagnosis though – but I have got to that point by myself. Pacing myself, and putting in place mitigations like my wheelchair have been the greatest changes. I cannot stress enough how the wheelchair has helped. Now when I go out – if I am going to be on my feet for longer than 15 mins I usually take the chair. Due to this I have not had time off for ME since Feb 2025 when it combined with Flu and I had around a week off.
Despite this improvement – cognitively I still find things a great challenge. By mid afternoon I can’t take anything really in and mostly do “tidying loose ends” type work and “being there” if anyone needs to call me.
I’ve already told my workplace that it’s my “intention” to retire at 60 (in just over 2 years) but it’s likely I just wont be able to afford to do that. There’s almost zero chance of retiring due to “ill health” meaning my pension would be topped up to full – as I would almost certainly need to be on some type of sickness benefit (like PIP) to even be considered for this by the West Yorkshire Pension Fund. As the government is cutting PIP and making it much harder to claim than ever before – I think this is a dead end!
I guess we will just have to see what the future holds – but I think for NHS help for my ME….. it’s going to be limited to replenishing pain meds. Currently codine for occasional use – but potentially changing to something like Gabapentin at a later date.
