Today’s post is about my experiences with the NHS ME Clinic over the past 24 months or so. I have mentioned the odd bit here and there, but thought putting it all together in one post could be a useful resource for those who are being referred themselves and would like to know what to expect. I have split this post into two parts as it’s quite long and I know that can be hard to deal with as someone with chronic illness and brain fog! Part two can be found here.
Initial Referral and Clinic Visits
I was referred to the ME Clinic relatively quickly after being diagnosed, as there is a limit to what GP’s can do to help chronic fatigue. They are better (well, a little better…!) at dealing with the pain side of things, but tend to leave the fatigue side to the experts – at least in my area of the UK (Leeds). Firstly, I was very lucky to live somewhere that has an ME Clinic, as there aren’t too many in the UK. Some people aren’t referred at all; others have to travel quite far to attend (which is a joke in itself, as often these people aren’t actually well enough to travel).
My first appointment was with a Consultant and was very much a fact-finding meeting. She took down a very detailed medical history, together with all of my symptoms at the time, what I had tried to help myself and what medications I was taking. At this point in time, I was working full-time. Not long after that, as I started to get more ill, I changed my hours to 4 days a week to try and manage my fatigue levels and attendance.
The next appointments over a 12-14 month period were with an Occupational Therapist (OT), originally in person around once every 4 to 6 weeks. As I declined in health, some of the appointments started having to be by telephone as I was not well enough to go in person. The clinic was very flexible and understanding (and are really good with cancellations, unlike most arms of the NHS). I have now switched onto home visits and no longer go in person, but I’ll talk about that a bit later on.
An OT uses assessment and treatment to develop, recover, or maintain the daily living and work skills of people with a physical, mental, or cognitive disorder. Mine is around my age if not younger, and really friendly and easy to talk to. This is great, as you have to feel able to talk to them about all aspects of your life and how it is affected by the illness. They can only help you if you are honest with them about your struggles and what you find difficult.
Initially, I found the appointments really useful. I learnt a lot about pacing, which is currently the most successful (and only really approved/trusted) method of managing ME syptoms. So what is pacing? Put very simply, pacing is taking the daily activities you need to do, be they mental (work, study) or physical (travelling, housekeeping, self-care), dividing them up into manageable portions and performing those that fit with the energy you have available for that day. The Spoon Theory is a really useful read to help understand how units of energy are managed.
It takes a loooong time to learn to pace effectively, as it basically involves un-learning all your natural responses and coping mechanisms. Finding the right balance takes a lot of trial and error, and you can’t expect it to happen overnight. You’ll have good and bad periods, and may even feel worse before you get better, but finding the activity levels you can personally handle without making yourself much more ill is really important. Some of the most useful things I learnt were to accept help, to build in regular periods of rest, not to push myself too far out of a sense of guilt, and to plan ahead to ensure I had complete rest days either side of busier days.
Once I had got the hang of pacing, the OT appointments began to be less useful. They became more like catch-up sessions. She would ask how I had been, I’d tell her, and usually we’d set a little goal (for example a few minutes of gentle stretching each day – the goals are always driven by what the patient wants to achieve and where they feel comfortable). Around this time, my health really declined and I became mostly bed/housebound. This meant that I was no longer able to consistently attend my appointments and they felt that doing them all over the phone wasn’t going to help very much.
At this point, they switched me to home visits. I will discuss my experience with home visits, setting goals and my overall experience with the ME/CFS service in tomorrow’s post. Stay tuned!
[Edited to add: find part 2 here].
If you have ME and want to know more about my experiences, please don’t hesistate to get in touch. I would love to help where possible.
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