ME, Myself and I: My trip to the local ME/CFS services and a couple of possible extra diagnoses

I think that might be my longest title yet!

I think the last time I properly went to an appointment with the local ME services was three or four years ago and then it was to see an occupational therapist to get a letter to support the fact I was too ill to work. Before that it was about nine years ago and a lot has changed in the world of ME and research since then, at least it seems it to me.

Apparently diagnoses is the plural of diagnosis, it looks a bit weird to me but I’m hoping the computer is right there. That is one good thing about autocorrect, it may be annoying sometimes but it does help when you don’t actually know what the word is and you just guess at a rough spelling of what you think it might be.

I had no idea what to expect this time, every other time I’d been to see them I’d been asked to fill in a load of forms about how I felt doing certain activities, those strongly agree to strongly disagree type things, and fill in a diary about my activities and how I felt afterwards. This time I was going in with a piece of paper with my appointment and another with a map and how to get there so I wasn’t sure what to expect, especially as they’re so full at the moment and my four month waiting list time was apparently ‘rushed’.

When we got in there, after sitting in the waiting room for about ten minutes and going in early, I think that’s a first for me and appointments, we went up to the office and talked a bit about past appointments and stuff as he had my notes from back then. I do like my GPs at the surgery I go to, I say GPs as it’s hard to get just one to see regularly, and they do recognise ME and have sent me for other tests the past few years so they’re not just putting everything under the ME blanket and dismissing other ideas but talking to someone who actually specialises in ME was very different. It was strange going in and not knowing more about the illness than the doctor on the first appointment!

We did get some good out of the visit, they may have worked out my weird light headed dizzy feelings and if I can get rid of that a bit I think it’ll mean I can do more physically, it’s just very hard to want to leave the house when you feel faint after standing up or sitting in an uncomfortable chair for too long. The one thing he thinks I have is PoTS (Postural Tachicardio Syndrome) where my blood isn’t circulated right when I’m stood up and the other is some form of hypoglycaemia where my blood sugar goes low a few hours after I eat. I haven’t actually done much looking into these as I had to get up early and I’m exhausted today after all that but I’m definitely going to look into it a bit more. Apparently PoTS is fairly common in people with ME, it seems to be quoted as anywhere between 20% and 50% of people with ME probably have it depending on which website you look at.

This might sound weird but it’s a bit like when I was first diagnosed with ME, I can finally say that I know it’s not anxiety and have people believe me. I knew it wasn’t when I was anxious, it was when I was out doing things that it happened more but it wasn’t because I was anxious about doing them. It also means that when I feel faint and light headed or shaky I know there’s a cause, at least I hope that my GP backs up what the specialist said, and that cause isn’t dangerous as such, it’s just something else I have to learn to control.

In the end it was decided I wouldn’t go back and see them as all they can really help with is managing the symptoms with pacing and graded exercise and I’m already doing both, or at least planning to increase my exercise when I’m less dizzy, and there wasn’t really much they could do for me. In some ways this is good to hear; I’m doing it right and I’ve not made some huge mistake that’s making my health worse, but in another way it doesn’t feel so great as it means there isn’t one simple thing I can change in my routine to suddenly improve my symptoms. It’s nothing they’ve done wrong, I really liked talking to them and they seem really helpful as the woman on the phone when I confirmed my appointment said I could email if I had any questions which is always reassuring if I really needed help.

I know this isn’t a service that’s probably available everywhere in the UK, and I don’t know about other countries’ health services to comment on them, but if you have access to an ME service I would definitely say to ask your doctor about referring you, even if the waiting list is long and you think you’ve got it all figured out by the time you actually get there. It’s annoying that ME isn’t one of those illnesses that GPs know well but then with every health problem they have to recognise they can’t be experts in everything so input from someone who is can make a difference if you have access to it.

I hope this all makes sense, my brains a bit foggy today but I wanted to do a post on this now rather than wait a week and forget bits. Though I probably have forgotten some things, I might do another post sometime in the next few days if I think of them.

Hope you guys are having a good week, any questions or suggestions for the blog feel free to comment or email me at I really need to get that contact page set up.

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