First appointment

[cjp1985]

I have my first appointment next month with the cfs clinic in St Albans. Can anyone advise what to expect on my first visit so I can be prepared?

[Antony_M]

I don't have any experience with St Alban's but I have experience of Seacroft NHS CFS clinic in Leeds.

They weren't fully staffed for the whole year I went there. As a result they had no physiotherapist or pyschotherapist. The only treatment was a monthly 121 session with a therapist for an hour.

My first session was just where they confirmed that the team had reviewed my medical history and agreed to take me on as a patient. They gave me a handout and I returned a month later. It wasn't made explicitly obvious, that this was the point where I was confirmed as having ME / CFS.

The hour long therapy sessions helped, but it was essentially just the two of us taking in a room about how I was coping and the challenges I faced, it didn't get any more technical than that and when there was something more detailed needed, it came in the form of a handout.

They did not give any advice about nutrition, nor did they refer me for physiotherapy or give any help with my mobility issues. They explained that they do not assist with mobility issues such as getting a blue badge or the benefits system, or employment. As a point of irony, the staff pool car parking was by the front door of the clinic and the staff also had permits to allow them to park in disabled spaces. The instructions for my first appointment were for me to take the bus due to limited parking which I wasn't able to do, so I had to pay for a taxi.

Despite the limited service, it helped me as I'd been abandoned by friends and family and my partner was struggling to cope with my illness, so I was really on my own and I'd been off work for months and counseling would have cost money I didn't have. We did set goals and it was useful to have someone on my side.

I don't mean for this reply to seem bleak, it's just that the service I received was so limited and not the 'multi-disciplinary team' approach everyone hopes for. I wish I'd found Dr Sarah Myhill's book on CFS / ME at that time as it's more practical than the handouts.

Take care.

[cjp1985 in reply to Antony_M]

Thank you for your help! I wanted an idea of peoples general experiences so this does really help what to expect!

[nickyb21]

Hi, my CFS clinic is at James Cook University hospital in Middlesbrough.

My experience was a very good one. After my initial consultation I was placed on a course with other ME/CFS sufferers. The course lasted six wks and covered different topics each time. Each session lasted two hrs and although it was a struggle I’m glad I went if only to meet other sufferers and realise that I wasn’t going crazy.

The course covered things like diet, relaxation, managing energy levels, sleep patterns and other things. It still needs tweaking as it didn’t really delve into the illness itself very much. However I found it very helpful indeed.

The parking was a struggle but I’m lucky that the majority of time my partner was able to drop me off and on the

occasions I drove myself I tried to get there a bit earlier so that I could sit and have rests on my way to the department if I needed them.

I’m so sorry that the previous person had such a negative experience. I hope yours is a good one.

If you’re ever stuck I’m more than happy to try and help. I’ve only been diagnosed for a couple of years and don’t know a great deal but I have found that talking to others and sharing ideas and tips is so helpful.

Hope this helps and good luck!xx

[cjp1985 in reply to nickyb21]

Thank you! Mine is relatively mild in comparison to some others but then I’ve been pacing myself for a number years anyway. I think talking to others would be helpful to not feel like your going mad and people understanding that being hit like a bus feeling and extreme tiredness etc for no reason! I think the frustration is the part no one understand when you used to be able to do things you can’t do any more or at the cost of something else.