Over the next 2 years MERGE are doing a research program into young people with ME / CFS in Dundee. I went up to Dundee a few weeks ago to take part. As one of the first to go up there I thought I’d let you know what it entails. On the Tuesday morning my mum, my friend Rachel (who was coming as my control) and myself took the train up to Dundee, we had to change in Edinburgh and it took about 4 hours all together.

Once there we checked in to the hotel, and then we had the rest of the day to relax, this meant sleep for me.The rooms were very nice with fantastic views over the Quays. The hotel has a lovely swimming pool including Jacuzzi, sauna and steam room, so there’s plenty to keep you occupied. There’s also a brassiere and a restaurant, unfortunately we weren’t able to eat there as the kitchen had a flood that night, but the menu sounded tasty. As we weren’t able to eat there we got a bit worried as we weren’t sure I would be able to go round town to look for somewhere else. Fortunately the receptionist ordered us a taxi and recommended us a restaurant, so we were driven directly to the door and then picked up again, the food was lovely and we had a great evening even if it was a little late.

On the Wednesday morning we had to be at the hospital for 9 o’clock. All the researchers were very friendly and explained everything thoroughly. There is just about no physical activity needed, as most things were done lying down. Firstly you undergo a general examination, nothing invasive it’s just a simple check up. Anyone who’s ever had a DLA doctor visit them will know what I mean. Blood pressure, reflexes etc. They also take a full medical history, when you started to become ill, and what your symptoms are. It’s then followed by a blood test. I’m used to having my GP run at me from the other side of the room with what feels like a javelin, but this was totally different. They put on this cream that numbs the area so that you don’t feel a thing and I didn’t even notice that the needle had gone in. It was totally pain free.

There’s a questionnaire to fill in. Then the final thing is a test which measures your blood flow. Again its lying down and pain free. They stick two plastic disks to your forearm and they are filled with some sort of chemical liquid. A laser is then run backwards and forwards over the disks for approximately 20 minutes, you feel a slight tingling but that’s all. The tests lasted 3½ hrs, and afterwards I was quite tired.

It doesn’t take physical energy but the mental activity was difficult, this surprised me as I thought I would be used to it as I attend part time school, but it took a lot out of me. After leaving the hospital we went straight to the train station. The weekend we were there, Aberdeen had heavy snow, so all the trains were either cancelled or delayed. We just had to wait in the cold station. As I was already very tired I soon became unwell, luckily we had taken my wheelchair with us. It was decided that I was too ill to travel so we ended up having to stay another night.

The following day after a good nights sleep we managed to get a direct train home. I still haven’t fully recovered. Despite all this it was a really interesting trip and I learnt a lot. I would certainly do it again; I would however try and be more prepared for the repercussions afterwards. For anyone out there thinking about also taking part, I would certainly warn you that if you are less than about 50% possibly 60% not to attempt it. I would also recommend that you leave several hours between the end of the tests and the return journey, so that you can have a rest to recover a bit. I believe that if I had had a few hours sleep and then got a train home at about 5 o’clock I would have managed it. Anyway for those who do go, good luck and I hope you enjoy it.

All the best Ilona